Possible GBS dx…5 yr old…Please help me

    • Anonymous
      May 23, 2012 at 4:11 am


      We took our son to the Dr today and came away with a diagnosis of possible GBS. My husbands aunt has had this, but my pediatrician was totally unaware of that when she came up with the diagnosis. I have driven myself crazy all day reading up on this syndrome and to say that I feel for anyone dealing with this is an understatement.

      Here’s my main question. Do these symptoms sound like GBS to you?

      My son is recovering from a viral illness which began roughly 10 to 12 days ago. Friday he began complaining about a headache. He complained off and on all weekend (today is Tuesday), Saturday all he wanted to do was sleep in his bed in his room. This is obviously not normal for a 5 year old child and certainly not MY 5 year old child. He has had low grade temp off and on since Friday with a very noticeable decrease in appetite for both food and drink. The desire to sleep has been continuous since Friday. During the night last night he came and wanted in bed with us which is not unusual, he slept with us for a couple of hours and when we attempted to make him return to his bed he complained that he couldn’t walk. My husband carried him to his bed assuming he was just half asleep. This morning when he woke up he said that he could not stretch his legs out and had to be carried out of his bed into the living room. When my husband attempted to pull his legs to straighten them he would cry and scream that it hurt. He remained sitting still until we were preparing to leave for the Dr.’s office and he then walked a little on his tiptoes, but would not lower his heal because he said it hurt. He also “walked” around on his knees some. When he’s not attempting to walk or stand he seems mostly fine. Still overtired, but that’s the only symptom I am still aware of. He is now in bed for the night and he was not able to put his heals down for the pain at any point today. He also has not urinated since around noon today and claims he does not feel the need. (Sorry if that’s too much info).

      Our plan and as we were advised by our pediatrician is to see how he is upon waking in the morning. If same or worse we will be returning to her office for the next step of scheduling a spinal tap.

      From what I read most parents are describing their children losing coordination and feeling with or without tingling sensations. I would not say that my child has weakened or lost coordination if he would lower the backs of his feet to walk. His pain seems confined to his calf muscles and he complains of the pain when still, upon touch, and obviously when trying to straighten his legs or bear weight on them.

      Honestly, I’m at a loss at this point. Do you believe it is possibly GBS (I realize you aren’t physicians and I do not intend to take your opinions as professional ones…) Have you heard of GBS presenting as I have described? I certainly do not want to put my son through a spinal tap unless it is absolutely 100% necessary. Any help and info you could give would be greatly appreciated.

    • May 23, 2012 at 6:00 am

      Hi there. I’m sorry you are dealing with this. My daughter was 4 when she was dx’d with GBS & then later CIDP. I know how stressful it is.

      It sounds like your son is experiencing foot drop. My daughter had it too. She was unable to put her heals down & walked on her tip toes. She was not able to walk up stairs & her running was very slow. She woke up one morning & couldn’t even lift her arms enough to feed herself yogurt.

      The pain when being touched sounds like GBS. Imagine what it feels like when your foot & leg fall asleep & you try to walk on them. That’s probably what most or all of his body is feeling like. My daughter described it as having “strawberries & nuts” in her body. She also experienced the extreme fatigue.

      I don’t mean to scare you – but your pediatrician is not equipped to deal with a case of possible GBS. Your son needs to be admitted into the hospital ASAP – like Wednesday morning. Getting a diagnosis will probably take 24-48 hours once he is admitted.

      Your son not only needs a spinal tap but he also needs an MRI with & without contrast of his brain, neck & spine. He also needs an EMG. He needs blood work checking for a multitude of things, such as lymes, chemical poisoning, etc. When my daughter was 1st admitted into the hospital they took 14 tubes of blood & checked her for every thing under the sun.

      Now…I know how scary all of that sounds. Trust me…I was in that same position. But it is the VERY BEST thing you can do for him. The earlier the treatment the better off he will be.

      Your son will probably be sedated for the spinal tap & MRI. He can’t be for the EMG.

      If he does have GBS then he should be given a 5 day loading dose of IVIG. He will be hospitalized for that treatment. If it is GBS, the hospital should also get him into physical therapy.

      I know all of this seems surreal – I know it did for me, but just remember the faster you a get a firm diagnosis, the faster a treatment can start.

      Good luck & let us know how he is doing.

