Can you help our Son? IVIG & Doctors
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May 27, 2009 at 4:29 pm
The short version our sons story:
My son Garrett (age 12) went to the Dr to get a sports physical for school and the Dr suggested we get the 1st of the Hepatitis B vaccine while we were there as the state was on the verge of making it mandatory for anyone in sports. I trusted this dr. and said sure! Go right ahead. Later that week we left for a 2 week trip to Cancun. While there Garrett had diarrhea and now that I look back on it he was not swimming as well as usual.Upon our return school started. Within days he was in bed with what Dr said was a virus. Bad headache and nausea. As time went on he worsened until he couldn’t walk. We took him to Cleveland Clinic. To make a very long story short, it took over six week before he was started on IVIG. The Drs. didn’t think it was GB but gave him that diagnosis as it was the only way he could get Garrett a trial of IVIG. (He was diagnosed with POTS -orthostatic during all this too) Garrett had no problems breathing but couldn’t move his legs, had weakness in arms, and at times couldn’t lift his head and the headache and nausea was constant. After one treatment he was able to slightly move his feet. It seemed like a miracle! After 6 months of IVIG and rehab, he seemed normal again.
Then in January (the following winter) of 2001 he had to have his appendix out. With in weeks he had migraine, nausea and became orthostatic again. (His original symptoms with GB)
We have been on a rollercoaster for the past 10 years (he is now 22) with the same symptoms coming up every fall ( when he originally got sick) and getting better in late spring (when he originally got well) We have been to many drs at Cleveland Clinic, Mayo Clinic & Ann Arbor Head clinc seeing migraine specialists.
He has had every nerve block known to the head and neck with no help for the headache pain that he gets every fall. He has been on every drug for migraines and prevention in addition to many that are not for migraines (over 2 pages long) For the past couple of years he has ended up on narcotics for over 8 months every year and after being on them so long they are no longer effective. He was never able to finish school and had to take the GED (he got a score so high that the state gave him a scholarship!) He has been trying to go to college for the last 4 years and has to keep withdrawing. He has only been to reach the sophomore status in 4 years.
After reading on your site about residuals it came to his dad and I that Garrett has CIPD. No Dr. has every mentioned that his problems may be a result of the GB. We were able to convince one brave Dr to do a trial of IVIG to see if it helps. They are going to try it 4 times.
A couple of questions:
After the first treatment, (he went in with headache and nausea) the headache got so bad he had to go to the ER. He was sick with worse headache and nausea for about 7 days and then had the first complete first night sleep in months! By the date of the next treatment 3 weeks later he was off the narcotics and feeling much better but not completely well.
After the second treatment, the headache was not bad enough to be treated at the ER but was bad. In addition to the headache and nausea, he had bone pain, and a fever. We are seven days out now from the second treatment and he is starting to feel better again.
Is this reaction common? I don’t remember him getting so sick after the IVIG 10 years ago. I asked to change IVIG brands, but was told there is a shortage and gammunex was all they could get.
The other BIG question: we need to find a good Dr that understands CIPD and residuals. Any suggestions? The Dr we are with now doesn’t want to continue the treatments until we get a firm diagnosis of CIPD . We are in Ohio but would go ANYWHERE even if we have to pay out of pocket.
I know this post is crazy long. Sorry! We would appreciate any advise you have time to give.
We thank you all for taking the time for reading this long post and your help.
Seleene
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May 27, 2009 at 4:53 pm
Hello Selenne! I know one fantastic doctor but he is located in Philadelphia. His name is Mark Brown and is a Professor of Neurology at the University of PA Hospital. I swear though by what you have described it sounds just like my Nephew. Had headaches all the time and was weak and getting sick. And did the same exact thing your son is doing!
