Is it PANDAS?

[bman]

Hi folks and thanks for all your great posts here. Like most of you, we are new to all of this and the site has been a tremendous help in sorting out what we are trying to deal with. I was hoping to get some input on the actual diagnosis for PANDAS for our 13 year old daughter. This all started about a month ago when she was sick with the flu (might have been swine but we did not test for it) right around Thanksgiving. She was home for a week with a pretty high temperature and then we went away for the long weekend. When we returned we started to notice that she was having a very difficult time with her homework and had a tough time going back to school - she has always been a good student but had to work hard at it. She all of a sudden had classic OCD symptoms (writing and erasing, taking long time to get ready for school, hand washing...) and we coincidentally had teacher conferences and we discovered that her grades all of a sudden had fallen off the cliff (the teachers were miffed). We started to read up on things and easily diagnosed the OCD but were shocked at how fast it came and heard of PANDAS through a CBT specialist. We had her tested for strep and the throat culture was negative but the blood test came back positive. The pediatrician reluctantly gave us a course of Amoxicilan over the Christmas holiday and she is now done with that but we were not asked to have her retested for strep (he psychiatrist says we will know if it was PANDAS in a couple of months - she is also on the SSRI Luvox that she prescribed back when the OCD was officially diagnosed). The re-entry into school was VERY difficuly and all of her OCD symptoms came back the day before she went back (she was actually starting to eliminate some obsessions over the break) so it was tough to tell whether the antibiotic was working or not b/c the anxiety brought on by school was so great.

 

So, my questions are:

 

- does this sound like PANDAS?

(another note is my wifes brother a couple of his kids have OCD so there is some history there)

- should we have her tested again for strep to see if it is gone?

- how do you know if the antibiotics are having an impact - is it simply seeing a reduction in OCD symptoms, and if so, would/could the anxiety of school override this?

 

The doctors that we are currently working with are not bullish on PANDAS so this probably doesn't help. Any input from your experiences would be much appreciated.

 

Thanks!

[thereishope]

Welcome.

 

When did she finish her script of amoxicillan? Have you seen any improvement at all?

 

I'll let you know right off the at that the majority of PANDAS kids need more than amoxicillan. Some do get better on it, but it seem sto be more of a rarity. Often something like Zithromax or higher dose Augmentin is needed. An article that is often posted that cites the failure rate of amoxicillan and strep is..

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Also, often PANDAS kids need more than the 10 script that a lot of docs give. A month trial is usually what is needed.

 

Let me add, that recovery does take time. The quicker you erradicate all the strep, recovery can begin. Your child will not be back to 100% themself by the end of a script, but hopefully you will see significant improvement.

 

In reference to retesting for strep. It has been said on here that you should get retested for strep 2 weeks after fiishing abs. The ped won't tell yout his. You need to just call and say you want a strep test. If you see dramatic backsliding in symptoms, take her sooner.

 

Have all family members tested. All 3 of my kids are asymptomatic. No classic symptoms.

As for the immediate relative with OCD, tell them what you have learned and tell them to get their children tested for strep as well. If you need to scare them into get their kids tested, so be it. If they have strep, your child can recontact it and you may hold the key to their own recovery.

 

You have probably seen such things as PANADS fact sheet and FAQ on here. They really are amust to read. Also, a great website is www.pandasnetwork.org

[thereishope]

I completely forgot to mention that strep can occur in more places than just the throat. One can have strep in the sinuses, in the gut, peri anal strep, strep on the skin, and vaginal strep.

 

So, discuss with your doctor about looking for hidden strep in your child.

[bman]

Thanks Vicki for the reply - sounds like we should have her retested. The tough thing for us is whether the school anxiety trumped any improvement she was showing from the antibiotics...so we are not really sure if they were having an impact but as you say, the amoxicilin might not be the right choice in the first place. Our pediatrician does not know much alot about PANDAS so he was not in agressive treament mode - he just said it was worth a try so we did the 10 day cycle.

[thereishope]

During recovery, when my son was put in what he considered a stressful situation, we would have a setback. However, I made my own "3 day rule". If the setback was bad enough and lasted more than 3 days, we would go back to the dr for another test. Realistically, even though one sees improvement, it won't always be clear sailing. There are going to many bumps in the road to recovery. It is important to trust your parental instinct. A lot of time it has the answer.

