need advice 2.5 yo w/gbs
AnonymousJuly 17, 2007 at 10:46 am
I am new here. My situation is unique. I have a two year old foster son who has GBS. He is from Haiti and we got him into the States on a medical visa. We went straight from the airport to the ER. He had 2 double doses of Immunoglobulin treatments and was released after a week. Upon admittance he was completely paralyzed in all four appendages and was doing abdominal breathing. After first treatment he was beginning to move his arms. He has been home for three weeks now and is able to move his arms and legs, feed himself, but cannot crawl. He can roll over. Since he is here on a medical visa all of his care must be donated – he cannot accept governement agency help. So I am looking for a pt to see him for free. In the meantime I was wondering if anyone had suggestions for exercises we can do at home. I have mostly been doing stretching exercises with him to avoid contractures – specifically in the heal. He moves a little more each day and we are hopeful. We are unsure when he should return to Haiti. What is the likelihood of a relapse? Would it be life threatening, or require more immunoglobulin treatments? His family in Haiti misses him, but there are no respirators or treatments for this in Haiti. Docs seem to give conflicting info and are unsure themselves. Thanks for any advice.
Heather in VA
July 17, 2007 at 11:37 am
What a wonderful person you are to give your love and caring to a total stranger with a difficult ailment!
I have a ten year old w/ gbs or cidp, we are working on fine tuning the dx. Anyway, you will learn that rest is the most important thing for recovery if you read posts on this sight. I did not listen to that and maybe that is why we are in this predicament of uncertainty.
PT will not help him get better faster, this is not like a regular injury. A simple way to explain it is that the nerves have been damaged, (to what degree?) they cannot receive messages from the brain that are being sent to the muscles. Untill these nerves repair, regaining muscle ability just is not going to happen. I am assuming this is a relatively new dx. If so, muscle atrophy is not really an issue. If it becomes long term, then yes, some degree of pt would be adviseable.
We were not as severely affected as most, so I cannot speak from experience, only from what I have read from others posts. I do know that the journey is a long, hard, patient one. Movement, rolling over, crawling, wheel chair, walker. After repair has started, fatigue can set in with too much exertion, residual symptoms can occur. This is where our problem is. We do not know if we just did too much too soon and residuals set in, or if we have cidp.
Watch closely to make sure there is no regression in ability, if so, go to the neuro to make sure it is not cidp. Good luck to you, and I pray that God keeps you strong and safe while you so graciously care for this poor sick little child!
Dawn Kevies mom 😮
AnonymousJuly 17, 2007 at 11:51 am
hi heather & welcome,
as dawn says, rest is critical to gbs recovery, not easy w a 2 yr old. some exercise is needed to avoid muscle atrophy. sounds like you are doing the right thing in this area. help him do the things he would normally do for his age, eg. crawling. keep him here as long as possible. 3% chance of another gbs attack. it requires more ivig. a relapse is not a real attack. it is brought on from too much exercise. it feels like real attack & does hinder recovery. super rest is then mandatory. gbs is seldom life threatening. gbs is rare & it is usual for docs to be non-experts. you can gain much info here. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 17, 2007 at 1:33 pm
Thanks to both of you for your responses. It gives me some peace and comfort to know that not getting official PT at this point is not delaying his progress. He seems to make progress on his own each day – subtle differences in his abilities. Today he was sitting and using his hands and wiggling his hips he was able to shimmy his way across the room. he was very proud of himself(: My greatest concern now is that if he needs to be here long term – more than 6 mos or so – that he will have difficulty adjusting when he goes home. It is a balancing act of weighing his physical versus his emotional needs. What is CIPD?
Heather in VA
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