New diagnosis-PANDAS

[Wickedmaineah]

Hi, my name is Christina. I live with my husband and children in Maine.

Our only son was diagnosed with Austism at the age of 5. He has always had some OCD tendencies, which were related to the Autism.

 

This past December we got the shock of our lives. All the sudden our son developed a head tic. His head would constantly tic. This occurred at home, school, and the store and it didnt matter what he was doing at the time. The school was calling me all the time because it was so extreme. They counted 175 head tics in the short time of 1 hour and 45 minutes. They apologized to me as they were worried they might have missed a few. OMG! After repeated trips to the emergency room where he was brushed off stating that he was doing it out of choice, he was finally sent to a neurologist. He went through 2 days of monitoring for seizures and that was ruled out. The neurologist mentioned PANDAS, but then dismissed it stating that "Nah, that can't be it." She didnt want any follow up appointment as she said she didnt know what it was, probably just a tic.

 

Finally in May our son's doctor decided to rule out the PANDAS so that we could continue trying to figure it out. By then we were also looking for a chiropractor because his neck would hurt so bad day and night due to the tics. She ran the strep test and shocked us all that it was positive. After 10 days of antibiotics the tics completely disappeared. Also during the time of the tics our son was completely moody, sensitive, and easily frustrated. Everything has now disappeared. It is so wonderful for him to be able to go to a store and not having people stare at him constantly because his head is constantly moving.

 

My concern is today we saw his doctor again. I asked about next steps, treatments, etc. She said that we would need to wait until the next time it starts and then treat it with antibiotics again. Nothing we can do now because he has no symptoms. My concern is that I dont want those tics to start again. He suffered so much socially and physically.

Is there anything to do in the meantime to help him?

Is the only treatment most doctor's use is antiobiotics?

And does anyone know of a specialist in Maine that has experience with PANDAS. The doctor reported that she has never worked with a child with PANDAS,but has a collegue that has.

Thanks for any help anyone can give me........as a social worker I have got to say this is one diagnosis I have never worked with and have no knowledge about.

[tpotter]

Christina,

 

I'm so glad you found this forum, because you will get plenty of opinions, help, etc. from all of us.

 

First of all, thank your lucky stars that you found a dr. who was willing to look a little further, and accepted PANDAS as a dx. Also, that she was willing to tx with abx.

 

Personally, I would probably get an appointment with an immunologist at this point (check the list at the beginning of this forum...it lists drs.) Dr. B. is in CT, which is probably the closest one you are going to find who is seriously PANDAS literate. He will have you run a bunch of tests, primarily to rule out immune deficiency and some other things, as well.

 

You are right in saying that if it happened once, it more than likely will happen again, because this is an autoimmune reaction to strep and/or other infections (such as staph, lyme, etc.) It's not the strep that's making him react, but rather the antibodies in the brain that attack the brain rather than the strep (autoimmune reaction)(there's a study that was put out by Columbia University 2 years ago, where then found that strep antibodies were injected in the brains of mice, and tics and OCD were the result.)

 

After you have done the tests, you still might want to wait and see what happens.

 

Many people on this forum have used alternative treatment, others still only use abx (although in the long run, many have found that abx alone will not deal with the problems.) Others are at the point of using , anti-inflammatories, such as steroids (bursts or tapers) and ibuprofin, or immunomodulators, such as IVIG or plasmaexchange.

 

If this is starting to make your head spin, it is certainly a lot to digest, but you are lucky that there is so much more known about it now than when my kids got sick (one at least 7 years ago, and the other at least 12 years ago...but we didn't know about it then.)

 

In the end, your best friend is going to be spending a lot of time on the internet, reading like mad, corresponding with people like those on this forum, and trying to get to the bottom of everything that is going on, because this is not just one area of specialty, but rather at least 4 (neurology, immunology, psychiatry and infectious disease.)

[Ozimum]

Hi Christina,

 

Welcome to the forum...sorry you have to be here but glad you found us.

 

First, if you haven't already, do read the useful threads pinned at the top of the PANDAS board.

 

My ds 17 was diagnosed with Aspergers last year. He had a history of ear infections and got every cold that went around. Before last year he did not have enough to put him on the spectrum. Then he went PANDAS.

 

We went down the Biomed/DAN road. Our DAN dr prescribed antibiotics initially to deal with the strep and also with overgrowths of another strain of strep in the gut, as well as overgrowths of staph and clostridia (Leaky gut/dysbiosis found through testing). He also did testing to reveal some (unexpected!) vitamin and mineral deficiencies and food sensitivities which all had implications for the immune sytem and the central nervous system. Since then, DS has been on vit and mineral supplements, probiotics, and a gut healing diet, along with a very low dose SSRI (beware SSRIs as they can be activating for many on the spectrum). He has been so-o-o-o much better - he's healthy, better focussed, lots of eye contact, less anxious, less OCD etc, etc. He's been able to throw off colds quickly, without missing lots of school as previously. And he's not had an exacerbation since we started on Biomed treatment. (Yay!!!! I'm so hoping it stays that way!)

 

This has worked for us. Maybe we've just been lucky so far, but at the very least his health has improved markedly! (And his acne!)

 

Given your son is on the spectrum, you might also consider seeking out a Biomed/DAN (Defeat Autism Now!) doctor. I also recommend Dr Ken Bock's book "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking program for the 4-A Disorders" (He's a DAN dr.) He also discusses PANDAS. I've just read it and thought it made lots of sense, given what we're finding with our ds.

 

(Edit for typos !)

Edited June 8, 2011 by Ozimum

[kimballot]

Hello - and welcome to the forum.

