Hi everyone.

I am normally on the MS forum, as I have had that disease for at least 18 yrs now. I am in ok condition though, relatively speaking.

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 my neurologist about her. 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 . . . scared mama, Cherie

another thing, is she constantly very fatigued and cannot get enough refreshing sleep?
I think I've seen mentioned a flu type ache and tiredness.

tender point locations-
http://www.fmnetnews.com/basics-criteria.php
http://www.fmpartnership.org/tender_points.htm

I like this site -
http://www.sover.net/~devstar/
and this one - it seems to be a bit different than i recall -
http://www.drlowe.com/geninfo/hypothes.htm
this is the page i was looking for-
http://www.drlowe.com/triggerpoint.htm

Thank Jo, I will dig into those links.

Yes, fatigue is a big problem right now. She is NOT a kid that needs a lot of sleep (unlike my other daughter who LOVES her bed). This one has always been able to burn the candle from both ends, and didn't even like to nap as a baby.

It is 11:00 am here now, on a school day, and I can't get her out of bed. She's been up twice, mumbled something, and crawled back in. She normally goes to bed early enough (about 9:30), but she hasn't been able to fall asleep because of the nausea and vertigo. (She also says she sees a white strip go past her line of vision regularly, when the lights are out). Her doc suggested I try gravol, and I did last night. She couldn't even stand up this morning the first time I tried to wake her for school.

She is worst in the mornings, for sure, but she says she is very tired at school too.

I'll have a read of your links . . .

Cherie

Are her sx are mostly upper body?
Other things that pop into my head...for the head & upper body sx
TMJ?
RSI/TOS? - computer, text msgs or IM a lot?? posture? froward head or hunched or rolled forward shoulders?

I think some of those links explain the difference between tender points and trigger points... something to look into also.

this is a good chart for upper body trigger points-
http://www.mypressureproducts.com/pa...ence_chart.htm

or more full body now?

A MRI /xrays might be a good thing just to rule out c spine or other things like that.

Yes, her legs seem to be fine and everything pretty much stops at the hips (numbness, burning, etc.). That's why MS doesn't seem to fit as well . . . The numbness is constant in most places, as is the skin sensitivity. Sometimes it goes to additional places, but it has been constant in most.

She hadn't really mentioned pain so much; mostly just the numbness and burning skin, except in her neck. Last night she mentioned about a weird sensation at the corner of her eye (I really can't remember if it was tingling or what though at the moment... I'll have to ask when she wakes up). If that's what it was (tingling) I get that too from TN.

She only mentioned the pain in the two spots collarbone last night, then when I had her touch the other spots (where fb is supposed to be found), she said that almost all hurt her. I don't know though, as I don't really know if she is just feeling achy all over, or if those spots are worse. I never really considered fb before, and have no experience with it, so we just did a quick check before she went to bed. She hasn't been up since.

I have a call into her doc at the moment, and I'll see if he feels I should take her back into the hospital, or ?

The funny part is that she seems to be ok sometimes. If I ask if she is still numb or her skin is hurting, it always is. But, she doesn't seem so sick, lathargic, spaced out, etc. at some times during the day. In fact, if I didn't ask, I'd never know . . . then WHAM she's down again. That is not the way things go with me and the MS either ...

There is no one place (except upper body as a whole) that seems to be bugging her, so I don't think it is TOS or TMJ or anything like that. It's like a "body sickness" that comes and goes.

I gave her complete privacy with the pediatrician neurologist, and she is not doing any drugs/drinking, sexual activity or anything like that. They tested everything ...

Oh, and one other thing. She feels very sick EVERY time she eats. Her tummy is sore a lot of the time too, but I know she gets an upset tummy when she is upset too. That could just be from feeling so sad about being so sick ...

Cherie

I know a child who had "fibromyalgia" and "chronic fatigue." It took a while to sort out everything causing those symptoms. T4 & T3 thyroid hormones were raised. She got on a gluten & dairy-free diet, and they also found functional nutritional deficiencies and she went on Metanx and other supplements. Also took things to help mitochondria... and narcolepsy/sleep disorder medications. She is much better now some years later. A medical doctor specializing in Anti-aging medicine helped even though she was so young.

Jaspar

any vaccines? Gardasil for example? Menactra?

Thank you Jasper.

Yeah, I suppose it may take plenty of investigation to get to the bottom of it . . . and you are right that it could be thyroid or dietary too. I thought of B-12, although they have sent her for various blood tests so hopefully they've tested those levels too.

I have an appointment with her doc for this aft, and he's going to try to deal with the vertigo first. That seems to be the one thing that seems to be causing her the most grief. I mentioned fb, and on the basis of vertigo, he didn't think that was likely. He hasn't done the pressure points though yet, so we'll see . . .

She hasn't had any rashes or anything, so Lyme is unlikely. It is very uncommon here too.

Thanks MrsD. No, she hasn't had any vaccines in over 18 months, and I wouldn't agree to the Gardisal one. She had the Hep series before that, but none of the newer vaccines. Good thinking though!

Pressure points are no longer diagnostic. The new information on fibro does not include them any longer.

Hep B has had reports of neuro damage. When it first came out it was linked to MS.

I haven't kept up with it, but you might Google it and see what is new about it. The party line with vaccines is always positive, but some people do develop autoimmune issues when given any vaccine. The autistic community is suspecting vaccines damage mitochrondria in some people with genetic weaknesses for it. Two years seems like a long time unless she had a flu shot this season as well. That too can cause reactions.

It is always possible this is a virus of some sort, and will pass. But if it spreads I would be aggressive about it.
Neuropathies that have an autoimmune component can be treated early and avoid long term damage.

I'd get a Mono spot also. Kids present oddly with that. It is a simple blood test. My son had mono for weeks before it seriously became acute. He had a lot of heart palpitations with it (which I did not when I had my turn decades ago).
I thought that was odd for him.

Thanks again, Mrs D.

They are pretty sure it's not a virus because she is not having any fever. I know she had a bunch of blood tests ordered, but I'm not sure what they were as yet.

(My other daughter was just tested for mono, and she has the signs. She didn't have it ...)

Pressure points are no longer diagnostic ....?? That's interesting. Do you know any more about that, i.e. why?

I took her to the doc this aft, and he put her on SERC, which is a drug that is available for vertigo in Canada (but not the US). He definitely sees it as vertigo (not dizziness). She also has nystagmus in her eyes (or eye, not sure).

He basically said the same thing again; other than treating the symptoms, nothing much can be done until the MRI is completed. He doesn't think anything will show up there either (neither do I, to be honest). He said he just knows "these things take time". Yep, I know.

He isn't think fb at this time.

I looked it up, and she had the last Hep B shot in Mar/08. I know she didn't feel well after that one, and had a big lump for several weeks, but that is still about 12 months ago (18 mo since her first Heb B). I guess it could be that, and the docs did ask . . . but blew past that thought when I told them how long it's been. I'll do some research on that though ...

Cherie