 

I should add if my son had one of his signature PANDAS meltdowns after those had passed, I would not wait 3 days. I would run to the doctor.

[matis_mom]

Thanks Vicki for the reply - sounds like we should have her retested. The tough thing for us is whether the school anxiety trumped any improvement she was showing from the antibiotics...so we are not really sure if they were having an impact but as you say, the amoxicilin might not be the right choice in the first place. Our pediatrician does not know much alot about PANDAS so he was not in agressive treament mode - he just said it was worth a try so we did the 10 day cycle.

Bman,

I would say if you saw ANY improvement at all while on antibiotics, that's a pretty good indicator that it is PANDAS. Of course, if she did not clear it all the way, or if she has been exposed again (that's why you need to check EVERYONE), she will go back to square one. If she's positive, ask for a different antibiotic, and a stronger, longer course, and then take it from there. It's great that your doctor agreed to try the antibiotics, but if he's not willing to try something stronger, you need to get yourself a different doc! Our pediatrician did Amoxicillin the first time, and then when we went back and tested positive two weeks after finishing the antibiotics, they agreed to prescribe something different, although we had to ask and insist that this was not a new infection, but one that had not been taken care of by Amoxicillin.

[bman]

Thanks Vicki for the reply - sounds like we should have her retested. The tough thing for us is whether the school anxiety trumped any improvement she was showing from the antibiotics...so we are not really sure if they were having an impact but as you say, the amoxicilin might not be the right choice in the first place. Our pediatrician does not know much alot about PANDAS so he was not in agressive treament mode - he just said it was worth a try so we did the 10 day cycle.

Bman,

I would say if you saw ANY improvement at all while on antibiotics, that's a pretty good indicator that it is PANDAS. Of course, if she did not clear it all the way, or if she has been exposed again (that's why you need to check EVERYONE), she will go back to square one. If she's positive, ask for a different antibiotic, and a stronger, longer course, and then take it from there. It's great that your doctor agreed to try the antibiotics, but if he's not willing to try something stronger, you need to get yourself a different doc! Our pediatrician did Amoxicillin the first time, and then when we went back and tested positive two weeks after finishing the antibiotics, they agreed to prescribe something different, although we had to ask and insist that this was not a new infection, but one that had not been taken care of by Amoxicillin.

[bman]

During recovery, when my son was put in what he considered a stressful situation, we would have a setback. However, I made my own "3 day rule". If the setback was bad enough and lasted more than 3 days, we would go back to the dr for another test. Realistically, even though one sees improvement, it won't always be clear sailing. There are going to many bumps in the road to recovery. It is important to trust your parental instinct. A lot of time it has the answer.

 

I should add if my son had one of his signature PANDAS meltdowns after those had passed, I would not wait 3 days. I would run to the doctor.

 

 

Thanks again for your feedback here. We definitely need to get another test to see if things have cleared up - she still has some of the tics (squinting the eyes and other OCD behaviors) but we are not sure if that is simply brought on by the anxiety of school (which is big for her) or if antibiotics would be the answer. Are you guys treating wtih SSRI's as well?

[thereishope]

No, my son hasn't taken SSRI's. They were suggested to us at the tail end of exacerbation # 3, but therapy was enought to get rid of his residual OCD.

 

SSRI and PANDAS have to be done with caution. PANDAS kids may react differently to them. If you read the fact sheet Buster did, under treatment it is explained along with a citation to a study done.

 

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

[T_Mom]

BMan--the best advice we ever got was to try antibiotics for a month at the full-strength level. We did this, and all we could get at the time was Amoxicillan. It was a process, but week to week we saw improvements.

 

Look for week to week improvements, and patiently try,... would be what I would do. Especially if your child reacted well before with antibiotics.

 

If exposure to school brought exposure to another child with any illness this could have triggered a reaction in your child. Pandas, after the initial strep infection, can "reoccur" with full blown OCD and tics simply from exposure to "illness" in another child...and you may not get a "positive" strep test!!! Please note that Sue Swedo also observed that other illnesses can trigger a Pandas reaction after the child has an initial exposure to strep, (in her research!)

 

I'd say if you think antibiotics helped that it is worth a try once more, for a longer period of time. Our d has been on Amoxicillan full strength for a year. If Amoxicillan is not strong enough you may need a different antibiotic. Augmentin has also been helpful to us.