Augmentin and Autism--

[T_Mom]

Sylvia, I hope you don't mind but I think this is very interesting and wanted to bump up your post on the Clav.Acid issue and autism. The opinion article you make reference to had a corresponding opposing opinion response in the medical journal -- (I have yet to find it, so cannot post yet.)

 

I find this very interesting as when our oldest "typically functioning" d was in the midst of an exacerbation she demonstrated behaviors which looked like ASD issues.

 

Thanks for bringing this to the forum.

______________________________________

 

Sylvia wrote:

I also wanted to add that I am a bit afraid of Augmentin because of the link to autism via increased ammonia levels:

 

http://www.ncbi.nlm.nih.gov/pubmed/15607562

 

Anyone here have any thought on this?

 

Nicholas regressed into autism as an infant. After each round of vaccinations he would always react very badly - actually text book vaccine adverse reactions, but pediatricians never aknowledge that vaccines can ever do harm, so I was always told these things were nothing to worry about and were either normal or coincidental. He had projectile vomiting, fever, high pitched screaming with arched back (which is the sign of brain inflammation, but I was never told this at the time),couldn't nurse or take a bottle, and extreme aggitation. I would take him in to the ped and he would always be diagnosed with an ear infection and put on antibiotics. Things got worse and worse untill his last shot and antibiotic when he stopped screaming and got that blank look on his face. An autism diagnosis followed.

 

So I have always been afraid of antibotics untill just recently with the life changing effects of Amoxicillin. The Augmentin is intriguing to me, but I am also a bit terrified.

 

Sylvia

Edited September 1, 2010 by T.Mom

[LNN]

I don't have any input re: clav acid. But wanted to point out that in the Columbia mouse study last summer, the PANDAS mice exhibited "aspergers-like" behaviors and had problems with social interactions. It's not the main focus of the paper - just a sentence amid lots of other discussion. But because it home with me, it stuck. When my son was in 1st grade, his teacher said he made her wonder if he wasn't borderline on the spectrum. After pex, he started second grade and came home telling us about the 5 new friends he'd made. his second grade teacher complained that she couldn't shut him up and he was almost too social.

[Sylvia]

Thanks T.Mom, I seem to remember that opposing opinion too, but it has been a few years. I will see if I can find it too.

 

 

 

Sylvia, I hope you don't mind but I think this is very interesting and wanted to bump up your post on the Clav.Acid issue and autism. The opinion article you make reference to had a corresponding opposing opinion response in the medical journal -- (I have yet to find it, so cannot post yet.)

 

I find this very interesting as when our oldest "typically functioning" d was in the midst of an exacerbation she demonstrated behaviors which looked like ASD issues.

 

Thanks for bringing this to the forum.

______________________________________

 

Sylvia wrote:

I also wanted to add that I am a bit afraid of Augmentin because of the link to autism via increased ammonia levels:

 

http://www.ncbi.nlm....pubmed/15607562

 

Anyone here have any thought on this?

 

Nicholas regressed into autism as an infant. After each round of vaccinations he would always react very badly - actually text book vaccine adverse reactions, but pediatricians never aknowledge that vaccines can ever do harm, so I was always told these things were nothing to worry about and were either normal or coincidental. He had projectile vomiting, fever, high pitched screaming with arched back (which is the sign of brain inflammation, but I was never told this at the time),couldn't nurse or take a bottle, and extreme aggitation. I would take him in to the ped and he would always be diagnosed with an ear infection and put on antibiotics. Things got worse and worse untill his last shot and antibiotic when he stopped screaming and got that blank look on his face. An autism diagnosis followed.

 

So I have always been afraid of antibotics untill just recently with the life changing effects of Amoxicillin. The Augmentin is intriguing to me, but I am also a bit terrified.

 

Sylvia

[MomWithOCDSon]

He had projectile vomiting, fever, high pitched screaming with arched back (which is the sign of brain inflammation, but I was never told this at the time),couldn't nurse or take a bottle, and extreme aggitation. I would take him in to the ped and he would always be diagnosed with an ear infection and put on antibiotics. Things got worse and worse untill his last shot and antibiotic when he stopped screaming and got that blank look on his face. An autism diagnosis followed.

 

Sylvia[/i][/b]

 

I'm new enough here that I don't recall this initial post, Sylvia, but a couple of things resonate for me.

