FINALLY ASKING FOR HELP!!!!!

Hello Everyone,

As you know, we have take Soren to the Dominican Republic two times to get him stem cell injections. Because we have to go out of the country, insurance obviously does not pay for this. We paid for the first two injections with money my Mom left us when she passed away. The first injection was $25,000. Any subsequent ones are a mere $8,500.

We are planning to get Soren another injection this December. And if possible we would like to continue to go every 6 months as long as we feel it is doing him some good.

But to do this, we need your help. To the right of the screen is a button you can click that explains how to give funds to Soren. These are unfortunately not tax deductable. But they would be going to an excellent cause and will hopefully lead to the best results ever--Soren's development!

If you have any questions regarding the stem cells, please email me at amykeatingrogers@pacbell.net. I will be happy to answer and explain anything I can.

AND, GET READY, FUNDRAISERS ARE COMING SOON!!!!!

Thank you all for your love and support!

Amy

Good Thoughts for a Friend

Hello all. I need you all to send good thoughts to Soren's friend Maddy, who is having trouble getting control of her seizures right now. Maddy is currently in the hospital getting a special test called an Ictal Spect (ictal is another word for seizure).

Maddy started having seizures at 7 years old when she got encephalitis through a mosquito bite. After years of trying to get the seizures under control, they finally were under control for about 6 months (if I'm remembering corrently) just recently.

But then when they switched from one form of her medication to another, Maddy lost seizure control. It's amazing how something simple like that--which you would never think would mess something up--can totally upset everything.

I believe Maddy is now 14. And if the teen years didn't suck enough, having epilepsy makes it REALLY suck. So please send your thoughts to this amazing girl who is brave and a great example of how strong a person with epilepsy has to be.

Amy

Withdrawal

Just a break in my recounting our steroid endeavor while I get picture put on disc to post.

Currently I am weaning Soren off a drug called Zonegran. He's been on it for over a year. We knew it wasn't really working before we started the Lamictal (the drug that IS working). But once he stopped seizing, we weren't sure if the two drugs were working together, so we kept him on it. Finally, after being seizure-free for so long, we decided it was time to test if we could remove this drug.

Why? Well, Zonegran has cognitive side effects. And since Soren's development has been so slow-going, we felt that if we can improve this by removing an unneeded drug, it was worth the risk of bringing on the seizures.

The weaning has been going well. But one of the issues with weaning an AED is withdrawal seizures. Now these aren't seizures that are being controlled by the drug. They are seizures that appear due to the body adjusting to the removal of the drug that it's gotten used to.

The interesting thing is, there are drugs that are known for withdrawal seizures, like Phenobarbital (which is a bitch to get off) and ones that are NOT known for withdrawal seizures, like Zonegran. It has to do with the kind of AEDs they are and chemistry and the brain and stuff I'm not smart enough to understand.

I actually tried to withdraw Zonegran about a year ago. But Soren started seizing more when I did it, so I spoke to his doctor and was told the Zonegran doesn't caused withdrawal seizures. So we thought it was doing a tiny bit of good and went back on it.

But here's the thing, and I mean no offense to all the amazing doctors who I've been in contact with, but they are wrong. Weaning the Zonegran is (at least in Soren's case) causing withdrawal seizures. And I have confirmed with other parents that they have had similar experiences, despite what the doctors say.

And I can say this is true because every time I drop Soren down, he'll have about 2 days where he has 1-3 Absence seizures, and then it's over. His body adjusts to the lack of Zonegran and he stops seizing. And coming off the Zonegran has been SO great--Soren is much more alert, talkative, and engaged. It's amazing.

I'm writing this right after he just had a 10 second Absence seizure where he held his breath and his lips turned a bit blue. It's very disturbing. But I dropped the Zonegran down another pill this past Saturday, so it's to be expected. Still it's not fun.

Two more weeks and I remove the last pill. Once it's all out of his system, I'm really interested to see what my boy is like.

