PANDAS

[Claire]

Hi Michael,

 

I think the best way to answer your questions is to provide research links.

 

http://www.neurotransmitter.net/pandas.html

 

The only way that I understood the antibiotics was:

 

1) if you hadn't gotten rid of the strep fully then it would cause ongoing problems, so it was worth taking a round to erradict the rest of the infection.

2) prophylactic use to prevent future strep. Every study I read on this was questionable at best. I know that Ronnas stopped this ongoing antibiotic treatment and is now doing the yeast and immune system building treatments that even the non-PANDAS families here are doing, and has had good success.

 

Michael, I spent time in trying to investigate PANDAS and the approaches there, but ended up with a DAN doctor for 2 reasons: 1) After calling the NIH and trying to get local names who not only knew what PANDAS was, but treated it, I failed. 2) I became convinced that the DAN protocols and treatments were appropriate for PANDAS also, and Heather's and Ronna's successes (though anecdotal) were further evidence of this.

 

My son has not been diagnosed with anything because his symptoms didn't linger (though I do understand how they change life for the whole family), so his case is much milder than most...but even so, he still had the same underlying issues (yeast and heavy metals).

 

I can only assume that you have read about vaccines/thimerosal/mercury and autism correlations? So heavy metals issues are a strong possibility for your child.

 

I will offer one other piece of unsolicited advice: For my son, TV/Computer/Video games set off not only tics but fears/compulsions. I would pay very close attention to see if you notice any worsening of symptoms during/following these activities. My nephew has OCD and his dad had noticed this also. In any case, if you have any indication that this may be the case, then I would see if you can eliminate any 'screen' viewing/play (including gameboys) for 7-10 days, to see if you notice improvement. We have theories on the board as to why this triggers neurological problems (e.g. the flicker, the rapid action, the repetitiveness of certain games), but in any case, the elimination of these completely eliminated both my son's tics and fears/compulsions. He can now do occassional LCD monitor viewing of TV or static computer games/programs, but we tested it gradually to see what he would tolerate. A number of people I know now notice the correlation with tics, and since both are impulse control issues (that important basil ganglia), I feel that OCD would be correlated. Unfortunately, I have no studies, only the anecdotal comments from other parents who have tried this with their child.

 

This 'solved' my son's problems, but would be an unlikely thing to control indefinitely, thus his DAN doctor is working to 'fix' his immune system. In the meantime, many many people have commented on artificial colors and certain foods causing reactions. If your son is like many of ours, his immune system doesn't detox well and it throws his entire system off. While PANDAS is all about the immune system, so much of the PANDAS focuses on the proteins, etc... and I believe there is more proven success in just bolstering the immune system in general.

 

Congrats on your DAN doctor appointment! Please keep us posted!

 

Claire

[Claire]

Michael,

 

I forgot to add that the DAN approach and testing is FAR less invasive than some of the experimental PANDAS treatments such as the IV. My son only had 2 sets of blood tests, the others were urine and stool.

 

Claire

[Guest Chris]

Brief History: Autistic son, age 9, Diagnosed at 2 yrs., PDD-NOS / autism, partially verbal, resides with family and 2 siblings, history of OCD traits with marked increase over the last 3 years, particularly during the winter months, reaching unprecedented levels this winter.

 

We would like to discuss the possibility that PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) is gravely affecting our autistic son. We also need to find doctor, complete other tests and get experienced consult regarding treatment.

 

He has had at least 7 documented positive STREP tests over the last 5 years, and over the last 3 years or beyond we can document intense exacerbation of OCD behavior, mood swings, behavior deterioration, rituals, routines, repetition, peculiar visual and eye movements, heightened anxiety levels and compulsions especially during the December - April timeframe of each year. Each year it has gotten worse, although it seems to go into some degree of remission in late Spring early Summer. This year (2004) it has reached unprecedented levels over the last few months (December - present) creating a very sad and difficult situation for our son, his family and his therapists. We like to think of ourselves as strong advocates, informed parents, and autism veterans - but we have never seen anything like this before in terms of OCD, anxiety, aberrant behavior, and resulting tantrums -he is literally owned by his compulsions and fixations and rituals that now embody every aspect of his life, he has developed constant tic-like eye stims or movements, and if he is diverted from his fixations or routines his breakdowns are extraordinary in terms of volatility, intensity, and self injurious behavior. He is complaining of intermittent head , eye and stomach pain, and he also does not seem healthy.

