Doug

Ok so dd has been taking azith for 4+months... so yesterday I go and fill her rx and a new pharmacist that was there handed it to me and said... "now you do know that she can't have any dairy with this for at least 2 hrs" I said really? well I give it to her after her milk in the morning so I guess I wont be doing that in the morning anymore..!!! after all of this time.. it's not on the box or in the paper that comes with it saying no dairy same goes for the probiotics that we take.. it needs to be taken at night far away from the morning dose of the azith. now the florastor for kids that dr.k wants her to take the company said that we could take it right away with the azith but I am going to call them back again just to make sure!! And I thought I was getting all of this all straight NOT!!! Tracie

Yeah!!! What a great feeling for you and I am sure him as well. Tracie

Wonderful!!!! My daughter is improving on Azithromycin as well!!! She backslid for a few days, but then started to get better again!!! I think she backslid because I was giving her a probiotic that contained magnesium at the same time as the Azithromycin. Apparently magnesium makes it so the Azithromycin isn't absorbed as well. I didn't realize it was in the probiotic! Wow, the things that make me say "really? now I need to check one more thing that I give her" Tracie

Lauren turned 6 yesterday and has been sleeping with me for about 2 years and last night she said "mom I want to sleep in my own bed tonight" I thought I was going to pass out!! I said ok and I slept with her untill she fell asleep and she was in there all night!! she is about 4 months post ivig... This is a HUGE break through for her I can only pray that it last's Tracie (Doug's Wife)

I agree!!! Tracie

Call Dr.K He is the best(I Think so anyway) Tracie

Lauren told us at one point that she wanted to go back with God in heaven because she remembers being there!! I have never cried more in my life.. she is 5 This is when her "BAD THOUGHTS" were at there worst and she just wanted them to go away

What did Dr . K say? did he up your dose of med's can you try a different abx? Lauren is on azith Yes,Lauren is doing super with azith But she had a rash with augmention after ivig so we swiched her right away,she has a problem with abx's so we are keeping our fingers crossed that it don't happen with azith But I have read on here about a rash that developes something about the strep leaving the body or something like that?? and also she had H1N1 3 day's after ivig and i think you can get a rash with that also? I need to start writing all of this stuff down!!! I think I need to start taking her fish oil for my brain... But,hang in there I am sure it is going to get better Lauren will be 6 tomorrow and she is so excited for her birthday Last year she was afraid of it,because of starting school and I told her about a week before that 5 year olds don't sleep with there moms that they are big girls.. BIG BIG MISTAKE!! that is ALL she thought about all day

What did Dr . K say? did he up your dose of med's can you try a different abx? Lauren is on azith

No thank goodness!

Our dd had IVIG with dr.k 18 weeks ago and still doing great But,3 day's after we got back home she caught H1N1 So we kept her away from as many people and inside for about 6 weeks BUT it was still winter and she is only 5 I know Dr.k said that she was good to go and do whatever she wanted to do but when she caught H1N1 we changed our minds.. Why 6 weeks?? we just felt like it just gave the ivig more time to work without catching anything.. but that was just us being parents She was living mostly in a bubble anyway so she was use to us keeping her away from other kids But as of now I can't keep her inside at all and our ture test will be getting her back into school and staying there Tracie

Please Keep us posted..I am so sorry that she is having such a hard time Tracie.

We do the same thing with the WORD strep or Coxsackie virus!!! RUN FOR THE HILLS I am going to be a mess when she starts school but so far we are about 4 months post ivig and still doing good. Tracie

When was your appt. We are with Dr. K right now the 25th..A Dr here is willing to start IVIG but I wan the guidance from Dr K. Keep your apt with dr.k he IS the best.

Hang in there!!! Dr.k was sooo wonderful with our Daughter I am sorry that she is not takeing it well but I DO know that you are in good hands with him is Launa her nurse? she is great tell her and Dr.k Hello from the Patrick's in Colorado, Tell her I will send more movies when we can. Keep us posted... Tracie&Doug

How does this gum help? I am going to find some for my dd this might help her when she is with different kids that I don't know to keep strep away.

She will be 6 this month I hope 1 ivig will do it. but noe we have some dental work that she needs done.. so we need to watch that it never stops!!

My DD needs to have some baby teeth pulled so does anyone up the abx's for dental work? I am not sure if I need to..

We diden't vote ivig as a "cure" as of yet but at 17 weeks post ivig it is looking good for our dd but as we all know that can change in the blink of a eye.. I am not sure there is a "cure" but ivig could be a very good treatment?? at least for us it has been.

Sorry for the bad news Our kids actually took our 16 year old dog passing away (last year) pretty well...they knew she was really old which helped. It seemed that it was much easier to accept that then the death of a younger pet. ya we lost our 11 year old dog last year.. the last couple of years has just been unreal.. but that is life so the say btw, his might be a good book for your dd http://www.amazon.com/Tenth-Good-Thing-Abo...y/dp/0689712030

so my beloved cat of 16 1/2 years has passed away.. the thing is I am so afraid to tell my dd because of the stress it will cause her and as we all know stress can triger pandas,I am going to tell her on Thursday she just thinks she is at pet smart,I told her that dad took there there because she was walking with a limp.. I just need to choose my words.. dont use old or sick ok I think I am just posting this so I can give myself a pep talk I am so glad I found her before she woke up... I don't think I will ever stop thinking about things that might set her off so far we are 17 weeks post ivig and still doing good, after this I hope I can post and say it was all ok.. Thanks everyone Tracie

yep,our dd still sleeps with me every night, i wont even try for a while because it was a trigger point for her (to much stress) this happend before ivig so I dont want to chance it yet,I am glad I am not alone with this. Tracie

OK.. dd has come in contact with the neighbor girl that has come down with the coxsackie virus and this is the virus that kickes her into PANDAS... PLEASE,PLEASE,PLEASE, IVIG I HOPE YOU WORK this has been the best 16 weeks without PANDAS in our lifes we will know by Monday if it kicks in... Tracie

I thought her son did end up doing ivig?? I am not sure where I heard that or seen it somewhere?? my dd titers were NEVER high but she had it Tracie

So when is the best time to give fish oil?? I have been giving it to her at night time because it makes her breath smell all day when I give it to her in the mornings,but I will go back to mornings if I need to. Thanks.. Tracie