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Now DS2 has strep!


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DS6 has sudden severe pandas episode starting this past monday and by friday morning I started augmentin (on myself and him). I was hoping that by eliminating it ds2 wouldn't get it, but I don't think I acted quickly enough. By sat morning ds2 had all the signs - tongue-thrusting tic, fixated on certain activities (if I force him to stop - big tantrum), very OCD about which way I drive, very irritable. I increased his OLE and saw a bit of an improvement, but not enough. I am starting augmentin tonight.

 

They (and I) had strep in sept. and now dec. They get it 3-4 times per year (maybe more), even when I was homeschooling the older one and both boys were home and I was hypervigilent about germs, they still both got strep (although back then they were not on prophylactic anything). Last time they got strep they were on prophylactic azith and this time high dose OLE.

 

Does anyone think I need to consider tonsillectomy for these boys?

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Well, having tonsils removed is supposed to reduce your chance of strep by 80%, but there are some on here that go on to have chronic strep problems. My son did have t and a at 5 years old mainly because of PANDAS. Prior to t and a, he only had strep twice. He did go on to have strep again one month after surgery.But the odds were against him since at that time both siblings had strep too.

 

Tonsils can be a hiding place for strep. If they are bigger, you can also get food stuck in them, even if you don't see the food (don't ask me how I know).

 

As for the two year old, I get nervous about anesthesia and little ones. As for the 6 year old, my ENT told me that recovery is usually easier and faster if they are taken out at a younger age than waiting until they are 10 or so.

 

It's a lot to weigh.

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hehe Vickie... being a nurse, I'm just dying to know how you know about food being stuck in tonsils! :P ... but I'd never press you to share more than you want. :)

 

My DD11 had t & a in August 2009 due to constantly recurring strep infections that were difficult to eradicate (she was sick much of 4th grade)... and of course, PANDAS. She improved for several months - until she caught strep again in spring 2010. I don't believe she has cleared it since - definitely not since early August 2010. I did have our ENT check her about a month ago, just to be sure they had not grown back - they had not. As Vickie noted, the strep can hide in the crypts, deep in tonsils/adenoids. In my daughter's case, I think her inability to clear it is likely due to her low Immunoglobulin levels. It is a lot to consider... and I would say factors worth considering are how often they get strep, how severe the PANDAS becomes, how well you are able to control it and resume good quality of life... and how long that takes.... vs. the decision to have the surgery.

 

I see the same thing here with the OCD hyper-focus on things... big meltdown if we remove the object of her obsession.

 

Stephanie... what is OLE?

 

I hope that you and your kids are both feeling much better soon!

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OLE is olive leaf extract.

 

We are all better for now. Will see what happens when augmentin is done and back to school! I suspect that the child sitting next to him may have been the culprit. He was sick this past week, I was there for the holiday party and watched him cough into my son's breathing space - gasp! Not to mention he has autism which makes me wonder if he has pandas/strep, too!!

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i haven't read other replies.....

but i say yess....wish i had done it when ds was 5ish......

 

to support that....

dh who has some tics and still gets strep 2-3-4 times a year is getting his out on the 28th....his titers are always high..i always think he tics less on abx...and has recently been on them for a while...i just asked visting freind..and asked her thoughts on dh...and she is like oh..yaeh...alot less...

 

dh older brother had scarlet fever, scarletina(couldn't walk etc)...had his tonsils out young...don't know age ..will investigate

...he also said he had a very mild, short lived inciden't of ocd...... he seems to be the healthiest overall as an adult among the 3 brothers...

 

dh other brother had impetigo to many times to count(can't remember him w/o it almost)...still has his tonsils...has terrible psorisis and is on ramicade for it.....and has arthisits....i keep telling him to check his titers and consider tA for his skin condition and possible arthirits....he is not even 40

 

but of course as much as they think i may be onto something...i am equally sure they think i am wasting my time

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Hi Stephanie,

 

I would definitely consider it. DS13 had his out at age 12, because of PANDAS and suspected Lyme. As you know we have a large family and have had strep A LOT, especially last fall/winter. I've all been to the doctor countless times to check, checked titers, etc. I had been having different health problems (don't want to get sidetracked here), and elevated ASO. After trying different abxs, I finally got my tonsils out and, after recovering from surgery, I've been feeling MUCH BETTER OVERALL, THANK GOD!!!

 

Of course, with kids, you always will have the worry about anesthesia. At least that was a big concern for me.

 

But anyhow, the other point I wanted to make is that you keep pursuing the Lyme diagonosis. After two years on this PANDAS journey (which originally started with and LLMD, but I dismissed it because I was too focused on getting a positive lab), we are back to Lyme. Thinking back, I remember so clearly my kids getting sick every 28 to 30 days, like clockwork. Someone in this forum mentioned "the Lyme bacteria has a life-cycle of 28 days" or something like that... well this is my theory now... Lyme is what turns off your immune system, and that's how you catch strep, or are not really ever able to erradicate it.

 

Now since starting Lyme treatment, I've noticed "flares" on my kids, and think "shoot, they have strep again". Thankfully, these flares pass, and what looked like strep I think now it's just a Lyme/Bartonella flare.

 

So my suggestion would be to yes, think tonsillectomy, as both Lyme AND Strep can hide there, and get them tested for Lyme and Bartonella, or just go see a good LLMD. Also, look at your own health and your husband's health, and see if either one of you could be the source.

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Well, having tonsils removed is supposed to reduce your chance of strep by 80%, but there are some on here that go on to have chronic strep problems. My son did have t and a at 5 years old mainly because of PANDAS. Prior to t and a, he only had strep twice. He did go on to have strep again one month after surgery.But the odds were against him since at that time both siblings had strep too.

 

Tonsils can be a hiding place for strep. If they are bigger, you can also get food stuck in them, even if you don't see the food (don't ask me how I know).

 

As for the two year old, I get nervous about anesthesia and little ones. As for the 6 year old, my ENT told me that recovery is usually easier and faster if they are taken out at a younger age than waiting until they are 10 or so.

 

It's a lot to weigh.

 

 

 

We are considering it too for ds 7 and 9 with enlarged tonsils, lots of strep per year, PANDAS and possibly lyme. Its such a tough decision. My ds 9 gets strep rashes sometimes too so I wonder about how effective tonsillectomy would be for him. Brown eyes mom, what are the immunogoblin tests? Are these done by immunologist? Both boys had very low CD 57 which I understood as an indicator of low immune function or chronic bacterial infection. It'd be good to find out which.

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