Hello

[judielise]

Hello,

I am part of several boards, but I had this one bookmarked to come back to, so I am joining now. Sorry it took me awhile. I used to be on the Schwab Learning board, but since the transition, I find that everyone has spread out a bit. That's okay with me.

I am the mom of 2 boys, ages 15 and 11. My oldest ds has Asperger's syndrome/HFA. He is an absolute joy and his quirky way of seeing the world (we call them Andrewisms) never fail to entertain. In fact, I keep asking him to write them down. Maybe I will make a book someday. He is heading into transitional services now, so our needs and experiences are changing. Plus he is becoming a teenager now and I can REALLY see it!

My other son was just diagnosed with something I never thought of and another thing I never heard of. I make a point of letting people now because we were told he had ADHD most of his young life. We were even told he might have emotional problems with aggression and temper. My ds has moderate sleep apnea and dysautonomia. Most may have heard of sleep apnea, but I never knew until this year how much it can change behavior, learning and memory. Dysautonomia is a just a fancy way of saying autonomic nervous system dysfunction. Literally, my ds blood pressure changes (drops) and he can faint. But before he faints, he may zone out (looks like absence seizures) or grey out, and not remember what is going on in around him. Basicaly, during the day and the night, my son was lacking oxygen to the brain. The biggest deficit we see is in memory, mostly short-term memory and speech and language. He is in Home and Hospital right now, but we hope to begin to transition him back to part-time school in the next couple of months. He will have speech and language therapy and modificatons to his curriculum for the memory piece. He also will have a FM in the class based on an audiological exam.

I'd love to connect with other parents with children who have special needs. We have had a really supportive elementary and middle school but high school, we are still working on. I have used advocates and I have faced the IEP gauntlet alone. I no longer bite my nails before one, but I am not always happy with how our children are treated.

I look forward to being active as much as I can on the boards.

Take care,

Judi

[lcdc1]

HI, nice that you joined here, it is a good place to join. What is HFA?

[charliegirl]

Its great to have another Schwabby here! I've never heard of dysautonomia. Is it dangerous? I look forward to learning more about it.

HFA is high functioning autism.

[Tigger]

Hello It is so nice to see new people here.

[katiekat]

Welcome! I have never heard of dysautonomia either. I'm sure we can learn a lot from you.
My 7 yr old id DX with ADHD and Bipolar and recently Aspergers has been suggested, but we were advised to take him to see someone who specializes in autism to be sure. I'm sure you will be a big help as I'm having a hard time getting answers.
So glad you joined us!

[misty]

I'm another one who never heard of Dysautonomia , although I do have a cousin with narcolepsy. Are they in the same family? I look forward to learning more!

[jj]

Welcome Judi,

Well, I'll join the club. I never heard of dysautonomia either. But you can be sure as soon as I post this I'll be "Googling" it.

I wonder how many doctors even consider apnea or dysautonomia? Not very many I bet.

Anyway, it is wonderful to have you here. I look forward to getting to know you.

[judielise]

Thanks, everyone for a warm welcome!

I am by no means an expert, but I will tell you what we've learned in the last year. I will try to keep it brief.

Early on (14 months and onward ) ds was very hyper, had poor impulse control (tantrums you would not believe) and poor sleep. In school he was considered bright and often was put in advance levels, but his behavior (easily frustrated, couldn't follow a morning schedule for beans) and poor memory always got him into difficulties. By the time my ds was 8, 3rd grade, he was zoning out in class, eyes wide open. School social worker thought it was seizures. EEG was normal. Neuropsych eval, spch and lang evals showed deficits, so we were pointed toward ADHD. Did a trial of meds, no change. Took him off. 4th grade was great (we now think dys. portion was in a kind of remission), so school and I decided no intervention was necessary. There were still concerns about memory, impulse control, emotions and sleep at home, but no one was really listening. On the outside, he was a very healthy, athletic child. Played soccer, was a junior firefighter and was very popular.

However, by middle of 5th, (April 2007) he began having sleep attacks AND fainting spells. EEGs actually showed seizure activity (considered low level in hindsight), so was given diagnosis of epilepsy. Started meds, increased once, still no change. In fact, we had an increase of fainting events and memory went to all time low. My poor ds thought he was losing his mind. Therapist compared him to Alzheimer's patients. He came out of school (I tried homeschooling for two months, but the frustration of not knowing what was really going on took its toll on me and him)and he eventually went into the Home and Hospital program through the school district. Eventually was taken off of seizure meds after 4 EEGs.

We saw four neurologists, two cardiologist, an ENT, a pulmonologist and two pediatricians in this last year. All scratching their heads. Two sleep studies finally turned up Moderate Sleep Apnea. No surgery yet, trying CPAP first. If we still have too many sleep attacks (have had two in last three weeks) we may have surgery anyway.

Finally we saw a developmental pediatrician, who asked me if I had ever measured his blood pressure. I said, sure, every time he went to the dr, it is routine. But this time, she did it differently. She had him lie down for 5 mins. and take it. Then sit up for 15 mins and take it again. And finally she asked him to stand for 5 mins and took it again. She also took it in both arms. Finally she said, I think your son has neurally mediated hypotension or orthostatic intolerance. Again, big words meaning low blood pressure with prolonged standing enough to cause fainting/near fainting and other symptoms.

Fast forward after mountains of research on the web, to understanding that Dysautonomia is an umbrella term for autonomic nervous system dysfunction. There can be many causes (cardiac, trauma, viral, vitamin deficiency, and/or neural connections between the brain and blood vessels or specific nerves). It can range from mild (my son is actually considered mild) to bedridding a person. It can cause problems in digestion (we are beginning to have issues there now), sweating, heart rate control, blood pressure, memory and learning. The list is long. Just think of anything your autonomic nervous system controls...it is subject to dysfunction.

There was good news. My ds dysautonomia was not caused by faulty heart issues (can lead to sudden death, cardiac arrest). With that said, the heart issues are easier to attempt to treat than other causes. We still do not know the mechanisms of how this began. Research into this disorder is limited and MOST drs do not know about it. Treatment for my son consists of high salt diet, increased liquids, compression socks and avoidance of triggers. Problem is prolonged sitting or standing (sound like school?) is one of them.

In hingsight, I wish someone would have just asked me years ago "Does your child snore?" or when he sleeps, "Do you think he gasps or stops breathing?" We don't know if the sleep apnea caused trouble with his autonomic system or the other way around, though we saw issues in sleep before we saw the faints. Invisible disabilities are real and can affect someone even if it takes awhile to do it.

I never asked to become an advocate about these disorders, but after going through what we did, I feel so strongly about getting the word out. Even if there are other issues, sleep apnea can be part of the mix. No one ever let me know how dangerous it could be.

Sorry this is long. I will be contributing to the boards as much as I can in between the tutor, drs. and meetings. I hope I have explained it a little. Please feel free to pick my brain, and I will try to help. Take care.

Judi

[lcdc1]

WOW that just educated me, had not idea about that in kids at all. Thanks for telling us about it.

[charliegirl]

Wow. Thank you. You have gone through so much and its far from over. Please keep us updated.

We're here for you when you need us. We will be here in any way we can. Please let us know if we can help in any way.