PANDAS and Antibiotics

[emma1]

My daughter has a PANDAS-like isssue, and has found amoxicillin worked well (some tics/ocd, but dramatically improved), and augmentin worked exceptionally well (no symptoms worth mentioning). We will be going off augmentin next week, so I made an appointment, and went in to speak with the doctor this morning. I took in a lot of the information on zithromax, etc., though ended up not giving it to my doctor. (I chickened out, but he did seem to know quite a bit.)

 

His recommendation was to stop augmentin after a two week full dose. Then, he is recommending Pen V 250 mg twice a day, long term. He said he believes we should try the Pen V first. I had asked to stay on augmenin, or to try zithromax. He said he believed it was best to start with the most basic antibiotic, which he considers Pen V. He said if the Pen V does not work, he would consider switching to augmentin or Pen V -- but seemed very firm that starting with Pen V was the way to go. He also said something about Pen V being used after someone had rheumatic fever to ensure that they did not get it again.

 

I feel fortunate that my doctor will give antibiotics (without us traveling to a specialist) but am not convinced that Pen V is a good choice. Is anyone having good results with Pen V? Any positive (or other) experiences would be so appreciated.

 

Michele, if you are reading, I did ask about that other illness. He seemed to think that since she was having only a vocal tic (nothing physical), it was more than likely more PANDAS related. I also asked about pyroluria, and suprisingly, he didn't seem to know that much about it, but said he would check. I found that very strange that he didn't know about it (maybe I was mispronouncing it or something) -- but it is obviously not something he runs into every day.

[ad_ccl]

I think that is the regular way of going - and what my ID suggested too - we were on amox. for a couple of years -and then it stopped working - I think you are going in the right direction - I would start on it and be sooo glad that he is willing to look at other antibiotics if you are not having success. If amox was still working I would have stayed on that.

 

My ped knew nothing about pyroloria either - he did look it up after.

[trubiano]

My son is on the PCN V and has done great on it. His tics are gone. When PANDAS comes back it is OCD/emotional issues. At first my PED had him doing Bicillin LA injections every three weeks because he couldn't swallow pills. It worked well, but was very painful for him. I waited a week past the time he should have gotten his next injection before starting the oral PCN to see how he would do and the tics came back strong! I won't try weaning for a LONG time!

[kim]

I think this would be a good thread for the proposed "stickies"

 

This is another one with good info on anti biotic use for PANDAS symptoms

 

http://www.latitudes.org/forums/index.php?...c=2458&st=0

[michele]

At first pen v took away my son's repetitve finger cracking for about a month and a half then it came back. Since we've tried omniseph and augmentin currently. Neither are working as well as I'd like the tics are still there but emotionally he is better and his compulsiveness seems better. Of course we have had alot of colds, flu and sore throats since Aug in our house. He still seems to need to urinate often though which is a kind of compulsion. Do others have even tics? For example if he cracks on the right he has to crack on the left? If he cracks twice on the right he cracks twice on the left. Also cracks his toes now. I wish we could try Zith. I am working on it with DAN Dr. Demio. It may be the right one for him. I am happy pen v is working for you.

Michele

 

My son is on the PCN V and has done great on it. His tics are gone. When PANDAS comes back it is OCD/emotional issues. At first my PED had him doing Bicillin LA injections every three weeks because he couldn't swallow pills. It worked well, but was very painful for him. I waited a week past the time he should have gotten his next injection before starting the oral PCN to see how he would do and the tics came back strong! I won't try weaning for a LONG time!

[emma1]

Michele, Did Dr. Murphy know about pyroluria? My doctor had heard of it, but had never diagnosed anyone with it or even tested anyone for it, and he has been a pediatrician for 30 years! I was so surprised when he said that -- and mostly was centered on making sure I was getting some type of antibiotic -- that I forgot to go back and pursue it with him. I guess my question is -- is pyroluria new, or is it something (like NAET perhaps) that conventional medicine does not address? Is it something I would need to try and find a DAN if I wanted to pursue.

