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Oh Tracie-

 

I am SO with you. We have been in a "bump" since January :(

I am trying so hard to stay positive, but it does wear you down.

Just remember, you have gotten her well before, you can do it again.

Hang in there!

 

Eileen

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Oh Tracie-

 

I am SO with you. We have been in a "bump" since January :(

I am trying so hard to stay positive, but it does wear you down.

Just remember, you have gotten her well before, you can do it again.

Hang in there!

 

Eileen

Thank you.. we are on our second ivig..

I know it works... and she is doing so much better

but it's the little things that freek us out

she say's it's not PANDAS.. but I think she would say that

because she dont want to have ivig done again...

but she would know if it was PANDAS again..

I pray I pray for all of us..

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My Doc says these bumps are viruses I dont like bumps.. I feel your pain and hope this goes by quickly.

 

Melanie

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Tracie,

 

I am so sorry. You recent PMs to me were so positive. Prayers and hugs and health to you!

Mary

from Michigan

Thank you Mary..

the weird thing is that she is NOT sick???? at all

It might be her loose front tooth that is the only thing we can think of

but it is so off and on.. right now as I am sitting here on the computer she is down at the neighbors house catching bugs...

she could care less about where I am.. so that is good we will just need to watch and see

I am giving her 250 mg of azith everyday for 10 days per Dr.K

then we will see.

I hope your Mary is doing ok.

 

Tracie

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Tracie,

 

I am so sorry. You recent PMs to me were so positive. Prayers and hugs and health to you!

Mary

from Michigan

Thank you Mary..

the weird thing is that she is NOT sick???? at all

It might be her loose front tooth that is the only thing we can think of

but it is so off and on.. right now as I am sitting here on the computer she is down at the neighbors house catching bugs...

she could care less about where I am.. so that is good we will just need to watch and see

I am giving her 250 mg of azith everyday for 10 days per Dr.K

then we will see.

I hope your Mary is doing ok.

 

Tracie

 

We did IVIG with Dr K last May and found that what many moms on this forum mentioned then, the prophylaxis with only zith 250 is not enough. He gave us augmentin last year at 250 once a day. Other than the herxing/turning back ages etc, DS got sick within two weeks due to two loose teeth and chlorine in his camp pools. I upped his abx to 600 mgs bid and that did the trick. I rotated with Biaxin for 10 days as a boost and that worked to totally stop his up symptoms.

 

In our long journey I have found that rotating abx and having a doc as a source for abx precriptions is invaluable. I know Dr K is hard to reach many times and I had another local PANDAS doc in my corner to help with high dose abx. After high dose IVIG high dose abx to sustain the benefits as log as possible and for a smooth transition for the body when those borrowed antibodies drop off- makes sense to me.

Jodie

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I'm sorry. I hope and pray it gets better soon.

 

In my area, I'm noticing strep has resurfaced. A couple months ago the ped said it was dying out, then all of a sudden it seems like it's back so our kids are fighting exposure as well. In my area, one wonders if the wacky weather we had played a role, it was very odd with the winds, a lot of rain, heat then cold, etc.

Edited by Vickie
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Traci,

I so hope it gets better for you guys. I really feel for you. I don't know how much longer I can go on either. I just pray that I have the strength and I am praying for each and everyone of you guys. This is just too much. I am hoping that the scientists are working on finding more help for us. Keep us posted Traci.

Wilma

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