Mom2fourwa

Your Replies

  • Mom2fourwa
    April 15, 2014 at 4:23 pm

    Hi Amber-
    My 12 year old son was diagnosed with GBS the end of April of last year after slowly losing the ability to walk over the course of 6 weeks prior to his diagnosis. He had a odd “sub acute” version which resulted in a 3 month hospital stay and him developing a type of joint contracture at his knees due to pain and now I believe a type of “shortening” of his nerves. He is still in a wheelchair but with Physical therapy we have gotten his bent knees from a seventy degree bend to only a 15 and we are still working to get him straight so he can walk and play sports again.

    I have found that no two cases of GBS seem to be the same. It is great that your son is still mobile and though it seems like FOREVER he will improve as his nerves regenerate they just take a long time… I did look into different vitamins that are suppose to help (b12 etc) but after testing it was determined that Chad’s B12 levels were already sky high (odd once again). One thing that we are doing that we feel has been very helpful for him is a type of physical therapy known as Craniosacral therapy- it is kind of the voodoo of physical therapy 🙂 Its a hands on/touch method that works gently on the dura surrounding the brain and nerves and after just a few treatments with a skilled therapist most of Chads autonomic symptoms- high blood pressure, nausea with movement and early satiety had resolved (and this was after 8 months of no change) We also think it has helped in getting his tighten tendons and nerves to relax so his legs have slowly straightened. The orthopedic surgeons and the rehab docs at Seattle Childrens hospital were calling his contractures completely fixed and were talking about cutting his femurs to shorten his legs and doing a tendon release surgery prior to our success with this treatment. Now they are amazed at his progress and think he can get there “on his own” with no intervention.

    I can’t say that all of the above things wouldn’t have happened on their own…maybe it was just a coincidence in timing of his regeneration, but the therapy doesn’t hurt and we truly believe it has helped. It also may not be needed for your son but is just one suggestion.

    Also I just wanted to let you know you are not alone in your feelings of helplessness. This process is so scary and the road to recovery is so very very slow sometimes I just want to scream. But stay strong for your little guy…he will get better and be running around again one day. Let me know if you want to email directly I’d be happy too.

    Take Care

    Annette

    Mom2fourwa
    October 7, 2013 at 12:58 pm

    Thanks GH for the encouragement. He has gotten a lot of strength back..sometimes it is hard for us to judge how much but looking back at where he was I know it is improving even if slowly. We haven’t seen any sort of relapse of the weakness other than the tremors he has seem to have gotten slightly worse in more areas than just his hands. We are going back to neurology this week for them to re evaluate that but I doubt they will have much insight. I am also getting him into a Physical Therapist that works more with viseral manipulation, myofacial release and even some Cranio sacral therapy. I feel that the exercised based rehab he has had for the last few months has helped to increase his strength but we have gotten no where on the contractures so before we take the scary step of leg shortening I want to give the slow hands on approach a try. We have to pay out of pocket since they don’t take our secondary insurance and our primary has reached its cap of treatments for the year. I think I may press to also stay with at least the Occupational Therapy part at the place he is being seen now as he does have a lot of trouble with the fine motor skills and we want to keep working on that.

    One odd thing happened yesterday that I wondered if you, or anyone reading this had experienced? When Chad got up in the morning he started to complain about a pain in the top/side of his foot, within a few minutes it was so painful he was crying. I tried rubbing, heat, elevation (which helped the most) and Aleve. After 30 minutes or so it calmed down and oddly enough we noticed he could move his toes quite a bit on that foot! He has had no more than a twitch before that. Is it possible that the pain was the nerves making that “final” reconnection? Has anyone heard of anything like this…it was so odd…but we are very happy to see movement in his toes again!

    Mom2fourwa
    May 30, 2013 at 9:44 pm

    Thanks for the replies! I am glad I finally have a moment to respond because I do have many more concerns and questions. First of all to answer you GH, Seattle Children’s is a teaching hospital so while he has a neuromuscular Dr. that diagnosed him and is “generally” overseeing the treatment, he has had several attending neurologists, several “Fellows” and a couple of “residents”. Along with a Pain mangaement team, a Rehab team, a phsyciatric team, and a surgical team since he is on their floor for the Plasmapheresis. I do feel that this causes confusion and possible lack of understanding about his functional weakness since each person that does the basic MMT muscle testing is using their own interpretations. Plus things get said on rounds that I am not sure where it is has come from. Our last attending (who happens to be the one who told us at our first admission and again at followup that this wasn’t neurological) said to me after I confronted him about not “seeing” the true functional weakness. “Well he was able to stand this morning in front of his commode. That is good” I looked at him baffled and said “No I told you he can’t stand” he bumbled and said “Well I know that was said at rounds this morning..I know he can’t rise but once he was up he stood for a moment” UH NO! he can barely roll to his side to use a hand held urinal I have to bring his legs over for him…it is this that frustrates me because I don’t know what is in his chart or how they will know that this syndrome has stopped and is on the recovery side if they don’t even know what his baseline is to judge decreases.

    @ Dawn – it is so good to hear from a parent who has experienced something similar. Chad’s IVIG was started the day after his diagnosis. I believe the neuromuscular Dr. said that while they could go for a 5 day treatment plan they are able to treat with a 2 day course it is just basically done at a faster flow rate once they determine by starting slow that there will be no adverse reaction but apparently is the same amount of immunoglobulin. I will have to research this more. After the two weeks with progressive worsening of his symptoms (weakness) and continued pain they readmitted him and decided to do the plasmapheresis for 5 every other day treatments immediately followed by 2 IVIG treatments again. Now it has been 3 fulls day past that and we are still waiting to see visible improvement. It is hard because he has such bad muscle contractures in his knee area and somewhat in his arms that the pain is pretty intense especially when he is moved or his legs are unsupported and try to fall straight. He still can not move his legs out or in but can rotate side to side a bit as long as they are pulled up near his hips. Your son had also gotten to the point of being unable to walk? How long were his symptoms evident before he received a diagnosis? The complete lack of any resolving of his symptoms is what has me worried. They call him on the severe end and yet he has no difficulty breathing or respiratory involvement (Thankfully) Now I am hearing from PT that all of his recent areas of increasing weakness is strictly from deconditioning not syndrome progression even though he was walking and even attending school (with difficulty) up until his admission on 4/29. Also the ability to pull his legs towards his body while laying in bed was just lost several days ago. So I would find it amazing that he has lost all of his muscle tone and had so much atrophy from really just 2 weeks..I guess it can happen but I would have thought he would at least be able to push the keys on a keyboard as a sign of recovery. It is all just so confusing. I am looking to possibly get a second opinion but there are no other pediatric neurologists in the state of Washington. Do you know of someone who sees children that is well versed in GBS/CIDP and has successfully treated at least several children? I have seen the list of Centers of Excellence but would like to know which ones have treated maybe difficult cases. I would also love to communicate more if you would like to contact me my email address is nunamaker6@gmail.com.
    Thanks again!
    Annette