Okay, before I get into the Saga of the Bathing System, let me update you on Soren.
It's been over a month since I last wrote. At that time, Soren was having some big problems with daily seizures. We tried some stuff that really didn't seem to work and then all of the sudden, Soren's seizures normalized to just 1 per week.
But before we got too cocky, they came back. Most of March and early April he was having daily seizures. During Spring Break, Soren was in a great mood one day, but then had a seizure one evening and another the next morning. He was wiped out and cranky the rest of the day (not that I blame him). That "double whammy" really took its toll.
I increased his morning meds a couple weeks ago and have now increased his evening meds, so I'm crossing my fingers that this helps. In between the seizures, he's such a happy, engaged, silly boy. And if the seizures are small enough, he's bouncing back quickly. We'd just really like to finally get rid of these things.
Now, onto the bathing system. Soren cannot sit up alone in the tub, so he has a Rifton bath seat which has done us well for the past 8 years (seriously, he got it when he was 2). With this seat, I lift Soren from our bed to the bathroom, put him on the seat, bathe him, lift him again, and put him back on the bed. Now, this is all well and good when you're dealing with a little boy. However, 3 years ago, Soren started getting big and I'm only a wee 5 feet tall.
So, in 2011, we started working on getting a bathing system. After doing research, we decided we needed a system where I could use our Liko Lift to put Soren on a bathing seat that's on wheels, roll him into the bathroom, click the seat over into the tub, bathe him, click him back, and then use the lift to move him again once he was dry and ready.
We picked one out, submitted it to our insurance, they approved it, and the seat was delivered. Only one problem. The seat didn't work in our bathroom! Our tub is blocked a bit by the cabinet and, ugh, it just didn't work. So they took it away and I did more research. There was one piece on that chair that was causing problems. So I found another that didn't have this piece.
Once again, we submitted to our insurance. But, in the time between Seat 1 and Seat 2, our insurance changed the rules on Durable Medical Equipment (DME). They no longer considered bathing systems for the disabled DME. I have no idea what a bathing system is if it isn't that. But, nonetheless, we were denied.
Because he is severely disabled, Soren has MediCal. So, the next step was applying to MediCal to see if they would cover the seat. (Keep in ming that this seat is priced at $3,689.) But MediCal is hardly in any rush to approve such things. In fact, they wanted me to apply to CCS (California Children's Services) to pay for it instead. The only hitch with this is that Soren's CCS case had been closed about 3 years earlier because he'd "aged out" or something (I'm not sure, I'm constantly baffled).
But MediCal insisted, so I persisted. I finally got CCS to reopen Soren's case. I had to give them Soren's most up-to-date information, which includes his medical diagnosis. Well, this can be a bit of a problem. Soren's got a lot of things going on. I consider his biggest problem to be Epilepsy, but CCS does not consider a seizure disorder as a worthy condition to warrant medical equipment. Never mind that it's the seizures that have caused his global developmental delay. They want big flashy diagnoses like Cerebral Palsy and Autism. Well, as luck would have it, Soren also has these on his list of diagnosis, so I gave them the doctors' reports and hoped for the best.
Unfortunately, after lots of hemming and hawing, CCS denied Soren this piece of equipment. So, I went back to MediCal and told them that Soren had been denied. "Why?" they asked. I explained that, as far as I understood, it was because his diagnosis didn't fit the bill. "Why?" they asked. "I don't know," I replied truly not knowing why but knowing that I just wanted to move forward with this.
By now, I'd actually developed a nice relationship with the Manager at MediCal. She was also helping me deal with the monthly denial letters I was getting from MediCal for Soren's incontinence/diapering supplies. Thanks to her efforts, she made sure that I didn't have to wrap Soren's behind in old rags by putting the right information into the computer so that we got an automatic approval.
So, she pushed the paperwork through and got us an approval for the bathing system. Huzzah! After 2 1/2 years the nightmare was about to end! My back would be saved! All would be right with the world! Except...that didn't happen. When they delivered the bath seat, it was the kind that sits in the tub for old people. You know, just a plastic and metal chair? Before they guy could even take the plastic off, I told him to put it back in the car. I wasn't accepting it. I then called the Manager. She said she'd gotten a note that I'd refused the seat. I admitted this was true. Soren could never use this seat. Soren cannot step into a tub and sit in a seat. I wish he could! But sadly, this was not the seat we were looking for.
I re-sent her the information on the seat that we wanted. She saw the price tag of $3,689 and realized that this item was WAY out of MediCal's allotted amount. (I think the seat they sent was $150.) I was so bummed. I thought I was close to the finish line, but it got moved on me yet again.
Now, at many points during this over 2 year ordeal, my husband (seeing my immense frustration and listening to my manic rants) suggested that we save up the money and buy the seat ourselves. But I was in too deep by this point. I'd written too many letters, made too many calls, and harassed too many doctors. And it wasn't like I was asking for the moon. This is an item that is medically necessary for my severely disabled kid!
In fact, Soren has a friend that got the exact seat we were asking for right away--no hassle--from CCS. The difference is the diagnosis. This boy's diagnosis fits their magic criteria. But if these people actually met Soren, they'd see that he is much more disabled. He just doesn't have the appropriate diagnosis to match.
But I wasn't ready to give up. I was going to get this chair! And I had one more option: The Regional Center.
