New and Curious

[JoyBop]

Hello all. I am new to all of this. My 7 YO son was just diagnosed with PANDAS.Here's our story in a nutshell... He had mild social anxiety and obsessive thoughts but functioned very well and never needed any help of any kind. He was always a bit fidgety in class but never scored positive on the Vanderbuilt ADHD test. Somewhere in December he changed drastically to the point that we barely recognized him. He began having massive panic attacks, irrational fears (gum, diarrhea, vomit, feathers, and startling noises or movements) He started using baby talk at home, becoming highly irritable, angry, hostile and at times combative. He has to smell and chew on everything, particularly things that smell or taste bad. I could go on and on. Our PCP tried him on Prozac 10 mg. To say that it was a disaster would be an understatement. All of his behaviors became exascerbated and he was highly agitated. I was urged to hang on for 5 weeks to let the full dose settle in. At 5 weeks he became suicidal. Thats when the psychiatrist figured out he had PANDAS.

 

As we put the pieces of the puzzle together we remembered (reminded by our PCP) that our son had 5 days of high fevers during Christmas break, no sore throat or other symtoms. He tested positive for strep. and has never been the same since. However, these behaviors started a few weeks before the fever. We have no idea if he could have had strep all that time. As we suspected the diagnosis, we got his throat swabbed and sure enough, positive. He had been complaining of a mild sore throat every morning for months but never complained again. Come to think of it, I put cough drops in his Easter basket...We now realize that our 3 year old daughter had the same exact thing. Her symptoms resolved around the time our sons began. She took 5 days of Zithromax. At the time she was being treated by a psychiatrist, psychologist and occupational therapy. They were all shocked at her dramatic and sudden improvement. She has strep now as well and we are treating her for 2 weeks for starters.

 

Our son hass been on Keflex for 3 days now and we have seen considerable improvement. He has his ups and downs but I am starting to see the boy I once knew.

 

I am curious hass anyone has seen total resolution to behaviors after antibiotic treatment?

 

How long were your kiddos treated before you saw results? My child is not a candidate for long term antibiotics due to past GI complications and allergies to many antibiotics.

 

Did symptoms ever reoccur? Go away completely?

 

What types of doctors are helpful? Im finding many are inexperienced. Neurology was a waste, ENT is clueless. The Psychiatrist has been great but wondering if there is anything we are missing. Havent done blood work yet.

 

Any advice for an overwhelmed newbie?

 

Thank you in advance for any info you are willing to share.

 

Joy.

[pr40]

In general, there are only few pandas drs and they are listed in the pinned materials on this forum. They are our best resource.

Do do a blood test, immune panel is most important, coinfections like Lyme matter as well.

I never heard of a complete resolution of PANDAS after one short abx treatment. They might exit. Such cases, however, don't end up on the forum. there is not need. anti-inflamatories, IVIG, steroids, are an alternative to abx. but you'd be best served if you make an apt with one of the PANDAS drs at this point.

what usually happens with abx is that they provide temporary, and when taken over longer periods of time, gradual improvement.

I personally think that you should try to understand a bigger picture of how your kids immune systems work. obviously, there are issues in addition to PANDAS, like allergies you mention. More often then not, PANDAS is a part of a complex process that is not functioning well.

best of luck

[JoyBop]

Thanks for that reply. It is so great to be able to talk with people that are dealing with this. We are feeling so alone. For the record, my son has had some strange autoimmune things going on but he never had allergies. Yet certain foods he ate triggered certain responses that are not seen in allergic responses. We saw the chief of neurology at a pediatric hospital in Boston yesterday and he was fascinated with our kids immune system.

 

So is it safe to say that most PANDAS patients have other auto-immune issues? Please tell us what other health issue your PANDA child might have.

[rowingmom]

You will find that the diagnosis and treatment preferred by the PANDAS specialists mentioned on this forum are not accepted at some children's hospitals, in particular one hospital in Boston. This facebook page has a lot of information on the controversy:

 

https://www.facebook.com/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702

[airial95]

My 7 year old is what I would consider a mild case of PANDAS. Typically - all of her symptoms would resolve within 2 weeks of a 30 day course of antibiotics. We have not kept her on abx between infections and not longer than 30 days. She takes cefdinir because of a penicillin allergy.

 

My son - that's another story. But yes, it is possible to see good results with a short run of abx, but like pr40 said, most of those folks aren't around here. We're here because my son was dx first, and he is a pretty severe case (chronic, non-stop strep).

 

One thing to keep in mind, once a child has PANDAS, they will likely react EVERY TIME they get strep. Even if they completely recover between infections, like my daughter. Some kids, even if their first flare is strep triggered, will have a reaction anytime the immune system mounts a response to any bacterial or viral infection. My kids are strictly strep triggers, but it's something to watch out for.

