New to PANDAS

[Mom3]

Hi, Im new here today. I am trying to get a handle on what is going on with my daughter. In April, she had a radical personality change - almost overnight she went from an easy-going, outgoing kid to someone different. She began having angry outbursts and crying over everything, she became obsessed with getting sick and dying, and she started having panic attacks at school where I had to go pick her up. She also began to have trouble sleeping and began to have strange food issues - she chews her food a ton because she is afraid she will choke and she refuses to eat many normal foods. All of this began the week after she was diagnosed with strep. She was treated for the strep (the usual 10 days on antibiotics) and seemed to get better from the strep. Due to her personality changes, we took her to a psychologist who has disgnosed her with OCD and recommended medicine (Lexapro) and therapy. I am confused because I don't know if she has true OCD or PANDAS. She seems to have the obsessions, but not the compulsions I see described with PANDAS. I think it might be PANDAS due to the overnight onset of these behaviors. A few questions for anyone who might be available to answer:

 

If she was treated for strep, is it possible that this might still be PANDAS?

If she was treated for strep, would additional antibiotics be helpful?

Is it possible to have just the obessions/emotions of PANDAS/OCD and not any tics or compulsive behaviors? or could the compulsive behaviors be things that I don't see (like something in her head)?

If this is PANDAS/OCD, is the anxiety medicine necessary - it scares me to put my child on this medicine, but if it is necessary, I will do so.

 

Thank you to anyone who has insight.

[Fixit]

If she was treated for strep, is it possible that this might still be PANDAS?

If she was treated for strep, would additional antibiotics be helpful?

Is it possible to have just the obessions/emotions of PANDAS/OCD and not any tics or compulsive behaviors? or could the compulsive behaviors be things that I don't see (like something in her head)?

If this is PANDAS/OCD, is the anxiety medicine necessary - it scares me to put my child on this medicine, but if it is necessary, I will do so.

 

Thank you to anyone who has insight.

 

So sorry you are here..many here will help you

running out so short answeres

 

1 yes

2 they could be..you may need to do more or a combo

3 any combination or single item (as we are learing more and more and remain open minded)

4 it may help..it may not...it may make it worse...others may answer better on this...my ds tics

 

how old is your dd?

[Kayanne]

Your daughter sounds just like mine...many of the same symptoms.

 

Her OCD didn't seem to have compulsions either--just obsessive thoughts that shut her down. A ped psych that we saw told us absolutely that OCD can just be obsessive thoughts...but the excessive chewing is a compulsion in response to her fear of choking...you are describing a compulsion.

OCD is not just what many think of as rituals...the thoughts can be debilitating.

 

What part of the country are you from?

 

Have you had your daughter back to the doctor's to confirm her strep is gone?

 

I wish I could post more, but I have to go...hang in there!

[peglem]

Welcome to the board! you'll get a lot of help and support from many wonderful and dedicated people! Here's what I think:

 

If she was treated for strep, is it possible that this might still be PANDAS?

Yes, PANDAS is caused by certain antibodies the body makes in response to strep, not the strep itself. The antibodies take roughly 4-6 weeks to dissipate, but will only do so if the strep is completely eradicated.

 

If she was treated for strep, would additional antibiotics be helpful?

 

Yes, strep is everywhere and just exposure, now that her immune system has "immune memory" can trigger more production of the rogue antibodies. So, it is a good idea, in my opinion, to give her every chance to fight strep as you can.

 

Is it possible to have just the obessions/emotions of PANDAS/OCD and not any tics or compulsive behaviors? or could the compulsive behaviors be things that I don't see (like something in her head)?

I think that it is possible, but its also possible that she is hiding compulsions when she can because she knows it is weird behavior, can't explain it, and doesn't want people to think she's weird.

 

If this is PANDAS/OCD, is the anxiety medicine necessary - it scares me to put my child on this medicine, but if it is necessary, I will do so.

Experiences I've heard about on this board w/ psych meds vary. My child's experience with psych meds, and we've tried a lot of them, is that they ether do not help or they make things worse. But, even if they help, it makes it harder to tell if the PANDAS treatment is working or not, since the meds may be masking symptoms.