In California, there is an agency called the Regional Center that supports children and adults with developmental disabilities. Soren has been with the Lanterman Regional Center since he was a baby and they have provided amazing things for him. Therapies, camps, equipment, and they even helped pay for our ramp van. Way back when this bath seat saga started, I asked Soren's Case Manager if the Lanterman could pay for the chair. She said she could submit the paperwork and see. The only problem was, Lanterman is the last resort in these cases. I had to have letters of denial from every other possible source before I could submit my request.
So, when the Manager at MediCal said that they couldn't pay for the seat, I excitedly said, "Fine! Can I just get a letter of denial? That's ALL I need!" I think she must have heard that I was at my wit's end (and she was probably sick of talking to me). I got the letter the next week.
I submitted a pile of paperwork to Lanterman. By now I had acquired a letter from Soren's pediatrician and a letter from his neurologist, both stating why this piece of equipment was necessary. (Originally I only had the letter from the pediatrician, which should have sufficed. But either MediCal or CCS requested a letter from the neurologist, which is rather unusual.) I had the letter of denial from our insurance, CCS, and now MediCal. I had info on the piece of equipment with the price. I sent it in and at the end of 2012, I was told it was approved! Huzzah! Happy dancing all around!
But it's never that simple. Soren's Case Manager said that a Rep from the equipment company that they worked with needed to come out and assess if this was the best seat for Soren. I was totally fine with that. Anything to move this forward. However, in doing that, we discovered that the Omni seat that I had so desperately been pining for wasn't actually the best seat for Soren. The Rep recommended another seat. It positioned Soren much more safely, so even though it's the ugliest piece of medical equipment I've ever seen, we had the Rep submit the quote for that piece. The trouble is, it was MORE expensive! It came in at a whopping $4,875!
Well, then Lanterman had to get some other companies to give quotes. Which means I had to schedule another visit with another vendor--who didn't show up during his allotted time. (I'm a busy lady, people! And he was actually busy with another client. But still.) But he did come in with a cheaper quote, bringing the price down to $4,368.
Now, remember, the price for the original, approved seat was $3,689. The price difference is $679. And Lanterman was now questioning whether to pay for the seat at all. They want to know why it's this seat instead of the other seat. I noted that it's not because it's visually pleasing. It's because it's safer and more appropriate for my kid. So I proposed that if they cover the amount that was already approved, we'd cover the difference. That sounds fair, right?
Currently, I am waiting for the answer to this proposal. Soren is currently 9 1/2 years old, approximately 52" and 54 lbs. I'm optimistic that we will get this seat before he outgrows me. Hopefully this saga will soon be over and we will finally have this Bathing System!
Amy
Thursday, April 11, 2013
Monday, February 04, 2013
Troubled Waters
Soren has had a really rough start of the year. For some inexplicable reason his seizures have increased greatly. We'd gotten him down to 3 per month. But in January he had 16 and so far in February he's already had 10!
When I saw that things were increasing, we went to see his neurologist in January. We did a little adjustment of his meds in the hope that it would control things better. But instead, the nature of his seizures seem to be changing. Usually he has Tonic-Clonic (aka Grand Mal) seizures that last about 4 minutes. For those of you not versed in seizure terminology, here is the definition of a Tonic-Clonic from the Epilepsy Foundation:
Generalized tonic-clonic seizures are the most common and the best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).
During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of lips, nail beds, and face. Breathing typically returns during the clonic (jerking) phase, but it may be irregular. The clonic phase usually lasts less than a minute.
As you can tell from the description, they are rather horrible. But now Soren is having lots of quick Tonic (stiffening) seizures that last about 2 seconds. These are less scary to watch and are over in a flash. With Tonic-Clonics, Soren passes out for a long time afterwards. With the Clonics, he's bouncing back quicker and seems less out of sorts.
I only recently did the last adjustment on his meds, so I am trying to be patient. But this is difficult when it's my child that is suffering through the process.
We have another appointment next Monday so hopefully we'll come up with different mode of action if things are still not going well.
Amy
When I saw that things were increasing, we went to see his neurologist in January. We did a little adjustment of his meds in the hope that it would control things better. But instead, the nature of his seizures seem to be changing. Usually he has Tonic-Clonic (aka Grand Mal) seizures that last about 4 minutes. For those of you not versed in seizure terminology, here is the definition of a Tonic-Clonic from the Epilepsy Foundation:
Generalized tonic-clonic seizures are the most common and the best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).
During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of lips, nail beds, and face. Breathing typically returns during the clonic (jerking) phase, but it may be irregular. The clonic phase usually lasts less than a minute.
As you can tell from the description, they are rather horrible. But now Soren is having lots of quick Tonic (stiffening) seizures that last about 2 seconds. These are less scary to watch and are over in a flash. With Tonic-Clonics, Soren passes out for a long time afterwards. With the Clonics, he's bouncing back quicker and seems less out of sorts.
I only recently did the last adjustment on his meds, so I am trying to be patient. But this is difficult when it's my child that is suffering through the process.
We have another appointment next Monday so hopefully we'll come up with different mode of action if things are still not going well.
Amy
Wednesday, January 09, 2013
Social Skills Group
Once a week Soren goes to Social Skills Group. The purpose of the group as a whole is for these boys to socially interact with each other, take turns, share, and make choices together.
For the past year it's been Soren and two other boys who are a little older than him. These two boys also have developmental disabilities, but overall are able to communicate much better than Soren. They can do some sign language, give verbal cues, and are both really good with assistive devices like iPads and DynaVox.