 

With that said, we visited our pediatrician to perform a battery of blood and stool tests, just to see if we could determine some physiological basis for this new condition that has been seemingly superimposed over his autism without knowing anything about PANDAS. The interesting test that came back was a 470+ level for ASO titer and we are awaiting the results of the AntiDNAse-B titer (but expect it to be elevated as well). When those results were furnished, our pediatricians mentioned the PANDAS condition in passing, but were not very knowledgeable.

 

I researched it thoroughly , and found various PANDAS websites, read about the documented research, and also discovered Dr. Hollander's abstract on "B Lymphocyte Antigen D8/17 and Repetitive Behaviors in Autism, from the American Journal of Psychiatry , Feb. 1999, that clearly indicated a propensity or susceptibility for PANDAS in Autistic children. Therefore, I surmised that someone on this listpost may have a unique understanding of this condition, how it could interplay with autism , what other tests we need to perform to definitively determine diagnosis (MRI, blood, m-proteins, etc.) , and could consult with us regarding the documented preferred treatment options of Plasma Transfer or IV-IG , and possibly recommend where we could find a physician in the Philadelphia area that specializes in this condition.

 

So far, we can't seem to find anyone in Philadelphia that understands PANDAS let alone PANDAS with an autism background. However, our dilemma is time. We are in a full-blown crises mode, with our son suffering and his family struggling quite a bit.

 

Many thanks for reading this email and considering our request.

Dr. Tamar Chansky is a pediatric psychiatrist in Plymouth Meeting PA, who is very knowledgeable on the PANDAs diagnosis.  She has written many books as well.  We

with Chestnut Hil Pediatrics.

[Guest levin005@mc.duke.edu]

Hello, everyone. My 8-year-old daughter began with OCD symptoms after an undiagnosed strep infection two years ago. She also had frequent urination (as another parent had mentioned), severe separation anxiety, mood swings, fear of germs, etc. I work at Duke Medical Center and found several sympathetic docs, yet PANDAS research is so new that they weren't prepared to offer much. After reading the NIH study on PANDAS, I approached an extremely progressive doctor here who administers IVIG for kids with cancer and immune deficiencies. She agreed to give my daughter IVIG -- and insurance is paying for it. She had her first treatment a week ago, and unfortunately, her symptoms have worsened in the past week. We are due for another treatment in a month, but we're considering cancelling it. My husband is dead set against all this because it's experimental, but I am determined to find my daughter relief. Has anyone else had luck with IVIG or plasma exchange?

[Guest Tracey]

My son has been diagnosed with PANDAS within the last month. He is 7 years old and had his first strep infection that we know of about a year ago. At that time he started exhibiting mild OCD symptoms but we did not recognize them as such. He also started having the urge to urinate frequently. For this we took him to three different doctors but could find no answers. He has also had chronic ear infections, throat infections, yeast infections, fungal infections. The ENT even isolated e-coli in his throat. He had his tonsils and adenoids removed in January and tubes put in both ears. This was the 2nd time for his adenoids to be removed. On March 15, he had a sudden and very severe onset of OCD. The OCD was totally paralyzing and debilitating. After taking him to 4 doctors in 3 days, we finally figured out for ourselves what was going on with him and we ended up at the University of Florida where they are doing research on PANDAS. My son is now taking Abilify for the OCD, but is still having symptoms, whcih we hope will fade away soon. He continues to have severe throat pain and ear problems. We have been encouraged by friends to have him treated by a Chiropractor. My question is: has anyone reading this ever been successfully treated for sinus and upper respiratory infections by a Chiropractor? Also, our Psychiatrist said that children with PANDAS often exhibit a severe and sudden onset of OCD about 6 weeks after a tonsilectomy. Has anyone else experienced this to be true? One more question: are there any other forums for PANDAS/OCD that you guys know of? I found the Yahoo group for PANDAS but it seems to inactive. I also found the OCD and Parenting Yahoo group but wanted something more specific to PANDAS.

