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Article - PANDAS & Tonsillectomy


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This is an awesome find - thanks for posting.

 

It is 12 years too late for my son but I know it can help save a child today. My son was given 7 days of amox every time he had ear infections, sore throats, strep, scarlet fever etc until around 1996. Dr's also refused to take out his tonsils. They changed the rules and started withholding abx but still keep refusing to take out tonsils. I begged them to take out his tonsils and it didn't happen. My son was born at the wrong time and place and it makes me cry every time I think about it.

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This is an awesome find - thanks for posting.

 

It is 12 years too late for my son but I know it can help save a child today. My son was given 7 days of amox every time he had ear infections, sore throats, strep, scarlet fever etc until around 1996. Dr's also refused to take out his tonsils. They changed the rules and started withholding abx but still keep refusing to take out tonsils. I begged them to take out his tonsils and it didn't happen. My son was born at the wrong time and place and it makes me cry every time I think about it.

 

Mkur - I feel for you. My son was born just before Swedo's first article came out. It is still a battle but at least there is something written. I do hope that your son has been able to benefit from some of this research. It seems that several adults with PANDAS are on this forum and are continuing to benefit from current treatments.

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My 7 year old PANDAS daughter is thought to have had PANDAS since around 18 months old. Her symptoms at that point were mostly rage, ODD, emotioal liability & separation anxiety. Maybe more...it was very hard to decipher what was going on with her at such a young age. At the time, we just thought the terrible-twos hit early & very extreme. At age 4 she had her tonsills removed due to the size (4+) and b/c her ENT said that often they saw defiant behavior go away after a tonsillectomy. (Still didn't know about PANDAS at the time.)

 

Within 1 month of the tonsillectomy dd was a new child. She was the happiest I've ever seen her, and didn't get strep for a year. --It was a "wonderful" year.

 

The problem is that at age 5 she started to get strep again (both throat & peri-anal), and after about 6 months of recurrent strep & viral infections, PANDAS came roaring back with a vengence. This time tics came on overnight and very bad. (This is when we first learned of PANDAS.) Along with tics came rage, fears, emotional liability, bedwetting, separation anxiety, brian fog, OCD, and a series of other symptoms. This was over 18 months ago...and we're still not out of this exacerbation...even after 4 IVIGs.

 

So, what I'm trying to say, is that while I believe that a tonsillectomy can help/eliminate PANDAS symptoms...like all other treatments, it's not a cure. It can all come crashing down again with another infection. :(

Edited by worriedmommy
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I found this article very interesting and was excited until I read worriedmomma's most recent post regarding relapse after a tonsillectomy.

 

Dr. Latimer has recently (a day ago) referred us to Georgetown for tonsillectomies and Adenoidectomies for my twins. She thinks the strep bacteria could be hiding in my one twins tonsils b/c it was enlarged and ugly looking and his lymph glands were swollen. On the other twin she said his adenoids were enlarged and that the strep bacteria is more than likely hiding in his adenoids because his glands were also enlarged. I found this new information very encouraging b/c the one twin w/ the enlarged tonsils has a throat clearing tic and the other twin has a sniffing tic she said both could be caused by these enlargement. In addition to the tonsil and adenoid issues both boys are considered by Dr. L to have PANDAS and are on a 3mth round of antibiotics. Both have tested positive for Mycoplasma in addition to several strep infections including scarlettina last year. I finally feel like we are getting somewhere but am very cautious b/c I don't want to get my hopes up...

 

So....can anyone tell me if they too saw a drastic reduction in symptoms post-tonsil/adenoid removal? Did the symptoms return if yes, how long till they returned? If your child suffered from vocal tics did this help reduce the vocal tics?

 

Thanks for your input!!!

Jen

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Jen - My son had chronic sinusitis and PANDAS symptoms every time he came of high-dose antibiotics from toddlerhood until 7 years old. At 7 years old his symptoms were uncontrollable - even with very strong antibiotics. We took him off all antibiotics to see what would happen and within a few days his tonsils (which were always large and vascular and ugly looking) turned completely white. He had been harboring bacteria in those tonsils - probably for years - and that was the real underlying problem... the sinusitis was secondary and was probably being triggered by those tonsils at the time. I had read Swedo's first article by then and I thought that if he did have PANDAS a tonsillectomy would cure him so I was happy to have them removed.

 

We had his tonsils removed and saw gradual improvement to near typical functioning in school and at home (still had some mild ADHD symptoms), but we continued to see an increase in his ADHD symptoms during allergy season when his sinuses flared. We also saw a sudden-onset OCD symptoms after a respiratory infection (mycoplasma?) about 4 years after the tonsillectomy. During this time we did not know he had PANDAS, so all of this was difficult for us to understand. Most recently he had a huge exacerbation last year and we eventually discovered a sinus cyst that was removed last summer. So, in answer to your questions - A) We did see much improvement after tonsillectomy, though it took time, and B) we did see recurrence of PANDAS symptoms when he had infections and inflammation.

 

In retrospect, I think my 14-year old son would have (could have) had a much higher quality of life if we:

1. Removed his tonsils during toddlerhood (we removed his adenoids at 18 months due to sinusitis, but not his tonsils) to remove the ongoing bacteria and continuous assault on his brain

2. Recognized that PANDAS is chronic condition that requires ongoing management, and removal of tonsils removes the source of infection ONE TIME. When we saw subsequent symptoms, I would have then been much more diligent about seeking antibiotics and searching for infections instead of believing well-intended (but poorly educated) doctors who told me that my son could not have PANDAS if he did not have strep throat.

