Update on Dd..and we saw Dr. Trifiletti Wedneday

[momaine]

After a horrible week we decided we really needed an expert on board and decided to take a trip to see Dr. Trifiletti. We talked with him Monday morning and he agreed to see us Wednesday morning.

 

This is the quick version of events of the last 5 weeks.

 

Nov 6th -figured out Advil helped a ton by accident. began giving it daily on Nov 8th.

Nov 11th began 1000mg Augmentin.

Nov19 upped it to 2000mg Augmentin XR

Nov 30 - Dec 8th No tics at all after tics for weeks on end...none, for ten days straight. (this was ten days into the augmentin xr 2000mg dose)

Dec 8th I forgot to give her a probiotic

Dec 9th rash on bottom, likely yeast infection Tics and OCD out of control

Dec 10th horrible day with tics and ocd

Dec 11th Tics slow a lot, ocd still pretty bad...from this day till today tics are fairly quiet...still there though to some extent.

Dec14th left for NJ/NY and took cousin with us, which helps dd a lot. 3 decent days while on the road and in the city. some ocd, very few tics, if any.

Dec 15th saw Dr. Trifiletti. Very knowledgable and feel very good to have him on board. Just filled script for Zith today. (Dec 18th) Just gave Dd first dose.

Dec 17th--first night home. Horrible ocd, some tics. Dd just wanted to die but got to sleep in less time than I imagined it would take. Sleep by 11 pm on couch. (We don't even try to go up stairs anymore, too many things are difficult, stairs, doorways, getting in and staying in bed...)

Dec 18th VERY hard ocd day but my mom came to help and we got her to her Blood draw recommended by Dr. Trifiletti. (checking lyme, strep, and immune system) Got first dose of Azith into her. Poor kid. Shitty day! AFter 3 days in the city holding it all inside.

 

Lab said the tests will take up to two weeks to get results. Will let you know how they all come out. Dr. T also recommended the Cam Kinase test after the lab reopens.

 

Will keep you all updated. Thanks for all your help.

Angela

[dcmom]

Hi Angela, Sorry things have been bad- you and dd are due a break!

 

So she is now on augmentin AND zith? Can you discuss Dr T's thoughts on this- sounds interesting....

[Suzan]

I am glad Dr. T was good for you guys. I hope the new abx help. I am sorry you are having such a hard time right now.

 

Susan

[peglem]

We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.

[momaine]

Hi Angela, Sorry things have been bad- you and dd are due a break!

 

So she is now on augmentin AND zith? Can you discuss Dr T's thoughts on this- sounds interesting....

 

 

He said they both work in different ways. Don't quote me on this..it was a lot to take in....but one kills the strep and one stops it from multiplying?? Plus Azith is a broader spectrum antibiotic. But since there are pockets of strep on the east coast that are resistant to Azith it isn't a bad thing to keep up with the Augmentin and dd is tolerating it well. That is what I got out of what he said. Like I said, don't quote me on it.

 

He was fantastic, knowledgeable, and friendly. It wasn't about filling out a million sheets of paperwork. He just sat and talked to us and took notes and really wants to help dd. He said she is now his patient and he will work with us to help her. We can do some stuff over the phone and not have to travel to NJ all the time..just on occasion.

 

Angela

[thereishope]

I hope things settle down for you. Are you giving Advil still? Is it doing anything? Was a steroid discussed?

[peglem]

So good to hear your experience was so positive! Zith stops the bacteria from multiplying- it also will get to any strep that is intracellular. Augmentin kills bacteria at higher doses.

[momaine]

I hope things settle down for you. Are you giving Advil still? Is it doing anything? Was a steroid discussed?

 

 

yes still doing advil. still helps, I think. Don't dare stop it right now. This is a terrible night. Got to run.

Angela

[momofgirls]

Angela

Really a steroid burst, maybe a good 30 days might give you good relief. I would call Dr T (even page him!) And get him to call it in for you. You sound like you are really struggling. Advil might help in a pinch but you need something stronger.

[dcmom]

Angela, I agree with momofgirls. Both of my girls have tolerated the steroids really well. For pandas dd it stopped two of her episodes within 3-4 doses. I think it would be worth a shot. See if he will give you 4 weeks (20mg/day for 7 days, 10 mg/day for 7 days, and then 5 mg/day every other day for 14 days).

[EAMom]

Just remember that steroids will lower CaM kinase ll values...so you might want to wait or at least draw blood/spin the serum and save it (refrigeration??) for Dr. Cunningham b-4 doing steroids.

 

Also, for us, steroids took a while to "kick in" (we did a 6 day burst but it took 2 weeks to see any difference). Also, you'll need to stop the advil while on the steroids.

[thereishope]

Just throwing this out there.....

 

If you would consider a steroid burst, maybe it would be a good time to do it while school's on winter break. They won't be around so many kids and illness.

 

I'm not trying to convince you to do one, it's just something to think about.

 

I hope it's better for you soon.....

[momofgirls]

Also just wanted to remind you that Cunningham's lab is close for the holidays anyway. You can't do the blood draw now. You know this is Pandas and that test will be available next year. I just hate for you to be struggling. It may take a bit for the steroids to help but the sooner the better. Good luck.

[P_Mom]

Just chiming in about the Lyme test...............it will be negative...all Lyme tests will be negative if you are on antibiotics. Antibiotics have to be stopped for ATLEAST 14 days before testing.

[momaine]

We did discuss steriods. He wanted to try the Azith and wait and see how that went first. He let us know that there are options out there to try if things don't improve soon. As far as school goes.....and germs...my girls are both homeschooled. They always have been. And even if dd was not homeschooled, I doubt she'd be going to school right now as she is pretty incapacitated by this.

Angela ~ glad to be ready for Christmas

 

 

Angela

Really a steroid burst, maybe a good 30 days might give you good relief. I would call Dr T (even page him!) And get him to call it in for you. You sound like you are really struggling. Advil might help in a pinch but you need something stronger.