What is the protocol for high dose Azithromyacin?

[momaine]

The advil is for inflammation. Dr. T told me that Advil and Prednisone (the steroid) work in different ways. Both are good for inflammation.

 

Angela

 

Thank you! So how do we find out if there is inflammation? Or do we just assume that there is? I appreciate any and all advice. Sorry if my questions seem a bit stupid.

 

no questions are stupid! Well, a positive response to either Advil or Prednisone (at the right dose) is one indicator. (though not seeing a result from advil doesn't mean it isn't inflammation) Dr. T said he felt like inflammation plays a big role in many if not all of these cases.

 

Angela

[T_Mom]

momaine--If you had a good response to the steroid burst-- that is great (though the dose seems quite low compared to what Dr K suggested to us per weight of the child.)

 

Have you considered another steroid burst along the way to try, while continuing on antibiotics??

[faith]

My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

 

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

 

 

My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil.

 

Got to run. anything else you want to know, just ask.

Angela

 

Is he thinking Lyme might be causing the PANDAS? I think the high doses of multiple antibiotics is typical of a Lyme treatment. Did your dd get an IVIG? How much Advil is she getting and how often. I gave my daughter 400mg of Advil and wham what a difference. I did this twice then the third and fourth time didn't seem to work, so I stopped. Is that just temporary relief... works initially and then stops?

 

 

More often than not I give my dd (90 lbs) 200mg of Advil a.m. and p.m. I occasionally give her an extra if she is struggling. For her, it makes a big difference but I have not stopped giving it to her since I figured out how much it helped, except for the first two days of her steroid burst. (and then because I worried about her stomach) The change is dramatic and it kicks in about a half hour after I give it to her and lasts about 22 hours. I give it twice a day to avoid the difficult time we experienced 22 hours later when giving it only once every 24 hour period.

 

We did a 6 day tapering dose of steroids that were given spread out throughout the day. Day one was the best day, at the higher dose. (24mg that day and of that, 8mg in the a.m. which gave us a noticable change in her symptoms.

 

My dd tested negative for Lyme. When we went to see Dr. T, my dd was already on 2000mg of Augmentin XR. He has had good luck with Zithromax so he wanted her on that drug. There are however, pockets of Zith resistant strep on the east coast and so I THINK (though I'm not positive) he though it was a good idea to do both, just in case, and also since she was tolerating the Augmentin XR well.

 

Late this fall my dd was pretty much non-functional. She could only watch TV and I had to use the remote for her. It took up to 5 hours to get her to brush her teeth, get her pj's on, climb the stairs, get into bed and fall asleep. (she either repeated the whole time or cried because she couldn't do it or raged in agony becasue it was so difficult) She started 20mg Celexa in early Oct. and gained some ground then but still struggled mightily just to get through the day. Ten days into the Celexa she began to do better. We upped it to 40mg and I didn't notice any big changes from that. Nov. 11th she began Augmentin at 1000mg per day. A week later we upped it to 2000mg per day of the XR after reading Saving Sammy.

 

Things began to improve slowly but then a setback after a yeast infection scared me and I decided to get an expert on board so we made an apt. with Dr. T and drove to NJ in MId December. He added 500mg of Zith to her regiment, which also includes Probioics, vitamin D2, vitamin B3, Omega 3's, and DHA, as well as Advil and still the Celexa which I'm afraid to change at this point.

 

She has continued to improve slowly. She has had two setbacks; the first the yeast infection I mentioned and the second a cold which also coincided with her period. She still has some days that are not as good as others, like today where she struggled to walk more and had to repeat more steps and just felt more frustrated overall. But when I compare today to any day this fall before antibiotics, she is MUCH MUCH MUCH better.