 

I agree with tpotter that you are fortunate to have an understanding doctor and you are fortunate to discover PANDAS early on. There are some folks on the forum with children who had one or two exacerbations and have remained exacerbation-free for a long time. Our case is just the opposite - many years of unrecognized PANDAS with severe immune system damage over time.

 

I agree that an immunologist will help you to understand the infection and understand your child's immune system. You may also want to look for a DAN! doctor. DAN! doctors tend to be a bit better about supplements - and I think many of us are finding that keeping our children's guts healthy and inflammation low has helped to avoid exacerbations.

 

Keep reading - the internet (and especially this forum) has much to offer. Also, you might want to check out the presentations from the Autism One Conference a couple of weeks ago - I believe most (if not all) sessions were recorded, and there were a couple of sessions (Dr. Cunningham's in particular) that dealt with PANDAS. This thread has more information. http://www.latitudes.org/forums/index.php?showtopic=13797&st=0&p=113933&hl=autismone&fromsearch=1entry113933

[mdmom]

I have a doctor for you in Maine. I will send you a private message.

[problemsolver]

Hi Christina

I'm recently new here myself, son with autism diagnosis.

You wrote that the ocd was related to autism...it may be

actually related to the PANDAS.

There's a great video I saw by Susan Swedo

online. I didn't bookmark it and have been trying to find it.

If anyone else comes across it, please post the link to this group.

And, if anyone is sending pointers for the newly diagnosed to Christina,

would you please send them to me as well.

I'm trying to find the next step for my son re: testing,

follow-up, etc. and am running into brick walls.

Thanks

Dave

[momaine]

Hi from another Maine mom.

 

We see Dr. B in CT for my dd who has PANDAS. It's about a six hour drive for us from central Maine. A year or more after her PANDAS diganosis, we figured out she has Chronic Lyme Disease and I would VERY STRONGLY recommend you see a Lyme Literate MD to rule out Lyme Disease as a cause of all of your sons symptoms. Esp. before you ever do a steroid burst. My dd sees Dr. J for Lyme who is also in CT and who works with Dr. B. I also have a lyme diagnosis and I see a dr. in MA who I like very much and who is much closer. I'd be happy to send you more information if you want to write to me privately.

[Wickedmaineah]

Hi from another Maine mom.

 

We see Dr. B in CT for my dd who has PANDAS. It's about a six hour drive for us from central Maine. A year or more after her PANDAS diganosis, we figured out she has Chronic Lyme Disease and I would VERY STRONGLY recommend you see a Lyme Literate MD to rule out Lyme Disease as a cause of all of your sons symptoms. Esp. before you ever do a steroid burst. My dd sees Dr. J for Lyme who is also in CT and who works with Dr. B. I also have a lyme diagnosis and I see a dr. in MA who I like very much and who is much closer. I'd be happy to send you more information if you want to write to me privately.

 

 

We are also in Central Maine. I have really felt like we were the only one in the area that has ever dealt with this! It's nice to know my son is not the only one in the Bangor area. If I knew how to private message on this forum I would send you a message. LOL

 

Thanks for all the helpful advice everyone. I started journaling my son's history and realized there is a good chance that he has had this for over a year as he was showing the same signs last year except for the severe head tic.

 

We lasted a couple of weeks without any symptoms and this past Friday he has started a facial tic, throat clearing, and oh my extremely moody/obsessive and pacing. Looks like we might have to head back to the doctor on Monday. I have started making calls to find a doctor for him for the PANDAS.

 

I realize that this is going to be a long process, but I would like to get it atleast moving now.

 

Has anyone read the "Saving Sammy" book?

[momaine]

Hi from another Maine mom.

 

We see Dr. B in CT for my dd who has PANDAS. It's about a six hour drive for us from central Maine. A year or more after her PANDAS diganosis, we figured out she has Chronic Lyme Disease and I would VERY STRONGLY recommend you see a Lyme Literate MD to rule out Lyme Disease as a cause of all of your sons symptoms. Esp. before you ever do a steroid burst. My dd sees Dr. J for Lyme who is also in CT and who works with Dr. B. I also have a lyme diagnosis and I see a dr. in MA who I like very much and who is much closer. I'd be happy to send you more information if you want to write to me privately.

 

 

We are also in Central Maine. I have really felt like we were the only one in the area that has ever dealt with this! It's nice to know my son is not the only one in the Bangor area. If I knew how to private message on this forum I would send you a message. LOL

 

Thanks for all the helpful advice everyone. I started journaling my son's history and realized there is a good chance that he has had this for over a year as he was showing the same signs last year except for the severe head tic.

 

We lasted a couple of weeks without any symptoms and this past Friday he has started a facial tic, throat clearing, and oh my extremely moody/obsessive and pacing. Looks like we might have to head back to the doctor on Monday. I have started making calls to find a doctor for him for the PANDAS.

 

I realize that this is going to be a long process, but I would like to get it atleast moving now.

 

Has anyone read the "Saving Sammy" book?

If you click on someone's name, I think it brings you to a page with the option to send a private message. Yes, I've read Saving Sammy. It was that book that made me feel sure, at the time, that we were dealing with PANDAS because our stories were so much alike.(but it may have been PITANDS (lyme/bart) all along or at least began with Lyme/Bartonella and progressed to PANDAS- there is definitely an autoimmune aspect to it) Unfortunately for us, antibiotics weren't the miracle they were for Sammy. They helped for a time but then stopped helping. Likely because we were not treating the Lyme correctly. We do IVIG every 8 weeks and now she is on Lyme/Bartonella treatment as well. We're hoping this is the last piece of the puzzle. I'm less willing to state publically that we've figured it all out because its been a very long road and my perspective has changed a time or two already. Best of luck to you. It's not an easy road. Get him back on antibiotics as soon as you can and try to keep him on them as long as possible. (beg, steal, or borrow, if the help him)