Soren was the third boy to come to this group. Because the other two boys knew each other, it took a little bit for Soren to find his groove. Soren can be a bit of a stinker and pretend to fall asleep when things aren't interesting. And the other boys made it a point to try and wake him up! Soon enough Soren stopped playing possum and started participating.
I brought Soren's iPad in so that he could "tell them" his Soren Update by touching the iPad and activate my pre-recorded voice. From what I've heard, this is one of Soren's favorite activities during SSG.
Now, juggling the needs of 3 disabled boys must be challenging for these two therapists. These boys can be pretty demanding. When the other parents and I return to class, I'm constantly impressed with the updates on what they did during their hour together.
Because of Winter Break, Soren had 2 weeks off from his Social Skills Group. And I think he was really missing it. 3 days before school started again, Soren started getting really cranky. As much as we tried to do fun stuff, I think he was missing his routine of school and seeing his friends.
Yesterday afternoon I got an email from Soren's teacher saying that Soren had a great day at school. He was alert and focused. I was really happy about this, but then feared he'd be exhausted for SSG. I kept briefing Soren, saying that we were going to go see his friends. And when I wheeled him in, Soren was bright-eyed and smiling.
And to my surprise, there was a new boy in the group. This boy had a huge smile and if Soren's in the right mood, he responds really well to this energy (much like all of us). I worried a bit for the therapists now trying to manage 4 boys, but I figured they'd come get us if there was a problem.
Well, when we came back, those boys were all in a great mood. Soren smiled and laughed through the entire session. The therapists noted that it was actually easier having this new boy in the mix. It's like he balanced the group out. And Soren took to him, so he's clearly a good egg!
On the way home, Soren chatted away in his "Soren Speak" and though I don't understand a word, I know he had a good time. Through Soren's visual cues, it was clear that he considers these boys his friends. He missed them when they were gone and was happy to see them again. And he got to add another friend to the group which clearly made his day.
For the past year it's been Soren and two other boys who are a little older than him. These two boys also have developmental disabilities, but overall are able to communicate much better than Soren. They can do some sign language, give verbal cues, and are both really good with assistive devices like iPads and DynaVox.
Soren was the third boy to come to this group. Because the other two boys knew each other, it took a little bit for Soren to find his groove. Soren can be a bit of a stinker and pretend to fall asleep when things aren't interesting. And the other boys made it a point to try and wake him up! Soon enough Soren stopped playing possum and started participating.
I brought Soren's iPad in so that he could "tell them" his Soren Update by touching the iPad and activate my pre-recorded voice. From what I've heard, this is one of Soren's favorite activities during SSG.
Now, juggling the needs of 3 disabled boys must be challenging for these two therapists. These boys can be pretty demanding. When the other parents and I return to class, I'm constantly impressed with the updates on what they did during their hour together.
Because of Winter Break, Soren had 2 weeks off from his Social Skills Group. And I think he was really missing it. 3 days before school started again, Soren started getting really cranky. As much as we tried to do fun stuff, I think he was missing his routine of school and seeing his friends.
Yesterday afternoon I got an email from Soren's teacher saying that Soren had a great day at school. He was alert and focused. I was really happy about this, but then feared he'd be exhausted for SSG. I kept briefing Soren, saying that we were going to go see his friends. And when I wheeled him in, Soren was bright-eyed and smiling.
And to my surprise, there was a new boy in the group. This boy had a huge smile and if Soren's in the right mood, he responds really well to this energy (much like all of us). I worried a bit for the therapists now trying to manage 4 boys, but I figured they'd come get us if there was a problem.
Well, when we came back, those boys were all in a great mood. Soren smiled and laughed through the entire session. The therapists noted that it was actually easier having this new boy in the mix. It's like he balanced the group out. And Soren took to him, so he's clearly a good egg!
On the way home, Soren chatted away in his "Soren Speak" and though I don't understand a word, I know he had a good time. Through Soren's visual cues, it was clear that he considers these boys his friends. He missed them when they were gone and was happy to see them again. And he got to add another friend to the group which clearly made his day.
Monday, October 08, 2012
Rough Waters
For some inexplicable reason, Soren has had an increase in seizures September and October. It's incredibly frustrating because we are doing everything right and when he's not seizing, Soren is so happy and engaged. So when the seizures hit, it feels incredibly cruel.
Often these seizures happen upon his waking up in the morning. We'll hear him cry out and he'll seize having a Tonic Clonic seizure for a good 4 minutes.
Because this was happening too often, we increased his evening dose of Lamictal last Monday after getting the okay from his neurologist. Since Soren has been on the same dose of Clobazam and Lamictal for quite a while now, it seemed logical that he might have outgrown the dose (the boy has packed on a solid 6 pounds recently).
This Saturday, Soren was happy and smiling. I was away the previous weekend so I think he was just glad to have everyone at home. That afternoon, we planned to go to a Music Festival, figuring it's something we all could enjoy. But right before we left, Soren had another massive seizure and then was wiped out. We still went to the festival. Soren just slept through most of it. And when he woke up, he looked painfully hung over. So we headed home.
I tried not to get too frustrated by the Lamictal not doing the trick yet because it needs to build up in his system. But then, after waking up smiley and babbling this morning, Soren had another big seizure. It's just the most heartbreaking thing to watch and so horrible as a parent to not be able to fix it. Before the bus picked him up, he was awake again, a much braver person than me.
So we'll continue to hope that the Lamictal will kick in. Otherwise, we will once again try something else.
