Finally on the right path

[T_Anna]

JoyBop, do you still give the Azith once a day?

T.Anna

[JoyBop]

No, the suspensions is 100 mg per 5 ml and she is on 11 Mls now. What a difference! She's 4 and weighs 42 lbs.

sorry for the confusion, I'm relieved its not your DH. I'm sure its the PANDAS talking. The teenage years are tough even without all of this to deal with. Hang in there, he will come around when he is able. Hugs!

[ajcire]

Not suggesting your ds Needs his tonsils out but regarding small tonsils....two of my kids had their tonsils out and with both the ENT said their tonsils looked ok and were small... Then he took them out and said it was good that I did want them out because they were infected messes. He said sometimes the infected ones are squished and look small.

[T_Anna]

Yikes! I guess we'll keep it on the table.

T.Anna

[Dedee]

I am so excited to hear about your plan. Considering the severity of what you are dealing with I think PEX is exactly what you need. Good for you for working so hard to find someone to give your child the treatment he needs. Get some rest and take care of yourself.

 

Dedee

[SurfMom]

T, thrilled you have someone listening and resetting the clock on meds. I think it is great that your DS allowed the exam to take place in the car. I know it is like a trip over the Rockies in winter just trying to get our kids to cooperate at time.

 

DD15 is also on Azyth. starting at 500 mg to 250. She is a spunky little thing with no antibiotics improving behavior but addressing prophylactically at this point.

 

Improvement at the speed of a solid seems to be coming from the addition of CellCept which either in combination with the monthly IVIG or standing alone. From the pits of complete catatonia in which she completely shut down (no communication and needing a feeding tube), she is starting to write a little in her journal and ask for things she needs.

 

We did a PT round too, it got DD (a high school runner, surfer, swimmer). It got her standing up straight and into some activity she refused with me (aah, the joys of prednisone moods). It was a good call. We too will be looking at CBT probably at Mayo when she improves.

 

Always thinking about you and hugs your way.

[T_Anna]

Thanks SurfMom! I am so excited to hear that your daughter is making strides in the right direction. You were my first PM message way back in the dry shampoo discussion days.

 

Hugs and prayers for your 15 year old too.

 

T.Anna

[Mayzoo]

Yikes! I guess we'll keep it on the table.

T.Anna

 

We have always been told kiddos look normal, even by the ENT who evaluated her for the T & A. When they were removed, they were hypotrophic (small/shrunken), pitted, and were indicative of chronic infection. They also cultured actinomyces bacteria, which no doc has addressed yet. I have an article on how to treat for this, but her immuno has not yet acted on it with all the other stuff going on.

[kthomas]

I think the other generic is Sandoz. I too have heard that Greenstone is not a good brand to use. I had to have the doctor write the script specifically requesting the brand of azith. in order for the mail order pharmacy to fill the RX properly.

On the dosing question - if a child is taking the azithromycin long term, over a year now, should the dosage be as high as the above recommendation?

[searching_for_help]

Interesting... our severely OCD daughter, PANDAS/PANS (and add in an eating disorder and exercise compulsion) is ALSO of Ashkenazi Jewish decent, has been on Augmentin for 9 months (which took away exhaustion she was having, but not much else), but we saw an improvement in mood (after a 2 day herx) on Azithromycin 500 mg. for 14 days (a huge dose!). It hasn't "cured" her, but she's able to read and enjoy life somewhat. The doctor ordered the Azith to treat mycoP. We also think Luvox might be helping, but after a while it's hard to know what all is helping!