Anyone know why tics are not as responsive to IVIG?

[eljomom]

I understand that the Yale-Swedo study is excluding kids with primarily tics as there have been negative outcomes from IVIG and tics. IF, IF, IF this is all caused by the same thing (ie., tics, ocd, fine motor, sep. anx.) then why would tics not be as responsive to IVIG?

[NancyD]

We had the opposite experience. Tics (which were quite bad) were the first to go 100% and they have NEVER come back. However IVIg never helped DD's OCD. Having said that, DD also has Lyme and is doing PCR testing for Bartonella and Babesia so the OCD may be tied to a co-infection.

[Guest pandas16]

Here's the clinical trial- http://clinicaltrials.gov/ct2/show/NCT01281969?term=PANDAS&rank=1 The inclusion criteria say with out without a tic disorder. Where have you heard that tics don't respond?

[monarchcat]

I haven't looked at the study, but I will chime in with our recent experience. I've heard anecdotally that tics respond better to PEX than IVIG. My son presents mostly with tics and mood issues and we've had two IVIGs since December (1.5g/kg over two days each time). The tics persist and I've seen no improvement there, though we've had gains in other areas (mood, behavior, etc).

 

I have just switched him to Kirkman Labs Spectrum Complete multi-vitamin in hopes that the higher magnesium, etc. will help with the tics.

 

I am curious about this: "I understand that the Yale-Swedo study is excluding kids with primarily tics as there have been negative outcomes from IVIG and tics." Do you mean "negative outcomes" as in IVIG can make tics worse? Or just that tics don't respond to IVIG....?

[Guest pandas16]

NancyD, I was just wondering what dosage of IVIG that your daughter had if you don't mind sharing??

[eljomom]

Well, I spoke with Dr. Leckman, who said that he didn't think kids with mainly tics were being included, but that I should call and speak with the screeners. He mentioned that there had been negative (I distinctly remember the word negative) responses.....meaning NO response or help with tics. I also read this on something somewhere by Swedo...would have to dig to find it. Dr. L says to not look at dd's tics when looking at if she's improving...that tics are the hardest to get rid of...well, they are a big issue for us, so i DO look at them as a sign of improvement/decline. Anyhow, just anecdotally on the forum I have heard this too....

[NancyD]

Her first HD infusion in Aug 2008 was 1.5g/kg.

 

NancyD, I was just wondering what dosage of IVIG that your daughter had if you don't mind sharing??

[TexasDad]

DS15 has "compulsive tics" and by talking with him it is very evident they are a compulsive response to thoughts in his head. He can stifle them for a time, but like other compulsions they have to come out at some point. They are definitely the first to show up and the last to go away, but they do go away. Again, early IVIg is the key IMO as long as the active infection is also aggressively treated. In our case, that was only 13 days of Pen VK, but it did the trick.

[TexasDad]

This brings up a question. Are all tics the same? Are OCD-related tics any different than non-OCD tics or classic Tourettes?

[eljomom]

TexasDad....google "Tourettic OCD" and "Dr. Charles Mansueto"----very interesting....

[TexasDad]

TexasDad....google "Tourettic OCD" and "Dr. Charles Mansueto"----very interesting....

 

Yeah, that was pretty interesting. Looks like the distinctions among the subgroups aren't exactly clear cut. Thanks for that. : )

[eljomom]

I think it also explains a little bit why Pandas kids get ocd, tics, or both...is there really much of a separation between the two?

 

TexasDad....google "Tourettic OCD" and "Dr. Charles Mansueto"----very interesting....

 

Yeah, that was pretty interesting. Looks like the distinctions among the subgroups aren't exactly clear cut. Thanks for that. : )

[GraceUnderPressure]

My ds18's neurologist says that OCD & ADD are just brain tics - thought that was an interesting perspective...

[smartyjones]

This brings up a question. Are all tics the same? Are OCD-related tics any different than non-OCD tics or classic Tourettes?

 

 

texas dad -- did you see a video posted by - i think - EAmom? it was very good. it was a young woman discussing her tics and her thoughts on tics. i don't know if there's anything such as studies or thinking in the medical world to back up her theory about differnet types of tics -- but i found it very interesting b/c it described my son.

 

for a while -- i said my son did not have any tics -- i saw eye-blinking one time for about 3 seconds at on-set. however, he has sometimes made mouth noises that may be tics. he's also done a mouth wiping on the sleeve thing. for him, i believe his OCD is more of the "just right" variety -- there's not really a complicated web of thoughts to avert with compulsions. he's basically doing the compulsions b/c that makes things "right" -- w/o much more to it. this woman terms it "autistic tics" -- i guess it would be a type of stimming -- i don't know too much about that term -- but done to comfort or regulate. it's not really an involuntary movement -- although the whole thing is not consciously thought out.

 

if your interested, i can find that link for you b/c i found it very interesting.

[chodnett]

My daughter has tics and has responded to long term antibiotic and HDIVIG treatments. Although better no more vocal only movement I think it is because of LYME infection. We are going to see LLMD in JUNE for her. I have already begun treatment. I think she is congenital LYME then PANDAS came on. All treatment has been good for recovery but must address LYME.