Amy
Because this was happening too often, we increased his evening dose of Lamictal last Monday after getting the okay from his neurologist. Since Soren has been on the same dose of Clobazam and Lamictal for quite a while now, it seemed logical that he might have outgrown the dose (the boy has packed on a solid 6 pounds recently).
This Saturday, Soren was happy and smiling. I was away the previous weekend so I think he was just glad to have everyone at home. That afternoon, we planned to go to a Music Festival, figuring it's something we all could enjoy. But right before we left, Soren had another massive seizure and then was wiped out. We still went to the festival. Soren just slept through most of it. And when he woke up, he looked painfully hung over. So we headed home.
I tried not to get too frustrated by the Lamictal not doing the trick yet because it needs to build up in his system. But then, after waking up smiley and babbling this morning, Soren had another big seizure. It's just the most heartbreaking thing to watch and so horrible as a parent to not be able to fix it. Before the bus picked him up, he was awake again, a much braver person than me.
So we'll continue to hope that the Lamictal will kick in. Otherwise, we will once again try something else.
Amy
Sunday, August 12, 2012
CommuniCamp
The past two weeks, Soren attended a day camp called CommuniCamp. It's for non-verbal "kids" (ages ranged from 5-24) to help teach them how (or build upon their existing skills) to communicate with iPads and Talkers (switch activated recording devices).
It was truly remarkable. There were a variety of kids in there with serious developmental disabilities. In the past, I'm sure it would have been easy to just "write them off" figuring they have nothing to say. But these kids understand far more than folks give them credit for. It's just that they are fighting through other challenges their bodies have given them--sensitivity to noise, stimming (uncontrollable repetitive body movement), spasticity or hypertonia, and seizures. Despite all these challenges, a lot of their brains are quite "in tact."
And through the hard work of these kids' parents, teachers, and therapists, these kids have developed ways to communicate that were truly inspiring.
One young woman has a talker that she wears around her neck. She can page through the selections and ask questions or give answers. Two campers are able to activate a switch on a Talker with their foot to answer questions. Two others can activate their iPad via a head switch.
The two teachers at camp--Robbie and Cindy--took the skills that these kids had and built upon them in these intensive sessions from 9:30-2:00. The kids were never talked down to and they were asked to push themselves. And every kid delivered.
They did a variety of activities. Challenging games like "Minute to Win It" where a timer was started by one child and then another child had to see how many times he or she could press a "counting button" before the buzzer went off.
There was also "The Amazing Valenti." Here kids were able to show off their abilities answering questions. One young woman has a Talker that has two buttons on it--one labeled 1 and the other 2. Robbie would record two answer options for each button. For instance "Plumber" and "Florist." She would then ask the girl questions like, "Your garbage disposal is clogged. Who do you call? A Plumber or a Florist?" And despite the fact this girl seemed not to listen and appeared too distracted by all her stimming, she answered the questions right every time! She really was The Amazing Valenti!
We've been working a lot with Soren at home and at school on his iPad, trying to get him to touch the screen to activate games, turn pages, etc. And Soren has really improved on his. He did a great job during the Lemonade Stand activity activating his iPad. We recorded lots of phrases asking people to come buy lemonade. Every time Soren touched the iPad, the voice was activated and he was doing it a lot on his own. On the final day of camp, Soren performed in a play and did a fantastic job playing the Duck, hitting his iPad perfectly when he got his cue!
But I was inspired when I saw the boy at camp that had the head switch. At times, touching things with his hands is overwhelming for Soren. It can take a lot of prompting and hand over hand encouragement. And sometimes he really just wants to wring his hands or put them in his mouth.
So, at camp, we tried having him use his head to activate a switch called a Step-by-Step talker and I was really impressed at how Soren did. He did a great job in Minute to Win It using his head, counting up to 8! Now, this could have been complete coincidence or involuntary. After all, Soren moves his head around a lot. But it's one of those things that if we can work with him, we might be able to make it purposeful. We could start on a very basic level and then, if it worked, build up to getting a button that could activate his iPad.
It's a long road and these past 2 weeks only started the ball rolling. I was very inspired by all these kids that showed me that they have a lot to say. I know Soren does too. And now I know about more tools to try and help him get there.
It was truly remarkable. There were a variety of kids in there with serious developmental disabilities. In the past, I'm sure it would have been easy to just "write them off" figuring they have nothing to say. But these kids understand far more than folks give them credit for. It's just that they are fighting through other challenges their bodies have given them--sensitivity to noise, stimming (uncontrollable repetitive body movement), spasticity or hypertonia, and seizures. Despite all these challenges, a lot of their brains are quite "in tact."
And through the hard work of these kids' parents, teachers, and therapists, these kids have developed ways to communicate that were truly inspiring.
One young woman has a talker that she wears around her neck. She can page through the selections and ask questions or give answers. Two campers are able to activate a switch on a Talker with their foot to answer questions. Two others can activate their iPad via a head switch.
The two teachers at camp--Robbie and Cindy--took the skills that these kids had and built upon them in these intensive sessions from 9:30-2:00. The kids were never talked down to and they were asked to push themselves. And every kid delivered.
They did a variety of activities. Challenging games like "Minute to Win It" where a timer was started by one child and then another child had to see how many times he or she could press a "counting button" before the buzzer went off.
There was also "The Amazing Valenti." Here kids were able to show off their abilities answering questions. One young woman has a Talker that has two buttons on it--one labeled 1 and the other 2. Robbie would record two answer options for each button. For instance "Plumber" and "Florist." She would then ask the girl questions like, "Your garbage disposal is clogged. Who do you call? A Plumber or a Florist?" And despite the fact this girl seemed not to listen and appeared too distracted by all her stimming, she answered the questions right every time! She really was The Amazing Valenti!
