I am a mom with two daughters, and I have been dx with Multiple Sclerosis for many yrs now. The reason I am on this forum today though is because of my 13 yr old daughter.
I'm wondering if anyone has any experience with fb and children, and/or even to get some experience/advice on fb symptoms. I'm sorry, but this is going to be a bit of a long story ...
My daughter started to get numbness in her jaw area about 5 or 6 weeks ago. I "assumed" it was just a passing phase, and maybe related to hormones or a "painless" hormonal headache . . . something along that line. It went away after a few days.
Two weeks later, the numbness started up again, and it spread. She had it in her jaw area again, her chest, the under side of her upper arms, and on one hand. At the time she felt very nauseous, and was sore (mentioned her neck), so I took her into the ER to make sure it wasn't mennigitis or something. They checked her over, and she had no fever or signs of a virus, so they sent us home. They said if it gets worse, to come back.
As the weekend went on, her skin became hyper-sensitive to touch, she got vertigo really bad when she laid down, and she really felt awful. I happened to have a neurologist appointment myself on Monday, so I talked to her about it. She told me to get her in to the Children's Hospital in the city right away, to be seen by a pediatrian neurologist.
We spent most of the day in the hospital, with every doctor imaginable poking and prodding. In the end, the pediatrician neurologist said, “well, it would be unusual for a child of this age to have MS, but I don’t really have an answer for you”. Because most of her symptoms were “sensory”, there were no objective neurological findings, but the doctor said she believed my daughter was experiencing what she said she was. Basically that is what happened to me in the beginning too ... even though I was paralyzed when they tested me.
The neurologist said “is she under any stress?”, to which I responded “what 13 yr old girl isn’t?”. She is just a really happy kid though, with no big changes going on in her life (she went through puberty at 11 yrs, so that’s not an issue), so I didn’t think it was a psychological coping mechanism. On the other hand, I am someone who believes in having a “safe place to vent”, so I have arranged counseling for her anyway ...
To shorten the story a little . . . it’s been three weeks now, and she is not getting better. There has been increased numbness, vertigo, nausea, etc. to the point where she can hardly function any more. They are going to do a MRI, and her GP and neurologist are doing everything to figure this out . . . but even if it is MS, that just takes TIME to show up.
So, last night my daughter said “mom, it hurts here”, as she pressed on either side of her collar bone. That made me think of fb pressure points right away, and I kinda’ tried to check the other one’s (many people with fb are on the MS forums, so I was aware of this symptom for fb). It seems maybe she has other pressure points too, but I don’t really know what I am looking for.
When I looked up the fb symptoms, I see nausea, dizziness, numbness (especially in the face, arms and hands), pain, skin sensitivity, etc. are ALL quite common symptoms for juvenile fb . . . so this got me wondering if maybe this is the cause, not MS.
Can anyone give me any advice on what to look for, your experience with this disease, whether you’ve experienced the same symptoms as her, etc.?
Thank you very much,
Scared mama, Cherie