PANDAS suspected, but it's only been a month

[Minette]

A month ago my daughter (just turned 7) developed severe anxieties about being at school with kids who were, had been, or might be sick. She has always had an anxious temperament, and there are various other things going on that could have triggered a bout of anxiety, so we assumed it was psychological at first. But I posted about it on another parenting board and one of the moms there said I should think about PANDAS. I thought it was unlikely since as far as we knew, she'd never had strep. But then I read that it could be triggered by other illnesses or immunizations, and I realized that her anxiety had started exactly two days after a FluMist vaccine.

 

I should mention that she was also diagnosed with celiac disease about 6 months ago. Her celiac symptoms were always mild and have completely gone away since starting the gluten-free diet.

 

For the first couple of weeks, the anxiety was bad at school, but she was OK everywhere else. Now it seems to be spreading to all areas of life. It's not like our former child has completely disappeared, but the anxiety is obviously overwhelming her. However, she doesn't have any tics or repetitive behaviors, and her handwriting is fine. Her only symptoms are obsessive anxiety and urinary frequency (which is also not a new thing for her -- she often gets it when under emotional stress).

 

She just started seeing a therapist for anxiety and possible OCD, and we're waiting to see how that goes. In the meantime, I finally got worried enough to have her tested for strep, and she is positive after all. (The culture was positive -- one blood titer was neg, and the other hasn't come back yet. Sorry, I don't know which is which.) So she also just started a 10-day course of amoxicillin. Too soon yet to see if it makes a difference.

 

My question is, what do I do now? If it does turn out that she has PANDAS, I feel very lucky to have learned about it before going through the months or years of ###### that many families seem to endure. However, it also seems like there's no protocol for diagnosing or treating it without a history of multiple episodes. Would any doctor, even a PANDAS-friendly one, take me seriously after only one month and with (by comparison with other PANDAS kids) relatively mild symptoms? Or do I just have to wait and see if it gets worse?

 

Sorry so long -- I just wanted to give whatever info might be helpful. Thanks for any advice you can give me.

[laure]

A month ago my daughter (just turned 7) developed severe anxieties about being at school with kids who were, had been, or might be sick. She has always had an anxious temperament, and there are various other things going on that could have triggered a bout of anxiety, so we assumed it was psychological at first. But I posted about it on another parenting board and one of the moms there said I should think about PANDAS. I thought it was unlikely since as far as we knew, she'd never had strep. But then I read that it could be triggered by other illnesses or immunizations, and I realized that her anxiety had started exactly two days after a FluMist vaccine.

 

I should mention that she was also diagnosed with celiac disease about 6 months ago. Her celiac symptoms were always mild and have completely gone away since starting the gluten-free diet.

 

For the first couple of weeks, the anxiety was bad at school, but she was OK everywhere else. Now it seems to be spreading to all areas of life. It's not like our former child has completely disappeared, but the anxiety is obviously overwhelming her. However, she doesn't have any tics or repetitive behaviors, and her handwriting is fine. Her only symptoms are obsessive anxiety and urinary frequency (which is also not a new thing for her -- she often gets it when under emotional stress).

 

She just started seeing a therapist for anxiety and possible OCD, and we're waiting to see how that goes. In the meantime, I finally got worried enough to have her tested for strep, and she is positive after all. (The culture was positive -- one blood titer was neg, and the other hasn't come back yet. Sorry, I don't know which is which.) So she also just started a 10-day course of amoxicillin. Too soon yet to see if it makes a difference.

 

My question is, what do I do now? If it does turn out that she has PANDAS, I feel very lucky to have learned about it before going through the months or years of ###### that many families seem to endure. However, it also seems like there's no protocol for diagnosing or treating it without a history of multiple episodes. Would any doctor, even a PANDAS-friendly one, take me seriously after only one month and with (by comparison with other PANDAS kids) relatively mild symptoms? Or do I just have to wait and see if it gets worse?

 

Sorry so long -- I just wanted to give whatever info might be helpful. Thanks for any advice you can give me.

