undiagnosed 2 year old son
 

starting in june the week of the 16th, my son began having these seizure like episodes where he would let out a scream of horror, start shaking all over, vomiting 3-4 times and then sleeping afterwards for about 2hrs, he has these episodes every six weeks when he 1st started having them he had 3 over a 4 day period, since then on the days that he has them he has 1-2 a day, they are gradually getting worse, he had one this past tuesday and during the boughts of vomiting he was trying to loose conciousness, he jerked his neck all the way back and it took a few seconds for me to get it loose and when he did go to sleep afterwards he was completely incoherant and he slept for 5hrs i couldnt get any reaction out of him for those 5 hrs, he has been through countless testing he has had 2 sleep deprived eeg's and 1 24hr eeg, which were all negative, he has had and mri of his brain, 2ct scans and an mri of his spine, while we were in the hospital for the 24hr eeg they did an xray of his belly due to him complaining of belly pain, and they saw that he was extremly backed up, we tried some internal home cleanouts but nothing worked and at the time they thought this is what was causing the episodes, we took him to a ped gi doctor and they admitted us to the hospital for an internal cleanout which at that time they did the mri of his spine to look for something called tethercord, the test came back negative however they did find a 5mm chiari malformation in his brain, we have been trying to find out since june what is going on with our son he has not been put on any medication nor has anyone ever givin us a diagnosis, i really feel like this is somekind of seizure and really would like to have some answers any help would be greatly appreciated, thank you:

First, I am sorry that your child is so ill. I am a 40 yr old mom of 3, and I was diagnosed with Chiari 1 at 33 yrs old. I remember severe migraines and alot of GI illness as a child. And I was told by a couple of docs that even though most of my migraines begin as a result of the malformation, I still should be careful of other migraine triggers. My daughter is 12 now and has suffered with migraines since her toddler years. She would become very irritable and cry holding her head. I took her to a neurologist, and she is borderline Chiari. But we eliminated the more common migraine triggers from both of our diets and have seen a dramatic improvement in frequency of migraines.
If you haven't already, try to keep a food diary: write down everything he eats and drinks for 2 weeks and try to notice any patterns. MSG and tyramine are definite migraine triggers for my family. Also, storm fronts moving thru our area will put me in bed for 24 hrs.
I know it is maddening to watch your child be in pain and not be able to help, but be persistent and trust your parental instincts.