 

Today she had some trouble walking and asking reassurance questions. She had a facial tic some. Her vocal one has mostly been gone..though when I hear that sound I always wonder if it is back or just her making a tsk sound like I do when I'm frustrated. So far it hasn't repeated so I think its mostly gone. She did however, shower of her own accord, dress in under 5 minutes (though she repeated some), played on her pc, played wii, watched tv and used the remote, stayed home with her dad (she used to cry if i left), went to let the neighbor's dog out and went into the house herself alone and got the dog from its crate. She did say she hated her stupid self once but that used to be a nightly occurance said while raging and crying and it was said over and over while she asked me continually to just kill her. Today she said it once, then let it pass and moved on. no tears. no raging.

 

oh, and she has not had ivig nor do I know if she could get it. She tested normal on her aso titers, lyme, and the tests she had done to see if her immune system was working correctly. She is a child who was never sick much.

 

More than you wanted to know?

 

Angela

 

Angela,

so do I understand correctly--your daughter takes 2000 Augmentin XR, 'plus' the 500 Azith? both at the same time? and how long now? did the doc say how long to continue that?

 

when you talk of the Advil, do you mean her symptoms all get better for a bit, or just the tics?

 

CharlotteMom, same question.... you see a dramatic improvement in?

 

I get confused about Advil, ... does it reduce inflammation, or does it reduce "pain" from inflammation?...

 

thanks

Faith

[momaine]

momaine--If you had a good response to the steroid burst-- that is great (though the dose seems quite low compared to what Dr K suggested to us per weight of the child.)

 

Have you considered another steroid burst along the way to try, while continuing on antibiotics??

 

We just finished up the last steroid burst but it is certainly something I'm willing to try again. Will have to see what the doctor wants to do.

Angela

[momaine]

momaine--If you had a good response to the steroid burst-- that is great (though the dose seems quite low compared to what Dr K suggested to us per weight of the child.)

 

Have you considered another steroid burst along the way to try, while continuing on antibiotics??

 

T. MOm

 

what dose does Dr. K suggest for prednisone for these kids?

 

Angela

[momaine]

Angela,

so do I understand correctly--your daughter takes 2000 Augmentin XR, 'plus' the 500 Azith? both at the same time? and how long now? did the doc say how long to continue that?

 

when you talk of the Advil, do you mean her symptoms all get better for a bit, or just the tics?

 

CharlotteMom, same question.... you see a dramatic improvement in?

 

I get confused about Advil, ... does it reduce inflammation, or does it reduce "pain" from inflammation?...

 

thanks

Faith

 

Faith,

Yes, she is taking both. Started the Augmentin XR in November (19th) and began the Zith the 18th of December. I don't know how long he will keep her on them, but I do know that I will have to try to take her off the Augmentin XR after this month as I cannot afford it since United Healthcare will no longer pay for it. we could try a slightly lower dose of regular Augmentin at that point and hope that she doesn't back slide. If she does, I'll find a way to pay for it. (I'm sure my parents would help but I hate to ask) Being on the zith too should make a difference.

 

Advil is a pain reliever AND it reduces inflammation. She has no pain (otehr than emotional..wish it helped that!) but it must be reducing inflammation in her brain. It did not help with the tics, but it reduced the OCD by a HUGE amount. I dare say up to 80% depending on the day. It allows her to sleep at night (without it she just repeats [or puts stuff off and cries and rages] for hours while trying to go to bed) and reduces repeating ocd behaviors as well as reassurance questions.

 

Angela

[peglem]

I get confused about Advil, ... does it reduce inflammation, or does it reduce "pain" from inflammation?... unsure.gif

 

thanks

Faith

 

Advil (ibuprofen) is an Nsaid= non-steroidal anti-inflammatory drug (is the "d" for drug?), so I'm guessing its the inflammation that is reduced.

[T_Mom]

momaine--If you had a good response to the steroid burst-- that is great (though the dose seems quite low compared to what Dr K suggested to us per weight of the child.)

 

Have you considered another steroid burst along the way to try, while continuing on antibiotics??

 

T. MOm

 

what dose does Dr. K suggest for prednisone for these kids?

 

Angela

 

I am really sorry Angela, I cannot remember--it has been over a year now. I believe it is on the forum somewhere--

I think it would be worth checking though. Take care--