DD8 is backsliding fast

[Suzan]

OK, so I know I screwed up and reduced my dd8's antiboitics back to 250mg daily. She was doing super well on 500 mg daily. Our immunologist wanted me to reduce her to alternating 500mg/250mg daily for a period of time which I did maybe a month ago. Our Ped. wanted me to reduce her to 250mg daily after being on Valtrex through December. So, I reduced her again. She probably was not thriving on the alternating 500mg/250mg anyway and reducing it more threw her back down.

 

She's really struggling and this morning, I heard those dreaded words "The wettness is back". That means vaginal strep for us here. Could it reallly be that she could show these signs of strep being on so much zith? She's obsessed with this wettness that is so uncomfortable and worrisome and she wants me to fix it and make it stop. She has dark circles again, defiance, leg pain, hearing voices.....

 

I'm waiting to hear from Dr. T on what we should do regarding her antibiotics and we see our immunologist locally here on the 15th. I have her on 200 mg [EDIT - forgot to say this is her ibuprofen dose] in the am and pm. Should I increase the frequency and see if that helps? Any other suggestions? I don't have enough antibiotics to just increase her back to 500 mg a day without taking it away from dd7 who needs more than what she is getting right now anyway.... Oh the stress!

 

Susan

[dcmom]

Susan- I am sorry.

 

My daughter can get this "wetness" issue sometimes. For her it is the feeling of not being able to get a dry feeling after urinating. Could it be something like this (ocd/sensory) and not vaginal strep? I guess I would up the abx if you have them...

[faith]

OK, so I know I screwed up and reduced my dd8's antiboitics back to 250mg daily. She was doing super well on 500 mg daily. Our immunologist wanted me to reduce her to alternating 500mg/250mg daily for a period of time which I did maybe a month ago. Our Ped. wanted me to reduce her to 250mg daily after being on Valtrex through December. So, I reduced her again. She probably was not thriving on the alternating 500mg/250mg anyway and reducing it more threw her back down.

 

She's really struggling and this morning, I heard those dreaded words "The wettness is back". That means vaginal strep for us here. Could it reallly be that she could show these signs of strep being on so much zith? She's obsessed with this wettness that is so uncomfortable and worrisome and she wants me to fix it and make it stop. She has dark circles again, defiance, leg pain, hearing voices.....

 

I'm waiting to hear from Dr. T on what we should do regarding her antibiotics and we see our immunologist locally here on the 15th. I have her on 200 mg in the am and pm. Should I increase the frequency and see if that helps? Any other suggestions? I don't have enough antibiotics to just increase her back to 500 mg a day without taking it away from dd7 who needs more than what she is getting right now anyway.... Oh the stress!

 

Susan

 

Susan,

I gotta ask two questions, ... was she absolutely doing well on the azith 500 and then started going downhill when you reduced? Also, re the valtrex, is that ongoing, or did you only give that in December for a time? if not on the valtrex, could that be a possible reason why things went downhill? just wondering.

 

I recall you were really pleased when you upped the azith to 500 from the 250, so now that you reduced it and things are not the same, maybe the high dose is what your girl really needs for some reason??

 

How do you know the wetness is probably from strep? could be yeast infection coming on? now I could be wrong about this, but obviously that is common in females at times, because of ovulation, but I guess in a child who is not menstruating yet, that wouldn't come into play? don't know if that is a normal thing in that age and since I don't have a girl, .... what the heck do I care!!! LOL!!!! ...... sorry, j/k..... but maybe you could ask the ped about that one?

 

You could wait to see what Dr. T. says, but i think you'll have to make that call yourself and see if going back on the high dose helps. you never know tho, maybe there is a certain 'adjustment' that comes about when changing doses? might want to wait it out a week if you can and things are not frighteningly bad.

 

-Faith

[Suzan]

Susan,

I gotta ask two questions, ... was she absolutely doing well on the azith 500 and then started going downhill when you reduced? Also, re the valtrex, is that ongoing, or did you only give that in December for a time? if not on the valtrex, could that be a possible reason why things went downhill? just wondering.

 

I recall you were really pleased when you upped the azith to 500 from the 250, so now that you reduced it and things are not the same, maybe the high dose is what your girl really needs for some reason??