Amy

The Summer of Steroids, Pt. 1

The Summer of Steroids (July-September 2004), as we now officially call it, began before we were ready to admit it. Soren had been having his partial complex seizures for 3 months when he started doing something new. Once again it was my sister who identified what was going on. When she was in med school, she learned about a kind of seizure known at that time as Salaam Seizures, because the child having them looks like they are bowing forward in prayer. She had never seen one because they are quite rare. My sister told us we would have to see the neurologist right away because this kind of seizure is treated totally differently.

We were all going to be heading to Maui for a much needed vacation/10 year anniversary in 2 days. So we called in a favor and got an EEG done at my childhood neurologist's office (thanks, Andrea!). On the EEG she was looking for something called hypsarythmia (a particular pattern in the brain waves). She didn't see this and so we went on our vacation. Unfortunately, Soren continued these strange movements. So when we returned, we had another EEG done and, sure enough, the hypsarythmia was now present. It was confirmed that Soren had Infantile Spasms (the new term for such seizures).

The next decision was treatment. The popular treatment was a steroid called ACTH, but with ACTH came some very bad side effects. ACTH breaks down the immune system, so you have to be very careful about not getting sick. You also have to be careful about how long you are on ACTH because the longer you're on it, the more susceptible to illness you become. I think the longest they recommend a child to be on ACTH is 3 months. There aren't many cases of death reported, but there are some, which made us nervous. The second kind of treatment is a drug called Vigabatrin. It's currently only available in the US at one pharmacy in New York. Otherwise you have to get it from Canada or Mexico. Its side effects are, with prolonged use, impaired visual fields. In other words, partial blindness.

Because of the extremes of these drugs, we wanted to make sure we were making the right choice for Soren's seizures. Andrea got us in to see the team at UCLA who were doing the most current work on Infantile Spasms and Vigabatrin. In early July, Soren was admitted into the hospital for 3 days for a prolonged EEG/video telemetry. This means that while Soren had electrodes all over his head recording the activity inside his head, he also had a video camera taping what was going on on the outside. This way when he had a seizure, they could match the inner activity with the outer reaction. Through this test, it was again confirmed that Soren had Infantile Spasms.

Now the debate of treatment...

Happy Easter

Poor Soren is sick. He came down with a cold yesterday. So he won't be going to his Grandpa Denny's today, because I don't think it's cool to infect others. The bummer about Soren being sick (besides just the general bummer of having a sick kid) is that it's hard to get his AEDs into him. I have to do this twice a day and with a loss of appetite and conking out, it becomes rather frustrating. And then there's the fear of seizures resurfacing.

Which leads me to my topic today. And while it should be obvious, I'll write about from my perspective. If you or your child has a cold or other illness and your friend's child with epilepsy is coming over to visit--WARN THEM ABOUT THE ILLNESS!!!!

Now, this should be common courtesy whether your friend has a child with epilepsy or not, right? It should be a general rule that you don't want to get your friend's kid sick. But the difference is, if your friend's child has epilepsy and the child gets sick, seizures could be brought on or worsen. When a child with epilepsy's defenses are down, the seizures can become much more intense. If the child is lucky enough to have control of his or her seizures, they could return because the body is busy fighting the cold instead of the seizures.

I have a friend whose daughter had Infantile Spasms that were controlled by the first drug she took--a miracle in itself. The child had been seizure-free for a while and was now off the drug. But then they were invited to a birthday party and the child whose party it was had Hand Foot and Mouth Disease (HFMD). The mom giving the party didn't tell my friend about the birthday girl being infected with HFMD until they were standing there chatting at the party. The mom explained that she just couldn't cancel the party--it would be SO disappointing for her child. My friend then looked over at her daughter and saw her blowing on a party kazoo thing (HFMD can be spread through saliva) and knew this was going to lead to trouble.

It did. Her daughter lost seizure control. They reintroduced the drug, but it no longer had any effect. So they had to start their search once again to find a drug to control the seizures. And all because this mom was too inconsiderate to call off a party for her sick, infectious child. Lame.

