New and need a direction...

[lmkmip67]

My son just turned 7 and I believe he may be dealing with PANDAS. He has always been a ticky, anxious, kind of OCD kid. stubborn, etc. But everything got much worse this past spring. He developed a tic that turned vocal. His reading teacher asked if he had strep recently, and he had! It has been treated with the typical antibiotic and he seemed to get better. we took him back in and had him tested with a throat culture, and nothing. But the tic remained, and it has gotten worse. He now has about three or four of them, has OCD symptoms that seem much worse than before, etc. We did start seeing a behavioral therapist thinking it was just transient tics and some anxiety. She soon realized something else was going on, or more than she could deal with. So we are back to square one, sort of. I have been reading more about this and I really want to get him tested, or find out if this is what we could be dealing with. My next step is to contact his pediatrician again and ask for a referral to a doctor that can help us. But I am unsure who to ask to see. Some of my questions are this....

 

Should I ask his pediatrician to test for the strep titters? I am not even sure exactly what to ask for.

Who should I ask to see? I have a few names from here in Boston near where I am. But WHO, which one? Some are neurologists, some immune type doctors, etc. I am so confused. I want to kind of get him tested in general for OCD and TS. But should I try the PANDAS route first?

Should I just pick one doctor listed here, perhaps a neurologist and get him tested for all the above? Some didn't seem willing to give long term antibiotics again though. Or be open to the IVIG treatment. Forgive me if I am asking the wrong questions or saying things the wrong way. I am feeling a bit overwhelmed and confused. I am calling his pediatrician on Monday so just need to kind of know what should I ask for from her? Testing from her? And I know it can take months to get into some doctor that treats PANDAS. What should I do in the mean time? Ask her to treat him with antibiotics? Start CBT for him again with someone that specializes in OCD itself? As you can tell, I am really confused. I want to help him as fast as I can, but it takes so long to see these doctors.....

 

Thanks for any info. I am in Mass, near Boston if that is helpful in recommendations.

[kimballot]

Welcome to the forum. It sounds like you have found us pretty early on... which is good for you and your son!

 

I would start by asking the pediatrician for ASO and DNASE B titers... and I would plan to have them drawn a second time about 1-2 weeks later. That can tell you if the titers are rising or falling, which is what you really need to know.

 

Also, while titers can help you to understand things better, negative titers do NOT mean that your child does not have PANDAS.

 

I would start by talking to the pediatrician to see how comfortable he/she is with PANDAS. If they tell you that your child does not have PANDAS because the strep culture is negative, then it is time to move on to a new doctor, as PANDAS is a reaction to the strep antibodies - not the strep itself, and the antibodies can last for quite some time.

 

Getting help from someone who specializes in OCD or tourette can certainly be helpful as you try to sort this out. I would try to get input from a variety of specialists and then see who has a picture that seems to fit your child the best.

 

If you are looking for a PANDAS doctor in the Boston Area, check out the doctors listed in the pinned threads above (also found at http://www.latitudes.org/forums/index.php?showtopic=3928)

 

Many folks in the New England area use Dr. B from Connecticut.

 

Best wishes - and I hope lots of other folks chime in with some thoughts for you!

[saidie10]

My son just turned 7 and I believe he may be dealing with PANDAS. He has always been a ticky, anxious, kind of OCD kid. stubborn, etc. But everything got much worse this past spring. He developed a tic that turned vocal. His reading teacher asked if he had strep recently, and he had! It has been treated with the typical antibiotic and he seemed to get better. we took him back in and had him tested with a throat culture, and nothing. But the tic remained, and it has gotten worse. He now has about three or four of them, has OCD symptoms that seem much worse than before, etc. We did start seeing a behavioral therapist thinking it was just transient tics and some anxiety. She soon realized something else was going on, or more than she could deal with. So we are back to square one, sort of. I have been reading more about this and I really want to get him tested, or find out if this is what we could be dealing with. My next step is to contact his pediatrician again and ask for a referral to a doctor that can help us. But I am unsure who to ask to see. Some of my questions are this....

 

Should I ask his pediatrician to test for the strep titters? I am not even sure exactly what to ask for.

Who should I ask to see? I have a few names from here in Boston near where I am. But WHO, which one? Some are neurologists, some immune type doctors, etc. I am so confused. I want to kind of get him tested in general for OCD and TS. But should I try the PANDAS route first?

