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Sigh...I got a positive strep test today...no wonder things have been crazy around here!!

 

My first test was negative two weeks ago but this time it was positive...I think the lady the first time did not go very far into my throat and that is why it was negative.

 

Amazing to see the PANDAS symptoms go through the roof for dd--even on Azith:

 

~huge eyes

~repeating the same sentence over and over (I don't remember seeing this before so strongly as I did this time)

~raging

~no control

 

It's been this way for about a month now, slowly building and building and building until she has lost all "executive function" as Dr. Bock describes it.

 

I wonder how long we have with me on the antibiotic until she calms down?? We actually made the decision to do prednisone this week before I even tested positive because she has been so out of control the doctor wanted to see if it would calm her again like it did last summer...so far it's not working (day two on it).

 

We're going on our first big vacation this weekend and I'm afraid it's going to be a disaster. :(

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Hi Indigo,

 

I also tested positive for strep 1.5 weeks ago. (My strep symptoms started 6 days b-4 that.) We saw mainly handwriting decline, increase "measurement rituals" (an ocd compulsion mainly associated with eating), some food restriction, didn't want to sleep alone in her room anymore (fear? separation anxiety?). Now she will sleep in her room and her handwriting is better. I would say after 3-4 days on abs (augmentin for me) dd's handwriting was still a mess. After a week of abs (for me) handwriting was better. She also started sleeping in her room again at that point. She still has lots of the "measurement rituals". It seems that some symptoms go away faster than others.

 

Dd (55 pounds) is on (since June) Azith. 250mg/day and also started back up with Advil 200mg/day 3-4 weeks ago. (She also gets 10mg/day of prozac.)

 

Your strep went on longer than mine b-4 you got treatment...so I would think that would make a difference in how long things take to get back to normal.

 

Did you do prednisone before? I vaguely remember something about how it doesn't always work if used a 2nd time. ??? Are you on Azith? Can you temporarily increase that?

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That is really scary, that our children ON Zithromax can have a ramp up of symptoms when just exposed to strep. I know if they are not on antibiotics and are just exposed to strep they can, but I ws feeling pretty safe that it would not happen while on Zith.

EaMom-

Did you increase your daughter's dose or just ait it out until your Augmentin kicked in? I am curious why they put you on Augmentin rather than Zith.

Colleen

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Hi colleen,

 

Yes, it is scary...I wouldn't necessarily have believed it if it wasn't happening to my own child.

 

Re Augmentin: Originally the doc (one who I had never seen b-4 and wasn't familiar with my situation) I saw was going to put me on Amoxicilllin. I asked for something stronger and she was okay with Augmentin. She seemed against Azith, for some reason, and I didn't push it since I didn't think my strep was intracellular (I was pretty symptomatic, huge lymph nodes, had never been a carrier b-4).

 

Re upping the Azith: We didn't up PANDAS dd's Azith. since she is already on a pretty good dose for her weight. The handwriting issue was the first thing we noticed but I didn't worry about it much since we were out of town on spring break (so not in school). I just thought it was odd and didn't think it was b/c of me having strep. I wasn't aware of her not wanting to sleep alone until we got back (and I had gotten strep tested/started abs) since we were all in the same room on vacation. The increased measurement rituals started once we got back (a later onset symptom?) and I was already on antibiotics. PANDAS dd still has lots of measurement rituals...those haven't gone away since dec. but they are more now.

 

What I think is happening (and has happenned when little sister has been positive as well) is that PANDAS dd is reacting to the strep (antigen) in the environment...it's getting into her throat and colonizing and then the Azith. kills it off (so there is no full blown infection) but meanwhile, her body is still reacting to the strep that was there. I just feel that for us, things would have been 50x worse if there was no Azith...

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Eamom-

 

Everything you described makes sense as to why it is happening. I have seen little things here and there that really make me suspicious my kids have been exposed to strep (there is TONS of strep right now in their school), but b/c they are on Zithromax, I have (fingers crossed) not seen any major flareups. I am convinced and absolutely know, that without out the Zith, it would be a different story. My 3 oldest have been on it since Oct., but my 2 year old only twice, for 10 days this time and 3 weeks the other time. I wonder if he is getting it (a carrier perhaps) and exposing them to it OR are they just being exposed at school.

 

My niece and nephew are visiting tomorrow and were both diagnosed with strep 6 days ago. One put on Amoxicillin, one on Keflex. I was 90% confident if they were still contagious, my kids would be safe b/c they are on Zith, now I am not so sure.

 

Strep stinks, to put it lightly!!

Colleen

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Yes, this is dd's third time on the prednisone. When she flares really badly, my doctor likes to put her on it to calm the inflammation, and that has been 3 times this past year (August, Dec., and now May). She really gets violent and as she gets older it is getting so much harder to control it. Dh and I were half laughing/half weeping at dinner tonight as dd sat nicely, talked nicely, gave appropriate responses, etc....it's been a long month of raging and crying just about every hour for a full month-we are both absolutely exhausted!! It started when dd got the chicken pox and then I got strep a week after that, but since the first test was neg. I wasn't put on an antibiotic until last night.

 

I also think that the strep just being in the environment increases her antibodies which attack the basal ganglia. I think that it was years before she was treated for PANDAS and perhaps that is why her flare ups are so violent--not sure. The repetitive OCD stuff is enough to drive me batty---what do you mean by measurement rituals, EAMom? My dd is obsessed with the temperature. She is checking the temperature many many times a day and then repeating sentences about it over and over.

 

I'm on amoxycillin for 10 days--reasoning was that I am also having urinary symptoms that the amox could help. I do feel a bit better today, so we'll see.

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Hi Indigo,

 

the "measurement rituals" are (I think) OCD compulsions. Dd says she is conscious of them (and can control them/not involuntary...so not tics) and she says they make her feel better. They were much worse last spring when her PANDAS anorexia nervosa was in full-force. She would check (measure) her wrists with her fingers (presumably to make sure she wasn't fat), then she would measure up and down her legs, then touch her back bones, then her chin (checking for fat under chin?). Now she's been doing a lot of checking her back bone, sucking in her chest, and feeling the front of her rib cage. Sometimes she does the chin thing too. The measurement rituals totally went away in the summer (after starting Azith), but then came back in the school year with strep exposure (most noticeable since Jan, may have started a little before). Mainly they show up when she is eating but today I noticed them at a book fair after school when someone was reading a story out loud...so that is worse, to have them in other situations.

 

Well...our younger dd (non-pandas) has a fever tonight...sigh. I had brough her in on Monday (when she was healthy) for a culture (to make sure she hadn't picked up strep from me)...but don't know those results yet. Maybe that's why the measurement rituals are so bad.

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