So don't be lame. Have common sense. Be happy that your child's worst problem is a cold. But don't spread it around.

Amy

But on a Much Happier Note...

Soren has been seizure-free of Tonic-Clonic and Infantile Spasms for 11 months today!!!!

Now that is something to celebrate. Prior to this, he was having an average of 10 episodes, some of which lasted 15 minutes long with multiple seizures making up the episode. It was exhausting for him and for us.

So we cross our fingers that those days are over. I look forward to posting in a month when he has been seizure-free for a year. Knock-wood on that!

Amy

Too Much Information

So, I'm writing this with a bit of sadness. I haven't looked up stuff on the internet about Soren's condition in a long time. But I had to to try and find out some facts. Boy, was that the wrong thing to do.

I went to two different sights that talked about Infantile Spasms and how poor the prognisis is for children with this disorder. That if your child has these kinds of seizures and doesn't get them under control, they become different kinds of seizures as a child develop. That it leads to mental retardation. Many children get diagnosed with Cerebral Palsey.

If you want to bum yourself out like I did, go to these sights.

http://www.ninds.nih.gov/disorders/infantilespasms/infantilespasms.htm

http://www.neuro.wustl.edu/epilepsy/pediatric/articleInfantileSpasms.html

I'm not recommending reading it, but upon doing so, you'll realize the full extent of what our future possibly holds. Make sure you have a stiff drink on hand.

The Man in the Movie

A little story about going to the movies with Moira and Soren. We went to see “Dreamer” the movie about Dakota Fanning and the horse. We always go to the AMC 16 in Burbank because they have stadium seating and large spaces for wheelchairs. Soren rides in a stroller that is technically a wheelchair. Heavy duty—emphasis on heavy.

It’s opening weekend. Noon performance. We got there during the previews. It was dark. But there was a spot for the stroller and two seats next to that. Then there was this man in his 50s in the 3rd seat in. The rest of the row was EMPTY.

I park the stroller and go to seat Moira. But then man told me that the seat between him and Moira (the seat I was going to take) was for this friend. I explained that I had a wheelchair bound child, my daughter, and myself to seat. He understood, but his friend was going to be sitting in the seat between him and Moira.

So we walked down the rest of the row. Filled to the brim with old people that I couldn’t give the boot. I returned to the only opening available. I parked Soren, set up Moira, and then sat on the floor next to Soren. Within seconds I realized this was ridiculous so I climbed up to the row behind my kids. I told Moira I was right there if she needed me.

Now, I don’t know how many of you saw Dreamer, but the beginning is a little tense. I saw Moira curling up into a ball. And I saw that this a-hole 1 seat down did not have a friend sitting next to him. 15 minutes into the movie, I was pissed off and asked Mo if she wanted me to sit next to her. She did, so I climbed back down and sat next to the jerk. He promptly moved one seat down, away from me.

We watched the rest of the movie. It was good. Although I was rather livid through the entire thing. No friend (besides maybe his imaginary one) was sitting next to this guy. He had totally and unabashedly lied to me.

The movie ended and I stood up, taking myself and my children out. But before I did, I leaned over to this man and with my face red and my voice low and filled with fury, I said, “You should be ashamed of yourself lying to the mother of a special need’s child.”

He looked at me dumbly. I know it didn’t make a dent in him. It couldn’t have possibly gotten through the thick layer of gooberdome that encompassed this 50-year-old friend-less loser who was at the opening weekend, noon showing of Dreamer. But I had to say something.

The amazing thing was Moira’s reaction. We were leaving and her eyes were wide with horror. “Mommy, why did you talk to that man that way?” she asked. “Because he lied to me and I was very angry.” I could see in her eyes that she never wanted me to get that mad with her. I don’t plan to. I save that for the buttheads who hurt my kids.

Amy

A PSA on how to be PC

Yes, I am here to provide a Public Service Announcement on how to be Politically Correct when dealing with the world of Special Needs. Please use this information wisely and with discretion.

