Azithromycin

[kim]

ad ccl has mentioned that her sons vocals have improved with carnitine use (right Alison?)

 

thought this was interesting

 

http://www.translational-medicine.com/content/4/1/34

 

 

Conclusion

The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress.

[michele]

This is a good article Kim on azith. Did you also read about its immune modulating ability in the article? This is very helpful to why it is working for PANDAS.

 

Azithromycin is an antibiotic with immunomodulatory effects [23-25]. This antibiotic has been successfully used during periods of six months of more in other chronic diseases [26-28]. The side-effects are known for long term use and mainly limited to gastro-intestinal cramps. The chances for resistance limit its use to individual patients under close supervision [28]. The drug is relatively inexpensive and extensive laboratory tests for side effects are not necessary.

 

Emma,

An article on the treatment of OCD. More articles on PANDAS type disorders.

 

http://lib.bioinfo.pl/auth:Swedo,SE

 

J Child Adolesc Psychopharmacol. 2007 Dec ;17 (6):761-7 18315448 (P,S,E,B,D)

An open-label trial of riluzole, a glutamate antagonist, in children with treatment-resistant obsessive-compulsive disorder.

[My paper] Paul Grant, Lorraine Lougee, Matthew Hirschtritt, Susan E Swedo

Pediatrics and Developmental Neuropsychiatry Branch (PDN) of the National Institute of Mental Health (NIMH) of the National Institutes of Health.

Background: Obsessive-compulsive disorder (OCD) in childhood is often refractory to treatment. Riluzole, a glutamate antagonist, has theoretical support as an alternative pharmacological treatment and has demonstrated possible benefit in some open-label trials in adults with OCD. Methods: Six subjects, ages 8-16 years, were enrolled in a 12-week open-label trial of riluzole for OCD symptoms that had resisted prior treatments. OCD symptoms and adverse effects of drug were monitored. Results: Four of 6 subjects had clear benefit, with reduction of more than 46% (39% overall) on Children's Yale-Brown Obsessive-Compulsive Scale, and "Much Improved" or "Very Much Improved" on the Clinical Global Impressions-Improvement scale. Two subjects had no clinically meaningful change in symptom severity by 12 weeks, but 1 subject improved thereafter. There were no adverse effects of drug sufficient to cause discontinuation or reduction of dose. All subjects elected to continue riluzole after the 12-week trial. Conclusions: Riluzole may be beneficial for treatment-resistant OCD in young subjects and seems well tolerated. A placebo-controlled trial of the drug is planned.

 

Michele

 

ad ccl has mentioned that her sons vocals have improved with carnitine use (right Alison?)

 

thought this was interesting

 

http://www.translational-medicine.com/content/4/1/34

 

 

Conclusion

The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress.

[peglem]

For those on the azith, and had a child with ocd issues, did you notice an improvement immediately? We are on Day 5, and the ocd is still there -- does that mean this is not going to work? What about other supplements -- do you use anything else with the azith? Thanks!!

 

I do notice immediate improvement, but not sure what that means in your case. We've also had yeast problems which present similar to strep behaviors, except less OCD & more hyperactive. I give probiotics 2-3 hours after the zith dose. At the end of the 5 days on, She gets a diflucan and to combat that killing the good yeast, she also gets s-boulardii. I think I'm walking a fine line here as far as intestinal flora goes- hard to keep it balanced. She gets a good multivitamin, SAMe, CLO, & fishoil. A few times/week I throw in extra vitamin C and E.

 

Just recently we've added bethanecol back in (she's been off for @3 years) and it has helped alot with the off-zith periods and she is beginning to bring back skills that were lost (or apparently, buried) over a several years regression period (caused by chronic undx'd strep).

[ad_ccl]

we don't have ocd issues

l-carnitine works really well if he gets a vocal tic - and we give l-taurine if his eyes start ticcing - we have also found in the past (usually spring) that homeopathic eye drops for allergies can clear up eye tics. At this point, these tics if they start are minimal and giving the supplement seems to help right away so they don't come to much. when he has no symptoms we give him a multi and magnesium taurate and that is about it. we stopped fish oils and probiotics at christmas as we ran out - and he seemed to get better off them so we have not re-introduced - we try once a week to give bentonite -a yeast busting clay - but we can be forgetful.

