My 8yo son has had GBS for 2 years. He’s made some improvement but still has a ways to go for recovery. He’s been seeing the same neurologist the whole time and while I don’t have reason to believe the doctor isn’t providing proper care I also thought that maybe I should visit with a second doctor to just have a second set of eyes on my son and in case the other doctor had any new ideas or advice. Does anyone know of a doctor in the San Francisco Bay Area they are fond of with experience in pediatric GBS? Many thanks and best wishes to you all.
Dan
Hi all,
This is my first time posting and I was hoping the community could help with something I’m struggling with. I have an 8yo son who was diagnosed with GBS exactly 2 years ago. His symptoms slowly improved but have seemed to plateau. He has not had a major slide back to the initial severity but it seems like he has stopped improving and it’s been a while now without recovery. Can anyone explain or link to a resource that can help me figure out when a GBS diagnosis switches to a CIDP diagnosis and if there is anything that changes in terms of treatment? He has had two IVIG treatments (once when initially sick and then once about 6 months later)…he made progress after both but the doctor won’t give him more. Just feeling a bit lost atm and would appreciate any ideas. Thanks and much love to you all and your loved ones going through this.
Dan
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Hi I was diagnosed with recurrent GBS last month. A “mild attack” which means that I could still walk (although wobbly). Received Ivig and am actually finding that the recovery is harder than the attack. During the attack I had rising paresthesia both sides and then quadriceps weakness. But a month post attack I feel muscle pain with even minor use, more paresthesia and other weird nerve sensations, especially when I’m stressed or have done some walking. I know many of you have experienced much worse (although I’ve had multiple attacks – not CIDP) but just wondering if anyone else found the recovery more difficult than the attack. I don’t know how I’m going to be able to do the pt exercises.
UK based – Our father (aged 76) has been hospitalised with a severe case of GBS (suspected AMAN or AMSAN variant). Ventilated (tracheostomy) in ITU since end of March until end of May (2 months). Then transferred to a neuro rehab ward within hospital. The Speech & Language Therapist have been working with him on his swallow & trying to improve his lip seal. Due to extensive research we are aware everyone’s recovery is different, not linear & takes a very, very long time. The speech & language therapist have said our father would benefit from a PEG being fitted as his swallow/lip seal are too weak to enable him to drink & eat. We are wondering if we could ask what other people’s experience is regarding time scales of when they regained use of swallow/ lip seal & when they were able to drink/eat again?
UK based – Our father has been hospitalised with a severe case of GBS (suspected AMAN or AMSAN variant). Ventilated (tracheostomy) in ITU since end of March until end of May (2 months). Then transferred to a neuro rehab ward within hospital. The Speech & Language Therapist have been working with him on his swallow & trying to improve his lip seal. Due to extensive research we are aware everyone’s recovery is different, not linear & takes a very, very long time. The speech & language therapist have said our father would benefit from a PEG being fitted as his swallow/lip seal are too weak to enable him to drink & eat. We are wondering if we could ask what other people’s experience is regarding time scales of when they regained use of swallow/ lip seal & when they were able to drink/eat again?
UK based – Our father has been hospitalised with a severe case of GBS (suspected AMAN or AMSAN variant).<span class=”Apple-converted-space”> </span>Ventilated (tracheostomy) in ITU since end of March until end of May (2 months). Then transferred to a neuro rehab ward within hospital.<span class=”Apple-converted-space”> </span>The Speech & Language Therapist have been working with him on his swallow & trying to improve his lip seal. Due to extensive research we are aware everyone’s recovery is different, not linear & takes a very, very long time. The speech & language therapist have said our father would benefit from a PEG being fitted as his swallow/lip seal are too weak to enable him to drink & eat.<span class=”Apple-converted-space”> </span>We are wondering if we could ask what other people’s experience is regarding time scales of when they regained use of swallow/ lip seal & when they were able to drink/eat again?<span class=”Apple-converted-space”> </span>
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