Ever see a person or a child who clearly has a medical problem but you don’t know what it is? You know you have. But you can’t go up and say, “What’s your problem?” or “What’s wrong with your kid?” cause that’s rather inappropriate, right? Still something is off and you’re itchin’ to ask.

Well, the proper phraseology is, “What is your diagnosis?” or if you’re a mom talking to another mom, “What's your child’s diagnosis?” This is THE way to find out what is plaguing your mind.

As a mom of a special needs kid talking to another mom or a special needs kid, I’ve got an “in” as far as not being offensive. That's right, I'm hanging with the special needs crowd.

But even though you are not, you too can use this all-important phrase. Just ask with interest and kindness. You’ll be amazed at what you learn.

A Little Help Here

A friend recently said that he was surprised that during these past 2 years with Soren we haven't asked for help. And this hasn't been because we haven't needed help or that help wasn't offered. The fact is, the severity of Soren's condition has sort of crept up on us relatively slowly.

For example, when you are diagnosed with cancer, everything happens quickly because you've got to start getting rid of the cancer as soon as possible. One's descent into the hell that is cancer is immediate.

However, our introduction into the hell that is epilepsy was gradual. When Soren had his first seizure in the bath, I thought/prayed it was just a fluke. Even the next day when my sister saw the second seizure and we had all our testing done, we still were given no medication to treat the seizures because maybe...just maybe...they would never come back. And for 3 weeks, they didn't.

But then the seizures started up again. And then the meds started. Now, if you are lucky, your seizures are controlled by the first or second medicine. About 70% of people with epilepsy have their seizures controlled with meds quickly. But if you are part of the 30% that has Intractable Seizures (seizures uncontrolled by meds), the gates to epilepsy hell begin to open. The probability of finding the correct anti-epileptic drug (or AED) go WAY down after the first two meds have failed.

At this point, for us, the gates pretty much FLEW open. We went from one med to the other, but they weren't working. And the trick with Soren is that he was started on meds to deal with partial complex seizures, but then his seizures changed into Infantile Spasms. That's a whole other set of drugs. Plus Infantile Spasms are notorious for being hard to get under control. And, sure enough, the popular drugs to treat IS didn't work on Soren.

Back to asking for help. At first, we didn't know how bad it was. We were in the dark. We were holding on to hope for a simple solution. Then, when Infantile Spasms were introduced, we actually couldn't ask for help because the medicine that Soren was on broke down his immune system and we weren't allowed to socialize for fear of him getting sick. We now were in full-on hell. And while all this was happening, my job ended, so I was suddenly not around my work friends to update them all that was going on. Now I know that any of our friends would have been happy to help, but being quarentined, we suddenly felt very alone.

To add to all this craziness, Soren was holding his breath and turning blue when he was seizing. He was very difficult to feed for reasons I'll explain at a later date and I was the only who could feed him. I really needed help but I didn't know who to ask or how to get it. Finally I met other moms in similar situations who were getting nursing help. They encouraged me to get respite care funded through the state so that I wouldn't go bonkers and we as a family could have some sanity. I did finally get help by getting these respite hours, which has been a true blessing.

So what I'm trying to say is that I know people wanted to help us, but for the longest time, we didn't know what help we needed. And then once we figured that out, it was so extreme, we had to take different avenues to get that help. But we appreciate all the love, good wishes, and kind words we get from our friends and family about Soren. Those really help!

Amy

Developmentally Speaking...

Some of you see Soren every couple months, some have met him once, but many of you have never actually met him. Thus I'm sure it's hard for you to imagine exactly what is "wrong" with Soren. Soren is a very handsome boy and does not look syndromic--an actual word to describe people who have visible syndromes. For example, we recognize people with Down's syndrome because they look syndromic. Thus, when people see Soren, they think he's a typical boy riding in a really heavy duty stroller.

