Unsure if Zithromaxis working

[texascatholic]

Hi All,

 

My daughter was having loads of meltdowns today + OCD (but not many ticks). We couldn't bring her to Mass again.

wondering if Zithromax may not be doing its job? We started it last Monday, and I was hoping that after a week would

be up we'd see big differences. Any input? Maybe I have too high of expectations.

 

God bless,

Holly

[texascatholic]

It was sad that during a crying spell today my daughter said she wished she was happy like all of the other "bright, shiny" children she knows.

Also not helpful that my husband is away right now, and she wants Daddy.

[Lori Ann]

I am right with you! My husband is working in Florida right now and our ds and I are missing him terribly. I too am waiting for the zith to really work, but after three weeks we saw a decline in violent rages and major meltdowns. He mostly just gets frustrated and says awful things, then apologizes shortly after. I am hoping this is just the start of the path to recovery. Sorry I could not offer more than a sympathetic ear.

[keeptrying]

I am right with you! My husband is working in Florida right now and our ds and I are missing him terribly. I too am waiting for the zith to really work, but after three weeks we saw a decline in violent rages and major meltdowns. He mostly just gets frustrated and says awful things, then apologizes shortly after. I am hoping this is just the start of the path to recovery. Sorry I could not offer more than a sympathetic ear.

I posted earlier about wondering when zith would work for us too. Today is day 8 and still nothing. My dd has tics only and they are not moving. I am going to post a new thread about other meds to try and see if it is time to move on or stay the course. Have any of your docs given you an idea on when you should see anything. Mine said by 2 weeks. Well 1 week down and I am nervous.

[parents4eyes]

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Edited October 2, 2010 by parents4eyes

[keeptrying]

Hi All,

 

My daughter was having loads of meltdowns today + OCD (but not many ticks). We couldn't bring her to Mass again.

wondering if Zithromax may not be doing its job? We started it last Monday, and I was hoping that after a week would

be up we'd see big differences. Any input? Maybe I have too high of expectations.

 

God bless,

Holly

We had insignificant improvement within two weeks. We knew it was working, though, because prior to treatment, she was getting worse by the day. That progression thankfully stopped with azithromycin. We gave it several more weeks but still not a huge improvement until the doctor doubled her dose (it was very high). Then after 6 to 7 days we saw the big improvements begin.

 

would you mind sharing what dose you started with and then what dose you got up to where you started to see the improvements? You say that the progression stopped with zithro then it was sometime before there was improvement? Did you see anything along the way in terms of getting better or was there just the improvement once the dose was doubled? My dd is on 500mg and she weights 68lbs - I am not sure we could go higher. IF we did, I guess I would need to see something which sounds like what happened for you.

[airial95]

We had very violent rages with my son, and it took about 10 days on the azith before we saw improvements. The first thing to go was the violence - the rages were still there and fierce, but there was no longer any physical violence (biting, kicking, etc...) with them. After about two weeks, the tantrums and rages became more "manageable" (a relative term for those of us on here- I know).

 

The azith has gotten him to about 85% so far - with the primary issue being residual OCD - which our dr and therapist say is now partially our fault (we give in so easily to his rituals - they've become a part of our daily existance and now we're more scared of breaking them than he is!)

[philamom]

We had very violent rages with my son, and it took about 10 days on the azith before we saw improvements. The first thing to go was the violence - the rages were still there and fierce, but there was no longer any physical violence (biting, kicking, etc...) with them. After about two weeks, the tantrums and rages became more "manageable" (a relative term for those of us on here- I know).

 

The azith has gotten him to about 85% so far - with the primary issue being residual OCD - which our dr and therapist say is now partially our fault (we give in so easily to his rituals - they've become a part of our daily existance and now we're more scared of breaking them than he is!)

 

It gave me a sad feeling when you mentioned the dr and therapist saying it's partially your fault. I mean, I know the rituals have to be worked on, but with his age...it must be hard NOT to give in! Do your best...you are dealing with a !@*! alot!!!