He just recently got diagnosed with Celiac Disease. Would certainly be worth checking into. It’s a food allergy to Gluten and so many people have it. It usually starts out in a young person but if it goes undiagnosed can gradually get worse and can actually look like the person has CIDP because it can cause nerve damage. My nephew ended up in a wheel chair and couldn’t walk, landed in the hospital really bad off. My sister as a last resort took him to see a Gastrologist and they did the Endoscopy and it came out Celiac! He is now walking and doing great and back in college. He too kept having to drop out of school several times. Before I would start the process of seeing a new Neurologist I would try to get that ruled out and see what happens. If not Celiac then I would try another Neurologist! So sorry to hear about your son and I do hope he gets better soon. Also with him having bone pain. I would also reccommend him seeing a Rheumatologist! Good luck!
Linda H -
May 27, 2009 at 7:46 pm
Linda,
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.Seleene
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May 27, 2009 at 9:50 pm
I am so sorry to hear about your son. We live in Ohio and I was wondering where you are located. My 2 year old daughter was just diagnosed with CIDP and we recently switched doctors. We now see Dr. Jerry Mendell. He practices both at Nationwide Childrens and at OSU medical center. Google his name as he has a lot of experience with CIDP. There is also a doctor in Michigan, Dr. Richard Lewis, depending on where you are in Ohio. I have heard nothing but good things about Dr. Lewis. He didn’t want to see my daughter due to her age. I am not a doctor, but I recently read a story very similar to your son’s as it was in our local newspaper. It was a young lady who started having problems when she was in high school and is now in her thirties and just got a diagnosis. She has lymes disease. She was checked for it once and it came back that she didn’t have it and now after all these years she was checked again and guess what. Please keep us posted.
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May 27, 2009 at 11:48 pm
Hi Seleene,
You mentioned the nerve biopsy, was there onion bulbing? If there was not, your son more than likeley does not have cidp. If he does, that would confirm the dx in order to warrant continued ivig. I would assume they did heavy metals, lymes, was there a spinal? Was charcot marie tooth explored? Myestanias Gravis? Amlyodosis, lupus? I imagine that mayo would have covered all of those. There are people who have gbs again, as well, there are people that have cidp and spontaneously remitt. My son also has a terrible time with headaches. Stress does play a major role, God knows these illnesses are stressful. I am so out of ideas I am considering chiropractics for manipulation of c 1,2,3,4. Which has to do with headaches, chronic sinus among other things. About the headaches w/ivig, it is common to get them especially since it has been a while. The rate of infussion plays a large role in the reaction. The slower the better, as well, pre meds and continuation of those meds for the duration are helpful. My son too gets the aseptic meningitis reactions too, every month. This time he threw up for 3 days straight, fever, chills, body aches, and we have a slow infussion rate. If ivig is continued, another option is to spread the course out over 2 daqys, every two weeks as opposed to the standard 4 day load. that is something you would have to tweak and adjust according to your son’s needs of ivig. Keep us posted.
Dawn Kevies mom -
May 28, 2009 at 6:40 am
Hi Dawn! I left you a posting in the CIDP section but not sure if you were online and read it!
Selene! So sorry to hear about your son being so sick! I know this is very frustrating indeed! It is quite possible also that it’s a genetic disorder like Dawn mentioned. We all hate that word but it happens to thousands of families a year. I think the nerve biopsy is a good idea. It will rule out several disorders and will let the doctor’s know more of what they could be dealing with. Possibly giving you more answers and then might not even give you any answers at all. Especially if it’s an heriditary problem. Wishing you and your son our best and hope you stay online with us and keep us posted! Good luck and God Bless!
Linda H -
May 28, 2009 at 10:04 am
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 -
May 28, 2009 at 12:53 pm
Hi there. I’m in Michigan & I have a 7 year old with CIDP.
As stated above, Dr. Richard Lewis seems to be the guy to go to in the area. I think it would be worth it to contact him & his office. Toledo isn’t that far away from Detroit – you can just hop on I-75. We went to the Toledo Zoo last year & it was only a 2 1/2 hour drive & I live about an hour north of Detroit.
Could you ask that your son be given the IVIG over 3 or 4 days to help with his side effects? Giving him the lower dose should help. If it were me I would ask to do 25 grams a day for 4 consecutive days.
