Need help with my youngest son please

[Redneck_momma1985]

My youngest son will be 2 in July. As of right now he has been diagnosed with seizures at around 1 month old, severe sleep apnea and oxygen deceleration during sleep at around 2-3 months,pyloric spasms, severe acid reflux, a 2 cm. arachnoid cyst, failure to thrive( he only weighed 10 pounds at 4-5 months and still only weighs 22) he is on a diet of 3 pediasures a day for 1100 calories plus food, asthma,tremors(normally worse the first 10-15 minutes after he wakes up, but does have them throughout the day),balance problems( he will be walking and just fall over normally to his left), he seems to have sensory problems he can fall and hit his head on our concrete floor and will never even cry, he doesn't cry when he is hungry and never has. The other day I had to take him to the ER and the doctor saw the way he walked and fell over and asked if he had been tested for muscle diseases. I was just wondering if anyone had any ideas what the balance problems, tremors could be or what kind of muscle disease it could be. He is currently in speech, occupational, and developmental intervention therapies. He ranks in around the 6-9 months age and a few 9-12 months age of all his abilitiesHe did outgrow the seizures And apnea and oxygen problems whe he was around 9 months. Any help would be really appreciated

[sbgrace]

Much of what you mentioned is brain related--I'd assume he's seen pediatric neurology given the seizures. Did they do an MRI?
What has been ruled out for him and what specialties have seen him?
I see my son's issue in everything so it might not apply but my first though in reading was that mitochondrial disorder would need to be looked into/is a possibility. It often affects muscles but can affect any three body systems. Tremors, by the way, for me (I've got the same metabolic thing as my son) are actually nervous system not muscle. At any rate, that's it's hallmark really--at least three unrelated body systems. You're son certainly has involvement of unrelated systems.
This is a thread I posted about mitochondrial/other metabolic conditions.http://www.mothering.com/discussions...d.php?t=734501
How is his energy level?

[Redneck_momma1985]

Thank you. He has seen both a nuerologist and a nuerosurgeon. They have done 2 MRI's the first when he was 5 months old, that's when they found the cyst on his brain. Then they repeated the MRI in december of 09. But said they would not do anymore. He does sleep alot. He will go to bed around 9 and get up around 9 but will only stay up maybe 30 minutes before he is ready for bed again, and will sleep 1-2 hours then repeat the whole proccess again and do it all day. The doctor he seen at U.K said they thought he done it to conserve his calories. He has seen a dietician, pulmonologist and gastrointerologist ( both of which he still sees), a kidney doctor because when he was 9 months old he was hospitilized for 1 1/2-2 weeks and his blood pressure was 140/ something and after looking back on his many hospitalizations they noticed it was high the majority of the time so they wanted to make sure it had not affected his kidneys, he has seen a doctor over his legs ( they thought he had leg length distrophy) and one in Ohio but I can't remember what kind, a cardiologist. He has been tested for cystic fibrosis, which they had to do 2 sweat chloride test and 1 blood finally because one was borderline one was ok and one was incloclusive. I'm not really sure if they have tested him for anything else or not.

[sbgrace]

I'm sorry, I missed the cyst part when I read through the first time. It's really, really late here like 4 am and I'm up waiting on laundry so not exactly thinking clearly.
Ok. That changes my thoughts some. Did they do anything and are they monitoring it? Does the cyst alone explain this stuff. My quick read makes me think it can affect balance (and other stuff, including that tremor).
Did any of that mito stuff in that link ring true in your mind?
He's got so much going on. Pulmonology, GI, etc. but the brain explained by the cyst (assuming it is) does change the picture. Still, he's got enough outside of that to think there is more. Genetics is another explanation for multiple things going wrong in one kid. Have they looked for anything chromosomal?

[Redneck_momma1985]

I'm not sure if they have tested him for any of that stuff or not, they were always doing so many test I lost count. About the cyst, they haven't and won't do anything about it. The last time he went to see them and have his second MRI they said they wouldn't see him any more or do anymore MRI's, that was the Nuerosurgeon.When I tried to ask if the tremors and balance issues where from the cyst he would cut me off and say that it couldn't cause any of the problems, which bothers me because when I looked up information about it online it showed alot of his symptoms. His is a 2 cm. Arachnoid cyst within the left sylvian fissure. Alot of the symtoms listed on the thing you mentioned did sound like him and some of his problems.

[sbgrace]

Can you see a new neurologist? I think you need answers about his symptoms and that cyst and that one sounds like a real stinker of a doctor (we've run into those too).
I see you're in KY but I'm not familiar with Irvine.
How far are you from Indianapolis? Is he insured (private or medicare or CHIP or ?)? I'm wondering his plan would cover a visit to Riley Hospital to see my son's geneticist.

[Redneck_momma1985]

My sister said he had seen a Genetisist, they were waiting on some test results and that was the last time we saw them. I'm not sure what test they had run, but the genetisist themselves actually never run any, it was U.K. Hospital. I'm not sure if U.K.( which is where most of his doctors, besides his pediatrician is) can refer him to a new nuero, they say it would be a "conflict of interest". We are about 3 hours away from where you are I think, me and my husband just recently drove to Indiana and it took about 2-3 hours. He has a medical card. We thought we were close in getting a doctor to look at him once before, there was a doctor in Georgia that me and my sister had contacted and told them about the cyst and all his problems and they wanted to see him there within a week, but then they couldnt accept an out-of-state medical card

[sbgrace]

Was it Shoffner (spelled wrong I think) in Atlanta?
I'm thinking you need a new neuro and you need to see someone who knows metabolics including mito.
See if he can go to Riley in Indianapolis on that medical card. I don't know if my son's geneticist normally sees people who travel (unlike someone in Texas that's really good for example). But he's extremely good about figuring out if there are metabolic or genetics in a child and, if so, what. I really trust his judgment. He's brilliant.
If it's too far to travel let me know and maybe I can figure out someone to stay with on the way.
I really think you need to see someone.

[Redneck_momma1985]

I think he needs to be seen too. I always worry that there is something bigger going on with him, I think alot of the reason I worry so much with him is because I am used to stuff popping up with him at a moments notice. Used to every time I would take him to the doctor for even just a weight check they would end up sending him to U.K. hospital. I am going to call and ask tomorrow if his medical card will cover him coming there, I really hope it will, I just want him to see a doctor who will listen to what I have to say and take me seriously. Thank you so much for all your help.