Some symptoms back even on Azith

[michele]

Rough couple of months here too. How do you readily get the different prescriptions? Which Dr. listen to you? I wonder if the Azith would make a difference for my son? The Omnicef must no longer be working after a year on it. He has been in a bad episode for nine weeks wth major tics and severe moods and now is sick again today wth fevers.

 

I can't find a Dr. to prescribe the azith trial. I am getting pissed about it too. I think I am done being so nice to the ped. She does nothing for us but make referrals which get us no where. We see the psychiatrist Mon. I wonder if they prescribe the antibiotics? I doubt it. Just the psych meds. I am beginning to think the medical community as a whole is failing these kids. If Sweedo knows this exists why isn't she standing up and saying this is the treatment that works. It is deplorable. Has anyone here talked to her personally? How much do these kids need to suffer before the diagnosis will be accepted? Is there anyone we can contact at the NIMH?

 

I think I have heard of a Dr. in Akron who uses clarithromycin for her PANDAS patients. Of course she doesn't accept insurance. I feel like I am banging my head into doors everytime I turn around! This group is my only salvage.

 

 

My doctor told me that Azith makes some kiddos angry and "nasty"...we've had this experience on it and I'm switching back to clarithromycin tonight. However, dd's strep titers weren't touched on the Clarith...it's been a very rough month here.

[Worried_Dad]

I'd personally recommend something other than straight amoxil. Our son was on that for many months, and his illness just seemed to smolder the whole time. As soon as we discontinued it (per doc's advice), the PANDAS came storming back worse than ever. I've read a number of articles that indicate that straight amoxicillin is no longer effective against some kinds of strep.

 

Dr. K prescribes augmentin - amoxicillin "augmented" with clavulanate potassium - which is supposed to be very good at breaking down the enzymes believed to be responsible for antibiotic resistance in many bacteria. I've seen other posters recommend keflex, but we haven't tried that one.

 

Good luck, Indigo!

 

 

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?

[Buster]

We tried 3 months of Amox with no effect. Augmentin seemed to help but we had trouble clearing dd's sister of strep on Augmentin. Azith helped dramatically in June. DD's sister caught strep again in October and was cleared again on Azith. Some folks have success with cephalosporins.

 

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?

[michele]

Is anyone on here buying their child's antibiotics online without a prescription? With the Azith do you give 300 mg once a week? How does this online link look? I thought I could trial a packet since Dr's don't want to prescribe it without a positive culture for strep. What is the usual dosage and how is it given? Is Phizer the usual manufacturer? I am really interested in knowing if azith would work.

 

http://www.1meds.com/zithromax.html

We tried 3 months of Amox with no effect. Augmentin seemed to help but we had trouble clearing dd's sister of strep on Augmentin. Azith helped dramatically in June. DD's sister caught strep again in October and was cleared again on Azith. Some folks have success with cephalosporins.

 

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?

[pmoreno]

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?

 

 

I guess that would depend on whether the strain of strep she gets responds well to augmentin. Dr. K always prescribes it. We've been on it for 2 months. Her ASO titer remains slightly elevated - but not huge (311), but have heard a lot of stories about azithromycin being able to go intracellular and kill the strep that hides in biofilms. Have started zithro for 6 days this morning - but oddly enough she got a little agitated during the day. Not sure if this is what other forum members have been talking about - Many have said that the zith seems to make kids have a "nasty" attitude. Anyway, too early to tell - too late to stop now - don't want to stop the abx before the end of the 6 days now because it could cause more problems if some resistant bacteria remains. After we finish out the course, we'll go back to the augmentin long-term. I have a feeling that her problems are less related to strep right now than viral issues. I will be posting a new thread on PITAND Vs PANDAS. Pat

[TiredMom]

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?

 

 

I guess that would depend on whether the strain of strep she gets responds well to augmentin. Dr. K always prescribes it. We've been on it for 2 months. Her ASO titer remains slightly elevated - but not huge (311), but have heard a lot of stories about azithromycin being able to go intracellular and kill the strep that hides in biofilms. Have started zithro for 6 days this morning - but oddly enough she got a little agitated during the day. Not sure if this is what other forum members have been talking about - Many have said that the zith seems to make kids have a "nasty" attitude. Anyway, too early to tell - too late to stop now - don't want to stop the abx before the end of the 6 days now because it could cause more problems if some resistant bacteria remains. After we finish out the course, we'll go back to the augmentin long-term. I have a feeling that her problems are less related to strep right now than viral issues. I will be posting a new thread on PITAND Vs PANDAS. Pat

 

 

Hi Pat,

My 10yr old DD started a 30 day trial of Azith on Nov. 15. The first 2 weeks were an improvment, but I must say she has had some significantly nasty moods recently. This is the first time I have heard that Azith is associated with bad moods. My searches of this website (I'm not that skilled) aren't able to turn anything up. Can you point me to a thread? Has anyone else had this experience with Azith? Thanks! Peggy

[EAMom]

I haven't heard anything about the Azith. causing bad moods either (until Indigo mentioned it!)?

