PANDAS and Penicillin

[jacobsmom]

My 10 year old has PANDAS and we are treating him with long term Penicillin twice a day. It seems from my reading that most of the PANDAS mom's who's kids use antibiotics have prescriptions for thier kids for Azith. Is there anyone who has a history of or is currently treating their child with Penicillin? Are we the only ones? We are wanting to get him off of these but I am so afraid of how he will react. We tried a week ago by cutting the pills in half for five days. He had major setbacks with rage, ocd, separation anxiety, etc. It was really bad. So he is back up to 250 mg twice a day. Any one else with a history of Penicillin treatment for PANDAS that helped your childs symptoms?

[ad_ccl]

We used amoxycillin for 18 months with some good results - although not at all as good as we have seen with azithromycin. We went off amox in the summer to see how he would do and it was terrible, he started having vocal tics every second. We went back on amox and it was no longer working - we tried several other antibiotics until trying azithromyin - tics were gone within a couple of days. We were on 5ml once a day of amox - it is nice with azith as it is every 5 days. We have seen amazing results - and when he does get sick, while some tics do emerge the emotional laibility seems to be gone. I think with PANDAS- you do what works best for you - symptom wise - you will know what is working. Sounds like the penicillin is working for you - lots of kids have been on that long term from what I have read on other boards.

[Ronnas]

Many children are on penicllin prophylactically for PANDAS and penicillin is still (I think) the recommendation from the NIMH. To make a really long story short because I have to get my kids to bed...we stumbled on to PANDAS when my son was treated for a post-op infection with keflex, we switched to pen vk, he did not respond to the pen vk, back to keflex and then further down the line with clindamycin....now azithromycin. We have had the absolute best results with azithromycin over the last 6 months and I am very please with how much easier it is...once a week! If the penicllin is working for your daughter I would stick with it and keep azithromycin as an option down the road.

 

Like Alison, we took our son off the prophylactic antibiotic, we had a rocky road and now I will keep him on the prophylactic antibiotics (azithromycin) indefinetly...most likely through the teenage years for sure.

 

Ronna

[dominique]

Many children are on penicllin prophylactically for PANDAS and penicillin is still (I think) the recommendation from the NIMH. To make a really long story short because I have to get my kids to bed...we stumbled on to PANDAS when my son was treated for a post-op infection with keflex, we switched to pen vk, he did not respond to the pen vk, back to keflex and then further down the line with clindamycin....now azithromycin. We have had the absolute best results with azithromycin over the last 6 months and I am very please with how much easier it is...once a week! If the penicllin is working for your daughter I would stick with it and keep azithromycin as an option down the road.

 

Like Alison, we took our son off the prophylactic antibiotic, we had a rocky road and now I will keep him on the prophylactic antibiotics (azithromycin) indefinetly...most likely through the teenage years for sure.

 

Ronna

Hello Ronna, My name if Dominique and my son as far as I know had his first episode with Strep back

in January 2006. He woke up with a headache and had severe congestion for the past few weeks.

He suddenly started with neck jerking and then finger jerking and a week later the OCD arrived with

vengence. He then complained of a sore throat so I took him to our family doctor who then took a

swab of his throat. It was cultured and with positive results of strep A. The doc put him on amoxicillin

250 mg. two times a day for 10 days. Ticking and ocd reallyimproved while on antiobiotics for those 10

days. Another culture was taken and it once again was positive. The doc then put him on augmentin

250 mg. twice a day for 10 days. Symptoms improved but returned when finished. Once again we had

a culture done and it was positive. My doc said he was just a carrier and there was nothing really he could

further recommend. I immediately went home and started my sleuth work. I discovered Sheilla Rodgers

who calmed me down when I was pretty convinced that my son had Pandas. Since that day ive done

every test you can imagine for metals yeast allergys etc. and finally a Pandas Panel which he had

several abnormalties and extremely high antigens.. Hes had that 1 episoded and in May 06 the symptems

pretty much declined. Today he symptom free with occassional anxiety. Im still convinced that he still has

the strep infection that was never addressed. I Dont think amoxicillin was strong enough. Dont the high

antigens in his blood prove that hes got an infection verses a carrier state? Now after reading everything i

can about pandas i feel like i still have so many unanswered Questions. Ive been to several doctors one

ent. doc says he thinks there harbored in his tonsils and adnoids. and he thinks we should have them taken

out at once. Were scheduled to that next month. I havent read anywhere about anyone doing this as a

