Feeling a little discouraged!

[Char]

I asked Dr.L office if there was some reason if Dr.L could not work with my sons doctor because where in a different country. Her office said no, there's not a problem. So I asked what's the hold up, I got again from her office , I don't know. My sons doctor tried calling Dr.L but she hasn't called him back. This is taking WAY to Long!! I am thinking if she does not talk to my sons doctor by this week, I am asking for my money back and I'm calling to set up a phone consult with Dr.K. My son needs the right treatment, waiting around is getting us nowhere!!!

OOps, I meant to say, we were getting nowhere as in getting the months steroid and more antibiotics. So far, the Azith has helped my son focus better, arm tic decreased, eye rolling is a bit better, sit still a bit better. But he still has a hard time making decisions and gets frustrated about things easy. I am scared that once the Azith is stopped, my son will backslide. I doubt that my sons doctor will prescribe more antibiotics without talking to Dr.L first. So here I sit waiting and being frustrated!! Char..

[thereishope]

I am speechless. I just can't believe a phone call or explanation has not been given. Please keep us updated.

[lismom]

Char, you have to get more zith and keep him on it. I pm'd you. My son has been on zith for over 2 months and I am just seeing some solid results. I have upped my zith because my son is 12 and 95lbs. I also just started some ibuprofen. Within these months I have been so discouraged because the progress just wasn't there and it was like 2 steps forward 5 steps back. But last couple of days have been the best for him in over 3 months. I don't even bother to check his titers any more because I go by the way he looks. His tics,restlessness and emotion have improved. I am keeping out hope for us and you. But I am not going off zith for a long time if in fact this keeps improving. Kathy

[colleenrn]

Kathy,

I was just wondering how much Zith your son gets b/c I have all 3 of my children on 250mg/day, BUT one weighs 45 and one weighs 130, so I am constantly wondering if my 130# child is getting enough.

Thanks, Colleen

[lismom]

Hi Colleen, I started him the first time with 250mg a day and it took nearly three months to see results. My first pediatrician had me so worried about my sons liver being on long term zith, I didn't even think of increasing it. But after a relapse, not sure what it was, I decided to go to 625mg every other day. I would split one 250mg in half. After two months of only seeing fair results, this past 4 days I decided to do 750mg every other day. I am remaining guarded but he seems a little better. Kathy

[colleenrn]

Kathy,

That is very interesting.

 

You saw an improvement when you increased the Zith to 625, but started giving it every other day instead of every day(or did I misinterpret your post and you give 625 one day, 250 the next, etc..?) You are still seeing a little improvement on 750 every other day?

 

That really makes me question even more if my 13 yo (130#) is getting enough! She recently had a flareup from a "4 to a 7" and I knew she had been around someone with strep, so I gave her 500 a day for 5 days and she is back to a "4, maybe a 3". I have bumped my younger children from 250/day up to 375/day when I see flareups in them and know they were closely exposed to strep. How long do you think you will keep him on that dose?

 

Ever since this past July when all of my kids were heavily exposed to strep for a week (4 cousins we were staying with had strep) they have not been the same. I have been wondering if they could have gotten exposed that week to a strain of strep resistant to Zithromax, but the other kids with strep responded to Zithromax, so I don't think it is that. I then have wondered if for some reason 250mg/day is not enough. That is why your post is so interesting to me.

 

Thanks,

Colleen

[lismom]

Hi, yes its now gone to 750mg every other day. I decided to do the every other day because back when we started treatment my son was fine stomach wise untill month 3. Then he started to get diarrhea. Oh crud, I thought, this is just perfect. Shortly after that something happened, whether it was exposer to some bug or strep but things exploded. I believe his strep is hiding in the gut. This has truly been a ballancing act between antibiotics and probiotics and strict diet. All tics, chorea movements and emotion was as it was back in the beginning when this flared. Long story short, went off antibiotics for several weeks, bad mistake and started them back up at 500mg every other day. 2 months go by, some improvement, not enough. Go to 625mg every other day, maybe a little more improvement. This has been a sawtooth recovery for sure. Several days ago I decided to go to 750mg every other day because of the thought of people talking about their recovery with such high augmentin. Thinking maybe same logic for zith. Right now I am just watching and waiting. If this works better, I will stay on this as long as safe for my son. Kathy