2 Year Old-recovering – Recovery symptoms?

    • Anonymous
      May 31, 2010 at 9:49 pm

      Our 2 year old son began to show problems walking and standing, I must admit my wife was the first to put the pieces together. We went to our pediatrician who thought it was a tethered spinal chord, he prescribed an MRI for Monday (it was Friday). That morning our son woke up screaming inconsolably, we called the pediatrician who recommended we take him into Kosair’s that morning (Sat) and see if they could get an MRI team in. We got there at 7 and met an exceptional ER doctor (Dr. Coombs) who would be with us every step of the way, even performing the spinal tap that was to come later. Once the MRI showed nothing they contacted Dr Puri, the head of Neurology at Kosair’s, working together they recommended the spinal tap which confirmed GBS. He was admitted that night and treatments began the next day.

      There has been definite progress but we were wondering what other parent’s experienced during that period of recovery since there is very little information available on the web. He has had some tingling in the mouth and hands, the nurse says this is normal and the mouth issue not really definitely related. There is weakness in the muscles that we have worked with physical therapy and here at home to build up. And even though we give him ibuprofen at night there are still restless nights. He sometimes complains of pain in his lower back and feet, even though he continues to walk OK, but not normal yet. Dr. Puri says we could be looking at 2-3 for a recovery period.

      My wife is concerned he could be relapsing or that this could be the chronic form of this disease.

      Have any of you experienced these symptoms, or any others that perhaps we should keep an eye out for? What about relapses, where there any, and if so, did they mirror the initial symptoms?

      What about the nerve regeneration? Has anyone experienced where that occurs and what the pain level is like? Could this be the pain in his feet and back?

      I have been reading many of the posts on this site, which is a wonderful resource for those of us going through this.

      Thank you!

    • June 1, 2010 at 9:19 am

      Your wife could be right. Our first dx @9y/o was gbs, six months later followed with cidp, the chronic form. Will elaborate later, just wanted to post something

    • Anonymous
      June 3, 2010 at 2:03 am

      Matt –
      First of all – welcome! It is so awful that we all learn of GBS because we, or someone we love, has come down with it. My GBS was diagnosed Christmas, 2009. I am still on heavy pain meds (neurontin, baclofin, oxycontin) and can not imagine life without them. Motrin or Alieve or the like would not even touch the pain. I hate to recommend narcotics for a 2 year old, but if he is in pain and motrin helps then that is great. The key with this disease is time – time – time. It takes time to recover motor skills, time to get over the pain, time to get energy back. I am now just walking with a cane, and only began driving a couple of weeks ago on a very limited basis. I no longer nap both morning and afternoon, but I sure do need that afternoon nap still. My neuro told me to expect a full year to recover, and then I still would find I needed to be kind to myself. Just love and support your little boy, and give him and yourselves time. But stay in touch with your dr team – they sound like you have some good ones.

    • June 3, 2010 at 7:12 am

      I seems like your doctors should be able to answer some of your questions.
      I hope you keep coming back here, because there will more posts for you I’m sure. I know Dawn Kevies Mom can really help steer you in the right direction.
      If you feel the need for a second medical opinion from a specialist please don’t hesitate.
      I am so sorry for your little boy and I hope the doctors can find something for the pain. Perhaps a phone call to the hospital would work for that.
      Follow your instincts as they are usually right.
      You are in my thoughts and prayers.

