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Do kids usually grow out of P.A.N.D.A.S.?


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Thanks Nancy and Fixit. Was on abx for a total of 12 years or a bit more. Stopped pen vk around 19 or 20, early college. Don't think I have experienced any bad side effects from the abx. I do have acid reflux and have to stay on med for this (for about 12 yrs now). Not sure if this is related or not...am guessing not. I'm sure this question will be there with our kids, how long to stay on abx. I have heard some say until late teens is best, to protect from strep, then as you get into adulthood, strep is less of a problem.

 

Ok, I know the next question...have I had strep since stopping abx? I only remember testing positive once and it was a faint positive...about 10 yrs ago. Other than that I don't think I have had strep since I was 7. It's more common in the pediatric and school years, right? If I got strep, would PANDAS symptoms return? I don't know. I still have some tics and slight OCD now...the 5% that is left over.

 

I also have some Lyme like symptoms. I may seek treatment for this. We have just started ds12 with Lyme treatment, as he has been clinically diagnosed with Lyme. (Or at least some type of co-infection). Guess what his main abx is at this time...bicillin injections. It was hard for me to take him into the doc on Monday for his first shot...he didn't like it either. Dr Beals prescribed 6 total, one a month. And for now, he is also on 500 augmentin a day, and diflucan. We are hoping this new treatment protocol will help. If not, at least we tried. His local pediatrician said he will probably just have to wait out his symptoms like I did (doesn't believe he has Lyme). We will see.

 

Oh, and you want to know why I took him in for his first injection instead of his Mom... Well, Mom had confirmed strep. Had it bad. Isn't life weird. Thankfully, the kids and I have not had any strep symptoms. Mom got on abx quickly. Kids are already on them of course, and yes I snuck a few zithros for a couple of days.

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Guest pandas16

I just wanted to say that i've NEVER been off abx since age 10.

Amox for 3 years

Zith for 5 years

Now on Augmentin.

 

I never got strep again. The only reason why I'm having a slight rise in symptoms now is because of a mycoplasma infection. I should be getting steroids soon. Originally what got me well was pulse steroids.

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Of course, it is a big question as to whether an individual child would outgrow PANDAS, but I like to think it is possible. I just wouldn't count on it happening. I also believe a child is more likely to outgrow it if the PANDAS is kept under control (treated appropriately with long term abs +/- IVIG +/- pred).

 

My friend has twins with peanut allergies, and she has been told there is a chance that they will outgrow that. So, I think the same thing might happen with strep/PANDAS.

 

I found this on peanut allergies: http://allergies.about.com/od/nutallergy/a/peanutallergy.htm

Only about 20% of children will outgrow peanut allergy by the time they reach school age. For many people, peanut allergy may be a lifelong disease. Those people who outgrow their peanut allergy typically have milder reactions, smaller skin test reactions, and fewer allergies in general.

 

So, it sounds like the kids with "milder" cases of peanut allergy are more likely to outgrow it. Perhaps the same is true with PANDAS? Of course, there is no knowing how IVIG plays into the mix. I think it helps.

 

On outgrowing PANDAS, this is from P.Mom's trip out to visit Dr. Cunningham:

 

6. If your child is doing well and being managed with antibiotics and/or steroids, it is quite possible that over time, the immune system will "right itself" as they get older. This is the hope. This is what she stated regarding my boys. She did say that I would have to deal with it most likely until they were around 20.

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  • 2 months later...

Fixit...started bicillin shots at age 7. Received them monthly for 10 years, until 17 or 17 and a half, somewhere in there. I felt funny after a shot one day and they were concerned I may have had a reaction, so this is when I started on oral abx. Once starting Pen VK, I stopped the shots altogether. Yes, I think you are right, very fortunate to have gotten the abx. I never got strep again after the age of 7, so this obviously worked. This started way back in 1972. The doctors at Duke knew what Sydenham's Chorea was and this was the diagnosis. I had a very supportive small-town country doctor...he was also known as a brilliant doctor and had good connections at Duke. He personally gave me the shot every month for 10 years...it cost $8.00 each visit.

 

Compare this to today...all the insurance mess, all the naysayers about PANDAS. We took our daughter to Duke 10 yrs ago when she started showing signs of PANDAS. They said it's just tourettes. We said, no it's not...b/c I had SC, which now would be more accurately described as PANDAS based on my actual symptoms. They (Duke University Medical) did not recognize PANDAS 10 yrs ago. Not sure about now...have not gone back. But, they sure got me on the right track back in 1972, I agree. Probably due to my mother's earnest prayers to God...she got a lot of prayers answered in the positive direction, I believe. She was an amazing Christian woman.

 

I told Dr Latimer who my doctor was...still remembered his name, Dr Griffith. She actually knew him.

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My son who is 8 years old has severe tics after the strep in February. We live in Raleigh. I took him to Neurologist who knows about PANDAS condition but he did not suggest any of the treatments you have mentioned. Do you know any doctors in this area who may help? How is your condition now?

I feel helpless and would appreciate your suggestions.

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Hello Samra, I am sorry to hear about your son. I know what you are going through and I know what your son is going through. It is very difficult. You will be hard pressed to find a doctor in the Raleigh/Durham area who can help with PANDAS. Our primary neurologist is in Charlotte and we have seen doctors in DC and Maryland. For some reason, I got way more attention back in '72 than either of my kids can get now...meaning, I was hospitalized (twice) and a battery of tests run. The only treatment I really got was the bicillin shots and Penicillin antibiotics, which were prophylactic in nature, preventing strep. I just outgrew most of my symptoms, which were mainly tics/chorea. So, today I am 90 to 95% symptom free. Currently, we are pursuing Lyme treatment for our son, who is 12. We are hoping to kill any Lyme or tick borne diseases he may have or other co-infection, and hope he will see improvement in the future (6 mos to a year most likely). He falls into the PITAND diagnosis as well, which means any infection can trigger PANDAS symptoms, not just strep. But strep is what set it off for him, and our daughter too.

