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There is so much I could tell you about and say, but I really wanted to post and say hi and give some hope at least for now. We have been dealing with Pandas for two years and never knew. My son has ADHD (officially) and is on the autistic spectrum (unofficially). He is high functioning and I am a teacher. He is the poster child for being passed over, or left behind by the school system even though I am a teacher and have been for 17 years. In March he exploded with PANDAS/ PITANDS symptoms and of course since he never follows the rules ha ha never cultured for strep, or had the "correct blood work". Still thanks to you all after fighting everyone I have gotten him daily Azith until 25 and my ped. even told me because I fought so hard for my son it will probably save his brain and his future. I actually thanked him for being so wonderful. My ped. was afraid at first and we argued but we took it step by step together and now are working together. I am blessed to have him and others who supported me. My whole point in telling you this is FIGHT, FIGHT, FIGHT to get a high dose of daily Azith. It wasn't until we kept my son on the high dose Azith. that he finally started coming out of it. He had horrible ticks that looked like his neck would break off, ocd, short term memory problems, etc. Now is it always 100 % gone. No of course not and when he gets around strep or stap especially it can be bad for 3-4 days but he usually snaps back. The AZITH is fantastic. Yes he still has some symptoms but I cannot tell you how much it reversed everything. We may have a few bad days here and there but it is NOTHING like it was. Antibiotics, especially the AZITH did reverse the inflammation and I still believe everyday it keeps it down. We use Motrin when we need a double whammy, for example when my son lost his tooth the other day. He is going to school in the Fall and continued to go to school during this. I was scared and it was hard. He will be exposed. Again do I expect 100 reversal of all symptoms, no, but the Azith does work for us. I pray it keeps working since he has a loooong road and a long way to go. Still for now we are doing much better. Also we all do take the Olive Leaf Extract to protect us and it reversed a lot of my Fibro. Yes, it sounds hard to believe but it did and it helped my mom's problems too. So we are keeping strep away hopefully and helping ourselves too. I felt like I was drowning and some days I still do. I worry about my older son and now realize he may have had it too growing up. Still, you have to keep fighting and don't give up. I am so tired I cannot tell you how tired I am, but there is hope for these kids. He does take probiotics everyday and he drinks Acidop. milk each morning which has been wonderful. He eats hamburgers all the time to keep his iron up and takes a good multi vitamin with no minerals. This is just what we do. You have all been such a support I felt like it was time for me to post my story and share. Thank you because I would not have made it without you all. Also daily anitbiotics are not for everyone, but the AZITH is wonderful if your child responds to it. If they don't find one they do respond too and have faith and go for it. Daily antibiotics saved my son. Now this is just our story and you might be different, but if you are on the fence maybe this will give you the support to jump over. After two years of h-k the AZITH saved my son.

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Hi MPM,

 

A couple quick things to mention...

 

You want to make sure his liver enzymes are periodically checked especially using full strength Zith with ibuprofen at times. There are even pandas docs who are recommending frequent use of ibuprofen, but you've got to monitor the liver, it can rocket out of control very, very quickly.

 

The other thing I wanted to mention; many, many of us here are teachers or therapists- people who work daily with high volumes of children AND all the germs they bring with them. Just something to keep in mind; you could very well have periodic, active strep infections yourself and have absolutely no symptoms and no idea you are "sick."

 

I have to run now, but wanted to see if you have had a chance to check out Dr Kovacevic's web page? He goes into detail about pandas and particularly high functioning ASD. Many here personally suspect/believe most if not all neuro-atypical symptoms are infectious based rather than a co-morbid separate condition, but you should check it out if you haven't already.

 

Jill

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thanks for posting..it is always encouraging to hear success...i actually feel like i am the only one on here that still debates about antibiotics...we started this horrible nightmare also in march (with strep 2 x's and sudden changes)...my daughter was EXTREMELY bad so i understand...she never had ANY problems and very emotionally stable, fun, perfect kid, etc....and couldn't even leave my bedroom, tics, ocd, and yelling in fear all day long......we did do the standard dose of antibiotics and it took my daughter until the end of may to be 85% better....unfortunately that is where we linger....she is totally back to herself, but has ocd fears...(that she can overcome on her own, but still sad that she has them).......we even tried 6 days of azit. in the beginning of june and she remained totally the same.

 

your post makes me think i should force the antibiotics?....so is your son TOTALLY back to normal and great?....i'm so happy for you....man, i feel like i'm failing my daughter, but yet i feel like the antibiotics would not really make the difference for her only left symptom of the ocd fears.

