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Dedee

In Tears, Doctor refuses antibiotics for sons PANDAS

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When I took my son to the neurologist at Cleveland Clinic he felt his symtoms were more viral related then strictly strep. He said there is no medicine or tests to give him since his symptoms/behaviors come on after viral infections and fevers. The symptoms have gone away before after a month or so. This time he was sick the week before xmas with flu and fever. Then he started repetitive bending of his fingers, touching his cheeks by pressing his fingers down, frequen urination and emotional and hyperness. Now he is left bending his fingers all the time and seeming anxious. Dr felt it may go away with age as he is four. How is pitands treated or diagnosed? Dr. felt meds would not help viral induced ocd. Any idea? How rare is all this?

 

Michele

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Michele

 

I really think you should begin investigating PITANDS and if your doc doesnt know anything about it...try to find one who does!

 

where PANDAS is strep induced, PITANDS can be triggered by a number of viruses, bacteria, and other infectious microbial agents, and yes, there are ways to deal with it

 

I have heard good reports on using MONOLAURIN, a natural antimicrobial made from coconuts (made by Ecological Systems)

It is available from http://www.vitaminshoppe.com

 

There are also conventional meds that can help, but I always suggest trying natural means first, unless the situation is critical and needs a drastic intervention

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I guess that was the Dr point he is young and may outgrow this. He has only had a couple episodes a year that last a couple of months. He didn't think medicine in the form of antibiotics would be the route to go. Plus he said once the syptoms come out and you start meds it can take a month for the meds to kick in. By then he is usually better. I will research the natural route. Dr. said he may outgrow this if his immunity improves with age.

He also mentioned there are cases when it just stays and doesn't go away. He mainly deals with ocd and tourettes. He seemed knowledgeable and listened well. Are there studies out there for pitands?

Thanks for the info.

Michele

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dedee, I am so sorry to hear of the difficulties you are having. I suspect the reason why your doctors are "resistant" to a PANDAS dx is b/c your son has had OCD since the age of 5. Typically, PANDAS is a sudden onset of neuropsychiatric symptoms. Either way if the antibiotics are helping it is worth pursuing it with the doctors and advocating for him. It is difficult, in the early stages I thought I would go crazy telling the doctors that the antibiotics were making a difference. Hang in there.

 

Michelle, I would get another opinion. Seriously, early treatment, the younger the better and I think the better the outcome...IMHO...the theory he will "outgrow" complications from strep is not accurate and your son is very young and he will be exposed to strep often as he gets into school. You may want to look at this...

 

Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS).Murphy ML, Pichichero ME.

Elmwood Pediatric Group, University of Rochester Medical Center, 601 Elmwood Ave, Box 672, Rochester, NY 14642, USA.

 

BACKGROUND: The current diagnostic criteria for pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS) are pediatric onset, neuropsychiatric disorder (obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt onset and/or episodic course of symptoms; association with group A beta-hemolytic streptococcal (GABHS) infection; and association with neurological abnormalities (motoric hyperactivity or adventitious movements, including choreiform movements or tics). OBJECTIVE: To assess new-onset PANDAS cases in relation to acute GABHS tonsillopharyngitis. DESIGN: Prospective PANDAS case identification and follow-up. RESULTS: Over a 3-year period (1998-2000), we identified 12 school-aged children with new-onset PANDAS. Each patient had the abrupt appearance of severe OCD behaviors, accompanied by mild symptoms and signs of acute GABHS tonsillopharyngitis. Throat swabs tested positive for GABHS by rapid antigen detection and/or were culture positive. The GABHS serologic tests, when performed (n = 3), showed very high antideoxyribonuclease antibody titers. Mean age at presentation was 7 years (age range, 5-11 years). In children treated with antibiotics effective in eradicating GABHS infection at the sentinel episode, OCD symptoms promptly disappeared. Follow-up throat cultures negative for GABHS were obtained prospectively after the first PANDAS episode. Recurrence of OCD symptoms was seen in 6 patients; each recurrence was associated with evidence of acute GABHS infection and responded to antibiotic therapy, supporting the premise that these patients were not GABHS carriers. The OCD behaviors exhibited included hand washing and preoccupation with germs, but daytime urinary urgency and frequency without dysuria, fever, or incontinence were the most notable symptoms in our series (58% of patients). Symptoms disappeared at night, and urinalysis and urine cultures were negative. CONCLUSION: To our knowledge, this is the first prospective study to confirm that PANDAS is associated with acute GABHS tonsillopharyngitis and responds to appropriate antibiotic therapy at the sentinel episode.