 

How do you know the wetness is probably from strep? could be yeast infection coming on? now I could be wrong about this, but obviously that is common in females at times, because of ovulation, but I guess in a child who is not menstruating yet, that wouldn't come into play? don't know if that is a normal thing in that age and since I don't have a girl, .... what the heck do I care!!! LOL!!!! ...... sorry, j/k..... but maybe you could ask the ped about that one?

 

You could wait to see what Dr. T. says, but i think you'll have to make that call yourself and see if going back on the high dose helps. you never know tho, maybe there is a certain 'adjustment' that comes about when changing doses? might want to wait it out a week if you can and things are not frighteningly bad.

 

-Faith

 

Hey Faith.... yes she was absolutely doing well on the 500mg daily. I THINK she was doing well on the 500/250 mg plan. But the reduction to 250mg day was noticeable within less than a week. She is still on the valtrex, no change there. I have her back to the 500/250 but maybe she needs a run at the higher dose again.

 

Regarding the wetness, I have to tell you, this morning with the way she was carrying on, I thought, "please let this get resolved before she gets older and has the normal fluids flowing!".....But seriously, before we learned about v. strep, I always thought it was a yeast infection. Now there is a very distinct difference. This is like water and they think they don't wipe well enough and they keep wiping and it won't go away.

 

dcmom, it's surely sensory, but I just don't know if it's strep or not... I'll see if it continues tonight or tomorrow....Maybe she is just getting older and her body is starting to go through some changes although I thought that a year ago right before our big pandas episode. Plus, the poor thing was so stressed, she put on underwear with a hole in it and that was driving her nuts. I asked why she did that and she said "because it's what you gave me!"

 

Susan

[dcmom]

Susan- That is it. It is like after urinating they continually feel wet and need to wipe again. It is really ocd I think (maybe prompted by some sensory stuff also). My dd had this really bad during first exacerbation, she got to the point of spending 45 min on the toilet wiping after urination. It started "overnight". Then she started avoiding urinating at all costs, untill she would have an accident. Thankfully that cleared up after first episode, and hasn't come on as strong since. I do notice she still wipes slightly exessively, and once and a while she will have a few days where she runs back to the bathroom after urinating. It is frustrating.

 

Another girl on this forum (momtotaylor) had the same exact thing. For her, also, it was one of the most stubborn things to overcome.

 

Try to approach it with an ocd tactic- (Meg's mom is the pro)- like: wipe with two balls of toilet tissue. After that, if you still feel wet, it is ocd (substitute whatever word you use here) and you have to ignore it and get involved in an activity, and the feeling will go away. Our psychologist used a term guti (dd hated, but understood) which meant get used to it. It was from a game they would play ... If your daughter starts struggling with this, definately email Meg's mom for some strategies to move her through.

[ajcire]

I am guessing that putting a thin pad doesn't help take away the sensation any? Do they test for strep with a rapid and culture there the same way they do for throat strep? I presume that the hope is that she wouldn't be getting the vaginal strep while on the antibiotics.

 

 

Dcmom, are you suggesting it is not really related to it being vaginal strep but rather just a sign that it is likely caused by strep and that in Susan's dd it happens to be vaginal? Meaning that could be a symptom people see even with strep elsewhere?

 

 

 

 

Susan,

I gotta ask two questions, ... was she absolutely doing well on the azith 500 and then started going downhill when you reduced? Also, re the valtrex, is that ongoing, or did you only give that in December for a time? if not on the valtrex, could that be a possible reason why things went downhill? just wondering.

 

I recall you were really pleased when you upped the azith to 500 from the 250, so now that you reduced it and things are not the same, maybe the high dose is what your girl really needs for some reason??

 

How do you know the wetness is probably from strep? could be yeast infection coming on? now I could be wrong about this, but obviously that is common in females at times, because of ovulation, but I guess in a child who is not menstruating yet, that wouldn't come into play? don't know if that is a normal thing in that age and since I don't have a girl, .... what the heck do I care!!! LOL!!!! ...... sorry, j/k..... but maybe you could ask the ped about that one?