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I do know about his liver functions and did make my Ped. run a panel. I actually had to make him do this because he's not too worried about it. He said he's more worried about brain damage. I am more worried about brain damage too. We do the Motrin a few times a week with food. My sister is a nurse and my dad is a pharmacist. They both told me as long as he eats it should be okay. There are a trillion things we could worry about and this is a battle until he is an adult. I hope he doesn't have kidney failure, but which one is better kidney failure or brain damage. I ask myself that all the time because I don't want to hurt him, but I just throw my hands up and pray.

 

It took 3 months of high dose antibiotics to get back to at least 85%-90%. Someone on this website said do at least one month to three months of high dose antibiotics. The OCD and Ticks were the hardest to knock out. It took THREE months of high dose antibiotics. Now everyone's situation is different. I cannot tell you what is right for you all but for us it has been wonderful. He has days where he has a few symptoms because he'll lose a tooth, or run into someone sick. It is frustrating but I am just calm knowing it is short term maybe a day or a few hours. When we started he was crying, screaming, not wanting us to be out of his sight. Oh the ocd was awful. He repeated things constantly wouldn't leave anything alone unless it was a certain way. He would come to my classroom crying and screaming. He doesn't act as Aspergers since taking the Azith so I do wonder about those type issues too, but can only deal with what I can deal with. Most days he is totally normal and great and we can live with him ha ha. Again you haven't failed anyone. I was very tired but didn't want to start the school year without the tools I needed to fight this awful thing.

 

Ohh we did have strep. When we finally got him calmed down he ramped back up and it turned out my husband, me and my older son had strep. So his brain wasn't calming down. When we all got treated our house got so much better. Also when I pulled the fish oil and anything with DHA it got soooo much better. That stuff was poison to my son. Now I know other children take that fine but I couldn't figure it all out. Once we got the high dose Azith, pulled the fish oil, dha and cleared the strep it got 90% better. Now staph sets him off too and my dad had a staph infection so we had a few moody days with about a week of mouth ticks, but they cleared where before it was weeks and weeks and weeks. I have read Dr. K's page and have been coming here for months. Again these are just what helped us. Everyone's situation was different. Again all the medicines and problems that can occur scare me but what scared me the most was when my son was at his worst he would just stare at me unresponsive. I decided full speed ahead even if we have co issues because a catatonic non responsive child is not what we want. Again I pray everyday and it is scarey and I hope we make the right decisions but I don't want his brain fried, or him to end up in a mental institution. Also the Acidop. Milk in the mornings and probiotic helped so much too.

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thanks for posting..it is always encouraging to hear success...i actually feel like i am the only one on here that still debates about antibiotics...we started this horrible nightmare also in march (with strep 2 x's and sudden changes)...my daughter was EXTREMELY bad so i understand...she never had ANY problems and very emotionally stable, fun, perfect kid, etc....and couldn't even leave my bedroom, tics, ocd, and yelling in fear all day long......we did do the standard dose of antibiotics and it took my daughter until the end of may to be 85% better....unfortunately that is where we linger....she is totally back to herself, but has ocd fears...(that she can overcome on her own, but still sad that she has them).......we even tried 6 days of azit. in the beginning of june and she remained totally the same.

 

your post makes me think i should force the antibiotics?....so is your son TOTALLY back to normal and great?....i'm so happy for you....man, i feel like i'm failing my daughter, but yet i feel like the antibiotics would not really make the difference for her only left symptom of the ocd fears.

 

MacParker's Mom--I am glad to hear you have had such a good response with antibiotics alone, may that continue!

 

MichiganMom--You are NOT failing your child...85% is better then she was--

 

Have you considered trying a 3 week steroid burst? Dr L does these and our daughter had a remarkable recovery from 85% to literally 110%! with a steroid burst.

 

Even her teacher commented the week she started on steroids, that she was seeing an entirely different child then she had seen all year--and the teacher did not know we were doing the steroid burst!!! The good effects lasted for over a year--

 

Our daughter was on continual antibiotics (full strength) at the time--and has been for over two years. We first did a month of antibiotics and her reaction was so pronounced that we continued and week to week she got noticeably better--until she plateaued to about 85% and then we did the steroid burst and it bumped her back up entirely.

