WOW first of all I THANK YOU ALL FOR YOUR VOICES.. As you know dealing with all the Dr and medical issues is soooo frustrating. One example of the many frustrating times was getting him initial treatment. When we were finally admitted into Cleveland Clinic we were told it was stress and sent home after a week since they couldn’t find anything! My son walked into the hospital and left in a wheel chair! (we did finally get with 2 Dr’s there that really cared and that is how we got the IVIG that helped.) Sorry just venting!!
When Garrett was first diagnosed 10 years ago we were at the Cleveland Clinic for off and on for 2 months and they seemed to try everything. The nerve biopsies were done on his calf and foot. they came back fine. He also had his stomach scoped twice and had 2 spinal taps & bone marrow. (Had spinal tap 2 years ago and it was fine.. had to have a blood patch too!) If fact EVERY test came back fine. The GB diagnosis was by default. He was headed steadily down hill and started having bladder issues.. They were considering doing a bladder biopsiy when the IVIG was approved, over night he moved his foot slightly in his sleep and the bladder issues immediately cleared up. So at that point, the Drs pretty much said it must be atypical GB.
In past few years he has had mostly spinal taps and MRI’s. He did have some other test done for blood clots when his left side went numb (took several weeks for this to go away on its own) They did find he has a mutant gene for thrombosis. Plus recently an immunologist order over $ 5000.00 in blood work and the only thing that came back wrong was low antibodies. She felt that IVIG would help over all since every time any kind sickness went around Garrett immediately got it and it rolls into unrelenting migraine and nausea and overall sickness.
Regarding Onion bulbing… I don’t know what that is, but I all test were normal including Lyme.. He went to a good holistic Dr last year who checked for heavy metals and only thing came back was aluminum. The Dr said that the level would not explain he severe symptoms. His neurotransmitters are low and he is allergic to almost everything at some level. (note when he first got sick we had him checked for allergies and he didn’t have any) We have been doing NAET for the allergies (he also tried shots). He also went on a gluten and wheat free diet for 3 months last summer with no help.
Regarding stress and headaches. I am sure stress plays a roll in making the headache worse but is certainly not the cause. Regarding the rate of infusion. They are doing 100 over 2 days. I asked them to slow it down this last time. The Dr ordered it to over 6 hours instead of 4 hours. At present he is approved for 2 more treatments every 3 weeks and then will have to be re certified.
You all have given me a lot to research we so appreciate it. If anyone has any more ideas we would be really grateful. My son just want some kind of life back.
P. S. we are located near Toledo Ohio
Another long email.. sorry. But it is so nice, comforting to have some to talk to who might be able to help.
Thanks so very much, Seleene
Thanks for the info. Garrett has a long medical history.. But some of the tests he has been thru are many many CAT and MRI’s, his stomach has been endoscoped twice, Bone Marrow test, Nerve studies. Nerve biopsy, heart studies, blood studies and 5 sinus surgery’s 4 of the sinus surgeries to try to fix the first.(they thought that the pain was caused by sinus issues since every time he got a sinus infection in the fall it go the ball rolling again) He also had a period last summer out of the blue he woke up with a small headache and then his right side became completely numb and he couldn’t feel his arm… and it goes on!
Any more help or ideas would be appreciated.