 

You could wait to see what Dr. T. says, but i think you'll have to make that call yourself and see if going back on the high dose helps. you never know tho, maybe there is a certain 'adjustment' that comes about when changing doses? might want to wait it out a week if you can and things are not frighteningly bad.

 

-Faith

 

Hey Faith.... yes she was absolutely doing well on the 500mg daily. I THINK she was doing well on the 500/250 mg plan. But the reduction to 250mg day was noticeable within less than a week. She is still on the valtrex, no change there. I have her back to the 500/250 but maybe she needs a run at the higher dose again.

 

Regarding the wetness, I have to tell you, this morning with the way she was carrying on, I thought, "please let this get resolved before she gets older and has the normal fluids flowing!".....But seriously, before we learned about v. strep, I always thought it was a yeast infection. Now there is a very distinct difference. This is like water and they think they don't wipe well enough and they keep wiping and it won't go away.

 

dcmom, it's surely sensory, but I just don't know if it's strep or not... I'll see if it continues tonight or tomorrow....Maybe she is just getting older and her body is starting to go through some changes although I thought that a year ago right before our big pandas episode. Plus, the poor thing was so stressed, she put on underwear with a hole in it and that was driving her nuts. I asked why she did that and she said "because it's what you gave me!"

 

Susan

[Suzan]

Susan- That is it. It is like after urinating they continually feel wet and need to wipe again. It is really ocd I think (maybe prompted by some sensory stuff also). My dd had this really bad during first exacerbation, she got to the point of spending 45 min on the toilet wiping after urination. It started "overnight". Then she started avoiding urinating at all costs, untill she would have an accident. Thankfully that cleared up after first episode, and hasn't come on as strong since. I do notice she still wipes slightly exessively, and once and a while she will have a few days where she runs back to the bathroom after urinating. It is frustrating.

 

Another girl on this forum (momtotaylor) had the same exact thing. For her, also, it was one of the most stubborn things to overcome.

 

Try to approach it with an ocd tactic- (Meg's mom is the pro)- like: wipe with two balls of toilet tissue. After that, if you still feel wet, it is ocd (substitute whatever word you use here) and you have to ignore it and get involved in an activity, and the feeling will go away. Our psychologist used a term guti (dd hated, but understood) which meant get used to it. It was from a game they would play ... If your daughter starts struggling with this, definately email Meg's mom for some strategies to move her through.

 

I guess the telling factor will be whether her underwear gets wet. With the v. strep, there actually is wetness and it will soak their underwear. With the OCD you describe, there will be no wetness, right??

 

Susan

[dcmom]

for my daughter (and I believe MomtoT) it was a behavioral or psychological response to strep (pandas). It was ocd and/or sensory related. There was no wetness (or no more than normal) after wiping, and certainly nothing in the underwear (although she would change the underwear constantly).

 

It you find wetness in the underwear (I would say more than a drip- which could be normal) then it it something different than my dd had.

 

BTW, I think this is very common, it was mentioned in a pandas study where kids had urinary frequency and exessive toileting rituals...I have to see if I have that and link it. For us this was the MAJOR and first symptom of first episode- that ped totally missed. Oy..

 

Let me know how it goes Suzan...

[Suzan]

for my daughter (and I believe MomtoT) it was a behavioral or psychological response to strep (pandas). It was ocd and/or sensory related. There was no wetness (or no more than normal) after wiping, and certainly nothing in the underwear (although she would change the underwear constantly).

 

It you find wetness in the underwear (I would say more than a drip- which could be normal) then it it something different than my dd had.

 

BTW, I think this is very common, it was mentioned in a pandas study where kids had urinary frequency and exessive toileting rituals...I have to see if I have that and link it. For us this was the MAJOR and first symptom of first episode- that ped totally missed. Oy..

 

Let me know how it goes Suzan...

 

OK, got it, it could be either, makes more sense that it would be OCD though since she's on so much antibiotics. I'll check her out tonight and let you know and if you find that link I'd be interested....

[ajcire]

But Susan, then the next question would be why is the ocd popping back up if she is on so much antibiotics no?

 

 

for my daughter (and I believe MomtoT) it was a behavioral or psychological response to strep (pandas). It was ocd and/or sensory related. There was no wetness (or no more than normal) after wiping, and certainly nothing in the underwear (although she would change the underwear constantly).