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I have thought about steroids, but saving those in the arsenal for later I guess if we need them. I can handle 85 to 90% right now. I just figure its such a long journey I have to settle for that and keep some things for down the road. So glad to hear your daughter was good with the steroids for over a year. That is amazing to me. Like I said I just take it day by day and do the best we can. Still, the antibiotics are a godsend and if that ever tapers out we'll try the next weapon steroids or other antibiotics. I just don't want people to give up after a few days or weeks on antibiotics. Like I said the best thing I ever read on this website was do them every day high dose for 1 to 3 months. Who ever initially posted that thank you because at least for now you have saved my child's life.

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Thanks again for posting...

I agree that it is sooooooo nice to not be where we were in march....did your son go to the same school as you teach at? thank goodness if so....i had to take a leave of absence from teaching so that i could attend school with her.....i am sooooo afraid of how it will go in sept.

also, what does the olive leaf extract do (could look it up, i know, just being lazy!)

 

and also, interesting about omega and dha not being good for you..i started that w/ my daughter and think it is helpful, but maybe it would help to actually stop?? what did you think it was doing that was negative? if it's anything gut related then maybe i'll try taking a break???

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I know for a fact that my sons tics were made worse and continued because of the dha and fish oil. Now this is us not everyone but I had started giving to to him thinking I was doing the right thing and realized it was the wrong thing. Then to top it off I didn't realize it was in their multivitamin. Like a dummy I never noticed so we stopped the dha and fish oil and it got better but didn't totally get better until we pulled ALL of it. Then with the Azith it was better and better each day. Now it takes about two weeks for all the fish oil/ dha to clear. If you think there is a correlation stop it. Again this is US not everyone. Some children it helps. Like my son does well with probiotics and some have worse tics. There's no magic pill all children are different. Yes my son goes to my school thank goodness. The teachers are my friends and helped me take care of him. His teacher next year knows about it read up on it and is vowing to do whatever she can to help keep him well. She is going to have a spot in the back of the room so if there is a child with strep he can move. Of course just being in the room will set him off ha ha, but maybe with the Azith he won't go back down the hill. Again when me, my husband and son had strep he was okay around us on the antibiotics so I just pray, pray, pray everyday for strength and protection for my son.

 

The Olive leaf extract is amazing. Now it can't be given to your daughter on antibiotics because it's supposedly a natural antibiotic. Some parents use it in place of regular antibiotics and swear by it. I do give it to my older son when he's under the weather and his colds seem to be shorter in length. I take it for joint pain, hand pain from Fibro. My mom takes it and was a mess and now swears she'll never stop. It is supposed to be very effective against strep even in lab tests. Its a great oil. Again just my experience but I will take it everyday because I feel better, my hands don't hurt, and hope it keeps me from strep. You have to order it. Be careful of the brands because it has to be a certain precentage of the oil in it. I love this board and if our experiences help one person then it's worth it. The smallest posts helped me when it was so bad. I hope I can help someone one day. I tell everyone now our story so they know how dangerous strep, staph, etc. is

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Just wanted to officially welcome you and thank you for sharing your story.

 

@michiganpandas, when you feel you, you child and family may have emotional strength again, perhaps consider trying some type of CBT or ERP if the OCD plateua remains. My son actually experienced residual OCD the last time. Not saying that's what you are experiencing, but after some soul searching some people may realize the PANDAS exacerbation is over but that pesky OCD stays around.

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Congrats on getting your child well. It can be so hard sometimes. One thought, since his Autism symptoms are better on Azith, have you ever gone gluten free/ casein (dairy) free? Often kids loose their Autism diagnosis after going GF/DF, they improve so much. Eye contact, social skills..... Might be the last key to your puzzle?

 

Nancy

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Also glad to hear your son is doing so well!!!!! I too had Fibro symptoms and improved on antibiotics. I have since discovered my 'true trigger' was Lyme Disease with several co-infections/viruses. I am almost 100% recovered after 10 months of treatment for Lyme Disease. All of my children suffer from congenital Lyme Disease. One had PANDAS like on-set triggered by strep. Our younger twins had Autism traits at 2 1/2 years of age. All our children are recovering.

 

You might investigate a little further for yourself and your son. I've attached a link on how to properly test a child that might be Autistic or have Autistic traits for Lyme Disease.

 

http://www.lymeinducedautism.com/howtogettested.html

 

You might also watch or purchase the documentary 'Under Our Skin'. It talks extensively on Fibro and potential misdiagnoses.

