Your Replies

  • Dee
    September 29, 2014 at 12:53 pm

    Hello Jyn – I am sorry to hear Mwaniki’s GBS had progressed to his lungs but am so glad to hear that he is on the road to recovery. I don’t really have any suggestions regarding improving his immunity aside from my son takes a chewable probiotic everyday and I believe that has helped fend off small bugs at least (probiotics help support beneficial gut bacteria). Keep hanging in there thru all the therapy. I look forward to hearing that he is playing his beloved sports again (because he will!)
    Best wishes to you both,

    July 29, 2014 at 5:23 pm

    Hi Amber – I am sorry I hadn’t seen your message until now. I hope that things have improved for Ethan. In regards to Annette’s message above, my son had an occupational therapist who also happened to be a craniosacral practitioner (she did not use craniosacral with him specifically but I think her knowledge of it influenced the therapy she did do with him which was very productive).
    I understand how frustrating all of this can be but hang in there. When my son was recovering I couldn’t envision the super energetic 5-year-old dancing around the house that he is now. And remember that you know your child better than anyone so if you have a gut feeling about something go with it, you are probably right!
    Please let us know how Ethan is doing –
    Best wishes,

    May 16, 2012 at 5:42 pm

    Hi – in regards to my ds not being able to communicate his pain, that was one of the very frustrating things we had to deal with. And when we asked the docs we would get mixed responses as to how much discomfort he was going thru. If you look at my post on this board from that time (titled ’19 mo w/gbs’) you’ll see I got a number of responses from those with older children who were able to put some words to what it was they were feeling.
    We would give him acetominophin (spelling? basically children’s Tylenol) when he seemed very uncomfortable, usually to help him sleep or after PT. Your doc should be able to advise if this is ok for your dd. Also, we tried not to overdo it & not push him too hard, too fast – rest was really important. You will notice little changes that indicate she is getting her strength back (& those little things mean a lot!) – Dee

    May 15, 2012 at 7:28 pm

    Hi Gracie’s Mom – I’m so sorry to hear about your daughter’s diagnosis, but take heart, things will get better. My son had GBS in 2010 at 19-months-old, and he is now a very active 3-year-old who loves to dance. It took a lot of hard work, and most of all patience, but he returned to his little monkey self & so will she. They have youth on their side & they can be remarkably determined. Was she treated with IVIG? It is great that you were able to start her OT & PT already (we had a lot of red tape to go thru before my guy was able to start his). Any questions please post, it’s good that you are reaching out for support as well – hang in there!!!! All the best, Dee & ds

    September 23, 2010 at 8:39 pm

    Hi Jenn – I’m sorry to hear you’re experiencing night wakings again (as well as everything else you’ve gone thru). That is the worst & hopefully it was an isolated incident (GBS does suck!).
    As far as falling – in hindsight we realized that my son taking an uncharacteristic spill at the playground (he fell flat on his face, unusual for him as he’s usually very cautious) & then similarly in our kitchen the next day (where there was nothing for him to trip on) were early signs of GBS. But because he hadn’t been sleeping, we just thought he was starting to stumble due to being so exhausted.
    It’s good that your daughter is able to communicate to you how she’s feeling. Good luck & hang in there –
    D., mom to 19 m.o. ds dx w/gbs 8/30/10

    September 14, 2010 at 8:08 pm

    Thank you all very much for your replies to my post about my son.
    He is doing well & while he still can’t walk he has made some progress sitting up on his own & reaching for things.
    I see that I will have a lot of homework to do regarding his future immunizations.
    Our next hurdle is getting his physical therapy started. The program that will provide for it is supposed to be very good, but it’s taking forever to get going. In the meantime we are watching him like hawks for any sign of recurrence.
    Thank you again,