Concerned parent seeking information and stories of similar experiences

Seeking information. My 2.5 yr old son was recently diagnosed with Chairi Malformation. we meet with the neurologist This Wednesday. I am looking to find out what questions we should be asking as I have read Not all Dr's are created equal and we have had are battles over the past 2.5 yrs with certain ones.

so this is gonna be a bit lengthy but i feel i need to start at the begining.....

A little about our situation. . It has been a long battle to get to this point. Fortunately and unfortunately our son is a extremely happy child but has had major health issues since birth. He had major troubles breathing, eating, sleep apnea, always sick with cold like symptoms. He was brought into the E.R more times than i can count., seen more doctors then i care to even think of. For 13 months we could find no doctors to take his issues seriously and they kept putting it off as he has a cold/asthma/allergies. After many more visits and doctors our son was diagnosed with trachea malasia/ they then determined he had severe silent reflux then determined that he aspirated on everything he swallowed. after the aspiration was diagnosed he had surgery putting in a g-tube and he also recieved a fundo. the g-tube for feeding him and the fundo to stop his reflux. we wanted to wait for awhile to allow his body to heal and see if any changes happened. happy to say that the surgeries helped him tremendously but he is still far from normal. his lungs are badly damaged from the abuse they have taking from us feeding him while trying to figure out what was wrong with him. recently we had an mri and ct scan and while at the ER for another incident we over heard them stating his cerebellar tonsillor decent is 5 mm. we asked the nurse what that ment and she said it was chairi malfunction. we meet with the neurolgist on wed but are looking for advise similiar stories if any and info on how we should proceed. problems we are still dealing with.. he is sensitive to light and loud noises, headaches/neckaches, low energy levels/tires easily, hard time breathing, restless in his sleep, weak immune system and dark veins/pockets around his eyes. He has excellent motorskills however and does not have any dizzyspells that we are aware of.

On a side note his cousin has scoliosis.

Our oldest son is super sentive to light (can not go out in he sun with out sunglasses), sensitive to loud noises infrequent breathing issues(kinda gasps and quick breathes) ventalin does not help, headaches, always tired, had sever sleep apnea until they removed tonsils and adnoids he is now 5

our daughter is completely normal health wise.

Poor little man. I've recently been diagnosed also but all I can offer is that yes I have many of the same symptoms but I also wanted to ask have you noticed your son falling at all or into walls - it could be just him bumping them? If yes, this could be him having a dizzy spell. With regards to sleeping you may want to consider buying him a theurapeutica pillow, it has helped me a lot especially with keeping my neck in alignment and supported so the base of my skull doesn't hurt as badly. It does take some getting used to but well worth it. How it work is when he lies on his side he would lay on either side of the pillow but if he lies on his back his head goes in the nook area. I hope the doctors gave him some pain relief meds - if not maybe give him motrin before bed and when he gets up in the morning. If he seems to get sick at night when lying down this could be that he is feeling like he is on a boat - it feels like sea sickness, like a boat is rocking. He may even vomit from this. My neuro gave me valium for this. They have the liquid form for children, I know because my son took it when he was a baby up until he was a toddler. Also when I have problems breathing I take damatab - it seems to help. I take a dose a day. There is some research on similar meds helping with this. For me as far as the other pains they gave me robaxin and mobic. I know at his age he should be able to take robaxin...this does help quite a bit with the head pains and body aches. You can find the pillow on amazon, they make child sizes. I will post the link here but not sure if it is allowed so if it doesn't come through then check

I hope this helps. Good luck my prayers are with you all.

Hello thanks for the reply. No I don’t believe he has dizzy spells but at his age it is hard to tell. His motor skills and hand eye coordination I can say is very good. His strength is good just he tires very easily. His headaches and neck pain are infrequent roughly once every 2 weeks to 2 a week he mentions it but we will try the pillow. Anything that may help him is worth it.