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Hello everyone! Thank you all for your input! Your wealth of information is invaluable. I wish I had known more about PANDAS years ago. Ronna, my son did have an abrupt onset of OCD at age 5 that was associated with Strept. However my pediatrician at that time did not mention PANDAS, and only said that this would go away with time. He exacerbated at age 7 with another strept infection. Again no one mentioned PANDAS and I had no idea that there were other illnesses that strept could bring on. It wasn't until this year that he had 4 strept infections over 4 months that resulted in anxiety disorder and TS, that I did my own research and found out about PANDAS. Since then it has been one doctors visit after another and the most information I have found out has been through wonderful people like you who are willing to share your experience and wealth of knowledge. Each time he has strept, he literally has an overnight change of some kind. My child absolutely changes before my eyes. We had his tonsils and adnoids taken out after the tics started in november. That is when we made the correlation between the antibiotics and the tics. After stopping his post-op course of antiobiotics his tics came back full force. I talked his ped. into trying some for just a few weeks to see what happended and again, they stopped all together. However, the infectious disease specialist would have nothing to do with long term therapy, and would not recommend this to my pediatrician even though they believed he is a PANDAS patient. ;)

 

Alison, thanks for asking about my appointment Friday. My pediatrician wanted us to take him off the antibiotics for a few days, (we were out anyway), just to document what happens when he is off of them. In the mean time, she said she would try to get in touch with Dr. Murphy at Shands Clinic, and tell her of my sons history. Maybe she can get a recommendation by phone from Dr. Murphy. Well, at about 36 hours off of the antibiotics his tics started in clusters. He has "bursts" of about 5 minutes where he can't control them, then it stops for several hours. We will see where things go from here.

 

As a mother, and being so new to this, I wonder if I should start some supplements that I have read about at this point to try to calm down what he is going through, or should I watch and document. My pediatrician did give me another month of antibiotics that I could start back until we hear something back from this doctor or until I can find a specialist on my own to take him to. She just doesn't seem really comfortable writing the prescription long term without the ok from someone who knows more about it giving the thumbs up.

 

So, I am open to suggesions. I have heard that I should really treat the PANDAS as he is 11 yrs old and so close to puberty. Does that mean use antibiotics to stop the tics (it obviously works for him), instead of spending alot of time trying to find out if supplements will help? I really only want to do the right thing for my son. I think there is no doubt in anyones mind regarding the PANDAS diagnosis. Some physicians are concerned about resistance in long term antibiotic therapy. I am not so concerned about that as I am about the results of PANDAS on my sons basal ganglia if left untreated through puberty. I don't mean to open a can of worms, I am just at an impass. Any and all opinions welcome.....

 

Dedee

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Hi Dedee,

 

Since you are asking for opinions I would get back on the antibiotics right away - it is clear from your sons' history that you already have a clear pattern. We ultimately went on a prophylactic dose - when on amox. it was once a day - on azithromycin it is once every 5 days. The immune system is key - in my opinion, so adding supplements to boost the immune system is a good idea - we also did food allergy testing and found our son was allergic to foods he ate daily - when we removed them tics decreased - I had thought food allergies only caused hives, stomach upset etc - I was shocked when he got so much better when we went off dairy - I was not into naturopathic medicine prior to this experience - but after just antibiotics did not seem to be doing the trick as he was suffering from PITANDS too - I decided to look outside the box and I am glad we did. With a stronger immune system he started to get sick less, so less tic increases.

Sounds like you have a good ped - who is at least willing to try the antibiotics and listen to you - I would get in touch with the PANDAS clinic ASAP - for further advise.

What antibiotic is your son on?

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Thanks Alison, he is on Amoxil. I have heard I should start Magnisium and Probiotics. Also, he is such a huge milk drinker and so many of you all speak of your children doing much better off of dairy. I wonder if this is something I should consider as well. He may start a mutiny if I try to take his milk away. ;)

 

Chemar and Ronna, thank you both for all of the info you have provided thus far. The links to articles and everything else have been so helpful. You all are such a blessing and answer to my prayers.