We've been working a lot with Soren at home and at school on his iPad, trying to get him to touch the screen to activate games, turn pages, etc. And Soren has really improved on his. He did a great job during the Lemonade Stand activity activating his iPad. We recorded lots of phrases asking people to come buy lemonade. Every time Soren touched the iPad, the voice was activated and he was doing it a lot on his own. On the final day of camp, Soren performed in a play and did a fantastic job playing the Duck, hitting his iPad perfectly when he got his cue!
So, at camp, we tried having him use his head to activate a switch called a Step-by-Step talker and I was really impressed at how Soren did. He did a great job in Minute to Win It using his head, counting up to 8! Now, this could have been complete coincidence or involuntary. After all, Soren moves his head around a lot. But it's one of those things that if we can work with him, we might be able to make it purposeful. We could start on a very basic level and then, if it worked, build up to getting a button that could activate his iPad.
It's a long road and these past 2 weeks only started the ball rolling. I was very inspired by all these kids that showed me that they have a lot to say. I know Soren does too. And now I know about more tools to try and help him get there.
Thursday, June 07, 2012
Much Needed Update
Soren and I went to see his neurologist and dietician 3 weeks ago. And while I was pleased that he was averaging 4 to 6 seizures a month, they wanted better.
The first indicator that a change needed to be made was his weight. Soren has been weighing in at 48 lbs. for quite a while. And he's been stuck at 48 inches. But, when we measured him today, he was at 50 inches, but still at 48 lbs. This took him from 50th percentile of height and weight to 25th. His dietician was concerned that he wasn't gaining weight.
She wanted to bump him up 100 calories on his liquid diet. I was fine with that. It just means more Ketocal in the mix. But then she ALSO wanted to add a 100 calorie "real food" snack. She was concerned that Soren wasn't getting enough food by mouth, and eating by mouth is an important skill to keep up. And while I totally agree with her, I told her my frustration with feeding him and doing the diet because you have to get every bit in. And when Soren doesn't want to eat, he just dribbles it out. So I have to keep scooping it up and re-feeding it to him. Soon it becomes a big, spit-laden mess.
So we struck a deal. The snack is "bonus" food. Get as much as we can into him. If Soren's not in the mood for a snack, just feed him what he's interested in and move on. This really alleviated my anxiety about the snack. And Soren has REALLY been enjoying it (most of the time). The hope was that adding these 200 calories would 1.) help him gain weight and 2.) help control seizures.
To further aid in the seizure control, they also wanted me to put Soren back on Carnitor. Now, Soren was on Carnitor back when we started the diet originally. I had to crush up these fishy smelling pills and feed it to him with is food. Needless to say, Soren was not a fan of this nastiness. So, I discontinued giving it to him. But now that we have the G-tube, I could give it to him easily by injecting it!
I started him on a half dose, 3 times a day on a Tuesday. Then Soren--and everything coming out of Soren--started smelling fishy by Friday. He had a big seizure on Friday. Next he got REALLY cranky. That Saturday, Soren was clearly having discomfort. He had another big seizure in the morning. So, after giving him his morning dose, I decided to pause on the Carnitor. Especially after I read that the side effects can be stomach pains and nausea! He had another large seizure that evening. But on Sunday he was on the mend and by Monday he was his happy self again.
Thus, no more Carnitor. It doesn't agree with Soren's system to the point of giving him seizures. That's counter productive! But our boy is back, doing hard work, eating his snack, happy and smiling!
Amy
The first indicator that a change needed to be made was his weight. Soren has been weighing in at 48 lbs. for quite a while. And he's been stuck at 48 inches. But, when we measured him today, he was at 50 inches, but still at 48 lbs. This took him from 50th percentile of height and weight to 25th. His dietician was concerned that he wasn't gaining weight.
She wanted to bump him up 100 calories on his liquid diet. I was fine with that. It just means more Ketocal in the mix. But then she ALSO wanted to add a 100 calorie "real food" snack. She was concerned that Soren wasn't getting enough food by mouth, and eating by mouth is an important skill to keep up. And while I totally agree with her, I told her my frustration with feeding him and doing the diet because you have to get every bit in. And when Soren doesn't want to eat, he just dribbles it out. So I have to keep scooping it up and re-feeding it to him. Soon it becomes a big, spit-laden mess.
So we struck a deal. The snack is "bonus" food. Get as much as we can into him. If Soren's not in the mood for a snack, just feed him what he's interested in and move on. This really alleviated my anxiety about the snack. And Soren has REALLY been enjoying it (most of the time). The hope was that adding these 200 calories would 1.) help him gain weight and 2.) help control seizures.
To further aid in the seizure control, they also wanted me to put Soren back on Carnitor. Now, Soren was on Carnitor back when we started the diet originally. I had to crush up these fishy smelling pills and feed it to him with is food. Needless to say, Soren was not a fan of this nastiness. So, I discontinued giving it to him. But now that we have the G-tube, I could give it to him easily by injecting it!
I started him on a half dose, 3 times a day on a Tuesday. Then Soren--and everything coming out of Soren--started smelling fishy by Friday. He had a big seizure on Friday. Next he got REALLY cranky. That Saturday, Soren was clearly having discomfort. He had another big seizure in the morning. So, after giving him his morning dose, I decided to pause on the Carnitor. Especially after I read that the side effects can be stomach pains and nausea! He had another large seizure that evening. But on Sunday he was on the mend and by Monday he was his happy self again.
