11 yr old girl with axonal form of GBS

    • Anonymous
      March 3, 2007 at 5:07 pm

      Hi, my 11 yr old daughter had a bad bout of the flu, which seemed to get better, expect for extreme fatigue and then weakness followed by the inability to walk. (At which point, we went to the doc, then ER…).
      She was admitted to the hospital on 2-8-07 and discharged 2-13-07 after being tested extensively. EMG, Spinal tap, CT scan of her head, MRI of her spine, lots of misc blood tests. Nothing was conclusive, nothing pointed at anything for sure. No elevated protein in spinal, EMG normal or close to, reflexes present. No breathing issues or paralysis resulted, and they said, go home, it’s a mild case of GBS (probably) and she’ll be back to normal in a couple weeks.

      Well, there is no improvement, aside from the fatigue lifting considerably. She still cannot walk or stand, but has feeling in her legs and still has muscle strength. She can go short distances (very short!) with a wheeled walker, but her legs twitch and jerk. We are doing physical therapy.

      Yesterday followed up with Neuro doc; her reflexes have diminished (not disappeared though) since she was released. Now he says he believes she has the axonal form of GBS, and that we will just have to wait longer (6 months or so) for recovery. He said if no progress in a month, they’ll do another EMG and then possibly follow with Ivig.

      Does anyone have any experience with a child with this form of GBS? While we are very thankful that she didn’t have to experience paralysis or ventilator, we wonder what her recovery might be like. Gradual, slow improvement as nerve regenerates? Or does it happen in fits and starts? Or no way to predict?
      Should I push for more info about Ivig? Everything I read seems to indicate that sooner is better, but maybe it is different for this form of GBS. I know there are also potential side effects and reactions as well, and unless it would really speed recovery for sure…not sure I want to put her through another thing.

      Thanks for any advice anyone might have.

    • Anonymous
      March 3, 2007 at 10:03 pm

      Wow! What a lot for an eleven year-old to deal with! If you’ve been reading on this site, you know that GBS stands for Getting Better Slowly. I had a mild case begining in August 2006 and I am still struggling with muscle stiffness and pain in my legs. I am a LOT older, however 😀 which must make a big difference! Hang in there — take one day at a time!!!

      Prayers and best wishes to you and your daughter!

    • Anonymous
      March 4, 2007 at 2:05 am

      hi mom & welcome,

      find out if the emg included a ncv, recording both the m & f waves. if so, it should tell myelin vs. axonal damage. if not, they are not that good w gbs. all forms of gbs are better off getting ivig asap. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • March 4, 2007 at 10:58 am

      Hi my son is 10, and we have been dx since 10/06. It is so frustrating to watch your child be so helpless. We are not clear yet if we have aidp(gbs) or cidp. Keep on investigating,questioning, and seeking other opinions! Good luck to you! PS There aare tons of people who can help! AND listen. Thanks

    • Anonymous
      March 4, 2007 at 3:55 pm

      Hi Cincymom,

      Your daughter should have had IVIG ASAP. As we speak her nerves are still being damaged. IVIG halts the progression of GBS, remember this is not a cure, just a treatment to halt the nerves from being damaged anymore. If I were you I’d be calling that Dr and have him order IVIG ASAP. Some Drs don’t realize how much nerve damage tht is done without IVIG.

      Wishing your daughter well.

    • Anonymous
      March 5, 2007 at 5:20 pm

      Thanks everyone. I have spoken with the neurology nurse and expressed strong concerns about waiting if IVig can help her now. She’s going to have the doctor call me asap.

      Meanwhile, any other advice on anything: diet, supplements, water therapy–anything anyone else has found helpful either before or post-IVig?

      And if someone can tell me about what IVig treatment itself is like, that would be good to know. Is it typically inpatient or can it be done outpatient? What sorts of side effects may occur? Of course if it is what will help I want to do it, but want to know as much about it as I can.

      I appreciate your encouragement and advice and prayers.
      To Dawn: Hang in there! Sounds like you have a lot on your plate and I really appreciate your taking the time reply. Hope your son is doing better soon.

    • Anonymous
      March 5, 2007 at 10:37 pm

      ivig stands for intra venous immuno globulin. immunoglobulin contain healthy IgG antibodies from thousands of blood donors. high doses of immunoglobulin can block the damaging antibodies in your blood as well as adding antibodies to your body to fight the attack. ivig is usually given in the amt of 2grams/kilogram of body weight. this amt is usually divded into 4 or 5 equal amts and given once a day for 4 or 5 days. i have heard where in at least one case recently the amt was divided in 2 and given in 2 days. starting rate of delivery should be no more than 150ml/hour & is usually premeded w 2 benedryl & 2 tylenol. can be done in, out, or at home. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 9, 2007 at 11:07 pm

      I’ve had ivig 2 times(12 total doses). They start with an iv then they usually premedicate with some benedryl and tylenol. Some use low dose prednisone also. It takes for an adult(small) about 4 1/2 hours. I weight 120 lbs and they dose it by weight. I had no real side effects. sometimes after I had a mild headache but I have these anyway so hard to tell if side effect. Rare side effects are allergic reaction, hepatitis, kidney damage, hemolytic anemia. The IG is filtered for virus protection. Because it took so long to go in they couldn’t do it with home iv and I had to go to hospital as an out patient every day.
      If she is still worsening I would demand repeat NCV by neurologist and if they don’t I would change neuro’s. You may try a thread to see if anybody in your area knows who is good. Where are you? Present to the nearest Children’s hospital is other good option. Time lost is nerve lost if she is still declining. I’m still at a loss as to why they haven’t repeated the NCV/ tried the ivig if they are calling it GBS. It is NOT TRUE that ivig is saved for only those on vents/icu. If he said this I would get another neuro. I was neither on a vent or in icu and I had a life saving remarkable improvement with ivig. Continue to advocate for your daughter! Let us know if we can help. Dr. Shawn

    • Anonymous
      March 12, 2007 at 11:18 pm

      My 14 yr. old daughter has been battling the same type of GBS that your child is dealing with. I’m very surprised that your child did not have an IVIG yet ecspecially with all of the hardship she is dealing with. My daughter had one treatment of IVIG and was hospitalized for 5 days. She still had the ability to walk but with help and she did not have to be put on a ventilator. I pray that things get better for your child. It is a long recovery and can be frustrating at times but I know if you have alot of support your child and your family can get through it one day at a time! Don’t be afraid to ask the doctors questions the more information you have the better. Definetly inquire about Physical Therapy it does help. My daughter was diagnosed in Aug. of 2006 and is still having Physical therapy twice a week including Aquatic Therapy in a pool. We Wish you the Best