    • Anonymous
      June 3, 2010 at 7:34 am

      Welcome to the forum. How long has it been since your son was diagnosed with GBS and what treatment did he get–IV IgG??
      Some neurologists argue that there is not pain with GBS, but those here will tell you that there is. Often the pain is when one has “done too much”. It is really hard for a two year old to understand or be preventative in this–kids live life so enthusiastically. One thing that you might do is build in some rest or quiet times in the day (like story time or watching a video or a favorite TV show–or just cuddle time–that also works). For me, rest was by far the most important “pain modulator” and a hour of stillness or a nap made/makes a huge difference. I can now work all day, but have to take a rest period “horizontal” in the late afternoon or early evening. I used to have to rest every couple of hours and this may be the case for your two year old still.
      Another thing that might help is for you to keep a little record of “good days” and “tough days” and what he did those days. This might help you to figure out what is tough for him and help find ways that “naturally” work to help. Sometimes physical therapy is a little ambitious for GBS in which case one has to advance slowly because nerves heal slowly. GBS is so rare that it is hard for people to know how fast to advance or to often realize that going to fast will hurt. For strokes or acute injuries–there is not as much overdoing pain and the limiting factor is what the body can do–for GBS–the limiting factor may be what the body can tolerate.
      Third, believe him if he says he is having pain. You should not be afraid of helping him with ibuprofen or tylenol if he needs it–nor of asking for a prescription for tylenol with codeine for really bad times if ibuprofen or tylenol are not enough. Naprosyn might be another option for the bad times.
      Lots of people think that you will not get pain in the face or mouth with GBS, but those of us on this site will tell you that many of us have had this. Again, I would believe your child if he says that his mouth or hands are tingling.
      I do not say any of this to put down medical people (since I am one–working with children with cancer), but rather that this is a very rare disease and what is in textbooks is not very practical nor often “true to life”. Listen to your child and believe him–he knows best what he feels, he just may not at two years old know how to say it or compensate for it. You can help him by helping find contexts and patterns and by being his advocate.
      WithHope for a cure of these diseases.

    • Anonymous
      June 3, 2010 at 3:19 pm

      So sorry to hear about your son, but kids are really resilient and he will bounce back in time. Everyone with GBS becomes concerned about CIDP and only time will tell. The hallmark of CIDP (in general) is progressive weakness past 8 weeks.

      My son had a tethered cord and had surgery for this, so I know what this is! 😉

      As for the tingling in the hands and mouth, I had muscle twitches in my tongue and my tongue even went numb when I was in the first few weeks of mild GBS. There are many on here that will tell you that they had mouth issues, and hands is a definite. I am 6 months out and I still get tingles in my fingers and my hands will go numb when I am sleeping. My feet feel funny when I first get up in the morning and if I am walking around a lot on them. There will be many strange sensations that will come and go and move around. It will be hard for you since your son is only 2 and can’t communicate these things, but you can keep an eye out for pain! Pain is normal for some people with GBS as well.

      Good luck!!

    • Anonymous
      June 8, 2010 at 12:17 pm

      Thank you all for the wonderful responses. My son developed GBS about 1 month ago. He was immediately given the 4 day treatment of IV IgG. He has reponded well so far but complains about headaches, back pains, tingling in the face, feet, legs and hands. From what some of you say this is “normal”. Of course we are waiting to pass the 8 week point, my Wife is concerned that the symtoms may have been there before and it could indicate CIDP. Of course he being two it makes is dificult to pinpoint issues very well.

    • June 10, 2010 at 10:03 am

      Lots of stuff going on in my life, no time to post, no computer at my moms, call if you like, will pm you my cell. You are EXACTLY where we were, it is frustrating. We waited for 6 months and then the symptoms were undeniable. After the 8 weeks, say maybe 10-12, you could get another spinal to see if protein elevated. 2 is difficult for communication. The positive thing is the younger, the better chance to heal quickly, shorter path for nerves to heal as opposed to a 6 ft adult. Call I can elaborate.

    • Anonymous
      June 20, 2010 at 5:09 pm

      No time to call right now, but I certainly appreciate the offer. May take you up on it someday!

    • Anonymous
      July 14, 2010 at 8:59 pm

      Update on my Son’s condition. Towards the end of the eight weeks he began to go downhill again (falling down, stiffness, unable to stand unaided) Our Neurologist placed him back in the hospital for more treatments and an Nerve test. The diagnosis is now CIDP.