[michele]

Do you think he is PANDAS or a related tic disorder? He has no compulsive habits? How about attention issues? That is awesome but unusual for PANDAS. Isn't is wonderful when the tics are down and you can forget the medicines because they seem so much improved? What are his typical symptoms?

 

M

we don't have ocd issues

l-carnitine works really well if he gets a vocal tic - and we give l-taurine if his eyes start ticcing - we have also found in the past (usually spring) that homeopathic eye drops for allergies can clear up eye tics. At this point, these tics if they start are minimal and giving the supplement seems to help right away so they don't come to much. when he has no symptoms we give him a multi and magnesium taurate and that is about it. we stopped fish oils and probiotics at christmas as we ran out - and he seemed to get better off them so we have not re-introduced - we try once a week to give bentonite -a yeast busting clay - but we can be forgetful.

[ad_ccl]

he has been diagnosed with PANDAS by multiple professionals - he had a SUDDEN and SEVERE onset of simple and complex motor and vocal tics at age 6 - a throat swab showed he had strep and ASO titers were high - on the third day of antibiotics tics were 80% gone - by day 10 - 99% gone within days of being off the antibiotics the tics were back. Early on he did have some compulsive thoughts - but no OCD. My understanding of PANDAS early in on our journey was kids EITHER had the sudden onset of tics or the sudden onset of OCD. But one was clearly predominant - and usually boys had the tics and girls the OCD. There seem to me many more getting diagnosed or thinking they have PANDAS - and I wonder if many really just have a tic disorder - with PANDAS the key from my understanding was the sudden and explosive onset - which we had - where you remember the exact day and the symptoms were shocking. I remember a doctor saying that connecting tics with strep is as easy as connecting broken bones with drinking dairy - most children with tics have been exposed to strep recently - as strep is so common, just like most kids with broken bones have had milk that day - it does not mean one causes the other. Again - my understanding of PANDAS is the severe, sudden and explosive onset of symptoms - and the clearing up of those symptoms on antibiotics. Kids with PANDAS do not have to have both OCD and tics, and again my understanding early on was you either had one or the other.

Regarding attention issues - when sick early on he had ADHD with his tics as well as deterioration of handwriting - letters backwards. When well he has no ADHD - we find when he has a breakthrough of tics - he has trouble remembering what work is due etc - he also used to have emotional lability and lack of empathy - all VERY unlike him.

He has minimal tics now when he is sick - looking to the side with his eyes, or throat clearing, slight nodding - nothing anyone would really notice too much. He is active - plays competitive sports - has lots of friends, and does well in school. Early on these things did not seem possible - the first year he was sick he missed tons of school and tics were debilitating at times.

[michele]

How many episodes has he had? I wonder if his recovery was better because he did not have as many reoccurances of strep infections. His symptoms sound like my sons but my sons problems with handwriting, attention, collecting have not gone completely away between episodes. Although symptoms get much more pronounced during episodes. The tics have gone away for now. I think some of the damage done to the basal ganglia could not be repaired. My son was never put on antibiotic therapy for four years. He had at least two episodes a year and each one lasted at least six weeks. What I read recently said they could show any combination of the symptoms. I just assumed most had compulsive behaviors or ADD. We have dealt with all the symptoms. pHow do you deal with the school personal? How much have you told them about his troubles ,etc? Does he need accomodations at all for school? It is great he is doing better now. How long has he been better?

 

http://www.adhd.com.au/PANDAS.htm

Tics can be uncontrollable movements, such as eye-blinking or shoulder-shrugging, or automatic noises such as throat clearing, grunting or saying certain words repeatedly. More recently PANDAS has been associated with a wider range of related behaviours. Affected children can have any combination of the following symptoms:

 

* Cognitive inflexibility, difficult to reason with, as if stuck on an idea,

* Obsessive/repetitive/compulsive argumentative behaviours,

* TICS (repetitive vocalisations of body movements),

* Tourettes Syndrome,

* Attention deficits and oppositional/defiant behaviours.