 

Thanks, Tracey

[Claire]

Dear Tracy and Levin,

 

I encourage you to read the threads on the Tourettes and tics board on Latitudes here. Many also had OCD symptoms and a number were Dx'd with PANDAS. It seems that the non-pharmaceutical approaches we have found may be helpful for some with PANDAS, based on the early feedback.

 

Of course we have no formal studies on this, but it is great research to consider. I suggest that you read through the threads there (not just the ones on PANDAS) and ask questions as they arise.

 

http://www.latitudes.org/forums/index.php?showforum=1

 

Claire

[Audrey]

My six year old daughter flaps her hands, can't stand the feel of panties on, she is very sensitive to any critism, shows signs of ocd, does't want to use tootpaste more recently, very picky eater, doesn't like to pick up apple or fruit because it is slimy, goey, messy, has to have them on toothpicks, mood swings up and down, craves attention and touch, doesn't seem to understand directions or hear what we tell her half the time, has a hard time with change. Behind in gross motors skills and some fine motor skills. Addicted to watching tv we battle about it every day. She was repeating kindegarten but we moved and I pulled her out and am homeschooling. Waiting to get on with local charter school that helps homeschooling parents. First psyh. suggested apsphegers with slight ADD. Second was a behavioral pediatrician that suggested said PDD-NOS. When I asked her regualr pediatrician long ago about underwear problem he suggested Dysfunction of Sensory integration. Then I took her to MIND INSTITUE in Sacramnto (deals with austim) they ruled any kind of autism out. Except suggested ocupational therapy for some sensory issues. This has been a long six yrs and very frustrating alot of which I took out on her. But keep trying to find and answer. An occupational therapist just showed me last night how to do the brushing on her. I pray it will be a start. I have bought many a supplement even mixed with food, shakes, juice, always throws a fit about taste. I love my children more than anything but I it is very difficult. Most of the time I've little support from husband outsiders etc. My husband doesn't take the time to look into things that might help her, just basically leaves it to me to worry about. Tells me he doesn't understand it. Don't get me wrong he loves both our son and daughter, my daughter is from another marriage. But maybe that is just his way of dealing with it. Sorry just needed to vent and this seems like a nice place to do it. Any advice we be appreciated.

[Guest MA]

My son has been diagnosed with PANDAS within the last month. He is 7 years old and had his first strep infection that we know of about a year ago. At that time he started exhibiting mild OCD symptoms but we did not recognize them as such. He also started having the urge to urinate frequently. For this we took him to three different doctors but could find no answers. He has also had chronic ear infections, throat infections, yeast infections, fungal infections. The ENT even isolated e-coli in his throat. He had his tonsils and adenoids removed in January and tubes put in both ears. This was the 2nd time for his adenoids to be removed. On March 15, he had a sudden and very severe onset of OCD. The OCD was totally paralyzing and debilitating. After taking him to 4 doctors in 3 days, we finally figured out for ourselves what was going on with him and we ended up at the University of Florida where they are doing research on PANDAS. My son is now taking Abilify for the OCD, but is still having symptoms, whcih we hope will fade away soon. He continues to have severe throat pain and ear problems. We have been encouraged by friends to have him treated by a Chiropractor. My question is: has anyone reading this ever been successfully treated for sinus and upper respiratory infections by a Chiropractor? Also, our Psychiatrist said that children with PANDAS often exhibit a severe and sudden onset of OCD about 6 weeks after a tonsilectomy. Has anyone else experienced this to be true? One more question: are there any other forums for PANDAS/OCD that you guys know of? I found the Yahoo group for PANDAS but it seems to inactive. I also found the OCD and Parenting Yahoo group but wanted something more specific to PANDAS.