 

 

 

Hi Minette,

 

Urinary frequency and a sniffing tic were my daughter's only symptoms for about 4 months. I wish we had paid attention to them. She, too, had no symptoms of strep, but the urinary frequency was a big one. An overnight PANDAS explosion of OCD 2 months later drove us to desperation. 10 days of amox helped tremendously, but that was just the tip of the iceberg. We treated for PANS for 4 more months, and then doctor found lyme (it didn't show up initially on a simple western blot).

The gluten free diet is probably helping to take a load off of your daughter's immune system, but because of underlying infection, which could be anything from strep to mycoplasma to lyme disease and co-infections, she is relapsing. No amount of therapy will help if she has an underlying infection.

Please see an PANDAS friendly infectious disease doctor as soon as possible! You didn't say where you live, but folks on here can give you recommendations.

 

Big hug!

 

Laura

[smartyjones]

Minette - sorry, i don't have much time. your info about diagnosing and treating without multiple episodes is not correct. are you aware of the clinical trial at NIMH? i believe they are actually looking for cases with onset within 6 mths. http://clinicaltrials.gov/ct2/show/NCT01281969

 

good luck!

[Missmom]

FYI... Amoxicillin does not work very well, if at all, for a lot of us on this forum. If you don't see any improvement don't assume it is not pandas, it may just be that you need another abx such as augmentin or Zithromax. Amoxicillin did not help my son at all, we did not see improvement until he started augmentin.

[Minette]

Quick update: We saw about a 90% improvement after the very first dose of amox yesterday. She was happy when I picked her up at school and didn't mention her fears one single time all evening. It was so fast, I almost thought it couldn't be the amox because I didn't think abx worked that fast. This morning she has talked a few times about feeling scared, but is still so much better than before starting the amox.

 

I know it can't really be this easy, but this is a pretty strong indicator that we're on the right track, yes?

 

Does therapy really not help at all? I realize it won't cure the problem, but our thought was that if she could learn some coping skills for when she does have a flare-up, that in itself would be useful.

 

I live in Boulder, CO. I found a list of PANDAS-friendly doctors on savingsammy.com, and there is one at Children's in Denver, but when I looked him up, he actually specializes in childhood stroke...? There is also one listed in Boulder who seems to work mostly with kids with learning disabilities (which my DD doesn't have). Is it still best to start by giving one of them a call, or is there another way to find a doc who actually specializes in PANDAS?

 

Thanks for the advice!

[kos_mom]

Some find near immediate improvement on abx, particulary if it's caught early. I'd encourage you to look into the IVIG study at NIMH. If you look at the sticky threads at the top of the forum, you'll find a thread on doctors who have helped. Here is one I found from Colorado:

 

Dr. Issac Melamed, Immunologist with IVIG infusion center – very proactive and thorough

Centennial, Colorado

720-488-0331

 

There are also doctors listed by state on one of the pages of the thread--you'll find some for Arizona. Many new onset parents do a telephone consult with Dr. T in NJ--he'll order a list of labs and you'll get good feedback from him.

 

Ko's Mom

[nicklemama]

Hi Minette- I'm the mom from the parenting forum. Glad you made it here. You are getting good advice and I'm glad to see it appears there is a treating dr in Colorado. Looks like you have caught things early in the game and that is to your daughters advantage. It seems easier to treat PANDAS when caught early. I would recommend looking into the NIMH trial and see if she qualifies. I would also contact the above recommended doctor and get her in there right away.

[3boysmom]

Remember that it usually will take months of antibiotics and not just 10 days. This is when you may run into problems. You have your 10 days because your dd tested positive, after that then doctors think since the infection is gone then you don't need more antibiotics ( they don't understand ). Not trying to be negative, just preparing you for the possability. Also, please remember to give probiotics with the antibiotics to help avoid yeast issues... Very important!

 

You are so blessed to have been informed about this illness early, your chances for a full and quick recovery are SO much better than to waste years with all kinds of wrong diagnosises!!!!!

 

Happy Thanksgiving,

Linda

Edited November 22, 2012 by 3boysmom

[smartyjones]

Quick update: We saw about a 90% improvement after the very first dose of amox yesterday. She was happy when I picked her up at school and didn't mention her fears one single time all evening. It was so fast, I almost thought it couldn't be the amox because I didn't think abx worked that fast. This morning she has talked a few times about feeling scared, but is still so much better than before starting the amox.