Thus, no more Carnitor. It doesn't agree with Soren's system to the point of giving him seizures. That's counter productive! But our boy is back, doing hard work, eating his snack, happy and smiling!
Amy
Monday, April 23, 2012
Vote for Trynity!
This month I am asking folks visiting Soren's blog to Vote for Trynity!
Soren's friend and classmate Trynity is in need of an accessible van so that she can be transported in her wheelchair from home to school to therapy. To help achieve this goal, I have made a video and submitted it to a contest in the hope of winning her family a van.
But in order to do this, we need your votes! Go to:
http://www.nmeda.com/mobility-awareness-month/heroes/california/glendale/1502/trynity-roberts
(Sorry it doesn't actually link. Just cut and paste. Blogger changed their format and it totally sucks now.)
There you can watch the video and then Vote for Trynity!
If you put in Promo Code 889, we will get 5 votes instead of 1 vote. So put in the code!
Thanks so much for your help!
Amy
Saturday, March 03, 2012
MIC-KEY, KETO, and LAUGHS
Soren got his MIC-KEY button put in a week ago and I LOVE this "upgrade" in the G-Tube experience. Now instead of a 6 inch tube sticking out of his belly (which made me very nervous) he has this small little port. When it's time to feed Soren, I pop the port open, attach a tube that locks in (yay!) and do the feeds. It's quite slick. I'm still keeping Soren in the binder around his belly because I'm afraid Soren will rub his belly and accidentally pull out the button. I know how to put a new one in, I'd just rather avoid it!
And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!
But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.
Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!
All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!
Nice to have our happy Soren back and better than ever!
Amy
And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!
But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.
Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!
All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!
Nice to have our happy Soren back and better than ever!
Amy
Monday, January 30, 2012
G-Tube 1 Month + Update
Hey all,
Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.
And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.
I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"
He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.
On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.
That's it!
Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.
And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.
I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"
He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.
On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.
That's it!
Tuesday, December 27, 2011
G-Tube 1 Week Update
So I was going to write yesterday about how great everything has been going. Soren had been getting more and more comfortable, recovering from his surgery. I was getting more and more adept and giving him his feeds through the G-tube. Why, in 5 days, I could crimp, flush, and feed with this tube like a master. (Those of you who know G-tube language get what I mean.) In fact, I could see how this was going to make my life significantly easier. I could do the feeds by myself, no sweat!
We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!
But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.
Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.
But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.
Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?
After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.
The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.
So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.
And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.
So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.
Amy
We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!
But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.
Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.
But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.
Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?
After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.
The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.
So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.
And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.
So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.
Amy
Wednesday, December 21, 2011
G-Tube Update
Yesterday was really rough for Soren. Lots of pain from the surgery site. So he was getting regular doses of morphine, which seemed to help briefly.
And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.
He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.
With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.
Here he is happily watching Cars. Next up, Kung Fu Panda! Amy
And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.
He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.
With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.
Here he is happily watching Cars. Next up, Kung Fu Panda! Amy
Friday, December 16, 2011
Thanks for the Donations
Hello everyone,
I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.
I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.
But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.
Thank you so very much for your kindness. It has meant the world to us and our sweet boy.
Amy
I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.
I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.
But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.
Thank you so very much for your kindness. It has meant the world to us and our sweet boy.
Amy
Monday, October 17, 2011
Ketogenic Diet: One Year
It's been a little over a year since Soren started the Keto Diet. And I must say, it's been totally worth the work and I've actually gotten good at the whole measuring, heating, and mixing of the foods.
As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.
Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.
The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.
Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!
And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.
AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.
Amy
As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.
Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.
The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.
Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!
And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.
AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.
Amy
Friday, August 26, 2011
End of Summer Update
It has been a busy summer and, thus, I have not gotten around to posting.
The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.
June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.
However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.
Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?
July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)
Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!
August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!
The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.
One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.
The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.
School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.
Amy
The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.
June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.
However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.
Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?
July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)
Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!
August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!
The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.
One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.
The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.
School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.
Amy
Friday, June 03, 2011
Keto through Colds
Hey all,
Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!
Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!
Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)
But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.
We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)
A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!
And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.
All in all, though, Soren is doing great and has been quite a trooper through a tough time.
Amy
Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!
Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!
Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)
But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.
We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)
A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!
And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.
All in all, though, Soren is doing great and has been quite a trooper through a tough time.
Amy
Sunday, April 10, 2011
Keto Update: 7 Months
Soren is going in for his 7 Month Keto Check-up tomorrow, so I figured it was about time I did another update!
The great news is that Soren is continuing to do fantastic on the diet. When we decreased his calories to 1000/day, we got his seizures down to 2-3 a week. These seizures usually happened on Sunday and Monday, which indicated to me that they were triggered when Soren wasn't burning as many calories as he did at school (and then he was still ramping up on Monday). I even tried to increase his activity on the weekend, but I just couldn't get him as active as he is at school.
His Keto dietitian gave me the okay to drop Soren down another 100 calories bringing him to 900 a day. This meant adjusting all his menus, but it was totally worth it. Soren had 2 weeks without any seizures and then had one last Saturday. But now he has gone another week without any. So clearly this drop in calories has made him more ketotic. And with deeper ketosis, we have better control!
Because of the decrease in seizures, Soren is continuing to get more expressive. He is now making amazing noises that he never did as a baby. He's experimenting with his voice and really working on communicating. If only we understood Soren Speak!