 

he has been diagnosed with PANDAS by multiple professionals - he had a SUDDEN and SEVERE onset of simple and complex motor and vocal tics at age 6 - a throat swab showed he had strep and ASO titers were high - on the third day of antibiotics tics were 80% gone - by day 10 - 99% gone within days of being off the antibiotics the tics were back. Early on he did have some compulsive thoughts - but no OCD. My understanding of PANDAS early in on our journey was kids EITHER had the sudden onset of tics or the sudden onset of OCD. But one was clearly predominant - and usually boys had the tics and girls the OCD. There seem to me many more getting diagnosed or thinking they have PANDAS - and I wonder if many really just have a tic disorder - with PANDAS the key from my understanding was the sudden and explosive onset - which we had - where you remember the exact day and the symptoms were shocking. I remember a doctor saying that connecting tics with strep is as easy as connecting broken bones with drinking dairy - most children with tics have been exposed to strep recently - as strep is so common, just like most kids with broken bones have had milk that day - it does not mean one causes the other. Again - my understanding of PANDAS is the severe, sudden and explosive onset of symptoms - and the clearing up of those symptoms on antibiotics. Kids with PANDAS do not have to have both OCD and tics, and again my understanding early on was you either had one or the other.

Regarding attention issues - when sick early on he had ADHD with his tics as well as deterioration of handwriting - letters backwards. When well he has no ADHD - we find when he has a breakthrough of tics - he has trouble remembering what work is due etc - he also used to have emotional lability and lack of empathy - all VERY unlike him.

He has minimal tics now when he is sick - looking to the side with his eyes, or throat clearing, slight nodding - nothing anyone would really notice too much. He is active - plays competitive sports - has lots of friends, and does well in school. Early on these things did not seem possible - the first year he was sick he missed tons of school and tics were debilitating at times.

[ad_ccl]

My son got sick a week before grade one - in terms of dealing with the school we had an amazing grade one teacher who was so supportive. We initially kept the info to ourselves as we hoped it would all go away - but then whenever we went off the antibiotics it would come back. We were open about the diagnosis but never got an IEP - or talked to anyone other than his teacher - this year is the first year with an IEP - which is only because the teacher was less agreeable to making some changes - like reducing florescent lights - and having the LCD tv - so those were the main accommodations - and also that he could get more forgetful when sick so she needs to double check his agenda. When you ask how many episodes he has had - that is difficult to say - he fits into the PITANDS where when others got sick in the home he had symptoms. The explosive onset of tics when he was six was the first episode - prior to that he did have a throat clearing thing - which ultimately went away when we removed milk - and he had some minor blinking which went away with eye drops. So - fortunately the first real episode related to strep was treated right away and he has been on antibiotics since. His ASO titers took years to come down - with no known strep infections from the original onset time.

He had a difficult time in grade 1 - was off school a lot - grade 2 was better then we went off the antibiotics after grade 2 as a test for the summer - it was a disaster - symptoms were back within the week - then when we went back on amox it no longer worker nor did anything else - he had a loud vocal tic by the second - azith was a last option for us - and it was a miracle - he has been on it for almost 2 years and he has been very stable overall - his worst time was last october after his brother had strep. We just hope azith keeps working and gets us through puberty and with hope his immune system will be working better by then.

[michele]

That is very informative. Thanks for sharing. We fit into the pitands thing too because there was times with virals that he started blinking or peeing more frequently. Then he strated the emotional liability and obsessing. We had very few documented strep infections. His titers were elevated at a few checked times . I have never tried the LCD or lighting part. How did you figure it would help him? It sure is a rough road to try to figure out isn't it?

 

Michele

We had few documented strep cases. When they seem so much better it can be temptingto try to go without the antibiotics. I am too chicken to try. We seem so much better on it!

My son got sick a week before grade one - in terms of dealing with the school we had an amazing grade one teacher who was so supportive. We initially kept the info to ourselves as we hoped it would all go away - but then whenever we went off the antibiotics it would come back. We were open about the diagnosis but never got an IEP - or talked to anyone other than his teacher - this year is the first year with an IEP - which is only because the teacher was less agreeable to making some changes - like reducing florescent lights - and having the LCD tv - so those were the main accommodations - and also that he could get more forgetful when sick so she needs to double check his agenda. When you ask how many episodes he has had - that is difficult to say - he fits into the PITANDS where when others got sick in the home he had symptoms. The explosive onset of tics when he was six was the first episode - prior to that he did have a throat clearing thing - which ultimately went away when we removed milk - and he had some minor blinking which went away with eye drops. So - fortunately the first real episode related to strep was treated right away and he has been on antibiotics since. His ASO titers took years to come down - with no known strep infections from the original onset time.