But people ask me all the time, what can he do? Well, since his seizures have stopped, he can hold up his head. Up until about he was about 2 his head would flop back and forth like a newborn's. He is getting better trunk strength. This means that I can sit him on my lap and he will sit up, but I need to have my hands on his shoulders or his hips or he will fall over. I can't just plop him on the floor to play. Well, I could, but he'd fall over and smack his head. This would lead to crying, which is never good. When I put Soren down to play, it is generally in his vision box, laying flat on his back.

Soren can bring his hands to mid-line, meaning he can bring both hands together at the middle of his body. He can put his hands in his mouth. When he wants, he can laugh. But this is all about what Soren thinks is funny and can never be predicted. He will begin with giggles to himself. We will then try to tickle him and often he will guffaw happily. Wanting more, we'll tickle over and over. But soon, his personal joke is over and he is spent. No more laughing no matter how much we may want it.

Sometimes it's easier to tell people what he can't do. He can't roll over from his back to his belly or the other way around. I know this is taboo, but I leave Soren on the changing table and walk away knowing full well that he isn't going to roll off the table. I was at a birthday pool party and put Soren on a lounge chair and went to get some food. When I came back, some other mothers were hovering around him horrified at what I'd done. I shrugged it off. If he'd actually rolled off the lounge chair, I would have danced a frickin' jig.

If put on his belly, he won't use his arms to bring his head up. He won't draw his legs under his body. If I put him on his belly and position his arms and legs under him, Soren will wiggle until his is flat on his belly. Then he usually falls asleep. He doesn't hold on to toys and doesn't have any favorite toys to play with. He doesn't feed himself finger foods, he can't drink from a cup. When I go to the grocery store, I can't put him in the front basket sitting up, so I put down a blanket and place him in on his back. When he wakes up in the morning, he doesn't cry. He's either quiet or babbles to himself until we come to get him. He hates bearing weight on his legs. If I try to hold him up, he'll go all jelly-legs. So we have "stander" to put him into a standing position to work his muscles. He doesn't crawl, walk, or run.

He used to give kisses, which was the best. He would give big open-mouth fish kisses when we put a cheek up to him. But he doesn't do that any more. And while I know that he knows me, his dad, and his sister, if I were to say Soren's name, he wouldn't look at me. He doesn't dance to music. He doesn't smile responsively at us. He doesn't talk. Still, he knows what he wants. At the end of the day, he likes to unwind. We put him in bed and he babbles to himself about his day. Last night, his dad came home after Soren was put to bed. Soren's talking got louder and louder until Aaron got him up. Soren calmed down once he was in Aaron's arms. And then Soren chatted some more to Aaron until he was finally ready to settle down to sleep.

So this is what I mean when I say that Soren is behind developmentally. He is on his own schedule. We hope that someday he'll talk, walk, and run. But, honestly, we have no idea if he will. We keep waiting for the day a connection is made--when the switch in his head is flipped to on and everything changes. Still, it may not. That's a fact we have to face every day. And we remind ourselves that miracles can happen and we just have to be patient and happy for any little step forward that we get.

And now for something light...

Now, I'm not meaning for this blog to be a big old downer, because Soren isn't a downer. He's a delightful boy with funny quirks like any other boy his age. And so I bring up an issue that is amusing in all 2 year olds. Pooping.

We have something for Soren that we call a "Vision Box". The real/official name for it is "The Little Room". If I was savvy enough, I'd give you a link, or attach a picture, but I'm not. Certain vision therapy centers provide them for their clients. Ours does not, so we got pictures from a friend and bootlegged one (Thanks to my sister's father-in-law. Thanks Marty!)

So imagine if you will, a plywood box with 3 walls, circular windows are cut in the walls, and plexiglass on the top of the box. On the underside of the box we have hung red, reflective Christmas ornaments. On the topside there is a string of rope light. The light bounces off the red ornaments and, unlike any toy we have put Soren under, he looks at, talks to, and hits at these ornaments (we've had to move the ones made of glass). For a boy with vision issues, it's a God's send.

