Advice?

[Suzan]

Any advice for me?

 

After hanging in there, not great but not horrible for a while now, dd8 is getting worse, increased OCD (germs), increased fears (weather, burglers, ghosts, bedtime), more leg pain, stomachaches, headaches, increased separation anxiety and increased emotional liability. She is getting her 3rd IVIG this Friday. Finally this is a higher dose (1g) but still not the pandas dose.

 

She's on 250 mg of zithromax daily, 400 mg ibuprofen 2x a day, probiotics, l-theanine, melatonin, xyrtec, benadryl (she seems to be fine with both the allergy meds but I'm thinking of taking her off to see if I see any improvement).

 

Is there anything I should be asking the neurologist for? Increased abx? Change in abx? (he's not too pro-antibiotic). He won't increase the IVIG dose. Maybe just hang in there for the IVIG and keep fingers crossed? I don't know of any strep exposure but her sister does not seem to be doing all that great either.

 

Her birthday is coming up. She'll be 9. She's decided to have a party with 1 friend. Build-a-Bear and ice cream. She could not handle the swim party we were planning with 10 girls. Sounds perfect to me.

 

Susan

[matis_mom]

Any advice for me?

 

After hanging in there, not great but not horrible for a while now, dd8 is getting worse, increased OCD (germs), increased fears (weather, burglers, ghosts, bedtime), more leg pain, stomachaches, headaches, increased separation anxiety and increased emotional liability. She is getting her 3rd IVIG this Friday. Finally this is a higher dose (1g) but still not the pandas dose.

 

She's on 250 mg of zithromax daily, 400 mg ibuprofen 2x a day, probiotics, l-theanine, melatonin, xyrtec, benadryl (she seems to be fine with both the allergy meds but I'm thinking of taking her off to see if I see any improvement).

 

Is there anything I should be asking the neurologist for? Increased abx? Change in abx? (he's not too pro-antibiotic). He won't increase the IVIG dose. Maybe just hang in there for the IVIG and keep fingers crossed? I don't know of any strep exposure but her sister does not seem to be doing all that great either.

 

Her birthday is coming up. She'll be 9. She's decided to have a party with 1 friend. Build-a-Bear and ice cream. She could not handle the swim party we were planning with 10 girls. Sounds perfect to me.

 

Susan

Susan,

 

Get everyone checked, including yourself and your husband, even if no one has any symptoms. ALL of my son's ramp-ups have been due to someone in the house having strep. As a matter of fact, I'm taking everyone in tomorrow because yesterday and today he's been markedly worse. I tried the rapid tests but did not find a culprit

I sure hope it's not me again after a week on Augmentin, plus two more on Biaxin!

 

Increasing abx would be helpful too, but for now, just make sure you are strep-free. You might want to get your PANDAs daughter checked out too, in case she has an ear infection or something going that you are unaware of. My kids don't ever show any of the typical symptoms, and PANDAS ds got an ear infection while on Saving Sammy dose!

 

Hope things settle quickly!

 

Isabel

[EAMom]

Is this neurologist even willing to consult with Dr. K. (who uses 1.5gm/kg) on IVIG doses? It just seems remarkable to me that these docs "make up" doses like this. Even Swedo's IVIG study used 2gm/kg (1gm/kg each day over 2 days).

 

Did he explain why he won't he increase the IVIG dose? I don't know of any studies that show IVIG is effective for PANDAS kids at just 1gm/kg.

[KeithandElizabeth]

I would strongly argue for the 1.5 dose, even if you have to ask your doctor to please call Dr. K. We have done both the 1.5 dose and the lower dose IVIG and the 1.5 dose made a huge difference in our son's PANDAS symptoms. Again, this is the autoimmune dosage. And I would encourage you to just be safe and include going the IGENEX lyme test as well as blood work for mycoplasma.

 

I feel for you right now wish you so much luck with Friday's IVIG.

 

Elizabeth

[tpotter]

In addition to increasing the IVIG amount, Dr. K. also told us to increase meds to full dose when the child gets sick. That meant 500 mg of azith, and we ended up having to maintain him on that (when he stopped responding to azith, we changed to Augmentin, and now we are using ceftin.) But, I think a big key is knock it out with higher doses of abx (since he's a neurologist, maybe he'd respond better to another neurologist instead of a pediatrician, like consulting with Dr. L?)

 

Good luck. But, certainly try to knock it out fast.

[Suzan]

Thanks everyone! I will try to discuss the 1.5 with our neuro again. He's not against 1.5 but he wants to woark his way up becuase he's had bad experiences with starting right out with 1.5 and he says he's had positive experiences with pandas patients at lower doses (but I've never actually talked to any of the parents before).

 

I like the idea of increasing the abx. I also like the idea of testing for strep but every time I do that, no one ever tests positive (throat culutre anyway) so I'm hesitant to drag us all in, although I know I probably should. I have a physical on Thursday so I will have him swab me then for sure.

 

Susan

[thereishope]

How have their allergies been? Ours are coming back early this year. I may have to start my one non-PANDAS son on allerg meds in the upcoming days. Last year, I didn't have to start them unil late Sept.

 

 

Any advice for me?

 

After hanging in there, not great but not horrible for a while now, dd8 is getting worse, increased OCD (germs), increased fears (weather, burglers, ghosts, bedtime), more leg pain, stomachaches, headaches, increased separation anxiety and increased emotional liability. She is getting her 3rd IVIG this Friday. Finally this is a higher dose (1g) but still not the pandas dose.

 

She's on 250 mg of zithromax daily, 400 mg ibuprofen 2x a day, probiotics, l-theanine, melatonin, xyrtec, benadryl (she seems to be fine with both the allergy meds but I'm thinking of taking her off to see if I see any improvement).

 

Is there anything I should be asking the neurologist for? Increased abx? Change in abx? (he's not too pro-antibiotic). He won't increase the IVIG dose. Maybe just hang in there for the IVIG and keep fingers crossed? I don't know of any strep exposure but her sister does not seem to be doing all that great either.

 

Her birthday is coming up. She'll be 9. She's decided to have a party with 1 friend. Build-a-Bear and ice cream. She could not handle the swim party we were planning with 10 girls. Sounds perfect to me.

 

Susan

[EAMom]

Thanks everyone! I will try to discuss the 1.5 with our neuro again. He's not against 1.5 but he wants to woark his way up becuase he's had bad experiences with starting right out with 1.5 and he says he's had positive experiences with pandas patients at lower doses (but I've never actually talked to any of the parents before).

 

I like the idea of increasing the abx. I also like the idea of testing for strep but every time I do that, no one ever tests positive (throat culutre anyway) so I'm hesitant to drag us all in, although I know I probably should. I have a physical on Thursday so I will have him swab me then for sure.

 

Susan

 

That would be a great idea...if you could ask the doc to give these parents (the ones he's treated) your name so you can actually talk to them. HAs he said how many he's treated?