 

Also, are you pursuing these other avenues because the antibiotic is not working the way you want for you son?

 

I am trying to figure out if there is more I should be doing. I received the Everyday vitamins from Kirkman yesterday -- I chose them because all the vitamins seemed mainstream and at lower doses -- yet I am afraid to even give her those. I had found Carlsons fish oil, with only Omega 3, but it too is sitting unopened on the shelf. As she is OK right this second, I am so afraid to do anything to rock the boat.

 

Of course, I am rocking the boat, as we are now off augmentin and onto Pen V and I am literally holding my breath.

[michele]

Pyrrole goes by the name mauve factor also. According to our DAN it has been around for years as mauve factor. The DAN Dr does the testing for this. I showed the test and resulets to Dr. Murphy she and Dr. Gaines looked at it but it was not something they really test for either. She said it was one man's research project and idea. I have been giving Andrew zinc, and taurine for three days and he seems much improved today. 500 mg Taurine and 25 mg. of zinc picolinate. After four days of stopping omega 3's we are to start the GLA at 300 mg. twice a week. It is the Omega 6's and9's. Also after four days of the zinc picolinate I am to up him to 50 mg. Eventually we may need to go to 100 mg. I have not bought any other supplements yet. I know he wants him on individualized amino acids and nystatin but I am unsure yet of them and why I can't get them at a regular pharmacy that compounds.

 

I went the DAN route because I wanted to get some answers and get some personal attention and found I was not getting that in the traditional route. I am still sticking to neurologist and pediatrician, and immunologist for their imput too. I am hoping Dr. Demio the DAN DR. may write a script fot azith when the other won't. I see his neurologist Tues. about the tics being worse. I have not seen him since May and he is out of the loop about what we have tried. You know the saying it takes a small village. I figured I'd pick all there heads and put it all together and try to find some answers. A DAN is expensive but in our cases with such anunusual disorder they take the time to research and find what works best based on your shild history.

 

Also our DAN said this autoimmune strep disorder is not such a new disorder. Dr. Rammelcamp was one of the forefounders of it and tics and virals being tied together. He was the inventor of strep testing. Also the terms syndromes chorea and rheumatic fever are more accepted diagnosis in the medical world then PANDAS. Also he mentioned the term autoimmune nephritis. FYI

Here is a good article. I hope your daughter continues to do well.

 

http://intramural.nimh.nih.gov/pdn/pub-2.pdf

 

Michele

 

 

Michele, Did Dr. Murphy know about pyroluria? My doctor had heard of it, but had never diagnosed anyone with it or even tested anyone for it, and he has been a pediatrician for 30 years! I was so surprised when he said that -- and mostly was centered on making sure I was getting some type of antibiotic -- that I forgot to go back and pursue it with him. I guess my question is -- is pyroluria new, or is it something (like NAET perhaps) that conventional medicine does not address? Is it something I would need to try and find a DAN if I wanted to pursue.

 

Also, are you pursuing these other avenues because the antibiotic is not working the way you want for you son?

 

I am trying to figure out if there is more I should be doing. I received the Everyday vitamins from Kirkman yesterday -- I chose them because all the vitamins seemed mainstream and at lower doses -- yet I am afraid to even give her those. I had found Carlsons fish oil, with only Omega 3, but it too is sitting unopened on the shelf. As she is OK right this second, I am so afraid to do anything to rock the boat.

 

Of course, I am rocking the boat, as we are now off augmentin and onto Pen V and I am literally holding my breath.

[emma1]

Michele, Thanks for the information. Did you say that you are stopping the Coromega? Does the DAN think that Andrew is reacting to the fish oil, or is there another reason -- I thought that was one of the (few) things that Dr. Murphy recommended. Are you still on the multi, or did you stop that too? I am so glad you are seeing improvement!!!