    • May 23, 2012 at 11:45 pm

      Hi Gids mom,
      My son was nine, now 15. Anyway gbs/cidp sometimes does result after a virus, strep, fifths disease, campo. Right now it is more important to find out for sure if it is gbs or cidp. As Kelly said your doc might not be able to handle this. If possible could you contact him and ask to be admitted. If he is reluctant but you notice your son is worse by tomorrow, it would be prudent to go to the er. Tell them to contact your doc and that the doc suspects gbs. As Kelly said, a spinal will probably be done if the ncv/emg shows demylienation. If things are progressing quickly, you will know, if not, you have time and could ask the pediatrician to get you into a peds neuro asap for a ncv/emg, based on their findings, they would determine if a spinal is necessary. Something else to consider is mono. Sometimes children with mono have some of the begining symptoms of cidp. Simple blood test. As Kelly mentioned, they should do a whole panel of blood work for heavy metals. IMPORTANT while running the blood, they should also see if he can have ivig should he have gbs or cidp. They do this through a blood test as well, if you have it done right off the bat you will not have to wait if the results come back yes for gbs/cidp. Another consideration is charcot marie tooth. This also is a blood test, it takes six weeks to get back, so the sooner you do it the better. The ncv/emg study looks the same for gbs/cidp as it does for CMT(charcot marie tooth) That was our second diagnosis. Psychological issues was the first, gbs the third, cidp the fourth. Regarding your urination comment, is he constipated as well? What you describe is how we progressed, difficulty walking then tripping tired, urination issue, couldn’t get up once he fell. Could not hold things, not even a pencil, tingling in hands and on the last day unable to walk at all or lift arms, legs and difficulty breathing. We were admitted to the er by a peds neuro before we even saw him based on our ncv/emg that another neuro did (was ordered by our podiatrist who we saw for in grown toe nails who also happens to be a orthopeadic guy for easter seals) After the neuro we never met conferred with our podiatrist, he agreed to admit us and said he thought it was gbs and was going to do a spinal to confirm. Four hours after being admited to the er we were admitted with an elevated protein of 65 and gbs was confirmed. That is around when the war started and there was an ivig shortage, we spent several days in picu waiting for ivig not able to walk breathe etc. But once we got the ivig, by the third day of a 4 day infusion he was running down the hallway showing off doing push ups and playing xbox with some other kids wemet there. So don’t worry, they will get to the bottom of things.
      Keep coming back and we can help you with things we have learned through trial and error. Everyone is different and you will have to go through trial and error too but hopefully we can help with some things.

    • May 24, 2012 at 12:01 am

      I didn’t remember a few things. If you do get a spinal, make sure he lies on his back for 24 hours without getting up. It will help with the headaches and keep him hydrated. If you do get ancv/emg, ask for the report right away so that if you have to have another one you can give them the old report so that the same measurements are taken and the same nerves are used. Apples to apples. If they give him anything for pain if he does get headaches codeine or whatever, make sure to ask for a laxative right away so he does not get constipated. If it is gbs or cidp and they do ivig, make sure to ask for the slowest possible flo rate. They should do this anyway, it is a formula that goes by weight, but sometimes they try to push it and that is what increases likelihood of headaches after. Is he diabetic? If so make sure they use an ivig brand without sugars as a stabilizer. I brought tons of movies, our own pillows, xbox, snacks. We would go down to the cafetria in the wheel chair for lunch. (we were there 10 days the first time, so it was BORING!!!) I brought a twin airmattress and slept on the floor. If you guys do ivig, he will probably be premedicated to help with sickness. Zofran can help with the nausea, some do well with it, it gave us a worse headache. The will probably give tylenol and benydryl. Don’t let them iv push the benadryl, it burn through the veins especially for little kids, make sure it is oral benadryl. When they access for infussion, make sure they use lidocaine spray or cream where they think they will stick him, it helps to not feel the stick. Maybe if he does get a spinal, they could give him a little laughing gas and access him while he is out for the spinal. Make sure they put it in a place that is not near a bending area (inside elbow) If the arm is not straight, the alarm goes off every two seconds on the pump and more than likely the vein will blow and they will have to find another before the entire infussion is over.

      Hopefully we are jumping the gun and maybe it will just be mono, but better to know all the mistakes we made so you are better prepared than we were. We will say a prayer for you guys!