Should I just pick one doctor listed here, perhaps a neurologist and get him tested for all the above? Some didn't seem willing to give long term antibiotics again though. Or be open to the IVIG treatment. Forgive me if I am asking the wrong questions or saying things the wrong way. I am feeling a bit overwhelmed and confused. I am calling his pediatrician on Monday so just need to kind of know what should I ask for from her? Testing from her? And I know it can take months to get into some doctor that treats PANDAS. What should I do in the mean time? Ask her to treat him with antibiotics? Start CBT for him again with someone that specializes in OCD itself? As you can tell, I am really confused. I want to help him as fast as I can, but it takes so long to see these doctors.....

 

Thanks for any info. I am in Mass, near Boston if that is helpful in recommendations.

 

Well you have come to the right place for help! Sorry you are dealing with this though. Any neurological issue with a child is so very scary and I hope you find the answers you need to help your child heal.

 

I would start with the PANDAS route. If you have an open minded Pediatrician, you could ask for some initial testing (strep titers) and even abx if they are willing to try. If not, find a PANDAS expert near you and get an appt. ASAP. I am sure some others on the board could offer some good advice on who to see in your area. I am in Texas.

[KaraM]

Hi and Welcome,

 

We are also in MA (North Shore). We considered a few docs in Boston, but eventually decided to go to Dr. Bouboulis in CT. We can have a discussion off line if you'd like about the reasoning (or anything else with PANDAS). You can send me an email if you are interested by clicking on my profile and choosing the "email" link.

 

Kara

 

 

[LNN]

I think Kara will be able to give you invaluable advice, so I won't repeat what she'll probably tell you. I would only add that I don't know anyone in the Boston area who's had luck with doctors there and most people in the Mass/RI/CT area head to Dr B. A few people in Maine have found support locally, but I don't know how close to Boston they are. They may chime in.

 

I think pursuing ERP/CBT therapy is an excellent idea, regardless of diagnosis. Learning to be the boss of your own thoughts and emotions is empowering for any child and a good therapist can give your child skills that will last a lifetime. You can go to www.ocfoundation.org to find a list of therapists in your area. If they have BTI after their name, it means they've been specifically trained in ERP techniques. One caveat - while ERP can be very helpful for kids with traditional OCD as well as Pandas kids, a Pandas kid will need medical support (antibiotics, perhaps other immune-modulating treatments) in order to really get on top of the OCD. Therapy is an important piece, but not the only one.

 

As for which path to pursue, realize you're asking a biased group. But it seems that if you can see an infection link to behaviors, then pursuing a focus on the immune system may be a fruitful first step. But you know your child best and you will have to educate yourself and then trust your own gut.

[momaine]

I can't advise you strongly enough to make the trip to see Dr. Bouboulis in CT. SO worth the drive. Wish I'd done that first.

[thereishope]

Welcome. Here is a flowchart that may help

http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

 

As for ERP or CBT, I agree that it is something to look into. Sometimes, if a child is in a full blown exacerbtaion, they may not be very repondent to therapy until the correct antibiotic has started to work. But then a lot of therapists have long waiting lists so it's worth looking into one now. When finding a psychologist/therapist, interview them ahead of time and throw the word PANDAS out tehre to hear what they have to say. You may weed a few out by their response. Finally, some kids will have an easing of symptoms with Ibuprofen so you can try that too. But, that's more of a band aid and one needs to conitue to get to root of the problem.

Edited August 22, 2010 by Vickie

[lmkmip67]

Thank you all so much for the replies. I will have to see how far away the doctor is. I am wondering if it is worth trying to get in somewhere here in Mass to at least get a diagnosis? I don't want to ignore getting him evaluated for OCD and a tic disorder either in case this isn't it. But he sure does fit the profile from what I have been reading. Is there any place I can find some really good, concise information to print out for our pediatrician so she will at least see the need to do the blood tests?

 

One other question. I was reading on some general sites that they don't see antibiotics improving the tics and OCD, but is only used as a preventative. Yet so many on here seem to be on long term and do see improvement. I do understand this disorder or syndrome is not well studied yet.

[Rowens1214]

kimballot. my 15 yr old did have neg titers but has PANDAS. I know this is a question that goes back and forth. His Dr is great and is treating my son for PANDAS but still mentions every time we go in that she wonders about the neg titers. My youngest just had blood drawn last week to check his titers and i feel certain his may be neg too. Is there some documentation or posts you could point me to to show my dr (and husband) i do know on Dr K's website he mentions this. My Dr seems to be big on numbers. says so she can measure success, failure of treatment by numbers. I keep reminding her that history and symptons and also very important. any help with this would be so appreciated. The only number we have is his CamK (151) all his titers were neg. His cultured strep was positive (type F strep????)