He had a difficult time in grade 1 - was off school a lot - grade 2 was better then we went off the antibiotics after grade 2 as a test for the summer - it was a disaster - symptoms were back within the week - then when we went back on amox it no longer worker nor did anything else - he had a loud vocal tic by the second - azith was a last option for us - and it was a miracle - he has been on it for almost 2 years and he has been very stable overall - his worst time was last october after his brother had strep. We just hope azith keeps working and gets us through puberty and with hope his immune system will be working better by then.

[ad_ccl]

the lighting info was thanks to this forum and Claire who used to post a lot. He always ticced more watching tv - so we did the no screens test for 10 days and he did amazing - so as a reward went to toyrus for a toy - he started ticcing the minute we went in the store - I assumed it was excitement - we then went into a baby store that was not at all exciting and he started again - our final stop was another toy store to by a present for his brother - I had decided to skip that errand but he wanted to go and help pick the gift - I decided we would go in and our really quickly - and to my surprise he was ok in that store - in then end it was because there were incandescent lights there. When his immune system was completely out of whack early on he became very photosensitive - maybe it was also all the antibiotics he was on 6 months of biaxin full dose. Anyway - we tried an LCD as it does not flicker and that worked better - we also noticed after being away from school for the weekend and away from the lights he would be a bit better then get worse back at school -so the teacher agreed to keep the lights off when he was there (she was amazing). Now we have in his IEP that he sit near a window and that lights are reduced in the classroom - this year instead of keeping 1/2 the rows off - they have removed several of the lights so that mistakes are not made and lights left on.

My son has not had any other documented strep but my understanding from the doctor is the tests could not come out positive as he is on antibiotics.

You are right -it is a long rough road and I can only imagine how dark and lonely it would have been had I not found this forum - I credit my son's improved health to the hundreds of hours I have spent here and the wealth of info I have gained - I am so thankful others were willing to answer my questions and share their experiences - when I first joined Ronna was really the only PANDAS mom I could find on the internet - it was so nice to hear someone else's experiences - and I was so grateful she took the time to share her experience.

My advise re: antibiotics is not to rock the boat - if things are going well then let it be. We tried going off them and it was terrible and this past week we missed his dose and symptoms started to come back - that may just be because of an exposure to something else - who knows - but he is now finished his round of azith and I did not see any tics today. It is a little miracle pill for us.

[michele]

Wow that is wonderful news that the azith works so well for your son. Thanks to you for sharing. Many here will benefit from your honest accounts.

 

Michele

the lighting info was thanks to this forum and Claire who used to post a lot. He always ticced more watching tv - so we did the no screens test for 10 days and he did amazing - so as a reward went to toyrus for a toy - he started ticcing the minute we went in the store - I assumed it was excitement - we then went into a baby store that was not at all exciting and he started again - our final stop was another toy store to by a present for his brother - I had decided to skip that errand but he wanted to go and help pick the gift - I decided we would go in and our really quickly - and to my surprise he was ok in that store - in then end it was because there were incandescent lights there. When his immune system was completely out of whack early on he became very photosensitive - maybe it was also all the antibiotics he was on 6 months of biaxin full dose. Anyway - we tried an LCD as it does not flicker and that worked better - we also noticed after being away from school for the weekend and away from the lights he would be a bit better then get worse back at school -so the teacher agreed to keep the lights off when he was there (she was amazing). Now we have in his IEP that he sit near a window and that lights are reduced in the classroom - this year instead of keeping 1/2 the rows off - they have removed several of the lights so that mistakes are not made and lights left on.

My son has not had any other documented strep but my understanding from the doctor is the tests could not come out positive as he is on antibiotics.

You are right -it is a long rough road and I can only imagine how dark and lonely it would have been had I not found this forum - I credit my son's improved health to the hundreds of hours I have spent here and the wealth of info I have gained - I am so thankful others were willing to answer my questions and share their experiences - when I first joined Ronna was really the only PANDAS mom I could find on the internet - it was so nice to hear someone else's experiences - and I was so grateful she took the time to share her experience.

My advise re: antibiotics is not to rock the boat - if things are going well then let it be. We tried going off them and it was terrible and this past week we missed his dose and symptoms started to come back - that may just be because of an exposure to something else - who knows - but he is now finished his round of azith and I did not see any tics today. It is a little miracle pill for us.