14 month old boy with GBS
AnonymousDecember 2, 2006 at 4:58 pm
My son was diagnosed with GBS on October 29. He was hospitilization for 2 weeks with this disease. He was just starting to take steps and now cannot even crawl. He is on the mend and is improving, but would like to hear from people with similar age group as to expectations and treatments. It is most difficult as he is at an age where he cannot communicate his pain except through yelling/screaming when he is having problems. Please respond if you know of anything that could help.
AnonymousDecember 2, 2006 at 10:16 pm
Hello rusty & welcome,
Try to be patient and calm and your Son will be too. Try to play quiet games or read books that keep him quiet. He will need mental exercise more than physical exercise. Keep his mind busy. Make sure he gets plenty of sleep more than just rest! The skin becomes very tender to touch so think about what you are doing that could cause discomfort. Headaches can also be part of the GBS. Also double vision which can be scarey and frustrating because you can not read or watch tv. I am sure the staff has helped you figure out most of these things already! If the illness has effected swallowing that becomes a problem too when it comes to comfort. Usually they relate food to comfort. What is comes down to is being creative! Exhaustion is a great part of this illness and lasts a very long time after other effects cease!
Happy Holidays….ask family members and neighbors to send cards…that can be a great part of your visits reading cards and talking about those neighbors and family members during the holidays!
PLease keep us posted in his progress….I know it is hard for an adult, but the children and during the holidays has to be very hard for everyone! Remember some decorations in his room where he can see them.
As a caregiver take care of yourself and get plenty of rest too!
AnonymousDecember 16, 2006 at 11:46 am
My 2 1/2 Year Old Was Diagnosed With Gbs On November 2nd. I Understand Your Frustration. Even Though She Can Talk, She Still Can’t Describe What Is Going On With Her Body. She Has Had Tantrums Where She Can’t Seem To Get Comfortable, And Is Frustrated. They Have Seemed To Get A Little Better Every Week. (she Didnt Have Tantrums Before Ths) Nights Seem To Be The Worst, We Have Found That Just Giving Her Motrin Before Bed Helps Her Sleep. We Also Go To Pt 2 Days A Week. It Has Been About A Month And She Is Improving. She Can Take A Few Steps On Her Own, But Is Very Afraid To Let Go. Its Been Hard Watching Her Go From Being So Mobile To Being Dependent On Me. I Know That Everyone Recovers At Their Own Rate, But I Have Also Been Wondering How Long It Takes Toddlers To Recover, And Havent Found Alot Of Answers. My Thoughts And Prayers Are With You. Dawn
AnonymousJanuary 26, 2007 at 11:55 am
It is now Feb 25. My grandson has shown much improvement. He can now stand on his own for 10 seconds or so, but still doesnt have his complete nbalance. He is much happier now and very energetic. We still notice him shaking his hand once in a while so expect that is him feeling numbness or tingling. He sleeps well and doesnt seem to be in any pain. He is still on medication for pain, but hope to wean him off of this soon. What a frightening ordeal over the last months. I thank goodness this happened to him when young as it doesnt have any impact on school, friends etc as an older chils would.
AnonymousFebruary 15, 2007 at 1:00 pm
My son Paul had it when he was almost 5 months old. Residually, our problem is that one foot, on the side with the most damage has a tight heel cord and his mussels are not developed to lift his foot at the ankle. When he started walking he walked on his toes, normal for children I was told. It was not until his second birthday check up that we were told he could not put his foot flat due to the tightness. He has been in therapy since and it is a constant battle with his growth. We make progress then he has a growth spurt and we loose ground. He wears a brace on his left foot to keep his foot flat; otherwise he walks with it up.
Other than that he is a normal 4 year old boy who jumps off everything 😀 and we are very blessed!
Take Care! kcp
You must be logged in to reply to this topic.