matis_mom

My son had strep in his gut (not his throat) and suspected Lyme and the LLMD we were seeing at the time did recommend a T&A. Supposedly the tonsils can harbor bacteria/become an absess and then no matter how much abxs they give you, they sort of get blocked right there at the tonsils. We did proceed with it and I can't say that it made a dramatic difference, but who knows what it would have been like had we NOT taken them out. The biopsy did reveal deep crypts consistent with recurrent strep (I swear I only knew of 1 strep infection!!!). I think the problem with our kids is that they do not respond to strep the way a healthy person would, so sometimes you don't even know they have it. I am actually scheduled to have mine out because I am not responding to abxs for strep. Right now my cultures come back negative but the tonsils are swollen and the throat is read. My PCP sent me to the ENT who readily said I should just take them out. It is surgery, they do have to put you under, and the recovery is not fun. It's not an easy decision.

Thanks for that post! I am in a similar place here, with a second child and third child who I very much suspect have Lyme, and almost sure I have it myself too. Interestingly enough I also have thyroid problems, which coincidentally started after I had a few days of what felt very much like a really bad flu, incredibly tired, could not function, etc, and I also had a very strong, out of the blue jaw pain. After that I've had depression, fatigue, tingling feelings, joint pain (comes and goes), a couple of instances where I felt suddenly very tipsy (I guess that's vertigo?), etc. Plus, I kept getting strep (not good for a PANDAS mom!). I did not put it all together until I started looking into Lyme for my PANDAS ds. So your post is helpful to me in that I will pursue treatment even though I am not "that bad." I still have not gotten a positive test, but hopefully soon (I'm seeing an LLMD on Monday). Thanks for posting, and I hope every member of your family recovers fully. And don't blame yourself. Who knows, maybe if you had had her tested back then it would have been negative and then you would have closed that door. Maybe being so young she would not have tolerated the antibiotics well. Everything happens for a reason. God is taking care of you, don't worry. Isabel

Thanks for the reality check! She does not show any "abrupt" stuff, so I don't know what exacerbation would be like for her. It's just overall anxiety about certain things. I guess this just tells me her brain is definitely overfiring, can't wait for our appoinment next week!

A good sign indeed that you were able to notice all those things without getting over-stimulated by them! Just wish the art had been more inspiring

Finally got dd10's camK score: 140 I guess that is lower end of PANDAS range? (ds12 was 168) Definitely something not right in there. We have an appointment with an LLMD who also sees PANDAS patients lined up for Friday and we'll take it from there...

I saw the ENT today because my PCP has tried 3 different abxs and my tonsils are not going down. The ENT took a quick look, felt my tonsils (from the inside!), and said if I'm not responding to abxs, he recommends taking them out. He said to plan on 3 weeks recovery. My husband broke his ankle last week, so he is out of commission for a few more weeks at least. Maybe I'll consider it after he is back on his feet and able to take care of the kids (and me!!!). Now, we are doing this for strep, but I heard some LLMDs recommend it for Lyme too. I have an appointment with an LLMD next week and see what he says. Has anyone here done a T&A for Lyme?

Wow, so happy you caught it early! Hopefully the Omnicef will stop it dead on it's tracks!!! I would add a bit of ibuprofen just in case...

I get that a lot and I just found out it's a Lyme symptom. Probably overlaps with PANDAS too, just something to keep in mind.

I am so glad you BOTH had fun

I guess we've all had our proverbial LAST DROP... for us it was the flu, but at the same time there had been strep in the house the week before, and fifth's disease in our group of friends...

Wow! Awesome video! So different from the currently paradigm. Don't palliate. Stimulate. I like that Does anyone know which foundation she belongs too? What exactly is this new treatment they are trying out?

Poor lady! To have to deal with this at her age... Does she have any family you can talk to? Keep us posted. Very interesting...

There was an article once about how college kids all start getting sick right after the Halloween sugar binge. I like the idea of trading the candy for a gift. We were bargaining yesterday with the kids and reached the following "deal"... * They get to keep 5 pieces of candy of their choosing and eat them on that day * I take everything else and throw away anything that is just too junky (like bright red stuff and the like) * They can have a piece of candy each on Sunday till it's gone PANDAS ds has been awesome about staying on his diet, so I think he won't even touch this stuff. Got to go get something special for him. I found an awesome GFCF chocolate cake mix at Wegmans, maybe we'll do that. Have fun and stay safe and healthy everyone!