 

Dedee

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When we removed milk we saw a SIGNIFICANT improvement within days - I think it takes about 3 days to get out of your system. If you do remove dairy my advise is not to replace the dairy with soy as 30% of people allergic to dairy are also allergic to soy - if your son is sensitive to dairy and you replace with soy which he may also be sensitive to them you would assume the dairy was not an issue as you would not see an improvment - this is part of the reason we decided to do the ELISA blood work for food sensitivities - I know Ronna did an elimination diet with success, but I have picky eaters in my house and needed an answer - I did not want to do the elimination diet - Although I did initially go off dairy before doing the blood work - and then back on it - as I had initially thought the improvement we were seeing was due to supplements as we had started those at the same time as going off diary - so when we added back dairy and saw symptoms right away we decided to go ahead with the testing.

We did not think there was any way my son would be willing - he was a huge milk drinker - we tried different milks - goats and almond - and just looked for alternatives - I see nothing wrong with a bribe too - when we removed tv we gave him money for each day he did not watch tv - I think it was 2$ a day - he was only 6 so at the end of the two weeks he got a new toy. At 11 you will probably have to up it to something more desirable than 2$ - but from our experience the changes we saw when removing food were almost immediate. Almond milk is quite good and comes in chocolate - goats milk is more of an acquired taste although my kids like it - I could never get into it nor could my husband - I do bake with it and things taste fine.

 

Amox was good for us early on - but now that he is on azith I realize how much better he is actually doing - if amox is working for you that's great - but keep in mind in the future azith seems to do wonders for PANDAS kids - we had gone off amox this past summer and when he deteriorated and we went back on amox he did not get better.

 

Absolutely do the probiotics - I wish I had done this from the start - people here told me to but I thought it was too "alternative" I have come a long way. Take them atleast 2 hours after the antibiotics. Yeast can be a big problem for kids on antibiotics, which then causes leaky gut, then the food sensitivities get worse. We religiously do probiotics, my son now often refuses vitamins so we stop for several months - the only one's that are non negotiable are the multi and the probiotic. Since he has been a little off the last few weeks we added some vitamins back in and he was ok with that. He is doing well again - 99% symptom free after the viral illness.

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Thanks Alison for your advice, sounds like a good plan. We did start the antibiotics back last night. My son was really down because he could not control what he described as fierce "episodes" of head jerking. Although they only last about 5 to 7 minutes, then will completely go away for several hours. I am sure that this will only get worse the longer he remains off the antibiotics. I believe we will leave him on twice a day for a two week course, then when we add in the Calcium / Magnisum supplement, I am going to see if I can back him off to once a day on the antibiotics.

 

We sill haven't heard anything from the ped, as to if she spoke to another doctor. I am just trying to keep the faith and know that if I have to, I will go there or where ever I have to myself.

 

Thanks - Dedee

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Thank you for your input. How long do these tic episodes typically last after a virus/strep? What is the best type of Dr. to see? Neuorology, infectious disease, rheumotology? How many Dr. are aware of this diagnosis? Does anyone on this site hace experience with Pitands? Anyone try MonoLaurin? Has anyone known of children who outgrow these symptoms?

Michele

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Hi Michele,

 

For my son - we find when he is sick tics last a couple of weeks - things start to increase, peak then decrease- he is now doing really well so no one really notices. This x-mas tics started to increase when we all had viral illnesses - we decided to increase his antibiotics after a few weeks of them slowly increasing, usually they decrease on their own. When I mentioned to my parents that we increased the antibiotics they were surprised as they felt he was perfect over the holidays. So that is how much better he is doing in general. In terms of doctors - the best kind is one who has heard of PANDAS and accepts it as a diagnosis. We have seen our reg. ped. a child psychiatrist - who agreed with the diagnosis and did not want to prescribe drugs, a neurologist (same diagnosis) an Infectious disease clinic ( who gave the ped, the go ahead with long term antibiotics) an immunologist ( who said just keep doing what we are doing if it is working) and a rheumatologist ( who just double checked his joints as he complained of joint pain this summer when he was sick.) and a naturopath. The most useful have been the ped. the naturopath and the ID clinic.

My son also has PITANDS - we try and boost his immune system with good food, keeping away from bad food, lots of hand washing, trying not to get overtired etc. - this was more naturopathic stuff - we did blood work for food sensitivities, OAT testing, pyroloria testing.

We think my brother has some form of PANDAS as a child, and has outgrown it - no symptoms at all - it is only after my son's diagnosis some of the stuff made sense to him and my parents. In all of my research over the years - I have faith that these kids will outgrow this.

 

Chemar has talked about monolaurin - I have meant to look into it more, my son is getting more reluctant about vitamins - and is doing so well now - I am letting things slide a bit.

