Hi! Thank you for having me. I'm new to the group. My 11 yrs old was diagnose with GBS Feb this year. She's able to walk again 3 weeks after IVIG. I considered ourselves very blessed as it never escalated to anything more serious. I'm glad that I've found this group as the discussions here has already answered some of my questions. But since my daughter is still young, she seems not fully understand the implication of GBS yet. She's doing a lot better, but just the night before her pain is worsen & woke her up at night for more then an hour. As a 11yr old she can be lay back at time & not wanting to do any physical activities especially when in front of the TV. Other times she'll forget to limit her activities when with friends then ended up exhausted at night. How do I know how much she can or cannot do? She's off Gabapentin for over a week, it seems to give her side effect like chest pain. But last night she complained of pains in the knee & now some pain in her foot, which was never there before. Has anyone ever has new pain? She also has abdominal pain almost every night, doctors think it's unrelated. Anyone experienced similar?
Hi, I have a daughter, she was diagnosed GBS two years ago. She has similarly problems like yours daughter. She doesn’t like to do exercise so we bought her a dog,and its great because she have to go out, walk with him…I think walking is the best way(and easy) for her legs, and her knees (when your muscles on legs don’t work right, your knees have to do that, so its painful). We also trying to eat healthy (Mediterranean food, and Paleo food, we are from Croatia), and I saw some changes after some time …after two years she is diagnosed CIDP(chronic sort of GBS) . But every case is different. After one year she was great, after lots of walking, she started to training taekwando three time a week, and sometimes I think its too much, but it isn’t. The pain is normally in this situation, because muscles have slept. for some time…,
Hi my daughter was 6 when she fell ill with GBS and the symptoms are identical to those you describe.
Gabapentin was the best thing for pain control that we found and yes she had new pains popping up in random places.
18 months on she still has stomach pains and they seem to happen most when she’s tired at the end of the day and first thing in the morning when she wakes. The doctors have also said it’s unrelated and have tried anti acids and now lactalose for constipation.
But there are a lot of nerve endings in your stomach so I think it must be more sensitive .
This site has been a huge help to me. I hope you find support too.
I was 57 when I got it and my brain tumor. So my situation is very different. Pain and fatigue have been such a life-changer for me.
I would recommend consulting your physical and/or occupational therapists regarding activity do's and don'ts.
Molly
Hi Evalyn…sorry to hear all this but i think at the age of 11 her recovery will be very fast. Below mentioned points may be helpful for you-
- Her muscles should not fatigue at all. It is really very essential in GBS.
- Physiotherapy is must but her muscles should not fatigue. Whenever she feels tiredness in any activity, take rest and then she may start it again.
- Diet is very important. But take care of her weight also. It should increase much. Less weight will be helpful for her during walk and run in future.
- Always try to make her happy.
- Any Physiotherapist is visiting?
All the very best…
Regards,
Chandan Rajpurohit
her weight should not increase much…
Thanks Doda! I'm sure she'd love to have a dog :)
Sorry to hear your daughter has CIDP, hope she'll keep it under control.
doda said:
Hi, I have a daughter, she was diagnosed GBS two years ago. She has similarly problems like yours daughter. She doesn't like to do exercise so we bought her a dog,and its great because she have to go out, walk with him...I think walking is the best way(and easy) for her legs, and her knees (when your muscles on legs don't work right, your knees have to do that, so its painful). We also trying to eat healthy (Mediterranean food, and Paleo food, we are from Croatia), and I saw some changes after some time ...after two years she is diagnosed CIDP(chronic sort of GBS) . But every case is different. After one year she was great, after lots of walking, she started to training taekwando three time a week, and sometimes I think its too much, but it isn't. The pain is normally in this situation, because muscles have slept. for some time..,
Thanks Chandan for the suggestions. I'll keep them in mind. She has physiotherapy once a week. I'm thankful that apart from the occasional pain she is always in good spirit.
Chandan said:
Hi Evalyn..sorry to hear all this but i think at the age of 11 her recovery will be very fast. Below mentioned points may be helpful for you-
1. Her muscles should not fatigue at all. It is really very essential in GBS.
2. Physiotherapy is must but her muscles should not fatigue. Whenever she feels tiredness in any activity, take rest and then she may start it again.
3. Diet is very important. But take care of her weight also. It should increase much. Less weight will be helpful for her during walk and run in future.
4. Always try to make her happy.
5. Any Physiotherapist is visiting?
All the very best..
Regards,
Chandan Rajpurohit
I'm so glad you've replied. As 3 doctors has told me the abdominal pain is not related to GBS, but my girl has it since the onset of the symptoms. But I'm thinking of getting an X-ray anyway just to be sure. It is comforting knowing I'm not going through this alone.
Worried mum said:
Hi my daughter was 6 when she fell ill with GBS and the symptoms are identical to those you describe.
Gabapentin was the best thing for pain control that we found and yes she had new pains popping up in random places.
18 months on she still has stomach pains and they seem to happen most when she's tired at the end of the day and first thing in the morning when she wakes. The doctors have also said it's unrelated and have tried anti acids and now lactalose for constipation.
But there are a lot of nerve endings in your stomach so I think it must be more sensitive .
This site has been a huge help to me. I hope you find support too.
Thanks Molly. will definitely consult the therapists.
Molly said:
I was 57 when I got it and my brain tumor. So my situation is very different. Pain and fatigue have been such a life-changer for me.
I would recommend consulting your physical and/or occupational therapists regarding activity do's and don'ts.
Molly