Kelly
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May 28, 2009 at 7:50 pm
sorry no info
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May 28, 2009 at 11:28 pm
Hi Seleene, You and Your Family-Welcome to The Family! I’m in your area too. If I can help please let me know. I go up to Ann Arbor-U of M and see Dr Teener. He is Awesome! I’m not your text book case either, he is still working on me:D I’ve been to UTMC even prior to my paralysis events (for daily migraine headaches), been to Cleveland clinc, and was given Dr Teener’s name from a Wise senior member on this site-Whom I still owe a case of beer to!!:D
You mentioned Garrett had no allergies prior to all this weakness starting. Do you know when he first noticed reactions to things? Was he given a certain medication that brought it on? Did the vaccination start all his allergies? I’m really curious, because I have a similar situation. I only had 1 allergy prior to having a deadly reaction to a medication in 1999, now I have 28 allergies and paralysis events which followed many years of severe daily headaches. Does Garrett premed with Benadryl and Tylenol before his ivig? If not he needs to, it might help make him more comfortable during and after the infusion. If he does premed and he is still ill afterwards, he might be having the aseptic menigitis reaction to the ivig. The dr can tell you if it is or not.
I had ivig for 2 days in oct 05 for my 2nd event, and ended up with aseptic menigitis-no more ivig for me because of the reaction. I can’t premed due to allergies to both tylenol and benadryl.I’ll send you a private message.
Hope Garrett can get some answers soon. Take care.
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May 29, 2009 at 7:57 am
It sounds like you have tried everything. If you google Dr. Lewis, you will eventually find a little video/story on the site of the hospital where he works. I was so impressed by this as the man in the story had been everywhere trying to figure out what was wrong with him. He finally went to Dr. Richard Lewis in MI and he took a long time and looked over his records and diagnosed him with something and he is doing great now and golfs all the time. I am jealous that your son will be able to see Dr. Lewis as he only sees adults. We live in Shelby, a small town in north central Ohio. There is also a pediatric neurologist in MI named Dr. Acsadi and he is doing extensive research on CIDP and other neuropathys. Pray that God leads you to the answer. He is the true physician.
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May 29, 2009 at 9:34 am
Garrett got sick after a vaccination or a possible virus after our trip to Cancun. Each Dr has his own opinion (but no solutions). His nerve biopsy and muscle biopsy was done 10 years ago when they were trying to figure out what was wrong with him. All were normal
He has been pre treated with benadryal and steroid, but Tylenol and over 100 other drugs for migraines and pain don’t do a thing for him. This last time he took 4 milligrams of Dilotud (sp) and it wasn’t as bad but still pretty bad.
Regarding the IVIG and low antibodies, they were low but not low enough to get the IVIG. Regarding having the IVIG over 3 or 4 days instead, The insurance approves by the visit ONLY so that would reduce the number of full treatments he could have. But I will talk to the Immunologist about all of this..We really had to fight to get the IVIG and she wont re certify until we get a Neurologist to confirm the CIPD. She has already said she will try to come up with a different pretreatment.
I have researched all of the illnesses that have mentioned so far and they just don’t seem to be his case. My next step is to look into all of the Dr’s you all have kindly mentioned.
I have reread the info on GB and he really did seem to fit the profile except for the results from the spinal taps. Garrett thinks he is getting better from the IVIG’s after the initial week of misery, but my concern is that he always gets better in the summer and then crashes again in the fall and it runs until the end of spring.. During that time he is completely debilitated.
If anyone has any other ideas we would be grateful.. We have come to realize that you just about have to figure out for your self your diagnosis!
Thanks again for all your kind help and please keep it coming!
With thanks, Seleene
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May 29, 2009 at 1:48 pm
So true Seleene! So true! Last year I was on the internet researching trying to figure out what was going on with me after I got hit with an attack on my nervous system after having spine surgery! Wasn’t getting any answers at first and was really having a time. And went through a simular situation in the late 80’s before I got diagnosed with Lupus. I felt like I was trying to become my own doctor too! It is frustrating to say the least! Very frustrating! I know your pain but can feel for your son too! Not fun being sick with something and not knowing what to call it! Even worse is the fear of the unknown! I would rather know what I have so I can deal with it and except it than to not knowing nothing at all. I wish you my best!
Hugs
Linda H
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