 

 

yes, you can see a very quick response AND yes, it is not that easy.

 

my ds had 100% remission in about 3 days when he got on the right abx. at that time, he had a 30 day course and he backslide after about 30 days off abx. this was 3.5 years ago, i didn't know much about pandas, i didn't know this forum, yada yada yada on what i didn't know. i actually thought he was cured!

 

and i would advise therapy is a good idea -- for exactly the reason you state. it does seem to be difficult for a child in an exaceration to focus and work with therapy -- but there are different stages of exacerbation and some things that 'stick' even when much healthier. and that's coming from me who has been very jaded with the psych profession from unfortunately seeing some unhelpful psychs. there are some good ones out there -- it just seems to be like finding a needle in a haystack. we have some strageties that we don't use often but when he flares, they come in handy for everyone.

 

my advice would be to continue the abx until you have a good solid plan from a doc who KNOWS pandas -- even if you see wonderful improvement and a doc that isn't so knowledgable suggests cutting abx.

Edited November 23, 2012 by smartyjones

[Missmom]

The first two episodes my son experienced went completely into remission with just the standard 10 days of abx. Then the third episode hit and it was much more difficult just to get under control. He is now on long term abx because each time I try to reduce the dose the symptoms start to return. My point is that even if your daughter seems to get back to 100% after abx., you should still make an appt. with a pandas friendly doc and establish her as a patient, just in case she gets sick again and symptoms return. It will make it so much easier for you to recognize symptoms and get started on more abx. So glad she responded so well that is a great sign.

[mom md]

My daughter was diagnosed about two months ago. She is 6 and we caught it early. She was started in Omnicef and her symptoms started improving after 7 days. We were given a three month prescription. About 3-4 weeks in we saw Dr. L. She suggested trying a one month steroid course to see if we could "erase" the immune system memory since we caught it so early. Interesting idea and our immunologist thought it was also worth a try. She finished the steroids two weeks ago and she now has no symptoms. We saw a pediatric infectious disease doctor and she said to keep her on the omnicef for the next 6 months until she see sher back and if she flares again go straight to IVIG. I have two sons with the disease that have required IVIG and I plan to take her advice. I would love to think antibiotics and steroids will work, but knowing our history I bet there will be a round two.

My best advice is to keep them on antibiotics and while they are in a good place get them established with a doctor somewhere that can go to the next level if they need it.

[Minette]

Thank you for all the advice. I'm discouraged that after about 24 hours of being so much better, she is now starting to display those obsessive fears again. I was hoping to at least have a break for as long as the 10-day course of amox (for my sanity and because it would make it more clear that it is pandas...).

 

Her (fraternal) twin is also now complaining of sore throat and headache -- for all I know, she caught strep from her sister. Since my DD's main fear is of people who are sick, this is going to make our family life very difficult as she refuses to be in the same room (or car) with her sister. I may try to get the other DD in to the doc tomorrow to get a culture. If she does have strep, I want her abx well underway before the first DD finishes her course!

 

Should DH and I both be tested for strep too, even though neither of us have symptoms?

 

I will also start calling doctors tomorrow. Thanksgiving weekend, but maybe someone will at least have a receptionist working... Thanks again. I'm so glad to have found this forum.

[kos_mom]

Sorry the improvement didn't last--it is not a bad idea at all to have everyone tested. You can do this at urgent care if you can't get a doctor; throat cultures can be done perfectly adequately at CVS.

[3boysmom]

Not sure how many Old threads that you have read through, but PANDAS kids can be "canaries in a coal mine" with strep. Meaning they can detect and flare with strep in others around them. I know, I know, sounds crazy but it is common! Like someone with a severe peanut allergy can detect and react to peanuts In the enviornment without even eating any peanut items.

[nicklemama]

Everyone in the family needs to be tested. This is a wax and wane disease. Ups and downs are to be expected. She's going to need more than the 10 days of amoxi and I'm guessing she's going to need something other than amoxi. Start printing out the literature. You can find a lot of it on www.pandasnetwork.org and take it to your ped. Try and get your ped onboard. If there is resistance, move on and don't waste your time and money.