[airial95]

 

It gave me a sad feeling when you mentioned the dr and therapist saying it's partially your fault. I mean, I know the rituals have to be worked on, but with his age...it must be hard NOT to give in! Do your best...you are dealing with a !@*! alot!!!

 

I'm actually the first to admit that I'm his biggest "enabler" - especially at breakfast time which has been usually his worst. We had it down to a "dance" - and I'm an excellent dancer!!! There were many days where he was so happy and in such a good mood that I'd be tempted to break his "ritual" - but I'd always chicken out at the last second. I mean, it was such a good morning so far, why risk messing it up?

 

We're now 3 weeks into strongly "attacking" our morning ritual, and while it's been rough, he's responding very well to the therapy and mommy hasn't lost her sanity yet either!

[philamom]

 

It gave me a sad feeling when you mentioned the dr and therapist saying it's partially your fault. I mean, I know the rituals have to be worked on, but with his age...it must be hard NOT to give in! Do your best...you are dealing with a !@*! alot!!!

 

I'm actually the first to admit that I'm his biggest "enabler" - especially at breakfast time which has been usually his worst. We had it down to a "dance" - and I'm an excellent dancer!!! There were many days where he was so happy and in such a good mood that I'd be tempted to break his "ritual" - but I'd always chicken out at the last second. I mean, it was such a good morning so far, why risk messing it up?

 

We're now 3 weeks into strongly "attacking" our morning ritual, and while it's been rough, he's responding very well to the therapy and mommy hasn't lost her sanity yet either!

Kudos to you! It's extremely difficult to tackle...I imagine even harder with a younger child. keep up the strength!!!

[Priscilla]

I felt like after almost 3 wks my dd was not getting any relief from zith. Her biggest problems are OCD and rage. She too expresses wanting to be normal, but seems to angry towards us. We changed to augmentin with still little benefit (better than zith though, and zith really hurt her stomach. We are seeing VERY SLOW improvement, but she has now had 2 dose IVIG. I would say it is more likely the IVIG than abx. I feel the abx really stopped having the benefit after the 1st 6 weeks.

[texascatholic]

Horrible Meltdowns and new tics today. Wondering if the Zith should be abandoned? We are on day 9. What would you do?

I called the dr. and left a message. Does is sometimes get worse before it gets better?????

 

God bless,

Holly

[philamom]

I felt like after almost 3 wks my dd was not getting any relief from zith. Her biggest problems are OCD and rage. She too expresses wanting to be normal, but seems to angry towards us. We changed to augmentin with still little benefit (better than zith though, and zith really hurt her stomach. We are seeing VERY SLOW improvement, but she has now had 2 dose IVIG. I would say it is more likely the IVIG than abx. I feel the abx really stopped having the benefit after the 1st 6 weeks.

If you don't see much improvement after 2 IVIG's, you might consider running the Igenex lyme Western Blot and Mycoplasma to rule out other infections. Just be sure to have it done at least 4 weeks post ivig.

[cobbiemommy]

Horrible Meltdowns and new tics today. Wondering if the Zith should be abandoned? We are on day 9. What would you do?

I called the dr. and left a message. Does is sometimes get worse before it gets better?????

 

God bless,

Holly

This is just a shot in the dark, but could it be some sort of Herxheimer reaction? My son experienced those on Zithromax where he got a little worse before he got better. He never did get to 100% on Zith alone. We are still not to 100%, but better.

[keeptrying]

Horrible Meltdowns and new tics today. Wondering if the Zith should be abandoned? We are on day 9. What would you do?

I called the dr. and left a message. Does is sometimes get worse before it gets better?????

 

God bless,

Holly

 

Holly, I am noticing we are both on day 9 of zithro. I do not have anything to add other than I am anxiously waiting too. I started a new topic today about whether or not to give up on zith and go to another drug. I got some good responses that you might want to read - if you haven't already. I am thinking we need to give it time. I sometimes think my dd's tic are increasing but then not. I am fearful that this is a die off but from what I do not know. Are you doing anything other than the zithro, like probiotics or yeast control. Wondering if it could be some reaction to any of those if you are. Stay in touch. Good luck.