Another bonus is we are getting smiles and laughs back again. He seems to give much more at school than at home. But even we've gotten a few good rounds of giggles recently.
My next goal is to get Soren off Depakote. He was on 3 pills twice a day and I've gotten him down to 2 twice a day. We'll see what his neurologist says tomorrow, but I'm hoping over the next 4 months I can get rid of it completely! Amy
The great news is that Soren is continuing to do fantastic on the diet. When we decreased his calories to 1000/day, we got his seizures down to 2-3 a week. These seizures usually happened on Sunday and Monday, which indicated to me that they were triggered when Soren wasn't burning as many calories as he did at school (and then he was still ramping up on Monday). I even tried to increase his activity on the weekend, but I just couldn't get him as active as he is at school.
His Keto dietitian gave me the okay to drop Soren down another 100 calories bringing him to 900 a day. This meant adjusting all his menus, but it was totally worth it. Soren had 2 weeks without any seizures and then had one last Saturday. But now he has gone another week without any. So clearly this drop in calories has made him more ketotic. And with deeper ketosis, we have better control!
Because of the decrease in seizures, Soren is continuing to get more expressive. He is now making amazing noises that he never did as a baby. He's experimenting with his voice and really working on communicating. If only we understood Soren Speak!
Another bonus is we are getting smiles and laughs back again. He seems to give much more at school than at home. But even we've gotten a few good rounds of giggles recently.
My next goal is to get Soren off Depakote. He was on 3 pills twice a day and I've gotten him down to 2 twice a day. We'll see what his neurologist says tomorrow, but I'm hoping over the next 4 months I can get rid of it completely! Amy
Sunday, January 23, 2011
Keto Update: 4 months +
I have a calendar where we mark how many seizures has each day. And there was a definite increase in December compared to the prior months on the diet. Still, it was less than before we even started.
Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.
So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)
At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.
Now, less ketosis means less seizure control. So finding out the cause is REALLY important!
But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!
The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)
I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.
The solution? Drop his calories another 100.
And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.
I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.
So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!
Amy
Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.
So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)
At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.
Now, less ketosis means less seizure control. So finding out the cause is REALLY important!
But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!
The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)
I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.
The solution? Drop his calories another 100.
And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.
I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.
So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!
Amy
Monday, December 27, 2010
Keto Update: 3 1/2 Months
Sorry for the terrible delay in this update. I think I kept waiting for things to settle down with the diet and Soren's seizures, but since they don't seem to be, I better do an update on the current state of things!
Soren is doing fine on the diet, but his seizures have increased compared to that wonderful 2 weeks without any activity. He's having 1-2 a day, ranging from very mild to big whompers. Still, it's less than he was having prior to the diet, so that is good. And he seems to recover quicker than before, which is also good.
And while we don't have the seizure control we'd been hoping for, Soren continues to be much more happy and alert. He's making lots of interesting noises, really making use of his voice. We get more little smiles and he is taking fewer cat naps. So we still feel that the benefits of the diet are outweighing the inconvenience.
I think the trickiest factor in full seizure control is making sure Soren eats and drinks every bit of the diet. There are days where he'll eat just fine, but then he won't drink the cream at the end of his meal. Without drinking this, he isn't getting a fully balanced Ketogenic meal. And without this, seizures are more likely to occur (which is what we are witnessing).
However, there are two ways to get a fully balanced keto meal into him. Through the KetoCal shakes and through a special Egg Nog recipe (heavy cream, egg beaters, and vanilla). Whether he drinks one drop or the whole bottle, eat sip is Ketogenically balanced. So, since Soren is on Winter Break from school, I've decided to try an experiment. I'm going to put Soren on an all-liquid, fully balanced Keto Diet to see if we get better seizure control.
The only hitch I can see with this is that Soren will get bored with these two meals of Keto shakes and Egg Nog. The good thing about the shakes is that I mix them with Powerade Zero, which has many flavors for variety. So we'll see if Soren is hip to this and if it decreases his seizures.
I will report the findings of this latest experiment as soon as I have them!
Amy
Soren is doing fine on the diet, but his seizures have increased compared to that wonderful 2 weeks without any activity. He's having 1-2 a day, ranging from very mild to big whompers. Still, it's less than he was having prior to the diet, so that is good. And he seems to recover quicker than before, which is also good.
And while we don't have the seizure control we'd been hoping for, Soren continues to be much more happy and alert. He's making lots of interesting noises, really making use of his voice. We get more little smiles and he is taking fewer cat naps. So we still feel that the benefits of the diet are outweighing the inconvenience.
I think the trickiest factor in full seizure control is making sure Soren eats and drinks every bit of the diet. There are days where he'll eat just fine, but then he won't drink the cream at the end of his meal. Without drinking this, he isn't getting a fully balanced Ketogenic meal. And without this, seizures are more likely to occur (which is what we are witnessing).
However, there are two ways to get a fully balanced keto meal into him. Through the KetoCal shakes and through a special Egg Nog recipe (heavy cream, egg beaters, and vanilla). Whether he drinks one drop or the whole bottle, eat sip is Ketogenically balanced. So, since Soren is on Winter Break from school, I've decided to try an experiment. I'm going to put Soren on an all-liquid, fully balanced Keto Diet to see if we get better seizure control.
The only hitch I can see with this is that Soren will get bored with these two meals of Keto shakes and Egg Nog. The good thing about the shakes is that I mix them with Powerade Zero, which has many flavors for variety. So we'll see if Soren is hip to this and if it decreases his seizures.