 

Thanks, Tracey

My son also was diagnosed with PANDAS almost 3 years ago. He was in a study at NIH. There is a wonderful child psychiatrist in Washington, DC that treats children with this disorder. I encourage you to contact her or NIH. Dr Marilynn Benoit can be found on the internet. She changed our lives. Your child can get better!

[Guest Kathy F.]

Hi, My 10 year old son just got diagnosed with PANDAS. We only found out because he started with a movement tic in September. The neurologist sent him for blood work which showed his Strep was over 1300. First they thought it was Rheumatic Fever. After having his heart tested they came up with PANDAS. Now he is on a 5 year course of pennicillin to prevent heart disease. I am lucky out Dr. knew what to look for. They say he had undiagnosed strep.

[Guest Alyssa]

Hi, my name is Alyssa and I am 16 years old with PANDAS. I was diagnosed in the 4rth grade, but now I am well or at least well enough to live a noraml life. I don't know how hard it is to be the parent in this situation but I definately know how difficult it is to be the child. When I was diagnosed nobody had even heard of the illness. After reading these entries I feel extreme sadness to all the parents who are suffering with thier sick children. Usually, it is very hard to find good Doctors or information. I know I was dragged to at least 100 who knew absolutely nothing. However, there is hope. I am well, and there is hope for your children to be well also. I underwent many treatments in New York Hospital and had some of the best doctors in New York. I was put on Penicillian, but a better drug is amoxicillian. (or at least it was for me)

 

The doctors I had were amazing and I am indebted to them for life because they got me to where i am today.Their names were Rosarrio Triffiliti, and Karen Onel. Dr. Rosarrio Triffiliti is now currently located at the Universtiy Hospital In Newark New Jersey. Dr. Karen Onel is located in the Hospital for Special Surgery in New York. The phone number for her is 1-212-606-1302.

 

The treatments I had were as follows

5 week course of the steriod Prednisone (to help with Tics)

IVIG (targeted to help Ocd)

Pulse Cordtisteriods ( This treatment work the best on me and is one of the main reasons I feel I am well today)

 

I also take vitamens daily which help more than you could ever comprehend. Especially flax seed oil. It is a miracle for me. i take a table spoon daily. I can see a dramatic difference from taking it to not taking it. I recomend for you child. It tastes horrible but make them take it. It will help. You have to give it time too. I also am on Cultural which is a Probiotoc to replace the good bacteria that the Penicilian (or amoxicillian) has killed while also killing the strept. I also take Vitamen E and CO Enzyme Q10.

 

I know these treatments sound drastic, and they are very expensive, but for me, they worked wonders. Three years ago, I didn't think I'd be well enough to do anything but now I am. IM in honors courses in school and getting As, and im also on varsity track. If you don't want to take the following advice that is fine, but I just wanted to try to help.

[Guest becky]

Hi, Alyssa. Thanks for sharing your story. My 3rd grader has PANDAS, and she has responsed to both penicillin and flax oil. We have started her on IVIG. My husband is concerned about the risks and side effects of IVIG. My daughter has had one treatment, without any side effects, but we aren't sure if it is working. How far apart did you have your IVIG treatments and how many did you have? Also, can you please describe the drug that you said helped the most? It sounded like some kind of steriod. I would appreciate any feedback you can give to us. My daughter has OCD symptoms, mood swings, irritibility, outbursts of anger, and hyperactivity. I had previously written about her under my email address, which is levin005@mc.duke.edu. Thanks!

