Searching for answers – 10yr old son

    • October 7, 2015 at 2:52 am

      Hello… We are trying to find answers for our son – or at least be pointed in the right direction. We do not have a diagnosis of any sort. We saw a neurologist at Seattle Children’s yesterday and I have to be honest and say that we were frustrated when we left. Everything “looks good” but we are scheduled for a non-contrast MRI in a week (pacify mom!)… Um. No. Everything isn’t good. (I know you’ve been here!! 😉 The doctor ruled out GBS because my son has reflexes…

      Early September E told me that his legs were feeling really weird at night. After talking for a bit I suggested Restless Leg (my husband has it as well) and made note to talk with his pediatrician and follow it. A couple weeks later he came in from playing and showed me that his right leg was tremoring. Lasted for about 30 minutes. From the moment it stopped (and still, now) he was left with a tingling sensation throughout his entire leg. Pins & needles. It happened again the next day so we went in. Things looked good but labs revealed very low iron so he started a supplement. Weakness presented after a few days but not enough to stop him from anything. A week later, sitting in class, his left leg started to shake. When it stopped – that leg was also tingling. That afternoon his right arm shook and now continues to tingle. (Apparently he told at me at some point prior to this -I vaguely remember- that his left arm tingled too – but has never shook). The shaking comes and goes now for just a short period but the tingling remains. He has also had two (small/quick) incidents of urinary incontinence that scared him. Our pediatrician expedited our referral to Children’s. Weakness has been growing – he told me the other night that he feels he just has to work harder to move his legs and arm. Saturday at his soccer game we could just see him struggling. Before halftime he pulled himself from the game and laid down crying because he had such deep pain in his legs. This is my shy kid who wants no attn yet also prides himself for being the fastest kid with the longest endurance… He doesn’t pull himself from soccer games. He’s just walking around at recess now because he can’t run – when normally he is the one recruiting everyone for tag…

      So, again, everything isn’t “good” =( Have you experienced anything similar? Any advice? From the reading I have done – it sounds like a non-contrast MRI isn’t going to show anything. If we want to see anything at all, we need the dye, right?? When asked what the next step is if the MRI comes back normal, the neurologist said that “we will just wait for more clues & puzzle pieces to present themselves.”

      He received his Tdap & Meningococcal vaccines 7/29… I’ve read that can play in some cases for GBS but I know that has a faster onset… Have naturopaths or acupuncturists proven helpful?

      What would your next step be? I’m reaching out to you for advice and would like to email our pediatrician with our concerns and hope that he can suggest a contrast MRI at minimum? Or is that inconclusive and we should do nerve testing? Realizing, of course, that we do not have a diagnosis – but this is clearly a nerve issue…

      Sorry for my rambles! Sheesh! Time for bed & rest =)
      Thank you so very much! I hope your kiddos are feeling well…

      (symptom recap: Tingling in legs & arms – Tremors (legs & arms) – Weakness – Deep aching pain when running – Occasional urinary incontinence – Low energy)

    • GH
      October 7, 2015 at 10:38 am

      Unfortunately, diagnosing neuropathy is sometimes very difficult. The neurologist is correct in saying that he may have to wait for more clues to present. It is best to try to be patient and keep an open mind about the cause. Give the neurologist time to do the diagnosis. I would not presume to advise a doctor what type of MRI or any other test is needed. That is their domain.

      Naturopathy is quackery. This will not help your son. Acupuncture is placebo. You must allow neurologists to do their work without these distractions. It may be that consultation with other neurologists will be needed if progress is not being made.

      • October 8, 2015 at 8:46 am

        Good morning! Have they done a spinal tap? Usually that will show heightened protein which will confirm GBS. I’m so sorry you are going through this, it is a nightmare! My 11 year old son was diagnosed in January. If your doctors don’t move fast please go get a second opinion, time matters with GBS. Do not let them shoo you or pacify you with fast talk.

    • October 7, 2015 at 11:56 am

      I’m sorry… I didn’t realize I came off so pushy and obnoxious. I am very patient when I feel like they are truly trying to figure something out but both my son & I didn’t feel like the neurologist has any care whatsoever. I asked when we would learn the results of the MRI and he told me I would have to call in to get them and then follow up with our pediatrician on our own…We’ve never experienced that before. Also that our ped will probably receive the MRI results before he receives the neurologist’s report from that appt. We have a wonderful relationship with our pediatrician and I had no intention of being a distraction or dictating the medical process. I want to advocate for my son and the appt with the neurologist left us flat. On 3 occasions I have personally had to go back in for follow-up MRIs with contrast after non-contrasting MRIs didn’t show anything… I hope to minimize MRIs and save money if possible.

      As for Naturopaths and Acupuncture, you are certainly entitled to your opinion. This is my first post to this forum and you are my first reply… your reply totally caught me off-guard and felt like a slap first thing this morning. I’m hopeful that wasn’t your intent. Naturopathic medicine has provided answers for my family that years of testing never did. Acupuncture was the only thing that gave me full function and feeling back in my right arm after 3 years of sitting on the sidelines and hours in PT, MRIs and specialists appointments. In no way am I trying to change your mind, I just ask that you be considerate of others in your replies & support. We all have different experiences that lead us to where we are… but we come to these forums for positive experiences. I mean no disrespect…

    • October 7, 2015 at 11:13 pm

      Nicole, I’m so sorry to hear your son may be afflicted with some form of peripheral neuropathy (PN). You posted under the CIDP forum which tells me you suspect CIDP or a related condition.

      There are specific tests that help confirm the presence of CIDP and some other PN’s. I suggest you read the following to help you better understand this disease and to continue to advocate help for your son:

      Here is a guide with tips for caring for a child with PN:

      An MRI will do little if CIDP is involved. Please look into a spinal fluid test and nerve conduction/velocity test (NCS or NVS). There are other tests too (suggested in the links above) that may be used to help confirm/deny the presence of a PN condition such as CIDP.

      I wish you and your family, especially your son, the very best and quickest recovery possible.

    • October 7, 2015 at 11:24 pm

      Oh, and there are very good specialists in your area, but maybe not at the Children’s Hospital. Please contact one of the two GBS/CIDP chapters there for referrals:

    • GH
      October 8, 2015 at 1:24 am

      If you are not satisfied with your neurologist, of course you always have the option of changing to a neurologist with whom you have a better relationship. One always hopes to have a good working relationship with one’s doctors. That does not mean that you should expect that diagnosis will always be as quick and accurate as you want, or treatment as effective as you want. You should certainly advocate for your son to try to get the best medical treatment that you can for him. That means, first, understanding what the neurologist is doing and why, and why not other things.

    • October 19, 2015 at 11:03 pm

      Hi there. My daughter was diagnosed with CIDP at 4 years old. I totally understand your concerns & frustrations. Waiting for dr appts when something strange is happening to your child is maddening.

      The tests I would recommend are: MRI with and without contrast of the brain, spine & neck, EMG of BOTH arms & legs, spinal tap to check protein levels, and a CBC.

      Does your son complain of fatigue or is it weakness & neuropathy?