 

Our dd's mood definitely improved on Azith.

 

Ditto what Peggysue said about a search re. Azith. and bad moods...couldn't find anything.

[michele]

Okay yesterday we went to the psychiatrist who supposedly knows PANDAS through their office. So she is thinking the moods are related to the ADHD. For the time being until she reviews the complex history upped the Abilify to 5MG AM and 2.5 in the PM. She won't touch the antibiotics and said that is for the immunologist. I am still back here trying to get a trial of the Azith. How did those of you who use it get it so easily? We were good on Omnicef for a year but it must have stopped working. Are others here being treated for ADHD with anxiety? That seemed to be where she was going with this. We go back in Jan. when she may change the meds. In the mean time I hope upping the Abilify helps because he is really agitated.

 

Michele

I haven't heard anything about the Azith. causing bad moods either (until Indigo mentioned it!)?

 

Our dd's mood definitely improved on Azith.

 

Ditto what Peggysue said about a search re. Azith. and bad moods...couldn't find anything.

[peglem]

Okay yesterday we went to the psychiatrist who supposedly knows PANDAS through their office. So she is thinking the moods are related to the ADHD. For the time being until she reviews the complex history upped the Abilify to 5MG AM and 2.5 in the PM. She won't touch the antibiotics and said that is for the immunologist. I am still back here trying to get a trial of the Azith. How did those of you who use it get it so easily? We were good on Omnicef for a year but it must have stopped working. Are others here being treated for ADHD with anxiety? That seemed to be where she was going with this. We go back in Jan. when she may change the meds. In the mean time I hope upping the Abilify helps because he is really agitated.

 

Michele

What I'm wondering is why you're having such a tough time getting a doctor to try zith. Have you asked them point blank why they do not want to use it? For us, we spent about 2 years trying everything under the sun to clear the strep. The doc was hesitant to use zith prophilacticly...because it builds up in the liver (and other tissues). We do a liver check every 6 months. But, bottom line, Zith was the thing that worked the best, so that's what we went with. BUT, my daughter is only on it 5 days, then 7 days off to let it clear out of her liver, then 5 days on again. At first days 5,6, and7 off of it were pretty bad behaviorally. Now, after almost a year, we see a bit of an increase on day 7 off, but its getting better. Can Dr. K tell you any physicians in your area that he has worked with before? I think it helped that I'd already had a good long term relationship with my daughter's pediatrician- trying to get a new physician to understand and accept the history would be difficult. It also helped that her doc saw her ragey behavior 1st hand so understood the very real need to do something, even if it is a bit outside the normal course of treatment.

[michele]

I will ask his ped point blank as you say. She feels this is out of her realm and would prefer the nuero or immunologist to prescribe antibiotics long term. Dr. K did not know of anyone to suggest. He doesn't promote azith anyway from what I have read. I think he suggests amox. I feel I may have thrown away $300 because who is going to do his protocal? Our dept head immunolgist we were using who prescribed the omnicef left the hospital. The new Dr's said that is out of their realm. I have used the local children's hospital immunolgist and neuro but they would only prescribe pen vk. So I am back at square 1. I have thought about finding a DO who might be more flexible. I am concerned about all these Dr's and what their impact will be on my son longterm. Today we see the child psych. He has seen a ton of Dr's over the past six years. Will that scar their childhood? I am considering ordering the Azith online. Has anyone done that without a script?

 

Michele

Okay yesterday we went to the psychiatrist who supposedly knows PANDAS through their office. So she is thinking the moods are related to the ADHD. For the time being until she reviews the complex history upped the Abilify to 5MG AM and 2.5 in the PM. She won't touch the antibiotics and said that is for the immunologist. I am still back here trying to get a trial of the Azith. How did those of you who use it get it so easily? We were good on Omnicef for a year but it must have stopped working. Are others here being treated for ADHD with anxiety? That seemed to be where she was going with this. We go back in Jan. when she may change the meds. In the mean time I hope upping the Abilify helps because he is really agitated.

 

Michele

What I'm wondering is why you're having such a tough time getting a doctor to try zith. Have you asked them point blank why they do not want to use it? For us, we spent about 2 years trying everything under the sun to clear the strep. The doc was hesitant to use zith prophilacticly...because it builds up in the liver (and other tissues). We do a liver check every 6 months. But, bottom line, Zith was the thing that worked the best, so that's what we went with. BUT, my daughter is only on it 5 days, then 7 days off to let it clear out of her liver, then 5 days on again. At first days 5,6, and7 off of it were pretty bad behaviorally. Now, after almost a year, we see a bit of an increase on day 7 off, but its getting better. Can Dr. K tell you any physicians in your area that he has worked with before? I think it helped that I'd already had a good long term relationship with my daughter's pediatrician- trying to get a new physician to understand and accept the history would be difficult. It also helped that her doc saw her ragey behavior 1st hand so understood the very real need to do something, even if it is a bit outside the normal course of treatment.

[EAMom]

I think Dr. K. uses a lot of Augmentin (stronger than Amoxicillin).