 

Also, since they react with each multiple infection, symptoms can change, and worsen over time. My daughter had her first PANDAS flare in Spring 2011, but wasn't dx until September 2011 (the delay wasn't b/c of untreated infections - she was getting 30 days standard abx every time her brother got strep and she also tested +, even though she's asymptomatic to strep. It took 3 consecutive infections over the course of that summer to fully correlate her symptoms, which were milder than my sons, and the strep infections. Part of the problem was that she clears fairly quickly once abx is started, and compared to my son - her symptoms are milder so easily missed when also dealing with his flare). Since her initial onset, she has gotten strep 5-6 times, each time she has followed the same pattern - 30 days of abx and fine.

 

Until now. She tested positive for strep 3 weeks ago, her symptoms are not improving, they are actually worsening this time around so we are switching things up for the first time in 2 years.

[pr40]

joybop, by the way, we are near Boston, in Portsmouth, NH. we haven't had any luck finding drs in Boston and are now working with dr B in CT. As far as we know, he is the closest PANDAS specialist.

It seems logical that PANDAS kids have other autoimmune problems since PANDAS usually refers only to behavior and psychiatric symptoms like OCD, anxiety, and so on.

I wish there were a database of all symptoms PANDAS kids have.

Edited May 10, 2013 by pr40

[Missmom]

Welcome to this forum, you will find so much useful information here, and unending support. My son initially cleared with standard ten day abx. treatments, although the doctor we had at the time usually increased doseages a little. The problem is that strep is everywhere..... There is no way to keep your child from getting it again and again, and it seems that with each subsequent infection the pandas symptoms get worse and harder to clear. That is the reason some of us keep our children on prophylactic doses to minimize the chances of re-infection. So yes your son may initially clear with a regular dose of antibiotics, but you risk the chances that if/when he becomes infected again it may not be as easy. For me, ivig would be a last resort, but many here have had success with it. Depending on how you feel about it that may be an option.

 

I am so sorry you are having to deal with this, but know you are not alone.

[JoyBop]

Thanks to everyone for taking the time to post your experiences. We are on Day 6 of antibiotics and it does seem to be returning to the sweet boy we once new. Just when I think we are out of the woods he begins another panic attack or fit of rage but I must say that 80% of the time he is behaving like his old self. He still is hyper active and cant focus on school work and his handwriting is now worse than a 5 year old. But overall it is an enormous improvement. His ASO titres came back today at 545. All other bloodwork looks normal.

 

I have so many questions but dont want to make a millions different posts. If you are still with me, please tell me:

 

How long would you say is the best duration of initial antibiotics? We have 2 weeks of Keflex now. We are willing to try a month if needed but dont have a PANDAS specialist on our case. He is allergic to Amox and penic. and has a history of C-Diff so we dont want to try Augmentin.

 

When did you begin seeing a PANDAS specialist and why? What treatments did you try first?

[pr40]

Pandas specialists have extremely long waiting lists. dr B may have a 6 -9 month wait now.

so, get in line.

why see PANDAS specialist? well, for medication and treatment like IVIG.

In normal circumstances, duration of abx depends on how your kid reacts. Most on this forum went long term upwards of 6 months, some are on them for years.

c-diff changes everything -- you may want to post with c-diff in the title to get attention from those who have experience with it.

[Missmom]

Hi there, I just wanted to let you know that although my son has been on abx for over a year now, he has not had an issue with c diff....yet! I hope he doesn't. I however was not so lucky. I went in for a colon scope last December and was found to have it. I had to take flagyl to get rid of it and that was really awful... Anyway, i did lots and lots of research on which abx are most likely to cause c diff. What I have learned is that clindamycin is the most likely abx to contribute to c diff, with keflex as the second most likely. Of all of the antibiotics that treat strep, Zithromax is the least likely to contribute to c diff. It is much easier on your digestive tract for some reason.

 

I recently had a bad throat infection, and I took Zithromax and have not had any problems yet. I am not saying that your son will relapse with two weeks of keflex, but if you find that he needs longer term abx, then you might want to check into Zithromax. Also I am sure you are aware of this but probiotics are crucial. I will never again take antibiotics without them.

[JoyBop]

Thanks for those suggestions. My doc chose jerked bc he took Zithromax in December and it didn't get the job done. Augmenting gave him c diff in the past. Granted he has outgrown his GI issues but we are still being cautious.

 

Thanks for mentioning there is a long wait. I just email dr Ts office. My parents live down the street from his office so it would be easy. Does anyone know what the fees are for consults? My docs here would be happy to follow protocol locally. We wouldn't want to do anything invasive unless ifs is unbearable. So far seeing good results but not perfect.

