19 month old w/GBS
September 8, 2010 at 8:08 pm
Hi everyone – my 19-month-old son returned from the hospital this weekend after being treated for 5 days w/IVIG for GBS. He is doing well, but is still unable to walk. Because he is so young the docs say his prognosis is good & we will be starting physical therapy asap. However, we do have some lingering questions & I’m hoping you all can provide some insight.
Of course, my #1 fear is this recurring. His symptoms began (night wakings) exactly 10 days after he received his chicken pox vaccine, although the neurologists are split on whether that may have triggered it or just some other virus that was going around. How cautious will we need to be regarding vaccines & just general flu season exposure in the future?
And since my son is so young & unable to fully explain to us what he was feeling, we are wondering whether the description of it feeling like ‘pins & needles’ is correct? When we didn’t know what it was, my husband had a hunch that he may have been experiencing the muscle aches & pains like you get when you have the flu.
Thank you very much for your time – we appreciate your being here –
September 8, 2010 at 8:25 pm
My son was 9. Our first dx was gbs, well actually, first was a psych dx, second, cmt third gbs and after recurrence, cidp. The pins and needles description is accurate. My son complained of his hamstrings burning. About the prognosis, the reason recovery is easier for children is because their size allows them to heal faster. Healing starts at the bottom and is a mm a day provided there is no new attack. We had our second attack about six months later, the symptoms started to reappear at about 3-4 months. By the time they are noticeable, it has already begun before that. Be vigilant in watching for increased weakness or pain. Communication at that age will be difficult. One way to have tangible “evidence” would be by asking the pt to do a baseline eval. They can use a dymamter (spelling) to take grip measurements. There is no speculation or “comparable observation” regarding clinical presentation. They will do other measurements as well. If you suspect increased weakness they can re-test. A more invasive set of data could be a baselione ncv/emg. Not sure if they could sedate a 18 month old and still get accurate results? That is how we gauge if there is a decline, we repeat if there is a question and compare to the last.
About the flu shots, immunizations, it is your own personal choice. But your childs immune system was possibly altered by a live vaccine per your interpretation, so I personally would seriously reconsider future live vaccines if it were my child. We do not get flu shots and were told not to by our neuro and imunologist. At a symposium 2 years ago, they said if you suspect you got gbs/cidp from a flu shot, it would probably be wise not to get another. I would imagine vaccines would be something to consider as well. But I am just a mom offering an uneducated opinion.
If you would like to talk, I can pm you my cell.
AnonymousSeptember 9, 2010 at 1:12 am
[LEFT]My daughter was dx’d with GBS in December 2005 & after a relapse in March 2006 she was dx’d with CIDP.
She complained of having “strawberries & nuts”. We had no idea what she was talking about. Later we learned the “strawberries were the pins & needles” and the “nuts” were charlie horses. I have sense learned the pain is like when your leg or foot falls asleep & you try to walk on it.
In our experience, the 1st symptom was pain. She would wake up in the middle of the night screaming because her arms & hands hurt. Then her feet & legs started hurting. By the time she was admitted to the hospital she was nearly paralyzed.
As far as vaccines go, the politically correct thing to tell you is that you need to make the decision for yourself but I’m not usually politically correct…so I will just be honest with you. There is growing concern about the safety of vaccines, like the chicken pox vaccine. I know Emily started stuttering after she received hers…I can’t say if it was a coincidence or not but knowing what I know now really makes me question the safety of the vaccine.
The best advice I can give you is to research any & all vaccines well in advance of when they are needed. I know Emily will never get another vaccine of any kind. Many say live vaccines are the ones to worry about but I believe the fillers & additives may have something to do with the increase in autoimmune diseases as well.
Also listen to your gut instincts. This is something that took me awhile to do but I tell you, once I did things got much easier.
AnonymousSeptember 9, 2010 at 10:00 am
I developed a severe reaction after the flu vaccines last year, and 9 months later, I probably have a chronic condition now like fibro or chronic fatigue syndrome. I have a 2 and 4 year old and I do not think I will be giving them the flu vaccines this year.
It is tough because you want to protect your children and I think the childhood vaccinations are important, but there are a lot of people out there that say that these caused problems, including autism, which has been disputed I know. What I do is try to space out the vaccines and not give them more than like 2 or 3 at a time. If your child possibly had a reaction to this chicken pox vaccine, then you will need to discuss it with your doctors about future vaccines because from what I have read on here, once you get GBS, you want to try to avoid vaccines. Although I think some people have gotten the flu shot after GBS and been ok, so it is tough to make that choice. Research as much as you can and talk to the docs.
I have been to several docs and they all have been reluctant to trace my problems to the vaccine and have tried to blame a “virus.” All I know is that I was 100% fine before the vaccine, had symptoms 4 days later, and my health has not been the same since, so I 100% attribute it to the vaccine. I am going to be filing a vaccine injury claim with the govt. I will probably not be successful, but what have I got to lose. And they need to be aware that these vaccines can cause reactions.
September 14, 2010 at 8:08 pm
Thank you all very much for your replies to my post about my son.
He is doing well & while he still can’t walk he has made some progress sitting up on his own & reaching for things.
I see that I will have a lot of homework to do regarding his future immunizations.
Our next hurdle is getting his physical therapy started. The program that will provide for it is supposed to be very good, but it’s taking forever to get going. In the meantime we are watching him like hawks for any sign of recurrence.
Thank you again,
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