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Doug

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Well it has been 33 weeks of pure heaven for our 6 year old dd

but it is back,she had a sore throat,small fever, for a couple of day's nothing to bad

diden't take her to get looked at because her strep tests always come back -

and she HATES the doctors suprise suprise..

and then it turned into a cold just like always

but then last week we have started to see little changes in her

now it is starting to get bigger,her bad thoughts are back a little

the seperation anxiety,the depression ect ect..

It's not back all of the way but it is creping slowly back in her mind.

We have talked to Dr.k we are doing 14 days of her abx's (wich we had already had started) 2x's a day

and if that dont work then we will try prednisone for 3-5 day's and then??? if we need to go back for more ivig then we will.

I think if our Dog had not been hit by a car last sunday and died she would had been fine and the abx's would had worked like they have done before, but I know in my heart that the stress of that just put it in overdrive.

She has been doing so good in school,but now if we do need to get IVIG again, I think I am going to homeschool her for a year or so just to see if it stay's gone,and with the flu starting.. I am not sure how much more we can take

And the money??? I would love for that just to fall out of the sky so we would not need to keep paying everyone back!!

oh well what do you do?

Doug&Tracie

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I am so sorry. I pray that the antibiotics do their thing. Do you think Dr K can be convinced to do a steroid earlier than 2 weeks? Maybe at least the one week mark? If she can take Ibuprofen, you can try giving her that for a week and hopefully that will steer off any impending inflammation.

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I am so sorry. I pray that the antibiotics do their thing. Do you think Dr K can be convinced to do a steroid earlier than 2 weeks? Maybe at least the one week mark? If she can take Ibuprofen, you can try giving her that for a week and hopefully that will steer off any impending inflammation.

we will start it on Friday because we have already been on abx's for 11 day's

but I can't get it from him until Friday at 14 day's..

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Oh Tracie!! This made my heart sink!!!

 

Our kids are all getting hammered this month!!!

 

I know this time last year was H1N1.... and I remember when we met with doc K in July he specifically said "the end of September into October will be the challenge." Sorry if this is a dumb question, but is there something different about this time of year from the rest of the Fall/Winter? Or is it just the beginning of the rollercoaster?

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Doug,

 

I have no words of wisdom. All I can say is that after 10 months my son is now slipping too and I know just how you feel! It is so hard to watch - especially when you have seen how they CAN be and you think you had it licked. This is hard on the kids too. They now (or at least mine) know what it is like to feel good or 'normal'. I am thinking of throwing in the towel on the school thing too. My son has missed 2 1/2 years of school due to PANDAS. I have always wanted to get him back in but now I am thinking that it probably is too risky for him after seeing what a very mild virus has done to him. He did go this year but has missed the last week and a half because of his PANDAS symptoms returning. Hang in there and keep fighting. If I find a money tree I will share it with you!

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Oh Tracie!! This made my heart sink!!!

 

Our kids are all getting hammered this month!!!

 

I know this time last year was H1N1.... and I remember when we met with doc K in July he specifically said "the end of September into October will be the challenge." Sorry if this is a dumb question, but is there something different about this time of year from the rest of the Fall/Winter? Or is it just the beginning of the rollercoaster?

I hate this month!!!

My daughter has also been sick since Thursday. It seems like a typical sinus cold, but boy are her behaviors ramped up. I think her system acts like velcro to all the germs in school. She's on the loop-to-loop to *#*@#!

 

Tracie- Hopefully, the increase in abxs will get her back on track! Sending prayers!

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Oh Tracie!! This made my heart sink!!!

 

Our kids are all getting hammered this month!!!

 

I know this time last year was H1N1.... and I remember when we met with doc K in July he specifically said "the end of September into October will be the challenge." Sorry if this is a dumb question, but is there something different about this time of year from the rest of the Fall/Winter? Or is it just the beginning of the rollercoaster?

I don't know but it seems like it all starts within these months.I just don't get it.