preventitive measure and if they have gotten positive results from doing it. Im so desperate ill do anything

if it helps my son. I feel mayb e i should take him out of his school and homeschool him so he doesnt catch

the strep again. Im living in constant fear. I cant seem to sleep worring constantly. I wanted him to go

on a stronger antibiotic like a round of clyndamyacin for 10 days thinking maybe that might erradicate this strep once and foreall. Now i hear that the symptoms can not only return after antiobiotics but also get worse . Im scared to put my son bythe way hes 7 years old,on antibiotics full time when he seems so well

today. Do I wait until he has another strep episode? Would i give him Clyndamycin iif and when hes gets

another strep? or do i do nothing but just wait. Can a child have one episode of an auto immune reaction

to strep and never again? Have you heard of anyone having sucess with tonsil removal. His tonsils looked

really good but his adnoids were huge. I f they find where its harboring and remove it does that ger rid

of the antigens? Im so totally confused at this point I dont know where to turn. I live in San Francisco and

cannot find anyone to help and I desperately would love to talk with another mom with a chid with Pandas.

If tonsils removel was the cure wouldnt we know by? it seems like such a easy sollution to such a big

problem. Do you think taking a stronger dose one more time of /clyndamyacin woul d make my son

start ticking again and ocd return? Im giving himnutrients to strenghten his immune system and probiotics

now im reading that that could overstimulate his immune system. He had high metals and low gluthione levels so im now giving him gluthione. Sounds like thats not good either. Im also been giving him probiotics

twice a day to strenghten his immune system so hes not vulnerable to catching strep again. Sounds like thats not a good idea either. Have i been doing more harm than good the past 6 months? He seems great

it all seemed to be working. but now winter is back and Im terrified. Please can you or anyone else help

me? Can you recommend adoc in my area? If he gets another episode of step does the symptoms come

back strongerwith each episode? Have you ever seen a child get it one time and never again?Im so sorry

for all of these questions but i am totally lost. Hopefully im catching this early enough before damage is

done to his nervous system and basil ganglia. Please if you could answer me at your convenience is would

so appreciate it. Surgery is scheduled for next week. Thankyou so much.

So sorry for all the mispellings but im am not very tech savy and not much of a typist.

 

Best regards,

 

Dominique

[colleenrn]

My daughter was diagnosed with PANDAS almost five years ago. To make a very long story short, as far as antibiotics go, Amoxicillin worked the first 3-4 bouts of strep, then stopped working. We tried Pen VK and Augmentin, but eventually those also stopped working. We finally put her on Clindamycin and within 24 hrs. she was tic free, but everytime we tried to stop the Clindamycin the tics would return within 1-2 days. We then got her tonsils and adenoids out and she was strep free for 1 1/2 years!! Her tonsils and adenoids were so infected with strep, so the antibiotics would begin to work, but we could never fully get rid of the strep. By removing them, we removed the main source of strep. When she started getting strep again 1 1/2 years later we tried Amoxicillin and it would seem to start working for a few days, but then as her symptoms were going away they would return again. We then switched to Augmentin (Amoxicillin with something added to it) with great results for a while. Eventually the Augmentin did not work either. I found out soon thereafter that there is a 25% failure rate with Penicillins for strep throat and although you read it everywhere that is is the best treatment, IT IS NOT.

Please read this article b/c it explains the best treatment for strep is Cephalosporins. Good luck!

 

http://www.medicalnewstoday.com/medicalnews.php?newsid=35136

[kim]

colleenrn,

 

Hi Colleen. I only had a minute to read through the article you posted, but I would really like your opinion on something.

 

This comes from a Mom, who has two sons with a tic syndrome. They both have a heavy history of strep, and repeated amox. use, and other antibiotics.

 

My oldest son also had a staph infection, which cleared and then reoccured, about 1 year ago, after a minor surgery (mole removal). Keflex was prescribed, after doxycycaline (sp?). My youngests son, had two bouts of pneumonia, a couple of years ago. Again, he had been on many antibiotics.

 

I have learned a bit about commensal bacteria, and the voids that are created, when bacteria, that in many instances, live in harmony in/on our bodies, until something interfers. Some of this, came from studying vaccinations.

 

Anyway, what I'm really wondering, is WHEN is the medical community, going to at least recognise the importance of probiotics in relationship to the antibiotics?

