Its always something with this kid!

[peglem]

About a week ago Allie had that one or 2 nights where she seemed afraid of blankets- that passed, but then she started with this thing where she gets "claw hands" or her fingers are very straight with a contorted thumb...but kind of frozen, like she can't move them or it hurts to move them. Its been getting progressively worse all week. Ibuprofen helps a little. She also has the facial butterfly rash back, and this time its sand papery. She's just not feeling good. Her behavior is wonderful- very very few and minor incidences of SIB or aggression.

So, we went to see her pediatrician about it today. He sent his student in 1st, and I know she's thinking lupus (me too, but trying not to think lupus). Ped came in and decides we'll start with treating for an infection under her skin (possibly staff?). So he prescribed keflex and prednisone. Says we'll be able to tell if that's helping by Monday, so I'll call to let him know then.

But, he's ordered labs to check for lupus...we'll get them done next time Allie has IVIG in a couple of weeks.

I shouldn't be scared- I know God has it all worked out, but part of me is very scared.

Prayers?

[amyjoy]

Prayers to you, yes!!

i don't have any brilliant insights or words of wisdom to offer, but prayers, i'm so happy to send to you and your family.

[trggirl]

I'll be praying.

[SSS]

Prayers and PV's from me too----let us know how she is doing-----

[peglem]

I really appreciate the prayers! The last thing her doc said, as we were walking out the door is, "I'm gonna have to pray for this girl."

 

She had a lot of trouble sleeping last night. Turned off every light in the house, including the porch light. Was moaning in her sleep. She got up @ 2:30AM and insisted I make pancakes. I gave tylenol and she went back to sleep @ 6, then slept til 9. Felt very warm when she got up. Gave more tylenol and had to make some more stupid pancakes. Her hands are still swollen and sore, the facial rash is still there. But she seems a bit happier. It sucks when she can't use her hands because she really needs them to communicate.

[Mary M]

Peg-

My prayers are with you...

Mary

from Michigan

[philamom]

And more prayers!

[mkur]

I hope Allie is having a good day. Thanks for all your posts. I wish I had some words of wisdom. Hang in there.

[peglem]

So, after 5 days of prednisone and keflex (have 5 more days on that), there is not much improvement. We are still checking for lupus...but if it is the drug induced kind (which would be sweet because then you just remove the causative drug to reverse) then, I think her zith is the only thing that could be causing it. This is just so weird. Contacted her psychiatrist yesterday, who said she did not think this could be caused by going off lamictal. So her ped asked that we go ahead and get the labs drawn, which we did yesterday. Wanted to wait till her next IVIG and save the trauma of the venous blood draw, but we got her through it, only because we have a wonderful phlebotomist who is kind, patient and understanding (her son has issues). My hope is that we are dealing with separate issues of photo-sensitivity and something else, but not lupus. In looking through notes and posts I have made in the past- I see that we were dealing with similar symptoms in the past-just not as pronounced and obvious as they are now.

Thanks so much for your prayers and please continue them...pray for her doctor as well!

[peglem]

Well, its too soon to say recovery, but....Allie slept through the night w/ no bed wetting, and she did not awaken with claw hands this morning. Still some stiffness in her hands, but she was using them and seemed to be feeling better than she has in several days.

Could it be this simple? I got our kirkman's order yesterday. We had been out of Yeast-Aid and boulardii for a while. I gave her some of both last night. Hmmm.

[Ozimum]

Hoping you've hit on the answer. I'm rapidly coming to the conclusion that the gut is key. For us it was the overgrowth of opportunist bugs in the absence of E-coli in the gut. It seems that E-coli has a role in the body's ability to produce the precursors to amino acids and neurotransmitters. Makes as much sense to me as anything else...

[peglem]

Well, not so fast...still having problems, though it does seem to me like its not as bad. Her teacher called today and I asked how her hand thingy was doing....the teacher said not better, but "it looks like she's "stimming" on her hands."

Ugh! This is why I don't want PANDAS on the autism spectrum...see how people can't get past the label to see what is happening to the person? And this is just teachers- its even worse when doctors, who have the power to help, won't help because they just see a generic autistic thing, and not a child w/ a medical problem.

[Ozimum]

" And this is just teachers- its even worse when doctors, who have the power to help, won't help because they just see a generic autistic thing, and not a child w/ a medical problem."

 

Amen to that!

[peglem]

" And this is just teachers- its even worse when doctors, who have the power to help, won't help because they just see a generic autistic thing, and not a child w/ a medical problem."

 

Amen to that!

Y'know, I've been confronted with this attitude all Allie's life...used to it, really. But somehow, even though I was the one who wrote it, seeing it typed out loud like that, brings a lump to my throat and makes me want to cry. Maybe I'm just nervous about the up coming IEP w/ this teacher who is looking at Allie through an autism filter. Or maybe its because my child is having this very real, worrisome medical problem that will very probably need to be addressed by a specialist and her pediatrician is worried about finding somebody who will help.

Okay....off to find my happy place!

[Ozimum]

Big cyber hugs coming your way!