 

How frustrating for you!!

 

I think if I were you I would just check into a hotel in Chicago for 1-2 weeks so you could do the steroid burst under Dr. K. Then do IVIG with him if that shows benefit.

 

I agree with Dr. K about weaning off the pscyh drugs (not increasing them)...they really will muddy the waters (as to whether the Azith. or pred is helping) and are a not necessarily effective, just a bandaid to your child's problem. I hate that your docs keep "passing the buck"!

 

Even if you end up doing Azith. 5 days on, 5 days off (or something) I would at least *initially* do a full (at least) 30 days to see if it works.

 

I find it so baffling that your docs are willing to do everything but Azith....higher doses of Abilify, SSRI's, risperdal. Could you ask them point blank, what carries more risk, the 30 d. trial of Azith. or all these other drugs (with black box warnings, risks of tardive dyskensia, problems with withdrawal, etc)?

 

Today we see the child psych. He has seen a ton of Dr's over the past six years. Will that scar their childhood?

 

Hang in there Michele. I think it may have an effect, but also how you respond and act will too... kids are resiliant. Continue to be an advocate for your child. Have you read "Against Medical Advice" by James Patterson/Hal Friedman?

[michele]

The book is awesome. I couldn't put it down although the beginning was a rough read! I have thought of taping the behaviors. In fact D. Gilbert in Cinn., OH wanted a tape of him doing it early on if we were to see him. I couldn't remember if it was Aug or Amox Dr. K used. He didn't seem to want us to come there. He thought a Dr. here should be able to do the regiment but who? These Dr's out of state don't help if you can't get the scripts and follow up. Well don't you agree neuologist and psychiatrists write alot of scripts for mood altering drugs. That is their business. What is the exact dose and type of Azith you use and the amounts per day etc? Some here do so many days on then days off. I am not sure of its dosage?

 

Michele

I think Dr. K. uses a lot of Augmentin (stronger than Amoxicillin).

 

How frustrating for you!!

 

I think if I were you I would just check into a hotel in Chicago for 1-2 weeks so you could do the steroid burst under Dr. K. Then do IVIG with him if that shows benefit.

 

I agree with Dr. K about weaning off the pscyh drugs (not increasing them)...they really will muddy the waters (as to whether the Azith. or pred is helping) and are a not necessarily effective, just a bandaid to your child's problem. I hate that your docs keep "passing the buck"!

 

Even if you end up doing Azith. 5 days on, 5 days off (or something) I would at least *initially* do a full (at least) 30 days to see if it works.

 

I find it so baffling that your docs are willing to do everything but Azith....higher doses of Abilify, SSRI's, risperdal. Could you ask them point blank, what carries more risk, the 30 d. trial of Azith. or all these other drugs (with black box warnings, risks of tardive dyskensia, problems with withdrawal, etc)?

 

Today we see the child psych. He has seen a ton of Dr's over the past six years. Will that scar their childhood?

 

Hang in there Michele. I think it may have an effect, but also how you respond and act will too... kids are resiliant. Continue to be an advocate for your child. Have you read "Against Medical Advice" by James Patterson/Hal Friedman?

[pmoreno]

Is anyone on here buying their child's antibiotics online without a prescription? With the Azith do you give 300 mg once a week? How does this online link look? I thought I could trial a packet since Dr's don't want to prescribe it without a positive culture for strep. What is the usual dosage and how is it given? Is Phizer the usual manufacturer? I am really interested in knowing if azith would work.

 

http://www.1meds.com/zithromax.html

We tried 3 months of Amox with no effect. Augmentin seemed to help but we had trouble clearing dd's sister of strep on Augmentin. Azith helped dramatically in June. DD's sister caught strep again in October and was cleared again on Azith. Some folks have success with cephalosporins.

 

My doctor wants to try Amoxicillin for her now...anyone have success with that anti for PANDAS?

 

Gaby started on 200 Mg. per day for 6 days on Sunday. I'll let you know if it works. Pat

[Dedee]

Yes, we use Amoxicillin for our son. He takes 250mg twice daily. He has been on this for about 19 months now and is doing very well. Dr. Murphy suggested that we stick with the milder antibiotic as long as it is working. If we start seeing any symptoms coming back we will switch to something stronger. We feel very fortunate that it has worked so well thus far. Keeping our fingers crossed. I hope you get good results.

 

Dedee

[EAMom]

Michele...I have an awful idea. (I'm thinking like an psycho PANDAS mom!)

1) wean ds off psych. meds

2) take him somewhere with Poison Ivy

3) let him play in it

4) take him to the dermatologist when the awful rash/itching starts where they'll write him a script for Pred.

5) watch his PANDAS symptoms improve while on the steroids (for the rash)

 

But seriously, my friend's dd got into poison ivy (or Oak, I can't remember)...they put her on steroids (fairly high doses). I just had to laugh since they'll do steroids in a flash for something like that...but not for PANDAS (to see if IVIG would work!).

 

My dd is on 250mg Azith /day (since June). (We are thinking of IVIG so we don't have to do this another 10 years.)