 

(I am wondering in part because when we were on the first antibiotic I saw a major improvement, but there were some symptoms. When I was giving that antibiotic, I was also giving a cupful of other pills at the same time, and I am wondering if they somehow interfered with the antibiotic working. With this second antibiotic, I have been giving it and the probiotic and that's it -- and we have had a much better response. It could be the amoxil is less effective than the augmentin -- or my child could have been reacting to one of the other pills -- or one of the other pills could have been diminishing the effect of the amoxil.)

 

I don't know if I should stop since I am seeing improvement (I think Dedee did that) or keep trying to find answers because one day the antibiotics might not work.

[heveritt1]

It seems no mater which forum I pick, all the stories sound the same as mine. Everyone has done so much research already, I find that I seem to know more than any of the doctors I see. My son started an eye tic about a year ago, his ASO test was high and antibotics worked almost immediatly. Our youngest just happens to bet this skin infection over and over and the oldest will start with the tic, ADHD symptoms and wetting his pants and even speaking in these choppy sentances. We even had his tonsils out in August. After the PED said for us to leave him on Amox for 1 year we kind of freaked and started looking for more reasons/help. Little did I know what kind a of a mess would be started.

His eye tic came back really bad about 4 weeks ago, it was onset in a flash it was back. The following weeks he has a tough time at school, getting in trouble, etc. We started with Amox, went to Kephlex for 10 days them Clindomyson (spelling?) for 10 days, now back to Amox. Nothing seemed to work until this week when we started back with the Amox, however, we also have taken Casien (the best we can) our of his diet and food coloring/ etc. Anyway, we got in at Duke Infectious Des. dept, and after 4 hours of talking about PANDA's, she basically said, see a Neurologist. Seems doctors have a huge problem dignosing PANDA's.

She said PANDAS should not be treated with more than 5 days of antibotics, and we should give him 10 more days then stop. I told her I was really worried because it had gotten so much better (ofcourse he did not tic the entire 4 hours we were there), I am afraid if we take him off, it will start right back up. She just looked at me and said "well, if that happens then I would be very interested in knowing". I also went to an immunologist and might schedule an IGG test. The Imm doc had never heard of PANDAS. So next up is the neurologist, the phycologist and a naturalpath (for help with supplements). Anyway, it is so hard to watch him strugle and to miss out of candy, TV and things like that. He is handling it pretty well so far, it is just all so hard. Do any of your kids compain of headaches also? must go, baby crying.

good luck to all. Look forward to learning more tomorrow.

 

Pyrrole goes by the name mauve factor also. According to our DAN it has been around for years as mauve factor. The DAN Dr does the testing for this. I showed the test and resulets to Dr. Murphy she and Dr. Gaines looked at it but it was not something they really test for either. She said it was one man's research project and idea. I have been giving Andrew zinc, and taurine for three days and he seems much improved today. 500 mg Taurine and 25 mg. of zinc picolinate. After four days of stopping omega 3's we are to start the GLA at 300 mg. twice a week. It is the Omega 6's and9's. Also after four days of the zinc picolinate I am to up him to 50 mg. Eventually we may need to go to 100 mg. I have not bought any other supplements yet. I know he wants him on individualized amino acids and nystatin but I am unsure yet of them and why I can't get them at a regular pharmacy that compounds.

 

I went the DAN route because I wanted to get some answers and get some personal attention and found I was not getting that in the traditional route. I am still sticking to neurologist and pediatrician, and immunologist for their imput too. I am hoping Dr. Demio the DAN DR. may write a script fot azith when the other won't. I see his neurologist Tues. about the tics being worse. I have not seen him since May and he is out of the loop about what we have tried. You know the saying it takes a small village. I figured I'd pick all there heads and put it all together and try to find some answers. A DAN is expensive but in our cases with such anunusual disorder they take the time to research and find what works best based on your shild history.