 

I used to feel, that it was safe to take my sons around infants, elderly (we had great grandparents in their 90's) etc. because they had been on lots of antibiotics. Now, I realize that you can harbor some pretty nasty bacteria, when you have been on antibiotics, which my not make the carrier ill, but can be transmitted.

 

I'm wondering if you have any thoughts on this, and if you use probiotics with your daughter?

 

When you have a minute, I would really like your opinion on this;

 

http://jac.oxfordjournals.org/cgi/content/full/48/4/463

[colleenrn]

colleenrn,

 

Hi Colleen. I only had a minute to read through the article you posted, but I would really like your opinion on something.

 

This comes from a Mom, who has two sons with a tic syndrome. They both have a heavy history of strep, and repeated amox. use, and other antibiotics.

 

My oldest son also had a staph infection, which cleared and then reoccured, about 1 year ago, after a minor surgery (mole removal). Keflex was prescribed, after doxycycaline (sp?). My youngests son, had two bouts of pneumonia, a couple of years ago. Again, he had been on many antibiotics.

 

I have learned a bit about commensal bacteria, and the voids that are created, when bacteria, that in many instances, live in harmony in/on our bodies, until something interfers. Some of this, came from studying vaccinations.

 

Anyway, what I'm really wondering, is WHEN is the medical community, going to at least recognise the importance of probiotics in relationship to the antibiotics?

 

I used to feel, that it was safe to take my sons around infants, elderly (we had great grandparents in their 90's) etc. because they had been on lots of antibiotics. Now, I realize that you can harbor some pretty nasty bacteria, when you have been on antibiotics, which my not make the carrier ill, but can be transmitted.

 

I'm wondering if you have any thoughts on this, and if you use probiotics with your daughter?

 

When you have a minute, I would really like your opinion on this;

 

http://jac.oxfordjournals.org/cgi/content/full/48/4/463

[colleenrn]

Sorry about the last post! I am very new to this forum (not new to PANDAS) and I have not gotten the hang of how to post to a specific topic. PLUS I am 99% of the time holding and nursing my almost six month old baby while typing. I was trying to respond to Kim about probiotics. I use one that I get from my doctor called Mega Flora and I think it helps counteract the effects of the antibiotics. You asked when the medical community is going to get with the idea of the importance of probiotics. In my experience as a nurse and a mother, I have found pretty consistently, that unfortunately doctors have VERY little knowledge of nutrition, vitamins, supplements, probiotics, and most alternative treatments. They just don't see it as a priority in what they teach med students. Nursing students have much more knowledge on these issues, so maybe finding a good nurse practitioner and good homeopathic physician would be most beneficial. Since diagnosing my daughter on my own using the Internet (having it confirmed by meeting with Dr. Susan Swedo at NIMH in 2001) I have asked MANY doctors and medical students if they have any knowledge about PANDAS and most do not. I live in Charlottesville, Virginia where we have a huge teaching hospital (University of Virginia) and recently found that they are FINALLY "touching" on the topic of PANDAS!! We just need to keep doing what we are- educating ourselves, educating our health care workers we take our children to, and advocating for our children. I tell everyone I can about PANDAS in the hope of one day having it known by all! I have three other children(besides my 10 yo daughter with PANDAS) ages 3, 5, and six months and I fear I will be dealing with PANDAS for a long time to come. My 5 year old already had his tonsils and adenoids removed after several bouts of strep last spring. He did not show the OCD/tics mt daughter has, but I would know he had strep b/c he would all of a sudden become extremely labile and throw lots of fits when he had strep. Not sure about my four year old yet- he is very hyper and labile, but that's a story for another time. My gut tells me they with all deal with PANDAS. Good luck to you!

Colleen

[Dedee]

Does anyone know what the protocal is for Azithromycin coverage in PANDAS? We have had my son on Amoxicillan 250 twice daily, but would like to switch him over. After looking back over his history with the doctors we noticed that he had been treated for strept with amoxicillan without success in the past before having his tonsils removed. So the thought was, it may not be the best coverage for him now. I can not find documentation of the protocal for Azith anywhere to show my pediatrician, but I swear I have read it recently. If you have it, I appreciate the info. Thanks.

 

Dedee

[ad_ccl]

Hi Deedee,

 

Ronna did post the link at some point over the last couple of weeks - I don't know how to add a link - but is you type PANDAS NIMH into google, then go into the PANDAS info site - then click at the top, recent publications - the first publication is the one that speaks about azithromycin. You could just print it off and take it in to your doctor - that is what I did.

 

Good Luck - azith has been life changing for us.