 

http://www.underourskin.com/home-store

 

-Wendy

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This is a very timely thread for me. My 13 year old with severe autism made great improvements on Amoxicillin, but now a year later, we have slid backwards quite a bit. We tried Augmentin, but things are still bad. Not horrible, but we are going backwards. I am thinking we need to pull out the big guns; azith.

 

What dose is high dose? Is Azith very expensive?

 

Thanks for the valuable input!

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Hi -

 

Just wanted you to know that I appreciate all that everyone has been posting about their children in these forums. It is very helpful to see that others are having similar issues. I am also pretty new here and have been having a very tough time with my son since Mar 2011. He has had motor tics for a few yrs and we managed with clonidine. He also has sensory dysfunction. However in March everything got much worse (Coprolalia, Copropraxia, tourettic OCD -evening up, touching, sensory ...). I am sure I don't have to explain what a nightmare it has been. I finally talked my ped into giving him Zithromax 200mg /5 ml for 14 days. It is extremely bitter (I tried it) and my son won't take it. He is very difficult and at 10yrs old doesn't really get how imp it is to take it. Is it supposed to taste this awful? I am going to try to get him a pill but not sure if he can swallow it. If you have any other suggestions please let me know. We mixed it in icecream, smoothies, etc.. still really gross. How do you get your kids to take it? If the pill won't work I was going to see if I can get him Augmentin or Amox.

 

Also a comment about the fish oils/omegas. I was told that the DHA can make them more agitated and that I should get something with low DHA and high EPA. Nordic Naturals makes an EPA 850 mg w/ only 200 mg DHA. My other son ( 13 yrs old) uses Omega Brite which also is high in EPA you have to get it online. My 10 yr old won't take it because he is a vegetarian and won't eat fish. I heard vit D was helpful? Anyone know the doseage and is it D or D3?

 

My son also takes inositol for the OCD tics and it seems to calm him. It is a powder 1 tsp/3times per day mix in any cold beverage. You have to ease them into it over a week or so. Just thought I would pass that along.

 

Thanks again! -- NGOLD24

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Hi -

 

Just wanted you to know that I appreciate all that everyone has been posting about their children in these forums. It is very helpful to see that others are having similar issues. I am also pretty new here and have been having a very tough time with my son since Mar 2011. He has had motor tics for a few yrs and we managed with clonidine. He also has sensory dysfunction. However in March everything got much worse (Coprolalia, Copropraxia, tourettic OCD -evening up, touching, sensory ...). I am sure I don't have to explain what a nightmare it has been. I finally talked my ped into giving him Zithromax 200mg /5 ml for 14 days. It is extremely bitter (I tried it) and my son won't take it. He is very difficult and at 10yrs old doesn't really get how imp it is to take it. Is it supposed to taste this awful? I am going to try to get him a pill but not sure if he can swallow it. If you have any other suggestions please let me know. We mixed it in icecream, smoothies, etc.. still really gross. How do you get your kids to take it? If the pill won't work I was going to see if I can get him Augmentin or Amox.

 

Also a comment about the fish oils/omegas. I was told that the DHA can make them more agitated and that I should get something with low DHA and high EPA. Nordic Naturals makes an EPA 850 mg w/ only 200 mg DHA. My other son ( 13 yrs old) uses Omega Brite which also is high in EPA you have to get it online. My 10 yr old won't take it because he is a vegetarian and won't eat fish. I heard vit D was helpful? Anyone know the doseage and is it D or D3?

 

My son also takes inositol for the OCD tics and it seems to calm him. It is a powder 1 tsp/3times per day mix in any cold beverage. You have to ease them into it over a week or so. Just thought I would pass that along.

 

Thanks again! -- NGOLD24

 

My girls do better with pills than liquids. I just hide it in a spoonful of something they like, all the way buried so they don't even taste the coating. I usually use applesauce, but I've also used whipped cream and pudding. You could try saying to him something like....the first spoonful has your pill, just swallow it right away, don't go feeling for the pill with your tongue; that defeats the purpose. After you swallow the pill, you can have the rest of this...(pudding, whatever) and taste that more.

 

If you ever get to a point where you try prednisone pills, I put those in a small amount of peanut butter as their taste is so strong and bitter and have something to drink ready afterwards. However, the pill form of zith does not taste bitter like prednisone. Still, you are trying to avoid the "gag factor."

 

Unfortunately, my dd11 has been taking pills for many years, so she's pretty good at it.

 

Good luck and welcome,

Jill

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