[thereishope]

Welcome. Everyone already gave you great answers. Personally, and this is just my opinion, I would get her another strep test and a different antibiotic like Augmentin or Zithromax before starting Lexapro. I'm assuming the doc gave her amoxicillin or penicillin the first time? Unfortunately, a lot of PANDAS kids do not clear on thsoe meds and there is a failure rate associated with them http://www.entrepreneur.com/tradejournals/.../169459644.html

 

 

As for the eating, other PANDAS kids have eating problems as a symptom whether it be Anorexia, contamination fears or choking fears. Try your best to keep up the nourishment with what she is willing to eat, whatever that may be.

 

Some kids will also have an easing of symptoms with Ibuprofen. You can try that as well.

 

Here are some useful threads for you to read. They may answer some questions or lead to new ones...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

Edited July 16, 2010 by Vickie

[EAMom]

The moms have already posted excellent answers.

 

 

If she was treated for strep, is it possible that this might still be PANDAS?

YES!!! Your dd sounds like a "text-book" PANDAS case. How old is she?

 

If she was treated for strep, would additional antibiotics be helpful?

 

Many PANDAS kids find long term antibiotics to be really helpful. What antibiotic was your dd on? Did they reculture her throat 2 weeks after the last dose to make sure she cleared? I would also STRONGLY rec. throat culturing family members (any siblings?) to check for assymptomatic carriers.

 

If this is PANDAS/OCD, is the anxiety medicine necessary - it scares me to put my child on this medicine, but if it is necessary, I will do so.

My dd was put on Lexapro when she first got PANDAS/ocd. While it helped with the OCD (somewhat) she also had some nasty side effects (akathesia, serotonin syndrome, increased aggression). The tricky thing was, the Lexapro side effects were easy to confuse with the PANDAS symptoms! We did eventually switch to a low dose of Prozac (long story) which seems to help. But, for most people, I would say, avoid the psych. drugs if at all possible, and if you do use them, proceed with extreme caution, and keep the doses low. IMO, the first line of treatment should be long term full-strength antibiotics (my dd has been on 250mg/day Azith. for over 2 years) and meds to help with the autoimmune problem (a course of pred, IVIG, and/or pex) rather than psych. drugs which 1) could make things a lot worse 2) can mask symptoms, not treat the root cause of PANDAS.

[Mary M]

If she was treated for strep, is it possible that this might still be PANDAS?

If she was treated for strep, would additional antibiotics be helpful?

Is it possible to have just the obessions/emotions of PANDAS/OCD and not any tics or compulsive behaviors? or could the compulsive behaviors be things that I don't see (like something in her head)?

If this is PANDAS/OCD, is the anxiety medicine necessary - it scares me to put my child on this medicine, but if it is necessary, I will do so.

 

 

First, you have come to the right place and will learn more than you ever thought possible from the families on this forum and be supported by complete strangers, who will become your friends.

 

re: your questions:

 

Our dd12 has been on abx (as have most of the children represented on this forum) for months. Even a change in abx increased her sypmtoms so continued daily abx have been crucial to our dd's treatment.

 

Our dd12 had no tics until she had been in full exacerbation for many months. And for much of that time, her OCD behaviors were practically all internal/mental events. When she couldn't hold them in any longer, we saw the outward manifestation of her OCD. We still believe her mental complusions/obsessions outnumber her overt OCD rituals.

 

Our dd12 was prescribed Zoloft but only took three 12.5mg doses as then her titers came back elevated and our ped had the forethought to ask the psychiatrist to d/c the zoloft in order to be able to keep the variables low while we attempted to determine the best course of action. As challenging as it has been to have to witness the mental illness components of PANDAS, at least now we know that the changes we are seeing are related only to the effects of the IVIg and are not confounded by a variety of other variables (ie: ssri's and psychotropics). And believe me, after what we have lived through, there have been times that we have tried to get our dd on ssri's or psychotopics but I am glad that Dr K and our ped kept us on this path of limited intervention so that we could truly see the effects.

 

Finding the doctors who will best be able to understand PANDAS will be an important first step. Where do you live?

Mary

from Michigan