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Ramp in Symptoms


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Well here we go again. DS is definitely ramping up and I'm not sure why. Tons of tics in his neck, the most i have ever seen, which are beginning to hurt his poor neck. the epsom salt bath doesn't seem to be cutting it. he's also more emotional volatile again. i guess he broke down in tears at school on friday because he didn't understand the math assignment and the teacher kept telling him to just do his best because it was new material to everyone. then a friend called him a crybaby and he pulled out his scissors and threatened to cut the boys shirt, then realized he was out of line and just put his down on the desk and felt sad. He never used to get so sad, more mad. i'm not sure which i prefer. i don't know what to do with sad, though it seems like a more true emotion and is probably healthier for him in some ways. but most of the time is still pretty happy and definitely more easy going than before the biaxin.

 

I'm wondering if my other son has strep again and I don't know it. He threw up at school on Thursday and came home exhausted. The last two days he has just been really fatigued. His tongue has white spots and little pink swollen taste buds. I've asked his doctor several times about the tongue and he just says it is "geographic tongue" and fairly normal. I'm not sure I believe him. 3 weeks ago he had another strange rash on his bum cheek and down his leg that i thought looked like scarlitina. the instacare doctor gave us Keflex just in case, though didn't want to swab anything because anus itself didn't have the red ring around it. then it did a few days later but it went away in a day or so. i didn't take him back in because if figured they would just give us abx anyway, which he was already taking. right now he is just lethargic and has really swollen glands, so he is fighting something. maybe his brother is reacting to whatever it is and i just have to wait for both of their immune systems to work through it? The only symptoms my PANDAS DS has are the tics and emotional lability, so if it is strep, the abx seem to be working.

 

the obvious thing to do would be to take him to have a swab, but the last few times it has been negative and i'm tired of paying for negative swabs! and the doctors are beginning to think i'm a total wacko. even DH, who has been pretty supportive of all of this, rolls his eyes when i say i think he may have strep again. i need a doctor here that supports me in all of this so i don't feel so weird when i want to have them tested!

 

it's also a full moon, which had me thinking about last month's discussion. and to top it off, it has snowed here all week, which does seem to increase symptoms as well.

 

who knows. just when i think we are making some progress, things fall apart again. i know you all have been there. i'm just feeling tired and sad for all our kids and for us as parents dealing with this. thanks for letting me vent.

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Could be anything, but from what you are describing sounds like your pandas son is reacting to your other child's illness (which does really hint at possible strep). According to our doc, your pandas child could react evin if your other child does NOT have strep, just b/c he is sick! I know what you mean about going in for another swab. I am lucky to have found a doc who totally understands pandas and when I call him and tell him someone is sick and having pandas symptoms, he just calls in a abx to the pharmacy (I have to pay out of pocket for the phone consult though :-( ).

 

Good luck, and if you want the name of our doc, let me know. He is in Melbourne, FL and you only have to physically go to the office once a year. Everything else is over the phone (except IVIG, of course).

 

Stephanie

 

 

Well here we go again. DS is definitely ramping up and I'm not sure why. Tons of tics in his neck, the most i have ever seen, which are beginning to hurt his poor neck. the epsom salt bath doesn't seem to be cutting it. he's also more emotional volatile again. i guess he broke down in tears at school on friday because he didn't understand the math assignment and the teacher kept telling him to just do his best because it was new material to everyone. then a friend called him a crybaby and he pulled out his scissors and threatened to cut the boys shirt, then realized he was out of line and just put his down on the desk and felt sad. He never used to get so sad, more mad. i'm not sure which i prefer. i don't know what to do with sad, though it seems like a more true emotion and is probably healthier for him in some ways. but most of the time is still pretty happy and definitely more easy going than before the biaxin.

 

I'm wondering if my other son has strep again and I don't know it. He threw up at school on Thursday and came home exhausted. The last two days he has just been really fatigued. His tongue has white spots and little pink swollen taste buds. I've asked his doctor several times about the tongue and he just says it is "geographic tongue" and fairly normal. I'm not sure I believe him. 3 weeks ago he had another strange rash on his bum cheek and down his leg that i thought looked like scarlitina. the instacare doctor gave us Keflex just in case, though didn't want to swab anything because anus itself didn't have the red ring around it. then it did a few days later but it went away in a day or so. i didn't take him back in because if figured they would just give us abx anyway, which he was already taking. right now he is just lethargic and has really swollen glands, so he is fighting something. maybe his brother is reacting to whatever it is and i just have to wait for both of their immune systems to work through it? The only symptoms my PANDAS DS has are the tics and emotional lability, so if it is strep, the abx seem to be working.

 

the obvious thing to do would be to take him to have a swab, but the last few times it has been negative and i'm tired of paying for negative swabs! and the doctors are beginning to think i'm a total wacko. even DH, who has been pretty supportive of all of this, rolls his eyes when i say i think he may have strep again. i need a doctor here that supports me in all of this so i don't feel so weird when i want to have them tested!

 

it's also a full moon, which had me thinking about last month's discussion. and to top it off, it has snowed here all week, which does seem to increase symptoms as well.

 

who knows. just when i think we are making some progress, things fall apart again. i know you all have been there. i'm just feeling tired and sad for all our kids and for us as parents dealing with this. thanks for letting me vent.

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I really felt my daughter reacted once when my dh was sick. There is always the possibility of strep at school too. You just never know.

 

The good thing is, if he is reacting because of exposure, it will hopefully go away when the exposure is gone.

 

Hang in there.

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who knows. just when i think we are making some progress, things fall apart again. i know you all have been there. i'm just feeling tired and sad for all our kids and for us as parents dealing with this. thanks for letting me vent.

 

yup....

maybe it's sawtooth.....maybe it's just different stuff working out of his system

hang in there!!!

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That's not geographic tongue. You can google images on geographic tongue. What it looks like is shallow caverns (same color as the rest of the tongue). It looks like you looking at an arial map. My husband gets it on occassion.Our dentist told him what it was. If he stays away from too much acid (ie orange juice, tomatoes, pineapples), it goes away.

Edited by Vickie
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Oh, your post rings a bell! Actually, several...

1) I would say your non-PANDAS son probably has strep (even without a positive swab, I would bet on it according to your description of symptoms and his brother's reaction).

2) Also, my daughter has the geographic tongue thing, and our ped said it "flares" when they are coming down with something.

3) We also get the full-moon thing around here! Good thing it's only once a month!

So hang it there, and be thankful you already got your non-pandas son on antibiotics. I would just suggest you are very careful with cleaning, changing toothbrushes, etc., and do take him back a couple of weeks after he is done with the antibiotics to make sure it cleared.

And I so can relate to the docs giving you that "oh you poor crazy woman" look, and forking out copays just to get that peace of mind. Just a couple of days ago I marched 7 kids into the pediatricians (my husband kept the baby, thank goodness!) to make sure we are clear from the last round. We are so blessed to have good insurance, but still, when you multiply x7, it really adds up! We are heading for plasmapheresis so at least the doctor was a little more sympathetic. And the nurses were complementing us on how easy it was to swab everyone (sad, though, that they now the drill so well!)

 

Isabel

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