Really looking for some answers

[Avery's Mom]

I know that this is really reaching but I also know how clever you are here

I spent 5 hours at the hospital last night while my 2 1/2 year old dd with ROBPI writhed in pain. They couldn't find anything wrong after having performed almost every test possible - bloodwork, x-ray (of her abdomen), urine (couldn't get any), poking everywhere...

I told them about BPI (Nurse asked me to spell it and asked if it was a bone issue!!!! WHAT!??!). Avery currently has a "longterm, chronic dislocation of the humeral head"...along with everything associated with that. I have never noticed her in pain before.

Anyway, my gut says shoulder and here's why...

She complained about it lots yesterday and seemed to be favouring her arm more than usual.

She said she couldn't sit up by herself from lying.

It started sporadicly but then went continuously - shaking, crying, grunting or gulping in air (like you do after you've been crying really hard or you're in tremendous pain).

She could still move her arm as pathetically as she has been able to - just didn't want to.

That's all I can think of to share. I would love any suggestions so that I can better understand what she might be feeling. The Dr didn't even bother to pull up her MRI that was done only weeks ago. They pretty much ignored my thoughts about her shoulder being in pain.

Could she be getting more feeling back in there after so long? Could there have been something else that's happen (I didn't notice a fall or anything)? Could it be that the weather's changing - though she seemed to be in a lot of pain!!! More than I've ever seen her in - she didn't even want her G'ma and I couldn't even settle her.

Thanks so much everyone!! I really look forward to any insight you have.
Bonnie

[PeggyUBPN]

Bonnie,

I answered you on the general message board.

Peggy

[Kath]

Poor baby and Mom it is so hard for the kids to communicate pain and explain how it feels.

I had a real problem with spasms in my upper arm as a child. I loose my breath when this happens and would flail my self around as a child trying to get rid of the pain in my upper arm.
Someone would have to take both hands and massage my arm by rolling my biceps area between both of their palms...
I still get this type of stabbing pain from time to time and have the same strong reaction but I behave better. A little boy describe this event as if someone was stabbing him with sharp sticks when his mom posted that I knew exactly what he was talking about.

I had pain especially during growth spurts, illness; weather related and did not know how to explain it to others when I was small.
I did a lot of crying and was upset when anyone touched my arm at times. I still do not want anyone to touch my arm it does not matter how lightly it sends a pain message to my brain. I find if someone asks permission and I am aware that they are going to touch my arm I am better about it. Dr.Belzberg explained at last year's camp that our brain is getting scrambled message. For some even a slight touch sends a message of pain instead of gentle touch... it really helped to have him explain this strange behavior. I did not understand the logical reason for the pain or why I was so annoyed by touch on that arm.

I find that weather changes can cause pain for me especially as it begins to get cold. See if she will relax in a warm tub

I use Mineral Ice because it seems to help... it could be mind over matter or the smell is a distraction I don't care which but it helps me.

I think you need to contact your specialist even via phone and let him/her know that pain seems to be a serious problem at this point.

Kath

[Ginne]

I'm going out on a limb here (pardon the unintended pun please) and I haven't read Peggys message on the General board BUT..... did the Dr's check for a dislocated shoulder????

We've been fortunate that the only pain we're aware of for our daughter Melissa, is when the weather shifts (high pressure system moving thru) or when it is really humid. Then it is like Kath says.....warm/hot baths or we go to my parents and spend 5 minutes in the hot tub (Missy's only 17 months so she cannot go longer than that) We really notice how much better she is after a hottub visit and she tends to use her LOBPI arm more.

Good luck and let us know what finally happens

Ginne