advice about steroid

[thereishope]

This is yet another thing that makes this difficult. Does your child have "only" PANDAS, does your child have Tourettes AND PANDAS? Does your child have OCD AND PANDAS? See, you're child could have 2+things. Would that mean their baseline might include some tics and some OCD? It's such a hard thing to decide when you have done all you can for the PANDAS and start tackilng any other issues that may be lurking around.

 

I was like that with my son and OCD. After his 3rd exacerbation, the OCD stayed. That made me start thinking...well.. does he have OCD too in addition to PANDAS? Did the PANDAS jumpstart something that was going surface in the future anyway and this is him now? That's when I started looking into a psychologist and educating myself more on OCD. It ends up, it was residual for him and he overcame it rather quickly.

 

If your child does respond well to antibiotics, keep up with the PANDAS search. I think that's a good indicator that a child has PANDAS. If you want to try upping the antibiotics, that may help and discuss that with your doctor. Do what you can for your child, as long as it's treatment you as a parent feel comfortable with.

 

 

 

I always have this nagging thought that maybe its not PANDAS and its Tourettes... but he does respond well to anitbiotics and it seems your son may be too. He just may need more time and a higher dose as I think you said he has had tics for the past 7 years.

 

Just some of my rambling thoughts I wanted to share... whatever thats worth

[sf_mom]

There is no official study or link yet. From what I understand, from Diana Polhman who went to see Madeleine Cunningham and discussed this issue the responses for the CaM Kinase 'arbitrarily' (lack of better word) lowered after a steroid use. What it tends to do is bring the lysoganglioside, anti tubulin, anti dopamine 1 and anti dopamine 2 into normal ranges and potentially lower the overall CaM Kinase result. They don't know why yet and further research needs to be done. BUT, its the very reason when I post my sons results CaM Kinase results I always state blood draw 11 days post 5 day steroid burst.

 

Anyway, I'd love to see a lot more research about it and unfortunately that won't happen in the near term. AND, I don't claim to vaguely understand the biochemistry either. I just know they are trying to now compile variables about when the CaM Kinase blood draws occur to better understand the responses from different treatments. Because I've only focused my attention on PANDAS and my son's illness.... I really can't say much about TS nor do I have a personal experience.

 

-Wendy

 

 

 

 

 

Chemar: Madeleine Cunningham is finding the use of steroids suppressed dopamine levels to normal ranges... preliminary findings based on CaM Kinase testing results.

 

do you have a link to support that information?

 

if so it would be contrary to all other info I have found suggesting steroids are dopaminergic (certainly the anabolic steroids are documented as such)

and would also not explain why tics appear to be spiking in some with TS when given steroids

 

you may find reading that discussion I linked interesting

 

I do not even vaguely claim to understand the biochemistry involved...and am only speaking from the experience we had with my husband, as well as the info I have been hearing from some parents whose kids show increased tics after steroid burst

 

anyway

I am not here to enter a debate about it...I just felt it important to post our personal experience and everyone can decide for themselves what they wish to do based on the information they have available.

[dee45]

Hi faith,

he is not a candidate for anything invasive IVIG/PEX. Anthony weighs 68.5 pounds. Yes he was on Topamax when we first saw her but wasn't even on a therapeutic dose so she adjusted that. She feels the Topamax is a great drug that does control the tics and said she had met with a Doctor recently at a conference and was going to start using it more. It has really no side effects at least none that we have noticed. She wants to keep him on this and the Augmentin.

 

Deanna

[lismom]

Faith, I didn't try the steroids because Chemar's remarks about making tourettes worse stuck in my head. My son had improved with the antibiotics, maybe not 100% but better than when we finally figured out why he had gotten so sick. My son did have transient tics beginning at age 6 but did go into remission after starting allergy shots. We did see an occasionaly tic when he would get his flu shot. Our blow up came after his vaccinations before 6th grade. And I believe after trying to piece things together for so long, he got strep at that time as well. He went untreated because he didn't have the typitcal strep throat symptoms. Long story short, he had an explosion of tics and ended up getting rheumatic fever. We had a relapse over summer. I now have come to my own conclusion that his strep was in his gut. My son is on a strict diet because along this journey, I notice sugary, acidy foods made tics really worse. We are on a low dose of Topamax as well, and did see this help with his eye tics. Lismom