I will report the findings of this latest experiment as soon as I have them!
Amy
Friday, November 12, 2010
Keto Update: 2 Months
Two months in, I have to say, Soren is still doing remarkably well on this diet. Our total number of seizures from October 11-November 11 was 16! Considering Soren could previously have 16 seizures in a day, that's flippin' awesome!
This low number is because we have a GREAT 2 weeks of seizure freedom. It was amazing to see how much more alert and vocal Soren was during this weeks. We started seeing more hits of smiles and laughs. He was interactive and happy.
And it wasn't only Soren who felt this way. All of us were so much happier. Suddenly we all realized that we didn't tense up every time Soren made a suspicious sound. We didn't have to run over to Soren when we heard him seizing. We didn't have to make hash-marks on the seizure calendar. It like we could all breathe a little easier.
Then he caught a cold and with the cold came the seizures. Still, even though his defenses were down and the seizures returned, there were significantly fewer than prior to the diet.
The bummer was that after the cold, the seizures didn't immediately go away, which is what I was hoping. They did, however, taper down. But the hard thing was that we had that sadness back. He'd have a seizure and our hearts would sink. And we had something wonderful to compare this feeling to because of those 2 weeks.
BUT, we have now had 2 days without seizures. So we're crossing our fingers that this streak will continue and that we can all find that happy place again.
Amy
This low number is because we have a GREAT 2 weeks of seizure freedom. It was amazing to see how much more alert and vocal Soren was during this weeks. We started seeing more hits of smiles and laughs. He was interactive and happy.
And it wasn't only Soren who felt this way. All of us were so much happier. Suddenly we all realized that we didn't tense up every time Soren made a suspicious sound. We didn't have to run over to Soren when we heard him seizing. We didn't have to make hash-marks on the seizure calendar. It like we could all breathe a little easier.
Then he caught a cold and with the cold came the seizures. Still, even though his defenses were down and the seizures returned, there were significantly fewer than prior to the diet.
The bummer was that after the cold, the seizures didn't immediately go away, which is what I was hoping. They did, however, taper down. But the hard thing was that we had that sadness back. He'd have a seizure and our hearts would sink. And we had something wonderful to compare this feeling to because of those 2 weeks.
BUT, we have now had 2 days without seizures. So we're crossing our fingers that this streak will continue and that we can all find that happy place again.
Amy
Monday, October 11, 2010
Keto Update: 1 Month
We are at the 1 month mark on the Keto Diet and I am happy to say that things are going well! It took a bit of adjustment for everyone. Soren was not accustomed to the new flavors of his Keto Cal vanilla formula beverages. I was not used to having to give him fluids after school (and frankly, he was a little thrown by it as well). Getting temperatures right on the drinks was tricky--not too hot or too cold. Realizing that when I prepare meals in advance and stick them in the fridge, the butter in the meal hardens up so I have to give it some "softening time" before feeding Soren.
But we're adjusting well and the results are really positive. Week 1, Soren had 38 seizures (ugh). Week 2, 19 seizures (hmmmm). Week 3, 17 seizures (is this worth it?). Week 4, 9 seizures! In fact, I didn't see any seizures for 4 days! He had two very quick ones this morning and bounced back from them really fast.
Also, Soren's energy level has increased and he's "chatting" more. Because the meals are so small, he begins insisting on them when it's meal time and wolfs them down. He wakes up bright eyed.
The only hitch we've run into is that he's gaining weight! Despite the heavy fat content, this is NOT supposed to happen because he's in ketosis, which burns the fat. And gaining weight (as long as it's not growth related) can impeded seizure control.
But the dude has a belly now! And, his PT has noticed that he's not standing as well as he was prior to the diet. It's as if his muscles can't handle this new weight gain.
So we met with the dietitian today and I'm going to try and cut 100 calories from his snack. I honestly don't know if this will fly. Soren comes home from school HUNGRY. I mix the Keto Cal with very warm water and Powerade Zero. So now, it will just be warm water and Powerade! Ugh.
But, if it works, good things will most likely come from it. First, the weight loss. Second, he could go even deeper into ketosis. And because of those two, he could get even better seizure control!
Wish us luck on this next "adjustment!"
Amy
But we're adjusting well and the results are really positive. Week 1, Soren had 38 seizures (ugh). Week 2, 19 seizures (hmmmm). Week 3, 17 seizures (is this worth it?). Week 4, 9 seizures! In fact, I didn't see any seizures for 4 days! He had two very quick ones this morning and bounced back from them really fast.
Also, Soren's energy level has increased and he's "chatting" more. Because the meals are so small, he begins insisting on them when it's meal time and wolfs them down. He wakes up bright eyed.
The only hitch we've run into is that he's gaining weight! Despite the heavy fat content, this is NOT supposed to happen because he's in ketosis, which burns the fat. And gaining weight (as long as it's not growth related) can impeded seizure control.
But the dude has a belly now! And, his PT has noticed that he's not standing as well as he was prior to the diet. It's as if his muscles can't handle this new weight gain.
So we met with the dietitian today and I'm going to try and cut 100 calories from his snack. I honestly don't know if this will fly. Soren comes home from school HUNGRY. I mix the Keto Cal with very warm water and Powerade Zero. So now, it will just be warm water and Powerade! Ugh.
But, if it works, good things will most likely come from it. First, the weight loss. Second, he could go even deeper into ketosis. And because of those two, he could get even better seizure control!
Wish us luck on this next "adjustment!"
Amy
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