If you have multiple children with PANDAS

[butterflymom]

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Edited October 5, 2015 by tampicc

[Fixit]

i am hoping that my ds8 new to panas as of 12/10...and ds3 who has not had an episode since 9/10..will continue to hold strong and in remission as i continue to figure out ds11....

my current frame of mind though..is to keep my(your) children on abx till symptoms remit...

ie..ds8 first strep 11/10 didn't tic till 5-6 weeks later..but aslo got mono, ear infection and another type of infec and it took about 2 1/2 months to completely stop......

and ds3 we are going on 7months in remssion...not reacting to anyone else...

younger 2 seem to have better immune system

by now ds11 would have had 1 or 2 more episodes due to strep... i am sure all pan/pit parents of multipleos will tell you that each one is just a little different in immune strength and reponse...i have yet to read of 2 that are the same..

and now that i have more info and resources, my younger ones will come out better in the end

[butterflymom]

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Edited October 5, 2015 by tampicc

[Fixit]

by now ds11 would have had 1 or 2 more episodes due to strep..

 

Hey Fixit, are you saying that your ds11 has NOT reacted to strep this year, because of treatment? Is ds11 your most severe child?

 

sorry for the confusion...my younger ds3 is definitley not reacting to others illnesses..

ds8, i think is not either..though i think i saw one tic yesterday and another the day before..he could still be healing as he is only about a month out of episode and it can take longer than we think and he is also 8..so a little older than the 3 year old..but i will take 1 tic a day

i think now that my kids are triggered..they will react quicker to infections..not weeks out(which was the pattern ds 11 followed. The first 2 times tics came a week or 2 with infection. by the third time tics arrived up to a week prior to swabbing positive)

 

ds11 would not have gone 7 months w/o episode...i think 5 is the longest..but i did get dh to have tonsils out and he has not had strep in 9 monhts or so....so that is huge and may be the reason why others are ok....but all my do attend school??

..but, i don't believe ds11 has had strep in years or really reacts to "strep" from others either.

Specifically since my dh would get strep 3 time year and can not correlate ds11 reacting to others..it seems to be only when he was indeed infected

for ds11 currrent state....i am thinking chronic myco p or autoimmune..waiting on second igenex draw....

right now he reacts to inflamation..i do not think infection is his problem...i know gut issues have caused havoc (and abx is the culprit)and allergies, as he has not been able to skip late march/early april w/o an episode since he was 3 years old

[butterflymom]

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Edited October 5, 2015 by tampicc

[HT's Mom]

Tammy, As you may have read, I have identical twin boys. Both boys always had some tics, add. Only one, however, has had full out PANDAS ocd/debilitating tics, etc. Some parents on this forum, and some doctors, including Dr. K, think that it is very possible that the brother has a "mild" PANDAS type issue as well - titers have never shown up above normal, just high in the normal range, for both strep and mycoplasma. This child is dealing fine, doing well in school, hides a few little eye and cheek-chewing type tics, while his twin is and has had numerous episodes of full on PANDAS. Dr. K says, brother is more likely than the average person, obviously, to develop PANDAS, but nothing is interfering with his life exactly. (Altho if I had an extra $15 grand lying around I might IVIG him as well just to be safe!) This doesn't really answer your question definitively , just another anecdotal story. You are certainly on the case if anything more develops in your daughter. Thanks for your input to my issues also.

[Fixit]

Fixit, is your ds11 on abx?

 

yes..he was, but took him off for a while to try to help gut..

not sure if it came across that he is not doing great...we have not done ivig or pex and it will be 2years april....

he needs some relief, looking at options...looking at last ditch to treat chronic myco p..

 

ps..i wonder if ds11 never really got rid of some of the streps fully and why he relapse avery 3 months..(not so in summer)...

so new thought is to keep younger ones on abx till remit fully(which they have) then do a different protocal..maybe keep on zith 4 days on 3 days off to allow gut time to recover

Edited April 11, 2011 by Fixit

[swim]

Sibling of DS12 started tics during mono (he was a few months from turning 9). We did 30 days of keflex - tics stopped about 2 days after starting treatment with keflex. We saw tics return for a day or two about 4 months later, but we did keflex again for 30 days. It has now been a year and 3 months since the first tics appeared during mono and younger brother remains symptom free. We did 30 days of keflex at initial onset and then 30 days again when tics appears a few months later. He has been totally symptome free with no abx for the last 11 months. So, I would treat sibling for at least 30 days and not take a chance on full blown PANDAS/PITAND. If we see tics again, we will do abx immediately since we are still struggling to rid DS12 of tics after having PANDAS/PITAND since age of about 4 1/2 and not being diagnosed until age 10.

[nicklemama]

Oh, Tammy, I have no advice but I hope its transient.

[smartyjones]

Just wondered for those of you who have multiple children with PANDAS. . . . . . .

 

Have any of you seen this in a sibling, and did it pass uneventfully, or did your child go on to have a severe explosion?

 

Thanks,

Tammy

 

 

i think this is a difficult question b/c we know so much that we 'see' things everywhere. dh even mentioned he was watching a kid recently that he was diagnosing -- stunning!

anyway, i think there seems to be more evidence of 'running in families' being common.

 

for us, ds6 presented 2.5 years ago. the more i've learned, i've had questions about ds9 -- slight -- very poor sportmanship, had a change from very easy going to more easily upset and poor handling of disappointments 6 mths prior to ds6's onset -- but also at age 6, which can be normal. occasional complaints of knee/ankle pain. but very active kid with baseball -- neighborhood street hockey and football where he dives into the ground, etc.

 

this fall, he had symptoms -- first, wouldn't be on a level of the house by himself; then, hyper focused on protecting his baseball cards in case someone broke in. stomach complaints, waking to pee in middle of the night that he never has done. ASO was normal, anti-dNase B was elevated. we continued in state of limbo for a while -- 'is he okay? are we just paranoid?'. i remember remarking to dh, "are we waiting for him to fall apart before taking him to ds6's dr?" a week or so later, he had extreme nighttime "bad thoughts".

 

integrative MD that we see for ds6 diagnosed strep, lyme and tic- coinfections. after about 1 mth treatment, those issues were much better. now still having trouble with inattentiveness and cognitive fog. still trying to get that straightened out.

 

so, in my opinion -- if a sibling is presenting symtpoms, i'd take it quite seriously.

 

good luck. keep us posted.