- was Re: Joint Pain---constipation/GI stuff----ATTN

[Guest guest]

Dr. Harville is Sam's immuno. I personally think that he is brilliant. I'm

thinking he used to be at Duke. He's been at AR Children's for at least 3 years

now. We've loved him. He's been excellent for us.

God bless,

Wenoka

Re: Joint Pain

Hi -

It may have been me that mentioned that joint pain may be related to

immune dysregulation. I just did some snooping on the net and learned

that it may also be related to Complement deficiencies (which can lead

to autoimmune problems such as lupus). She has never been checked for

this...ugh...

Thanks so much for your thoughts. It seems that you have had to deal

with similar issues with Blake. I hope that IV fosomax does the trick.

(mom to la, low everything, dumb T-cells, chronic

constipation, and thriving).

momtoboywholoveshisgoats <momtoboywholoveshisgoats@...> wrote:

Hi!! , Mom to Blake, here

I was reading about the different posts about joint pain. Someone

mentioned that the Dr. thought it was related to the immunodificiency?

I personally have not heard this. But if it is pretty close(24-48

hrs.) after the infusion, it could be related to the speed, brand of

IVIG.

In Blake's case, he constantly has complained about not being able to

walk, his legs get heavy & a few other comments he makes. He really

has a lot of back pain. It usually is in the upper center. sometimes

he tells us it is on the sides in the upper portion. His Pulmo. &

Immuno. both agree that where he complains in the back area is form

Atelelectasis(collasp of small air ways). he is then given a 5-7 day

course of steroids & we go from there. When he has this pain, his

PFT's are usually bottomed out.

As for the joint pain, due to the steroids, Blake has been put at a

greater risk for Osteoporosis. Blake actually has " steroid induced "

Osteoporosis. He currently takes Actonel, 5 mg. daily to see if he

can get some kind of reversal. He has been on it for 3 yrs. But his

body has a hard time with this med. so we are looking in to the IV

form of Fosomax. There has been significant change in teens on this

form of Osteo med.

We found out inm 2002 that his Osteoporosis was Severe. Blaek was

9.He is now 13 & he still complains of joint pain. We were told that

when the joints start hurting, & it is close after his IVIG(15grams

every 2 weeks)it means that because he is sooooo depleated of IgG the

first palce it travels to is the joingts(we have been told this

several times) especially if it is ran at a rate tath is extremely

TOO fast for his body to process the IgG. Blaek has a set rate of

60cc. hrly. we can tell if they have " bumped " it higher, not just by

the pump, but by his complaints of not being able to walk or his legs

are just too heavy!!

I hope this helps some.

(mom to Blake, 13!!! CVID with Complete T-Cell

Dysfunction...15grams IVIG every 2 weeks, Severe Asthma,GERD,

Asperger's Syndrome(Autism),ADHD.............So many other things

going on.............Loves to read(obcession) & hates

Math..........in full BLOWN puberty mode right now......Watch out

world!!!! He even dislikes himself at the moment!!!!)

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

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