I hear you! I am on the same boat here. Dealing with the stress of my first diagnosed PANDAS, then seeing my daughter go down hill, trying to figure out why we all keep getting strep, and realizing we all have LYME!!! I have not gotten a positive yet, but I so know I have it. And if it wasn't for my son, I would probably have ended up an antidepressants (I was actually on them for a few months, thanks Doc!). Oh, the Frustration to think they could have caught it right then!!! I went in because one day to the next I was totally wiped out. After that depression hit. My GP wanted me to see a psychiatrist. My OB put me on Celexa. I took if a few months and then decided to wean myself off. I kept struggling with fatigue and depression off and on... Then I got too busy with life to pay attention, but I could tell I was not able to run things the way I used to. If it wasn't that we kept going to the doc because PANDAS DS kept going into exacerbation, we never would have made the Lyme connection! It kind of gives validation to know you ARE ACTUALLY SICK. You are not just being lazy, you are not stupid, you are not slacking off. You can only try so hard to put on a smiley face and go on. Praying a year from now we'll all be posting here about how great we feel and how amazingly well our kids are doing :)

I need to keep hearing that Thanks! Sometimes all the stuff you read makes you fell like you'll NEVER be done. Good to hear you are DONE!

I'd say see your counselor, put your cards on the table and see what he suggests. Obviously, with those grades it's not like you are skipping school because you don't care or are not motivated. You have all the documentation, they should be able to help you out. Let us know how it goes.

Hmmm, she already on two abxs. She is probably ok, and I would guess the problem is other kids in the classroom will keep passing it around. But I have to say my son did get an ear infection while on Augmentin XR (they had to add Rifampin), so better safe that sorry.

I don't have any articles for you but I can tell you it is PANDAS related. Maybe if you find like a general article where it mentions "cognitive inability", but it's really more that than. It's lack of focus, it's getting lost going from point A to point B. At his worst, my son could figure out his Math, but somehow could not get through the page. Something happens to idea on the way from the brain to the hand...

Breaks my heart to hear these stories! I hope and pray every mom here gets their child back 100% Keep hoping, keep praying, keep treating, keep trying. Cindy, Have you seen any improvement since starting abxs?

Stephanie, you crack me up! From now on you'll have to split for money between the DAN doc and the grocery store and/or special order items, and most of your time will be spent in the kitchen! Have fun with it, it's kind of neat, and there are tons of delicious recipes. Glad to hear you are giving it a try

one more time I really think it would be best to take other discussion onto a separate thread so that this one can remain "on topic" to just that single question initially asked. When someone is trying to get a clear answer on something, it really becomes confusing when the topic goes at a tangent. I know it is all related, but the original poster was not asking who should be tested or why, only asking who does **not** have Lyme. thanks Sorry! Couldn't help myself... I'll try harder next time

In our family's case, I think we have strep problems BECAUSE OF LYME! I mean, most people handle strep just fine, and they only get it once in a while. Our family has had it almost on a monthly basis each spring and fall after moving to 14 acres with woods... Another thing is most of the time there are NO symptoms (other than DS's mental stuff), which I think indicates we are not mounting a normal response to it, especially when some of us (ie., mom) do not even respond to the regular abxs. Lyme is known to cause immune problems, goes on a 4 week cycle, and people report "flares" each spring and fall... too much of a coincidence!

Thanks! I think we'll start by setting out Damminix tubes. Something's got to give!

Very possible her PANDAS symptoms may increase, even if she doesn't get an active infection. Get everyone checked. Even your PANDAS dd. My son got an ear infection while on Augmentin XR (at the time his siblings had strep), so don't assume she cannot get it. Hopefully she'll ride this out, but be very proactive at dissinfecting stuff, changing toothbrushes, throw away the old tube of paste, etc, so it doesn't spread further. Welcome to the PANDAS world! It really changes the way you LIVE! My kids have finally learned not to share cups, not to use water fountains, etc.

Goodness, that's horrible that they had to see that! I understand your concern about hearing another version, and it's great that you take him to the bus stop, but what's going to happen when the bus drives off? How about at school? Kids are going to be talking about it. It might be better to tell him the truth now. At least that way he will now that it IS safe to be around buses. The drivers are careful and always looking out. The stop sign is there to keep kids safe, people know to stop. How unfortunate, how hard to explain to a 7yo that anyone would purposely hurt himself. And thank God that boy is going to survive!!! Hope this does not cause any significant set-back. Try to get some sleep!