Reply To: GBS Recovery for a 2 year old
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