why even do blood tests...and is zith just an anti-inflam

[Chemar]

 

Also, somebody wrote about steroids being a huge problem for TS and Lyme---yet Dr. T (a pandas-specialist who is a neuro and therefore would be a TS specialist too???) told me that there is no evidence of steroids increasing tics!! I have heard it time and again, that it's a big no-no to give TS kids steroids, so that is what really scares me in this whole treatment process. I know with pandas, they are likely necessary. This does not make me feel comfortable.

 

 

 

sorry but not all neurologist's are "TS specialists"

 

Steroids are dopaminergic

Dopamine increases tics in TS

 

I don't consider our family's personal experience with steroids (prednisone) and that of others who have noted the same with it spiking tics to be "no evidence"

[Kayanne]

Thanks for all the feedback--I really appreciate it. Just really don't know what lies ahead, which is a scary place to be. If she is happy, generally, but ticcing head to toe most of the time, sometimes nonstop, then how happy can she really be? I can't imagine how she would survive in public school with her germaphobia either. How did she go from "normal-ish" to a full on Tourette's/ocd presentation in such short order? A "TS" doc will just tell you that "there's no NORMAL in TS, and it can start like that", and a pandas doc will tell you that it sounds like pandas.

 

Keira--who did your IVIG? It sounds like you saw Latimer---why won't she give you antibiotics? Does she not do follow-up?

 

Also, somebody wrote about steroids being a huge problem for TS and Lyme---yet Dr. T (a pandas-specialist who is a neuro and therefore would be a TS specialist too???) told me that there is no evidence of steroids increasing tics!! I have heard it time and again, that it's a big no-no to give TS kids steroids, so that is what really scares me in this whole treatment process. I know with pandas, they are likely necessary. This does not make me feel comfortable.

 

Well, blood draw was done...so now it's the big wait. I am predicting that absolutely nothing will show up. I kind of want that, but kind of don't---you know what I mean??

 

Thanks again for the support here!

 

Dr. L is my daughter's doc and has followed up with long-term antibiotics.

 

Also, I don't think that prednisone is necessary if you have PANDAS. You can skip it--Just give antibiotics, or move onto the bigger treatments such as IVIG or PEX. There may be a dilemma in that the a PANDAS doc may want you to try the prednisone first before trying the bigger guns...that is where you seem to need more clarification, or information regarding PANDAS vs. TS...I'm sorry that I can't be more helpful...

[peglem]

 

Also, somebody wrote about steroids being a huge problem for TS and Lyme---yet Dr. T (a pandas-specialist who is a neuro and therefore would be a TS specialist too???) told me that there is no evidence of steroids increasing tics!! I have heard it time and again, that it's a big no-no to give TS kids steroids, so that is what really scares me in this whole treatment process. I know with pandas, they are likely necessary. This does not make me feel comfortable.

 

 

 

sorry but not all neurologist's are "TS specialists"

 

Steroids are dopaminergic

Dopamine increases tics in TS

 

I don't consider our family's personal experience with steroids (prednisone) and that of others who have noted the same with it spiking tics to be "no evidence"

I have not heard that steroids are dopaminergic, and I can't locate any info on this. Do you know where I can find info? Thanks.

[Chemar]

 

I have not heard that steroids are dopaminergic, and I can't locate any info on this. Do you know where I can find info? Thanks.

 

There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links

 

 

http://www.ehow.com/facts_5798168_cortisol_-dopamine-learning.html

 

http://www.jneurosci.org/cgi/content/short/24/11/2825

[peglem]

 

I have not heard that steroids are dopaminergic, and I can't locate any info on this. Do you know where I can find info? Thanks.

 

There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links

 

 

http://www.ehow.com/facts_5798168_cortisol_-dopamine-learning.html

 

http://www.jneurosci.org/cgi/content/short/24/11/2825

Thank you! I've been searching around for prednisone and dopamine...found nothing.

[Chemar]

You are welcome

I had known that the "sex" steroids, especially androgens/tesosterone, were dopaminergic and that it is believed that is why so many more boys than girls have TS gene manifestation

but

it wasn't till my son's Crohn's dx that I learned of the corticosteroid-dopaminergic issue, as one of the GI specialists pointed out it may be risky for my son to have any anti-inflamm steroid treatment for Crohn's because of the potential to increase tics.

 

then we had the disastrous results when, against my warnings and pleadings, my husband (also TS) was given prednisone steroid burst-taper for sciatic injury. His tics exploded, after having calmed right down to just a barely noticeable eye/mouth twitch and occasional throat clearing, since his 20s. He was in his early 60s when he had the steroids. Tics spiked and have remained quite elevated since. This was in early 2008 that he had the pred. He sure wishes he had not dismissed my urging him not to have it, but he considered the doctor telling him it was "unlikely to affect his tics" to hold more weight

 

 

 

 

 

I have not heard that steroids are dopaminergic, and I can't locate any info on this. Do you know where I can find info? Thanks.

 

There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links

 

 

http://www.ehow.com/...e-learning.html

 

http://www.jneurosci...hort/24/11/2825

Thank you! I've been searching around for prednisone and dopamine...found nothing.

[Guest keira]

You are welcome

I had known that the "sex" steroids, especially androgens/tesosterone, were dopaminergic and that it is believed that is why so many more boys than girls have TS gene manifestation

but

it wasn't till my son's Crohn's dx that I learned of the corticosteroid-dopaminergic issue, as one of the GI specialists pointed out it may be risky for my son to have any anti-inflamm steroid treatment for Crohn's because of the potential to increase tics.

 

then we had the disastrous results when, against my warnings and pleadings, my husband (also TS) was given prednisone steroid burst-taper for sciatic injury. His tics exploded, after having calmed right down to just a barely noticeable eye/mouth twitch and occasional throat clearing, since his 20s. He was in his early 60s when he had the steroids. Tics spiked and have remained quite elevated since. This was in early 2008 that he had the pred. He sure wishes he had not dismissed my urging him not to have it, but he considered the doctor telling him it was "unlikely to affect his tics" to hold more weight

 

 

 

 

 

I have not heard that steroids are dopaminergic, and I can't locate any info on this. Do you know where I can find info? Thanks.

 

There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links

 

 

http://www.ehow.com/...e-learning.html

 

http://www.jneurosci...hort/24/11/2825

Thank you! I've been searching around for prednisone and dopamine...found nothing.

[peglem]

Well, my search wasn't completely fruitless, I found this tidbit on drugs.com http://www.drugs.com/prednisone.html

You should not use this medication if you are allergic to prednisone, or if you have a fungal infection anywhere in your body.

 

So, I guess those of us w/ yeasty kids need to be careful. It didn't say what could happen if you take it w/ a fungal infection. Anybody know?

[Guest keira]

You have all added such pertinent information. My son in his mid 20's saw DR. L but had his IVIG at the Army Walter Reed Medical Center. They give IVIG for many diseases, this was the first PANDAS case. The only problem is the Head Of the Neurology clinic doesn't believe in long term antibiotics. I have about 6 more weeks of Zith left and I am sure I will get follow up from DR. L. My next plan is to try to check with Travis Air Force hospital Neurology clinic to see if they can follow him and possibly give him his next 2 dosages of IVIG which we think he will need. Right now I have seen about 20% improvement in him 4 weeks post HD IVIG. The reason we went to a military facility versus Georgetown is because Georgetown wasn't going to take our insurance. I am a retired Navy Nurse and he got excellent care. We feel lucky we had this option because I know so many of you have to pay for this treatment out of pocket.