The Bathing System Saga

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

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

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.

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

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.

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

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