[tictoc]

Thanks to everybody for contributing to this thread. It has been very helpful to me, a newbieginner to find out alot and get going! I sent in an email to the ACN 'contact us' and won't repeat the whole thing here now but to say that I have an ADD Dx but have had ongoing (waxing'n'waning, as they say) tics that flared up recently after some stressful periods and several airplane trips where I caught that yukky airline 'air conditioning' syndrome (turns out, so did my sister), which flared up my latent strep condition, along with tics, and have gotten onto the "co-morbid" ADD --> TS/tics --> PANDAS/GABHS trail to here at this point . I feel similar to when I was faced with "accepting" that I had /have ADD in that I feel like I match up pretty much with PANDAS/ADD but how do you get "sure"? That actually makes a significant difference in that ADD is thought to be heritable while PANDAS is not. Hmm... So, I really have to think about this one for awhile; ask my pdoc; and, as Johnny #5 used to say, get MORE INPUT! Meantime, time out for a tic! Thanks again, and best wishes to everybody.

[Guest Vikki]

Hi, my name is Alyssa and I am 16 years old with PANDAS. I was diagnosed in the 4rth grade, but now I am well or at least well enough to live a noraml life. I don't know how hard it is to be the parent in this situation but I definately know how difficult it is to be the child. When I was diagnosed nobody had even heard of the illness. After reading these entries I feel extreme sadness to all the parents who are suffering with thier sick children. Usually, it is very hard to find good Doctors or information. I know I was dragged to at least 100 who knew absolutely nothing. However, there is hope. I am well, and there is hope for your children to be well also. I underwent many treatments in New York Hospital and had some of the best doctors in New York. I was put on Penicillian, but a better drug is amoxicillian. (or at least it was for me)

 

The doctors I had were amazing and I am indebted to them for life because they got me to where i am today.Their names were Rosarrio Triffiliti, and Karen Onel. Dr. Rosarrio Triffiliti is now currently located at the Universtiy Hospital In Newark New Jersey. Dr. Karen Onel is located in the Hospital for Special Surgery in New York. The phone number for her is 1-212-606-1302.

 

The treatments I had were as follows

5 week course of the steriod Prednisone (to help with Tics)

IVIG (targeted to help Ocd)

Pulse Cordtisteriods ( This treatment work the best on me and is one of the main reasons I feel I am well today)

 

I also take vitamens daily which help more than you could ever comprehend. Especially flax seed oil. It is a miracle for me. i take a table spoon daily. I can see a dramatic difference from taking it to not taking it. I recomend for you child. It tastes horrible but make them take it. It will help. You have to give it time too. I also am on Cultural which is a Probiotoc to replace the good bacteria that the Penicilian (or amoxicillian) has killed while also killing the strept. I also take Vitamen E and CO Enzyme Q10.

 

I know these treatments sound drastic, and they are very expensive, but for me, they worked wonders. Three years ago, I didn't think I'd be well enough to do anything but now I am. IM in honors courses in school and getting As, and im also on varsity track. If you don't want to take the following advice that is fine, but I just wanted to try to help.

Hi Alyssa myname is Vikki I have a son who is 10 years old who was diagnosed with ocd at 7 and half. We had not heard of PANDAS at the time and when I found out I told my childs doctor who tested him and said his levels were very low and any medication would probably not be beneficial, however after reading all the posts on this site I now wonder. He does lots of ocd things and has mood swings, violent outbursts, super sensitive, talks non stop to the point of asking him to take a break lol He has been on a medication called Lovan which is for ocd, depression, anxiety and this combined with behavioural therapy have helped him enourmously, he is nearly 11 years old now and is still on 2.5 mls per day of this medicine, I would love to take him off it but whenever we try his symptons come back with a vengeance!!!! If anybody has information that may help us with PANDAS if he may have it etc we would appreciate it greatly. Our son also had an operation when he was 7 years old and afterwards he got a staff/strep infection for which he had medication could this have caused it to flare up into full blown ocd??? We are happy with his progress but would like more information about it. We live in australia and do not know much about PANDAS over here.