 

PANDAS is a hard condition to treat. Even the doctors who understand PANDAS, don't always know what will work as each child is different. I really wish I could give you a doctor in the area that is good with PANDAS, but I just don't know one.

 

My wife is a member of a PANDAS support group in the Raleigh area. Send me a PM (personal message) from this forum and I will have her get in touch with you. You can learn more from the moms in this group, and I am hoping they can give you some info about area doctors.

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My DD15 has been on abx continuously for 8 years. We have never had to fight for it.

 

MMC -- Thanks so much for sharing your story. It's pretty remarkable, and I find myself feeling two very distinct things: first, I'm so happy to hear that you've "recovered" 100%, but second, the whole idea of 10+ years of antibiotics is incredibly daunting! How many years did you actually take abx, injections and oral, combined?

 

Unless I've missed a more recent perspective or statement on her part, I don't believe Swedo embraces the idea of lengthy (multi-year) abx regimens, and I know our doctors are reluctant to carry on indefinitely in that vein, partially because of the literature on the topic coming out of the NIMH.

 

Anyone else here been successful in securing 5+ years of abx for either themselves or their kids?

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As a teenager I had RF. I also had ocd, and chorea movements. My ocd was almost psychotic in nature cause I kept feeling and occasionally seeing a large cochroach on me lol. There had never been one in my mothers house (she had ocd (just right), again we did not know it. Mom would hollar at me if I let her know that I felt one on me. With the movements, my dad kept noticing it and would tell me to stop that. lol These were minor and did eventually go away completely. I was on the biacillin shots once a month for 5yrs along with pennicillan @ 3 times a day.

So, I fully believe that our kids can outgrow it with the proper medicine, and vigilance on our part and on the kids part when they become older teenagers or young 20's.

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MMC,

My big question to you is this: Have you had any long-term health problems BECAUSE OF THE YEARS OF ANTIBIOTICS?

That is my one concern right now. My ds has been on abxs for 2 years now. He is currently being treated for Lyme too. He is on so many antibiotics it's ridiculous.

So, you would put my mind at ease if you told me you are perfectly healthy now (although a bit OCDish every now and then!)

 

Thanks for sharing!

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Soemone above (blessedwife I think?) says that Swedo followed up after 8 years and many pandas kids had out grown it, and could manage with minimal medication.

 

I think it is important to note she followed up with children in her study - those children were treated with IVIG, antibiotics, or PEX . So, those children didn't just outgrow it - they were treated - weather they may have outgrown it without treatment is anyone's guess.

Edited by norcalmom
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Mati's Mom...yes, I am fine after years on antibiotics. The first 10 years were intramuscular, so did not have to worry about gut issues. The last 2 years or so were oral Pencillin tablets, but never had an issue. I don't remember the dosage. Both of my children are on oral abx and we make sure they supplement with plenty of probiotics. I know doctors are cautious about long term use for several reasons, but from my experience, I never had an issue.

 

I never had much OCD, mainly tics. I still have some tics but are not noticeable. I do think I have some OCD tendencies, but very minor...or, I have had it for so long, I cannot even tell I have a problem with it.

 

I think I may have Lyme. I can name about half a dozen symptoms that can fall into a Lyme diagnosis. I am trying to decide how to pursue treatment, who to see. Will probably start seeing the same LLMD my son sees, start with Igenex testing, etc. So, I will not hesitate to go back on abx and maybe kill off Borellia and whatever else I may have...perhaps then I will see a decrease in the small amount of PANDAS symptoms I now have, along with other issues.

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Mati's Mom...yes, I am fine after years on antibiotics. The first 10 years were intramuscular, so did not have to worry about gut issues. The last 2 years or so were oral Pencillin tablets, but never had an issue. I don't remember the dosage. Both of my children are on oral abx and we make sure they supplement with plenty of probiotics. I know doctors are cautious about long term use for several reasons, but from my experience, I never had an issue.

 

I never had much OCD, mainly tics. I still have some tics but are not noticeable. I do think I have some OCD tendencies, but very minor...or, I have had it for so long, I cannot even tell I have a problem with it.

 

I think I may have Lyme. I can name about half a dozen symptoms that can fall into a Lyme diagnosis. I am trying to decide how to pursue treatment, who to see. Will probably start seeing the same LLMD my son sees, start with Igenex testing, etc. So, I will not hesitate to go back on abx and maybe kill off Borellia and whatever else I may have...perhaps then I will see a decrease in the small amount of PANDAS symptoms I now have, along with other issues.

Thanks for replying. We are kind of on the same boat here... Two kids being treated for Lyme/Co-Infections/PANDAS, my husband had confirmed Lyme and got treated, I got it a few weeks after him but was told I was "depressed". That was three years ago, when we moved to a property with land/woods. I've been having Lyme symptoms off and on, and finally got an ID doctor to treat me for a month (I was seeing him for strep originally, but no matter what we do --tonsils out, different abx-- my ASO remains high). I do feel a lot more energy on doxyciclyne! I can't go the whole LLMD route for myself right now, but I encourage you to pursue it and see how it goes. Keep us posted.

Good to know there were no long-term side effects from those abxs! My kids are getting weekly Bicillin shots (on top of the oral abxs), and we are doing them at home, which seems to cut down on the drama part. Not that they hurt any less (I've had them myself, so I know how it feels), but at least we don't get the dreading, the wait, the anticipation.

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