Some symptoms back even on Azith

[EAMom]

That is what I have been told by dr.K...also, the Mom I speak with who had a daughter in the NIMH study confirmed it (atleast in her case)...she said her daughters OCD went away, etc., but the symptom she still has quite a bit of is anxiety.

 

I am also not so sure that adults can't get/have PANDAS........or atleast a variant of it.

 

Kelly,

Did this girl have IVIG? do you know how old she was when she got it?

[EAMom]

our son is on azith every 5 days - when we see breakthrough symptoms with exposure to strep (or other illness) we give a round of antibiotics - a 5 day course will usually settle things down.

 

So that's a little scary that my dd is on 250mg every day and we're still seeing symptoms breakthrough b/c her sister is carrying strep!

[michele]

Could you clarify? I am trying to get this right. You give azith every five days (on the fifth day)? Then when you see symptoms from possible exposure to strep or illness you give an antibiotic for five days? What antibiotic do you use during exposure then? Still azith? How much do you take every five days? Do you use a different amount when it is given daily for five days? Thanks for the clarification.We are also seeing symptoms while on Omnicef 300 Mg a day. Recently with the strep going around the schools and virals he has been having symptoms again. Did you come up with this routine or the Dr. Which type of Dr. prescribed the azith every five days? Who gives the prescription during illness? Thanks. All this info is so helpful when we seek Dr's

 

our son is on azith every 5 days - when we see breakthrough symptoms with exposure to strep (or other illness) we give a round of antibiotics - a 5 day course will usually settle things down.

[ad_ccl]

We give 500mg every 5th day (2 pills). If he has an increase in symptoms we try to just let them ride out if they are not too bothersome, but if they linger and we know there has been exposure to strep of another viral illness (particularly when his siblings have been sick) we will do a full course - meaning 500mg the first day then 250mg each day for 4 more days. Sometimes we might add a few extra days - we always see an improvement by day 3.

we got the ok from the infectious disease clinic and our ped writes the script. It is left up to me to decide when to increase based on symptoms - it used to be every 3 months at least - but now we can go 4 or 5 months without needing a full round. I took in the article about azith - it says every week - we found that he had symptoms on day 5,6,7 - so we decreased to every 5th day - which is what Ronna does as well with success. We had been on amox for 2 years - he was doing ok so we tried going off it - it was a disaster - he had terrible tics and within the week were back on amox but it was not longer working - we then tried many antibiotics and combo of antibiotics over the course of 6 weeks - he was not doing well - azith was the last one the doctor would agree to trying - it was like a miracle - he got so much better within 24 hours we could see improvement and he kept getting better and better - we stayed on it for about 14 days then went on the once a week - but then down to once every 5th day. We just hope it continues to work for the next however many years until all of this passes. The infectious disease clinic thinks he will be on it until he is 18 - but we are hopeful it won't be quite that long - but we would never consider trying to go off it after our experience going off amox.

EAmom - is your daughter on probiotics or some other kind of yeast buster?

[P_Mom]

EAMom,

 

This girl had PEX...two rounds of it. (meaning she had it done at the NIMH in the study.....was doing great, but then she got the pneumococal (sp?) vaccine and had a terrible resurgance of symptoms.....PEX was then given again, but had no effect the second time around...as the docs expected!!?? She never received IVIG. She was 8 years old at the time.

 

Kelly

[Diana]

Folks - Now on Week 4 since IVIG. My son seems to be doing MARKEDLY better. I will keep you posted. Mild flareups once a week or so and then nothing. It appears a resolution to PANDAS is decidedly occurring. But time will tell for sure that it is holding. 95% of the time - he is the child I haven't seen for about 1-1/2 years. I would encourage you all to explore the opportunity with Dr. K. Yale docs are discussing the use of IVIG with him this week. Swedo was no fool when she figured all this out. It is a shame the medical community has made it difficult for us all.

[Diana]

Folks - Now on Week 4 since IVIG. My son seems to be doing MARKEDLY better. I will keep you posted. Mild flareups once a week or so and then nothing. It appears a resolution to PANDAS is decidedly occurring. But time will tell for sure that it is holding. 95% of the time - he is the child I haven't seen for about 1-1/2 years. I would encourage you all to explore the opportunity with Dr. K. Yale docs are discussing the use of IVIG with him this week. Swedo was no fool when she figured all this out. It is a shame the medical community has made it difficult for us all.

[rita]

Two weeks ago, our dd started exhibiting odd behavior once again. She's been on propholactic antibiotics since she got out of the hospital in March (7 months ago). We're seeing some of her measurement rituals return, some of her odd motion tremors and some restriction in her eating (similar to how she was in early February). This is by no means of the same magnitude as her symptoms in February, but it is also not the absence of symptoms that we've been blessed with for the past 4 months.