 

thanks vikki

[Guest Guest]

medication called Lovan which is for ocd, depression, anxiety and this combined with behavioural therapy have helped him enourmously, he is nearly 11 years old now and is still on 2.5 mls per day of this medicine, I would love to take him off it but whenever we try his symptons come back with a vengeance!!!! 

thanks vikki

Hi Vikki,

 

I read your and Alyssa's post with interest, since I have been researching PANDAS and going thru my and my son's experiences when we were young, especilly me because there were no 'cillins available then in my locale.

 

We are definitely amoxycillin supporters. But I got a warning flag in my mind when I read about your son on Lovan, which it seems is an SSRI, which are usually not recommended for children and have known weaning effects. I am not familiar with the mg-liter relationship for your son's dose, but given that he's a "children" and in growth, I wonder about the appropriateness of the med as well as the dose level, and I also wonder if the 'vengeance' is perhaps driven by to some if not a major extent by weaning side-effects. Here's an example weaning warning:

 

http://neuro-www.mgh.harvard.edu/forum_2/P...I.Planning.html

"There is no better way to sabotage a patient and prepare them for their emergency admission to a hospital emergency room then to jerk them suddenly off of these medications (prozac, zoloft, paxil, wellbutrin, serzone, etc.). I have seen some of the physicians for my patients do this so I try and help to implement a more rational form of reduction or elimination. This has even included telling them, if necessary, to go back on the SSRI or even increase it back to former levels, if the plan of withdrawal or reduction hasn't been done properly. If the plan is done properly (slowly with replacements/substitutions made), reduction or elimination may be likely and possible for most patients."

 

Has your son's doctor discussed this kind of effect with you? I hope that someone might comment here to help clarify if this might be a significant problem or not.

[Guest vikki]

medication called Lovan which is for ocd, depression, anxiety and this combined with behavioural therapy have helped him enourmously, he is nearly 11 years old now and is still on 2.5 mls per day of this medicine, I would love to take him off it but whenever we try his symptons come back with a vengeance!!!! 

thanks vikki

Hi Vikki,

 

I read your and Alyssa's post with interest, since I have been researching PANDAS and going thru my and my son's experiences when we were young, especilly me because there were no 'cillins available then in my locale.

 

We are definitely amoxycillin supporters. But I got a warning flag in my mind when I read about your son on Lovan, which it seems is an SSRI, which are usually not recommended for children and have known weaning effects. I am not familiar with the mg-liter relationship for your son's dose, but given that he's a "children" and in growth, I wonder about the appropriateness of the med as well as the dose level, and I also wonder if the 'vengeance' is perhaps driven by to some if not a major extent by weaning side-effects. Here's an example weaning warning:

 

http://neuro-www.mgh.harvard.edu/forum_2/P...I.Planning.html

"There is no better way to sabotage a patient and prepare them for their emergency admission to a hospital emergency room then to jerk them suddenly off of these medications (prozac, zoloft, paxil, wellbutrin, serzone, etc.). I have seen some of the physicians for my patients do this so I try and help to implement a more rational form of reduction or elimination. This has even included telling them, if necessary, to go back on the SSRI or even increase it back to former levels, if the plan of withdrawal or reduction hasn't been done properly. If the plan is done properly (slowly with replacements/substitutions made), reduction or elimination may be likely and possible for most patients."

 

Has your son's doctor discussed this kind of effect with you? I hope that someone might comment here to help clarify if this might be a significant problem or not.

In response to the weaning warning! We were going to begin weaning him off it, but we had an unfortunate incident that distrubed him emotionally and really threw his progress and his ocd symptoms returned quite badly and we actually had to up his does to 3ml per day instead. He has begun to level out again but the handwashing is pretty bad at the moment, his hands are very dry and beginning to crack. I myself were on lovan a few years ago (tablet form) and after 9 months on them I weaned off them over a period of 3 months very gradually with no side effects at all. If we do wean him off it will be the same very gradual I am aware of the dangers of taking people off this type of medication abruptly. There are quite a few suicides related to people stopping their medication, they plummet into depression. I thank you for your concern with regard to this matter.

 

thanks again vikki