FINALLY getting first IVIG

[jyl]

My ds-18 (!) is getting first IVIG next week. It took so long for insurance to approve, etc. He has done 2 different rounds of antibiotics and steroids-dramatic improvement both times. He was actually diagnosed correctly (AMAZING) by ped neurologist at the end of kindergarten, but was never treated correctly. At the time, they treated with antibiotics until culture was negative, and the bloodwork was never checked again! I was always told there was no treatment except tenex for tics, and tried different ADD meds which always made things worse! It wasn't until I read Saving Sammy until I begged our family physician to do the bloodwork as described in the book. Sure enough.....1300 Dnase-the highest the lab goes. I was heartbroken and excited at the same time to think there could be an answer that would improve his quality of life-and ours!

I was lucky enough to find Dr. B. in our immediate area, and we did a round of antibiotics and prednisone. We noticed a difference in personality right away. He, however, did not believe us, and being really oppositional (had become a way of life) refused to take any more. More heartbreak!!! After recent knee surgery and vicoden became raging etc. and ended up in the hosp. (mental health unit). He has now thru the grace of a definite higher power and/or listening to therapists been on antibiotic and steroid. He is better than we've seen in years. IVIG is scheduled for Monday. Any advice or comments are welcome. I wouldn't have even found the wonderful doctor if it wasn't for this forum!

[browneyesmom]

Oh goodness!! Bless your son and your family for all you have endured all these years! My daughter just had her second weekly infusion of SubQ Ig on Wednesday.... after the third one next week, she is anticipated to be at a steady state, at which time, all these endless antibiotics might start working!

 

I so hope for your son that the IVIg is helpful for him... how well we know the oppositional behaviors brought on by this. I do not have any input at this time, other than to share what we are doing:

 

Ibuprofen 300 mg two - three times daily

Omega-orange daily

... in addition to regular meds of antibiotics...

 

I mainly just wanted to wish you the best... please keep us posted!

[Phasmid]

Congrats! We haven't done IVIG yet so no wisdom there. But my son will have his first in January. Happy you are seeing improvement, and hope that infusion brings him the rest of the way!

 

 

[norcalmom]

Its been nothing short of wonderful for us, although DS still has some issues.

 

What a wonderful way to celebrate the holiiays and new year!

[mkur]

Our story is very similar - son 19 - got sick Nov 1997 - 1st grade - no treatment. He has had 2 ivigs (sept, nov - Dr . Most of the ODD (not wanting treatment, not taking meds etc) went away week 6 after 1st ivig. But things got worst before they got better. He had ivig on wed and thurs. No reaction to treatment because of meds given until Sat evening approx 8pm on the plane trip home. He said he was going crazy and was very very agitated. He still has trouble with OCD (very sticky brain) but he is getting better.

 

When you get the prednisone rx filled you can save money if you use generic and just pay out of pocket for the rx and having all three refills filled at one time. At CVS 36 tablets were approx $13 if I had used my insurance I would have had to pay $30 (3 x $10 copay).

 

We have also been extremely lucky to find this forum and treatment.

Thanks everyone.