2 yr old with gbs

    • Anonymous
      September 4, 2006 at 12:54 pm

      hello —
      my daughter, isabelle (26 months), has just been diagnosed with gbs. i have been searching high and low for information about gbs as it relates to toddlers and pre-rational children. we are very appreciative of any information and contacts that is available.
      thank you all very much for your help.
      kc
      919-260-4124

    • Anonymous
      September 4, 2006 at 10:45 pm

      most importantly, is she getting ivig? if not, you have the wrong medical team. at this moment all else pales. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 5, 2006 at 12:13 am

      thanks gene —
      yes, today she finished the last of four doses of ivig, however, i am worried, based on what i have read that the treatment may have been started too late. she was initially diagnosed with viral encephalitis/menengitis so we went down the wrong path for awhile. from the period when she first became a bit wobbly when walking (onset?) until her first treatment of ivig was a little over 2 weeks. do you think we missed the window for full recovery without residual effects? the severity of her gbs thus far is RELATIVELY mild, (no reflexes in her legs, great difficulty standing even with support, constipation — 2 weeks, some aspiration of liquids when drinking, and perhaps some tingling/weakness in her hands), however, the thought of her not walking is so painful. . . .

      thankyou for your help —
      kc 919-260-4124

    • Anonymous
      September 5, 2006 at 8:04 am

      kc,

      it’s never too late to get ivig. the earlier the better to avoid more damage. no one knows how long nor to what degree a gbser will recover. but cuz of her age i can assure you she will make much recovery. nerves need rest & time to heal. she’ll pleasantly surprize you. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 5, 2006 at 9:55 am

      gene —

      thanks for your input! what is the likelihood that isabelle will need ongoing ivig treatments?

      thank you —
      kc

    • Anonymous
      September 5, 2006 at 11:56 am

      KC,

      Just a quick word on the constipation …… this could be that her muscles are too weak to ‘push’ and she is unable to pass stool. Unfortunately this happened to me and ended in extra pain and trauma. [B][I]If,[/I][/B] laxitives do not work soon, please consider an enima. These small hand enimas are not that bad, I unfortunately had to give my daughter them often when she was 2 because of Hirchsprung disease, and can be easily done at home to try and help. Better that than have to deal with worse down the line. I know this is a horrible subject to deal with, but it is often overlooked.

    • Anonymous
      September 5, 2006 at 4:05 pm

      I am so sorry to hear about your daughter…my six year old daughter was diagnosed with GBS in June …after physical and occupational therapy and rehab for the past six weeks she is walking on her own and is getting ready to start second grade on Friday… eight weeks ago when she was in the hospital we never thought that she would be able to start school or be using a wheelchair or using a walker…

      Believe me the thought of your child not being able to walk is more frightening than anything…trust me I was there watching my daughter in a wheelchair when a couple days before she was getting a yellow belt in karate and running on the track team…

      Please do not lose hope and try to stay positive for your daughter’s sake…the IVIG treatments and rehab work wonders…so do prayers…you family is in my thoughts and prayers for your daughter’s recovery…

      Hang in there and stay strong…she will amaze you…

      -Patty

    • Anonymous
      September 5, 2006 at 4:45 pm

      kc,

      as long as this is a normal gbs attack, there will be no need for future ivig. recovery is not all straight up hill. when you over tax yourself you decline & hamper the recovery process. now here is the kicker; these declining peroids due to over doing it can appear just like a real gbs attack. one way to tell which is which is to rest a great deal lying down. resting helps recovery & makes the symptoms lessen. now if it is a real attack [3% of us will have a 2nd real attack], time was wasted resting allowing the bad gbs antibodies to further destroy the nervous system. continued decline, especially more rapid decline, while resting is a sign it prolly is a real gbs attack. real attacks need more ivig. another method [faster results] is to have an older ncv to compare it to a present ncv taken if gbs is suspected. further real damage is instantly known. however a ncv can hurt. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 5, 2006 at 9:08 pm

      gene, ali and kimsmom —

      thank you all for the helpful information. i can’t tell you how fortunate i feel to have found this forum. a true blessing.
      i look forward to talking with you further.

      sincerely,
      kc 919-260-4124

    • Anonymous
      September 7, 2006 at 10:10 pm

      Hi KC,
      Just wanted to let you know you are in our prayers. I hope your daughter is better since we last talked. My boy has had is best day today in two weeks. We are still looking at a long road ahead. I posted a thread tonight. More will follow. Wishing your daughter a speedy recovery. Paul

    • Anonymous
      September 15, 2006 at 10:01 pm

      Hi KC, sorry I have not called you lately. I hope you get to read this. My son just got to come home today. I plan to call you tomorrow so we can talk. I hope you child is better and I hope when this is all said and done we can get together. Please accept my appologies for not calling. Thanks,. Paul

    • Anonymous
      September 15, 2006 at 10:26 pm

      paul —
      great news! i’m so glad you guys are home. this is the first time i have been on the forum in a while and i was glad to read your message. isabelle is doing pretty well — still struggling with the walking and still aspirating thin liquids a bit, however, her spirits are so much better now that we are home. let’s talk soon —
      be well,
      kc

    • Anonymous
      October 5, 2006 at 12:03 am

      Hi KC:
      My daughter Ava was diagnosed with GBS on March 1, 2006 at the age of 2 1/2. On that date, she was flown to Seattle Children’s Hospital in helicopter with a pilot and two nurses. My wife and I drove 3 hours and reunited with her in the emergency room at 300am. We spent the next 24 days by her side. Ava has had 100’s of physical therapy sessions, “relearned” how to crawl, walk, eat with an utensil, etc.

      I am very intersted in talking with you about GBS from a parents perspective and have lots of information including dozens of publications from medical journals that include studies specific to GBS in children.

      I have found it difficult to find other parents with young kids to discuss these topics. It is a very different situation when compared to adults since the kids cannot articulate their problems as well. I will try to call you in the next days. I am sure we can learn from each other’s experiences. Keep up the fight! Sincerely, Sam

    • Anonymous
      October 5, 2006 at 6:48 pm

      sam —

      i would love to talk with you. please give me a call if you get the chance — 919-260-4124.

      be well,

      kc