GBS Recovery for a 2 year old

    • Anonymous
      April 15, 2014 at 1:36 am

      My name is Amber and I am a mother of a 2 year old little boy who’s name is Ethan and he was diagnosised with the Miller Fisher variant of GBS on February 16th 2014. Here’s our story:
      On a Sunday morning my son woke up very glassy eyes and unable to open his eyes completely. He also was unable to track with his eyes he would have to move his entire head. I took him to the local walk-in and they told me he was just sleepy. By that evening I was noticing that when he was walking his right foot was pronated and he was stumbling more often. We went to the emergency room and we took an ambulance to the children’s hospital. Once there he was diagnosised with GBS. By day 2 in the hospital he was unable to walk, sit-up, or move his head. They began IVG treatment and this went for five days. Once the IVG treatment was completed Ethan was standing with assistance, but not was not walking or sitting. We spent 4.5 weeks in the hospital and were discharged on March 10th. He continues with PT twice a week. We had a follow-up appointment with neurology and physical medicine at the children’s hospital. They prescribed braces for his legs. Ethan is currently walking on his own, but he is very wobbly and can not pick his feet up more than 1-2 inches. This was a little boy who was running and playing with his older brother before all this happened. He was so self-sufficient. This is a very short synapse of the last 2 months. Ethan is very weak in his torso and his legs and we have seen no improvement since leaving the hospital.
      I am wondering if anyone has any suggestions on what I can do to help his progression. I feel like I could do more. I have been trying to see if there is anything dietary that can help in recovery or if there are any certain therapy’s that parent have seen help more than others. I am just wanting my little boy back. Any advise would be greatly appreciated.


    • 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


    • Dee
      July 29, 2014 at 5:23 pm

      Hi Amber – I am sorry I hadn’t seen your message until now. I hope that things have improved for Ethan. In regards to Annette’s message above, my son had an occupational therapist who also happened to be a craniosacral practitioner (she did not use craniosacral with him specifically but I think her knowledge of it influenced the therapy she did do with him which was very productive).
      I understand how frustrating all of this can be but hang in there. When my son was recovering I couldn’t envision the super energetic 5-year-old dancing around the house that he is now. And remember that you know your child better than anyone so if you have a gut feeling about something go with it, you are probably right!
      Please let us know how Ethan is doing –
      Best wishes,

    • Jyn
      September 30, 2014 at 6:26 am

      Hi Amber. Sorry i did not reply before but i think was too engrossed in our son’s condition. Your son Ethan got diagnosed while we were being discharged for the same condition. Hope your son has now improved. How is he? Mwaniki has improved greatly. He is now walking on his own though not very stable as any distraction makes him fall. He is also now attempting to jump though his legs are not getting over the ground but we just encourage him and tell him ‘yes, you are actually almost off the ground’. He misses doing all his previous activities and sometimes questions why the disease just selected him among so many children. We understand what you are going through right now. Am also goggling searching for diet to feed him on. Lets trust God for total recovery. If Dee’s five year old is running all over again, even our kids will too. All the best.
      Jyn (Mum to Mwaniki)