 

Also our DAN said this autoimmune strep disorder is not such a new disorder. Dr. Rammelcamp was one of the forefounders of it and tics and virals being tied together. He was the inventor of strep testing. Also the terms syndromes chorea and rheumatic fever are more accepted diagnosis in the medical world then PANDAS. Also he mentioned the term autoimmune nephritis. FYI

Here is a good article. I hope your daughter continues to do well.

 

http://intramural.nimh.nih.gov/pdn/pub-2.pdf

 

Michele

 

 

Michele, Did Dr. Murphy know about pyroluria? My doctor had heard of it, but had never diagnosed anyone with it or even tested anyone for it, and he has been a pediatrician for 30 years! I was so surprised when he said that -- and mostly was centered on making sure I was getting some type of antibiotic -- that I forgot to go back and pursue it with him. I guess my question is -- is pyroluria new, or is it something (like NAET perhaps) that conventional medicine does not address? Is it something I would need to try and find a DAN if I wanted to pursue.

 

Also, are you pursuing these other avenues because the antibiotic is not working the way you want for you son?

 

I am trying to figure out if there is more I should be doing. I received the Everyday vitamins from Kirkman yesterday -- I chose them because all the vitamins seemed mainstream and at lower doses -- yet I am afraid to even give her those. I had found Carlsons fish oil, with only Omega 3, but it too is sitting unopened on the shelf. As she is OK right this second, I am so afraid to do anything to rock the boat.

 

Of course, I am rocking the boat, as we are now off augmentin and onto Pen V and I am literally holding my breath.

[michele]

Emma,

Yes we are off the omega 3's for 4 days then we will add GLA which is omega 6's and 9's. I think Pyrrole can have adverse reactions to omega 3's. Dr. Murphy did recommend omega 3's specifically coromega but said if we have any complications then by all means stop them because not everyone handles them well. After three weeks I am supposed to go back to pen v after augmentin. Now I wonder how well we we do on that after the stronger antibiotic. augmentin would be stronger then amoxil.

 

What do you mean by stop? Do you mean stop searching for answers? I know during periods that we were better I let up some. That is probably why I had never gone the antibiotic route until May when the tics grew worse and the OCD. When it improves you start to get a false hope that it is gone but in our case it always reappears its ugly head. I pray your daughter will only have this one episode and she will be past this. After five years I have seen the cycle and think it has alot to do with exposure to strep for us. It seems the longer we have had this that we also see changes with exposure to other illnesses like colds and flu.

 

My prayer is that this pyrrole will make a difference with proper treatment. I just realized about an hour ago when Andrew had diareah, that I accidently gave Andrew a full dose of taurine this morning instead of a half. They are 300 mg. I forgot to cut the pill. It is a new one for us and I have only given it twice and it slipped my mind. Although the finger cracking on his face was way down today, the taurine dosage may have played a role in it. Dr. Demio said in helping with the pyrrole the mind starts to realize socially accepted behaviors and he may think before cracking against his face.

All the best.

 

Michele

 

Michele, Thanks for the information. Did you say that you are stopping the Coromega? Does the DAN think that Andrew is reacting to the fish oil, or is there another reason -- I thought that was one of the (few) things that Dr. Murphy recommended. Are you still on the multi, or did you stop that too? I am so glad you are seeing improvement!!!

 

(I am wondering in part because when we were on the first antibiotic I saw a major improvement, but there were some symptoms. When I was giving that antibiotic, I was also giving a cupful of other pills at the same time, and I am wondering if they somehow interfered with the antibiotic working. With this second antibiotic, I have been giving it and the probiotic and that's it -- and we have had a much better response. It could be the amoxil is less effective than the augmentin -- or my child could have been reacting to one of the other pills -- or one of the other pills could have been diminishing the effect of the amoxil.)

 

I don't know if I should stop since I am seeing improvement (I think Dedee did that) or keep trying to find answers because one day the antibiotics might not work.