So, where's the poop you ask? Good question. Whenever we put Soren in his vision box, he is delighted. Happy, talking, kicking. And 9 times out of 10, he poops. I'll put him down, leave the room, come back, and it stinks! Something about relaxing on his back, being enclosed, and looking at his ormanments inspires him. It's his equivalent to getting to read a magazine on the toilet. We have now dubbed it Soren's Litter Box.

Soren's Seizures

So before we even knew Soren was having seizures, he was probably having seizures. Sub-clinical seizures is what those are called. We now realize that this is why he wasn't developing typically as a baby.

Now, to update you on Soren's seizures, the ones I first saw that day I was bathing him were called Partial Complex. For Soren, this meant he did "crunches" on the left side of his body repeatedly. These would last about 4 minutes and he would have several a day.

He did those from 6 months to 9 months when he added a kind of seizure called Infantile Spasms. Soren's Infantile Spasms looked almost like hiccups. His eyes would grow wide and he would gasp for air. These could go on for 10 minutes. The problem with Infantile Spasms is that they are very hard to get under control. And we tried the most popular/drastic of treatments--steroid injections, which I'll write about another day. Plus, with the IS, he would hold his breath and turn blue, which was terrifying. Another fun feature of IS is that they tend to happen as he transitioned to or from different levels of sleep. They would occur as he woke up. We would hear him cry out as the seizures started, being woken with a start.

At 12 months, Soren's Partial Complex had faded while his Infantile Spasms continued. He then added Tonic-Clonic (or Grand Mal) seizures. He would do a combo platter of the IS and the TC and a whole episode could last up to 20 minutes bouncing back and forth between the two.

To try and control this, we did many, many anti-epileptic drugs (or AEDs) and other treatments. Phenobarbitol, tegretol, carbitrol, ACTH (the steroids), Vigabatrin, Topomax (or Dopomax, as the moms call it), Zonegran, Felbamate, Vitamin E, B12, Dyastat (a rectal valium gel), and Lamictal. We even went to the Dominican Republic twice for stem cell injections (which we believe had beneficial results).

Soren stopped seizing on May 14th after being on the lowest dose of Lamictal for 4 days. Besides a few breakthrough Absence (or petit mal) seizures due to growth spurts, he has been seizure-free since that day!

Now the challenge is to get him up to speed developmentally!

A Brief History of Soren

Let me catch you all up a bit. My son, Soren Patrick Rogers, was born in September of 2003. It was a healthy pregnancy. He was born by scheduled C-section since my daughter had been born by emergency C-section. So everything was supposed to be cool. He was beautiful (still is) and the picture of health.

But as we went in to our check-ups at the pediatrician, we noticed that he wasn't hitting his milestones. What this means is between 0-6 months he was not holding up his head, grabbing for toys, smiling at our silly faces, bearing weight on his legs, or making any efforts to roll over. We thought he was just taking his own sweet time--which he was--but for a reason that we didn't yet know.

Desperate for some sort of answer, at 6 months we got Soren's eyes checked. The ophthalmologist said Soren was more far-sighted than usual. He needed glasses. Great, we thought. An easy fix! Get glasses, boy sees, boy smiles, etc. But because Soren wouldn't sit still to get his eyes refracted, we scheduled an eye exam under anesthesia. But the night before the exam when I was giving Soren a bath, he began to jerk his legs rhythmically. I was stunned. My first thought was, "Is that a seizure?" Having only seen seizures on T.V. I wasn't sure. It stopped and I said nothing.

The next day, coming out of anesthesia, Soren did the same thing. But this time he did it in front of my pediatrician sister. She identified his movements as a seizure, began to clock it, and called over another doctor. CAT scans, MRIs, and EEGs followed, all of which showed that while he was having seizures, there was no visible reason as to why.

March 5th, 2004 marked a drastic change in our lives from having a typical child to a child with special needs. And thus began our journey.