 

Low and behold we received strep notifications from her school and ended up taking her sister to the doctor to check for strep. Sure enough her sister cultured positive -- way positive. So we're treating her sister to eradicate her strep and are hoping our dd's symptoms subside.

 

We sort of knew this might happen -- i.e., that despite propholaxis our dd could have exacerbations due to exposure to strep. Even in the case of penicillin (which is bacteriacidal) it only supresses rapid growth and still relies on the body's immune system to get the bulk of the infection. Azithromycin stops the production of a protein, but similarly relies on the body's immune system to get the infection. So in the face of some strep, out come the antibodies and if the Swedo/Kirvan reports are correct, we'll have some cross-reaction/inflammation before the strep is wiped out.

 

So we're seeing a low-level version of symptoms. We're worried it'll get worse and hope it disappears again when her sister is cleared, but we'll have to see.

 

Sigh....

 

Buster

new to group. my son is 10, and got severe pandas after strep - has anyone seen severe "rage" attacks? finally improving with tonsillectomy and ivig, but whenver we take him off zithro, he does worse. who is dr k? tel no?

 

thanks

rita

[EAMom]

EAmom - is your daughter on probiotics or some other kind of yeast buster?

 

Yes, since June we have been doing a trader joe's probiotic. In Oct. I switched to Culturelle since this is more of an established brand. We're back to Trader Joe's now since dd started to complain that her stomach hurt when eating (getting full faster)...we're not sure if this is a side effect of Culturelle or the return of mild Anorexia Nervosa symptoms (an excuse to eat less).

 

She hasn't had any yeast problems that we are aware of. She doesn't seem prone to yeasty skin infections like our other dd did in the past.

[EAMom]

Hi Kelly,

do you know if this girl's symptoms got better (except anxiety) when she got to a certain age? Did she improve once she hit puberty?

[EAMom]

[

new to group. my son is 10, and got severe pandas after strep - has anyone seen severe "rage" attacks? finally improving with tonsillectomy and ivig, but whenver we take him off zithro, he does worse. who is dr k? tel no?

 

thanks

rita

 

Hi Rita,

how long ago did your son have IVIG? Where did he get it? Do you know the dose he got? How long ago was tonsillectomy? Dr. K. is Dr. Kovacevic . Here is a link http://webpediatrics.com/curriculum.html

[P_Mom]

EAMom,

 

Yes..actually her Mom said that once she had her period....."it stopped." She improved tremendously after she hit puberty, however she holds on to "quite a bit of anxiety." She was able to go off all meds though.

 

Here are some things that confuse me:

 

Her docs say the PANDAS is considered chronic, and they expect her to relapse if she gets strep again. (which she hasn't in quite a few years, so, we really don't know what would happen) They say to catch it early with antibiotics...then symptoms should mitigate nicely over time......this confuses me....so, PANDAS is chronic? or not? She did say her daughter has had other illness recently with no symptoms where these same illnesses would provoke a PANDAS episode before.

 

Also, according to dr. K...going through puberty with symptoms means set in symptoms for life. He really didn't talk much about improvement with puberty..however, I have heard of many instances of such a thing happening..so, who knows.

 

 

Any thoughts?

[EAMom]

Kelly,

 

I wonder if there is a difference in boys vs. girls...perhaps with girls with puberty the increased progesterone (?? does this increase with puberty?) modulates the immune response...I know it happens with pregnancy but maybe this happens with puberty (to a lesser degree) with many girls...although I don't know if this is something you can count on with all girls?

 

Any gender child would be less prone to strep as they get older so this will help too...but not a guarantee that a teen (or older) won't get strep...it's probably also an individual thing. Some teens may be more immune than others.

 

Yes, I wish we really knew more about what happens with puberty...whether it "sets the symptoms" (how scary!) or whether it is the beginning of kids outgrowing the disease.

[colleenrn]

I have also heard that PANDAS symptoms can greatly improve or even disappear when a girl starts menstruating. My daughter turned 12 in August and based on her developing body, I think she is due to start her period any time. I hope and pray that is does affect her PANDAS in a positive way and I will post any changes I may see when the time comes.

Colleen

[EAMom]

HI Colleen,

the other thing I've wondered is if certain birth control pills (the ones with progesterone?) would influence symptoms if your dd isn't completely better after puberty. I've heard that symptoms can improve with pregnancy...and since birth control pills "trick" the body into thinking it's a little bit pregnant, perhaps they would help?

How severe are your 12 year olds pandas symptoms?