 

It you find wetness in the underwear (I would say more than a drip- which could be normal) then it it something different than my dd had.

 

BTW, I think this is very common, it was mentioned in a pandas study where kids had urinary frequency and exessive toileting rituals...I have to see if I have that and link it. For us this was the MAJOR and first symptom of first episode- that ped totally missed. Oy..

 

Let me know how it goes Suzan...

 

OK, got it, it could be either, makes more sense that it would be OCD though since she's on so much antibiotics. I'll check her out tonight and let you know and if you find that link I'd be interested....

[Debbie1]

Can you take her for an exam before deciding which way to proceed?

 

I did just hear of a PANDAS child who had a full blown strep infection while on the maximum strength of Zithromax. There are Zithromax resistant strains of strep (particularly in the northeast). I guess the question is - if it is strep and she is already on Zithromax, what do you do?

[Suzan]

Can you take her for an exam before deciding which way to proceed?

 

I did just hear of a PANDAS child who had a full blown strep infection while on the maximum strength of Zithromax. There are Zithromax resistant strains of strep (particularly in the northeast). I guess the question is - if it is strep and she is already on Zithromax, what do you do?

 

Ack!! If there is wetness, I will take her in for a swab

 

Dr. T wants to put her on clindimicin in addition to the zith so maybe this would help? I need to call him when I get home....

 

ajcire - I'm guessing from me reducing her abx, but I just don't know.....

[thereishope]

I'm sorry you're experiencing a backslide. I'm going to address the Ibuprofen question. When my son weighed about 44 pounds, I was told I could give him 200 mg. For now, you can go ahead and increase the frequency and start giving it every 6 hours. I would think you can do that for at least 1-2 weeks. As for the dosing, how much does she weigh?

 

Also, is she an older 8 or just turned 8? Eventually, she may start getting vaginal wetness because of her age.Some girls get a discharge for up to a year before they get their period. . I got my first period in the fifth grade. It would probably follow the timeline of when you got yours.

[Suzan]

I'm sorry you're experiencing a backslide. I'm going to address the Ibuprofen question. When my son weighed about 44 pounds, I was told I could give him 200 mg. For now, you can go ahead and increase the frequency and start giving it every 6 hours. I would think you can do that for at least 1-2 weeks. As for the dosing, how much does she weigh?

 

Also, is she an older 8 or just turned 8? Eventually, she may start getting vaginal wetness because of her age.Some girls get a discharge for up to a year before they get their period. . I got my first period in the fifth grade. It would probably follow the timeline of when you got yours.

 

She turned 8 in August. I started mine when I was about 13 yrs old. I think it was the 6th grade. Using that theory she'd have a good while more. But you never know right?! She weighs 75lbs so I'm thinking maybe I could give her 400 for a while?? Or does that sound too much?

 

She said she was angry all day for no reason. I can tell she's on edge, she managed to get through her homework but just barely.

 

Susan

[peglem]

I'm sorry you're experiencing a backslide. I'm going to address the Ibuprofen question. When my son weighed about 44 pounds, I was told I could give him 200 mg. For now, you can go ahead and increase the frequency and start giving it every 6 hours. I would think you can do that for at least 1-2 weeks. As for the dosing, how much does she weigh?

 

Also, is she an older 8 or just turned 8? Eventually, she may start getting vaginal wetness because of her age.Some girls get a discharge for up to a year before they get their period. . I got my first period in the fifth grade. It would probably follow the timeline of when you got yours.

 

She turned 8 in August. I started mine when I was about 13 yrs old. I think it was the 6th grade. Using that theory she'd have a good while more. But you never know right?! She weighs 75lbs so I'm thinking maybe I could give her 400 for a while?? Or does that sound too much?

 

She said she was angry all day for no reason. I can tell she's on edge, she managed to get through her homework but just barely.

 

Susan

I have 3 daughters. What I've read is that it usually happens around 100 lbs. That's been true here. My oldest was a bit chunky when she was younger and started at age 10. (around 100 lbs). My second, when she was 13, again, around 100 lbs. Allie (my 3rd), just this year at age 15...finally got up around 100 lbs-and finally started at the end of the year.