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I think the Sept to Oct months are so bad for illness due not only to the change in weather but starting school. My son's first exacerbation correlated with him starting preschool. This year, my daughter started preschool and I think she already picked something up. That preschool and kindergarten years are hard since kids are exposed to illnesses they've never been exposed to before. My PANDAS son is losing his voice now. March is a bad one too. Can we just put them in bubbles?

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Oh Tracie!! This made my heart sink!!!

 

Our kids are all getting hammered this month!!!

 

I know this time last year was H1N1.... and I remember when we met with doc K in July he specifically said "the end of September into October will be the challenge." Sorry if this is a dumb question, but is there something different about this time of year from the rest of the Fall/Winter? Or is it just the beginning of the rollercoaster?

 

I remember once reading that strep is most active in the months of October and April...I want to say most active in October. Can't remember where it came from tho.

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Hi Tracie :(

 

how long ago was your dd's IVIG (with Dr. K?)

 

And she wasn't on prophylactic abs? Or was she on 1x daily?

 

 

btw,

I thought strep was supposed to be most active between Oct and April (not just in Oct. and April)?

 

 

PS I'm so sorry about your dog as well.

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ooops - yes, between.

 

Tracie - we're all thinking about you and wishing for quick resolution..and for a continued success story. Hearing that she was great for 33 months, is a success story. Its so sacry, but you've been there before and know what to do and what to look for now. Please keep us updated.

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Well it has been 33 weeks of pure heaven for our 6 year old dd

but it is back,she had a sore throat,small fever, for a couple of day's nothing to bad

diden't take her to get looked at because her strep tests always come back -

and she HATES the doctors suprise suprise..

and then it turned into a cold just like always

but then last week we have started to see little changes in her

now it is starting to get bigger,her bad thoughts are back a little

the seperation anxiety,the depression ect ect..

It's not back all of the way but it is creping slowly back in her mind.

We have talked to Dr.k we are doing 14 days of her abx's (wich we had already had started) 2x's a day

and if that dont work then we will try prednisone for 3-5 day's and then??? if we need to go back for more ivig then we will.

I think if our Dog had not been hit by a car last sunday and died she would had been fine and the abx's would had worked like they have done before, but I know in my heart that the stress of that just put it in overdrive.

She has been doing so good in school,but now if we do need to get IVIG again, I think I am going to homeschool her for a year or so just to see if it stay's gone,and with the flu starting.. I am not sure how much more we can take

And the money??? I would love for that just to fall out of the sky so we would not need to keep paying everyone back!!

oh well what do you do?

Doug&Tracie

 

I am so sorry you are experiencing this again. I hope it will be short-lived, since you are addressing it so quickly. I hope you can have MORE than 33 weeks of bliss when this exacerbation is done!

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Well it has been 33 weeks of pure heaven for our 6 year old dd

but it is back,she had a sore throat,small fever, for a couple of day's nothing to bad

diden't take her to get looked at because her strep tests always come back -

and she HATES the doctors suprise suprise..

and then it turned into a cold just like always

but then last week we have started to see little changes in her

now it is starting to get bigger,her bad thoughts are back a little

the seperation anxiety,the depression ect ect..

It's not back all of the way but it is creping slowly back in her mind.

We have talked to Dr.k we are doing 14 days of her abx's (wich we had already had started) 2x's a day

and if that dont work then we will try prednisone for 3-5 day's and then??? if we need to go back for more ivig then we will.

I think if our Dog had not been hit by a car last sunday and died she would had been fine and the abx's would had worked like they have done before, but I know in my heart that the stress of that just put it in overdrive.

She has been doing so good in school,but now if we do need to get IVIG again, I think I am going to homeschool her for a year or so just to see if it stay's gone,and with the flu starting.. I am not sure how much more we can take

And the money??? I would love for that just to fall out of the sky so we would not need to keep paying everyone back!!

oh well what do you do?

Doug&Tracie

Hi Doug and Tracie,

I am so sorry to hear that your daughter isn't doing well. It is so wonderful that she had a wonderful 33 weeks. At least you know the IVIG helps her. How long after she received treatment did she improve. My children both had IVIG and I have not seen positive results. In fact it's quite the opposite. It is 6 weeks for my son and 5 weeks for my daughter. . I wish your family a speedy recovery!

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