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Thanks again for your response. It is interesting you mentioned his joints hurting. My son is constantly trying to bend and stretch his knuckles. He puts down a book, a ball, a toy to stretch his fingers out. It is strange. Maybe a tic, maybe nerves? He also is hyper and restless after a virus. His attention span is short and he talks nonstop. I notice him urinating over and over. The Dr. said no iUTI nfection. He gets easily emotional and is hard to distract. He has a one track mind. I do not know where to turn as far a a DR. I've seen three neurologists with none of them taking me/him seriously. His ped Dr. seemed clueless. Do I need to contact a Dr. in another state? I was praying this would disapear. He had his first episode at one year old. I am anxious about his long term prognosis. I looked in the phone book and did not see a immune Dr. listed.

Michele

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I am not sure if you have already posted where you live - if you do again along with where you are willing to travel - Chemar seems the expert on doctors who understand PANDAS. Have you taken in literature to your doctor? I always take all the literature from NIMH when I go and see a new doctor - just incase they have not heard of it. I was lucky with the ID clinic as every time we went they did a literature research and reviewed it before I came - so they always had the same publications as I did.

I am getting mixed up as there seem to be a few new PANDAS moms - has your son been on antibiotics? Did he have a sudden onset? The joint pain, frequent urination, emotional lability, ADHD type behaviour are ALL symptoms of PANDAS as noted - again this info in on the NIMH website. I just scanned down and one of your posts said the doctor wouldn't give meds as he felt they take too long to kick in, then the episode is over - with antibiotics, for us, it kicks in almost over night. We have not tried any other drugs.

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I am south of Akron, Ohio not too far from Cleveland Clinic. The Clinic DR. are supposed to be some of the best Dr. in the world. This is why we went there. Yes, the Dr. did say it takes time for the tic meds to kick in. He did not believe he should be on antibiotics seeing he only gets one or two strep infections a year and it viral not an infection right now. None of the DR. even checked his titers. He felt they would be elevated from the Nov. strp infection. In the past the PITANDS symptoms only come on couple times a year most often in the winter. I went to several vitamin shops today not a one had heard of Monolarin or had it in stock. I guess I will have to order it. I could go Dr. to Dr. and not find one that buys into the diagosis of Pitands. I feel very alone because no one I associate with has heard of this. The Dr.'s don't seem concerned because he got over it in the past. I am 9 months pregnant and a bit emotional having to deal with this alone. I wish there was a Dr. near by who understood. Thanks for sharing your knowledge and experiences. Are there support groups?

Michele

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Michele,

Honey, I am so right there with you! My son is just classic PANDAS, of course no one told us about it till we researched and found it on our own. Then couldn't convince them of the need for antibiotics. We even went to the big Vanderbilt research hospital where they are supposed to know everything about everything. Well they do know, and they do agree about PANDAS, but just not about antibiotics. The opinion is, that if the tics stop when he takes antibiotics it really is just a fluke. After all, his culture was negative. We tried to buy into it, after all they are the experts. So once again we stoped the antibiotic, and what happened, the tics started back. Started the antibiotics back, major improvement in the tics. There are other associated symptoms as you described, but none as debilitating. He has mood swings, irritability, concentration problems, but these are mild compared to the other issues.

 

We have dealt with this for 6 years. My son became an overnight OCD when he was five immediately following a strept infection. All I was told at the time was that the strept had triggered it and that he would most likely grow out of it, nothing you can do. So he has been on SSRI since then. He got worse at age 7 with another strept infection and we increased the SSRI. I still knew nothing of PANDAS. I just thought is was a strept trigger. It wasn't until he started having terrible tics in November after several strept infections that I started doing my own research and came up with PANDAS. When I went to my ped. with it, she says "well yes we have known that all along". Hmmm. Wonder why no one gave me the name, so I could make some decisions about my child. Anyway, long story not so long, several doctors / specialists later and still no one wants to write that long term antibiotic script. We have a one month supply now, so we are currently looking for another physician who can make our pediatrician a believer. Thank goodness she is an open minded person and trying to make sure we do what is right for my son.

 

Anyway, What I was trying to let you know is that I really feel your pain and wow I bet with you being pregnet you must be so much more upset and worried. Stay strong. Knowing the problem is half the battle. And now at least you have a place to come for advice and guidance. Listen to these ladies who have used the supplements, sounds like they have had great success with them. Hope things go well with your new arrival. You must take care of yourself. That is the first step to helping your children. Get plenty of rest and good luck.

 

Dedee

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