 

Pr40 I did get the name of a nurse practitioner in hingham MA that specializes in PANDAS. that's all she deals with. Our psychiatrist recommended her as one of her other patients with the same disorder has found her to be very helpful. She works with the child's doctors and oversees the treatment. My doc wasnt thrilled about a nurse practitioner. I Belem e her last name is Chapman on derby st in Hingham if you want to look her up.

[JoyBop]

Sorry for the typo. Don't you love auto correct? I meant keeled not jerked.

[T_Mom]

\

Hi Joy--responses to your questions below--

We have been at this for 4 years.

 

I am curious hass anyone has seen total resolution to behaviors after antibiotic treatment?

The first time with one of my daughters the antibiotics were a life saver, coupled with steroid burst at the time! We have had times of total clearing with antibiotics only--but that has only been until they are exposed to strep or illness in others again, and then they flare.

 

How long were your kiddos treated before you saw results?

Our experience is that we have seen results within a few days.

 

Did symptoms ever reoccur? Go away completely?

In our case, two daughters who have each had about 3 episodes each in the last 4 years, controlled/treated with IVIG (both), pex (one), steroid burst (worked for one), and ongoing antibiotics continually.

 

What types of doctors are helpful? Im finding many are inexperienced. Neurology was a waste, ENT is clueless. The Psychiatrist has been great but wondering if there is anything we are missing. Havent done blood work yet.

You will need to seek out a PANDAS treating doctor, I would look at the suggestions on the various websites and try to see one of the doctors that has been treating and meeting with the NIH doctor experts--If you post where you are I am sure some of us can suggest doctors. There is also a thread at the top of this forum, which is called helpful threads, and in there is a parent generated list of docs we have seen and commented on. Forget playing around with a non Pandas doctor, they don't get it and will have no experience from which to help you.

 

Any advice for an overwhelmed newbie?

My own perspective: 1) Website resource that is most comprehensive: www.pandasnetwork.org 2) Read the book Saving Sammy for perspective, 3) Call a few of the parents on this board and chat--and above all else, get a PANDAS knowledgeable doctor treating your child asap. This IS treatable, and believe it or not, OCD and ticcing actually go away with antibiotics and/or immune modulating treatments, you just have to keep at it.

My best--

 

Thank you in advance for any info you are willing to share.

 

Joy.

[JoyBop]

T Mom thank you for that! This site has been a gift to me!

 

I out an email in to Dr T since my parents live right near his office. I am even closer to CT and I know there is another doc there.

 

Things have been going well but then just when I think we are out of the woods he has a few meltdowns and panic attacks.

 

To make things more complicated we found an embedded tick on him last night so we have to switch the le flex to ceftin.

 

Thanks again for the tremendous support.

[tpotter]

In general, there are only few pandas drs and they are listed in the pinned materials on this forum. They are our best resource.

Do do a blood test, immune panel is most important, coinfections like Lyme matter as well.

I never heard of a complete resolution of PANDAS after one short abx treatment. They might exit. Such cases, however, don't end up on the forum. there is not need. anti-inflamatories, IVIG, steroids, are an alternative to abx. but you'd be best served if you make an apt with one of the PANDAS drs at this point.

what usually happens with abx is that they provide temporary, and when taken over longer periods of time, gradual improvement.

I personally think that you should try to understand a bigger picture of how your kids immune systems work. obviously, there are issues in addition to PANDAS, like allergies you mention. More often then not, PANDAS is a part of a complex process that is not functioning well.

best of luck

I would also check for viruses, such as HHV-6, HSV, Parvo, Coxsackie, EBV. Even if only the IgG is high, that indicates that he has recently been exposed (and may also indicate that it is chronic...as the lab reports say, it does not indicate whether it is old or new), you should probably treat it. It can be treated with valtrex. Viruses never completely go away, and when the stress level is added to the person (such as more infections, actual stress, etc,) they can be activated. Also, check for mycoplasma pneumonia (an atypical walking pneumonia.) And, make certain that you check everyone in the family, because otherwise, you will just keep giving the infectious triggers back to him. I would suggest that you consult with an LLMD (Lyme Literate MD), because: 1) lyme testing has lots of false negatives, so they are able to help figure out by symptoms if there is lyme and/or co-infections, such as bartonella, babesia, etc. and 2) even if there isn't lyme et al, they tend to understand about all the other infectious triggers to treat for, and how to treat them. It frequently takes multiple abx simultaneously, because this is an autoimmune disorder, and as such it tends to be triggered by more than just one infection. There's more, but that is where I would start if I was starting all over again.