 

Thanks

Robin

[thereishope]

Antibiotics are used to help erradicate the infection. Once the infection is gone, the antibody levels will hopefully lower.Once the antibodies lower, they will no longer be causing inflammation. The inflammtion will now have a chance to decrease. That is when you will see improvement. Yes, some kids do improve on antibiotics. The tricky part is finding the right antibiotic for your child.

 

Some websites you can pass onto your dr are

www.pandasnetwork.org

www.pandasresourcenetwork.org

 

Some useful links

PANDAS Fact Sheet

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

 

PANDAS FAQ

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

 

Amoxicillin Failure in Strep

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

 

NIMH Director's Blog

http://www.nimh.nih.gov/about/director/index-ocd.shtml

Edited August 22, 2010 by Vickie

[lmkmip67]

Unfortunately I found out the Dr. B mentioned here is over 3 hours away for me. I am not sure that is even possible to go that far.I know it would not be a one time thing and with owning a business, having other kids and a husband that works 12 hours a day, I couldn't do it. Surely there has to be a doctor closer to Boston that deals with this and has some success?

[Worried_Dad]

Dr. Dan Geller of "Saving Sammy" fame is at Mass General, I believe. But he's a psychiatrist, so I don't know that he'd be willing to prescribe abx, steroids, or order IVIG. He'd probably refer you to someone else for these types of treatments, I'm guessing?

 

 

Unfortunately I found out the Dr. B mentioned here is over 3 hours away for me. I am not sure that is even possible to go that far.I know it would not be a one time thing and with owning a business, having other kids and a husband that works 12 hours a day, I couldn't do it. Surely there has to be a doctor closer to Boston that deals with this and has some success?

[lmkmip67]

Hi and Welcome,

 

We are also in MA (North Shore). We considered a few docs in Boston, but eventually decided to go to Dr. Bouboulis in CT. We can have a discussion off line if you'd like about the reasoning (or anything else with PANDAS). You can send me an email if you are interested by clicking on my profile and choosing the "email" link.

 

Kara

 

Hi Kara,

 

Thank you. I did email you yesterday. let me know if you don't get it and I could just PM you, I guess.

[momaine]

I hope you are able to find someone locally to help you. Maybe all you will need is antibiotics and your family doctor can provide these and you'll be all set. But that is not what most of the parents on this forum have experienced.

 

BTW, Dr. Geller's private practice costs $2000 out of pocket to get through the door. They don't deal with insurance.

 

I am going to say something harsh and I'm sorry that it may hurt your feelings but if it saves your child from going through what mine went through, then I'm not sorry I've said it.

 

If your child was dying, would you drive 3 hours to see a doctor to save him? It seems so short sighted and selfish to say you cannot drive 3 hours to have your child correctly diagnosed by a professional who understands and offers more than one option to treat this horrible disorder that typically continues to worsen with time or exposure to strep.

 

Maybe I'm biased, but when my dd begged me to kill her every night and I knew that she truly would have been better off dead than continuing to live like she was, the six hour drive we made (and continue to make) was nothing. I'm sure you are not at that point yet, but for us it started out mildly and then worsened considerably until she was non-functional. (over 4 years which I wish I could get back)

 

My child has gone through ###### and my goal is to save some other family from the pain we've been through. I do know that Dr. Bouboulis is not the only one who can and has helped kids with PANDAS, but he's only 3 hours from you and that sounds like such a blessing to me.

[T_Mom]

 

One other question. I was reading on some general sites that they don't see antibiotics improving the tics and OCD, but is only used as a preventative. Yet so many on here seem to be on long term and do see improvement. I do understand this disorder or syndrome is not well studied yet.

 

 

Hi and welcome-- Yes, we are using antibiotics as a "treatment" to both eradicate any strep initially -(or other) issues and to affect inflammation as we understand it.

 

The benefits are DEFINITELY more than just "preventative", there is some type of active modulation by antibiotics.

 

OCD and tics in both of my daughters are diminished with antibiotic use--long term, full strength. That is a unique and distinct reaction which is (apparently) limited to children with this issue. It takes time for the inflammation (if severe) to diminish, but the change is obvious.

Edited August 23, 2010 by T.Mom