 

I don't know if that helps your decision or not. Also - many on this forum have posted about "sterilizing tonsils" before tonsillectomy. This is when the child is given antibiotics prior to tonsillectomy to reduce the chance of releasing strep or other bacteria into the bloodstream during surgery. This is not something that is "proven" to help, but it is something several doctors do so you may want to read up on it.

 

Best wishes~

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My five-year-old had his tonsils out in February... and we sterilized them with Clindamycin... Dr. T recommended that (and although both the ENT and our Ped. didn't think it was necessary, I went with Dr. T's opinion). My son did great pre and post- tonsillectomy. Interesting to note: my son's behavior dramatically improved the week before the surgery with the stronger antibiotic; he's been on full strength azith. for a number of months now. We kept him on full strength azith. following the surgery (for him that was 200 mg 6ml twice/day). He's been doing great since the surgery (albeit on full strength azith)... he still has some tics- tends to get about one or two at a time- they disappear and and a new one replaces it (e.g. a cough tic left to be replaced by a hand licking tic). However, we just switched Jack two days ago to the same dose but only once/day... Maybe I'm too vigilant, but I think he's acting goofier and more hyper already... he also just demonstrated more tics at once at bedtime (cough tic, hand licking and scratching at the palms of his hands because they constantly feel "itchy" to him). I hate the idea of staying on high dose abx for so long... but it does seem that every time I try to reduce it, the symptoms get stronger.

 

I'm still very glad we had the tonsillectomy... he had positive cultures for strep 6 times in the past year with associated changes in behavior. The surgery went well, the recovery period was much easier than I expected, and with that much strep I think it was warranted. We also did his brother at the same time since he needed his third round of ear tubes (and already had adenoids out with the second round)... he also had the same great recovery.

 

But as I knew before I did this, it isn't a cure... and we still need the antibiotics- and in strong doses, it seems.

 

Francine

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  • 2 weeks later...

My son had a tonsillectomy/adenoidectomy 3 weeks prior to his 4th birthday last Sept. He had been DX with PANDAS since the age of 2.5, but the docs never really took it seriously - rather, they didn't treat the PANDAS, only the recurring Strep with 10 day runs of antibiotics. I did not know last year that PANDAS could look worse that what I had already seen - BX issues, hyperactivity and occasional tics caused by Strep and eradicated by the antibiotics each time. I was told that if his tonsils were removed, the PANDAS would disappear because he would no longer get Strep. I knew that he had Strep prior to the surgery. I asked his ped x 2 for antibiotics to get rid of the Strep, as I was worried about the surgery with active Strep. He referred me to the ENT who told me that it was not necessary. All ###### broke loose. Within 1 day, I could see my son going downhill with PANDAS symptoms. Within 2 days he was worse than I had ever seen and had severe terrors in which he could not "wake up". He recovered from the surgery, but looked very shaky and unnatural for the couple of weeks post surgery. I requested Augmentin as a prophylaxis after the 10 day post surgery Omnicef run, but his ped. refused, giving him only a small dose of Amox. Within 3 weeks after his surgery, he had a severe acute episode, arriving with a vengence over night. This was a healthy, normal kid who functioned quite well when uninfected with Strep. Over night, he turned into a kiddo who looked like he had severe autism, rocking, chorea, vacant staring, bizarre hand and finger movements, inability to communicate well, intrusive thoughts, severe facial and vocal tics, etc.

 

Bottom line: My son has recovered significantly from the PANDAS, but not fully. He no longer has noticeable physical symptoms, but the OCD and intrusive thinking is intermittently present along with intermittent hyperactivity. He has been on antibiotics almost daily since last Sept., when he started treatment with a specialist for PANDAS. She seems to think that the surgery had something to do with the acute episode as well. I am glad that he had the surgery, and although he has had his ups and downs, after his recovery from the severe symptoms he has not had them return. Although he has not had a documented case of Strep Throat (has had a few cultures d/t my running to his ped. every time he gets sick), HIS TITERS HAVE ELEVATED since the surgery. He has been on ABX daily, since last August, so I am not sure what to make of that.

 

Word of BIG caution: Do NOT do the surgery unless his docs are willing to give him the ABX prior, to kill any Strep in there!!

 

Best wishes, good luck - sorry I sound like a zealot - I guess this thread really struck a cord with me :)

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Word of BIG caution: Do NOT do the surgery unless his docs are willing to give him the ABX prior, to kill any Strep in there!!

 

Best wishes, good luck - sorry I sound like a zealot - I guess this thread really struck a cord with me :)

I agree. I would do abx before surgery just in case.

 

I know a boy who developed severe TS/ODD after having his tonsils removed. I think he is pandas and gave his parents the info.

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Tonsillectomy did not help at all for PANDAS.

3 hdIVIGs helped a little.

AugXR at high dose for almost 2 years now. has helped a little.

Looking into LYME for treatment now.

I now know I (mom) tested positive for LYME.

Wish I knew this years ago.

Check all possibilites even if they seem far fetched for now.

We also cannot get strep titers in normal range.

If not on antibiotics they will rise.

Even without tonsils.

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  • 10 months later...

My 12 yr old son was recently diagnosed with PANDAS. The Dr. Says that hes seen much success from tonsillectomy. He just started a 10 day dose of ax. Hes been suffering off and on with this for over a year now and just now getting dx and ax. He just started showing the first signs of puberty. I'm wondering if he will be permanately damaged by this or if there's hope for my son to recover and live a normal life. Also my husband and I stay sick with allergies and chronic sinus infections so I'm worried that we are going to infect him or prevent his recovery. I bought him some oil of oregano b/c I read that it fights off bacteria and viruses. Has anyone had success with Oil of Oregano? We are scheduled to see an ENT May 1st but I'm suffering from a cold right now and it seems that his symptoms have gotten w

orse since my cold. Any input would be greatly appreciated.

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