 

Our DS (now 13) had raging ear infections, one after another, from the time I stopped nursing him (around 14 months) until we finally consented to having the ear tube surgery when he was three. He, too, was put on antibiotics time and time again . . . usually liquid amoxicillin for a 10-day stretch. I have some recollection of moving on to a stronger abx now and again when we couldn't get him clear for any length of time.

 

Anyway, a couple of months ago, someone here on the forum posted a French research paper about otitis medea and how fluid taken from infected ear canals often contain Strep A. And that got me thinking about whether or not our PANDAS journey actually started way back then, with those ear infections, rather than around school age when strep throat would course through the elementary school like wildfire.

 

So, was it the infection, the shot or the antibiotic that contributed to the autism diagnosis? Or a combination of 2 or more of those, perhaps?

 

Our DS also has autism spectrum disorder traits; socially, Aspberger's has been at least on the fringe, and his IEP testing last year revealed some visual processing differences that placed him potentially on the very high functioning end of the autism spectrum. Like a lot of PANDAS kids, though, the stronger the exacerbation, the more intrusive and obvious the autism spectrum behaviors become, as well.

 

Experientially, I can tell you that we've had DS on Augmentin for 11 months now, and he's only gotten better with respect to classic PANDAS symptoms, and the Aspberger traits have similarly abated to a large degree. His processing I would still say is "different" from an "average kid's," but he is doing well academically in spite of that, though most assignments (both classwork and homework) take him longer to accomplish than his classmates generally.

[Sylvia]

That is great info for me Nancy. And very exciting that he is doing so well on Augmentin.

 

And thanks LLM for reminding me about the Hornig study. VERY interesting!

 

He had projectile vomiting, fever, high pitched screaming with arched back (which is the sign of brain inflammation, but I was never told this at the time),couldn't nurse or take a bottle, and extreme aggitation. I would take him in to the ped and he would always be diagnosed with an ear infection and put on antibiotics. Things got worse and worse untill his last shot and antibiotic when he stopped screaming and got that blank look on his face. An autism diagnosis followed.

 

Sylvia[/i][/b]

 

I'm new enough here that I don't recall this initial post, Sylvia, but a couple of things resonate for me.

 

Our DS (now 13) had raging ear infections, one after another, from the time I stopped nursing him (around 14 months) until we finally consented to having the ear tube surgery when he was three. He, too, was put on antibiotics time and time again . . . usually liquid amoxicillin for a 10-day stretch. I have some recollection of moving on to a stronger abx now and again when we couldn't get him clear for any length of time.

 

Anyway, a couple of months ago, someone here on the forum posted a French research paper about otitis medea and how fluid taken from infected ear canals often contain Strep A. And that got me thinking about whether or not our PANDAS journey actually started way back then, with those ear infections, rather than around school age when strep throat would course through the elementary school like wildfire.

 

So, was it the infection, the shot or the antibiotic that contributed to the autism diagnosis? Or a combination of 2 or more of those, perhaps?

 

Our DS also has autism spectrum disorder traits; socially, Aspberger's has been at least on the fringe, and his IEP testing last year revealed some visual processing differences that placed him potentially on the very high functioning end of the autism spectrum. Like a lot of PANDAS kids, though, the stronger the exacerbation, the more intrusive and obvious the autism spectrum behaviors become, as well.

 

Experientially, I can tell you that we've had DS on Augmentin for 11 months now, and he's only gotten better with respect to classic PANDAS symptoms, and the Aspberger traits have similarly abated to a large degree. His processing I would still say is "different" from an "average kid's," but he is doing well academically in spite of that, though most assignments (both classwork and homework) take him longer to accomplish than his classmates generally.

[PhillyPA]

I think that I have a rather unique situation that may be helpful to you. My son was completely normal up until the age of five years old. He was TOTALLY NORMAL. He got PANDAS overnight. He became totally autistic - at age 5. It was acute and it was overnight. There were no vaccines involved - just strep. I don't feel like writing out the whole story but the gist of it is this - he always got better on antibiotics. He would start to talk again. He would start to be himself. It was remarkable. It took a 2 1/2 years for a PANDAS diagnosis. That is when the real treatment started. He is now 8.

 

So, I would recommend that you put him on the augmentin. If you see improvement. I would bet his autism may be caused by PANDAS. You have got to switch gears in your head. If he has a PANDAS diagnosis, then more than likely, that is the reason behind his autism. Get out of your head all the autism treatments in terms of mercury poisoning, no antibiotics, chelation therapy, and everything else. If it is really and truly PANDAS, he should get better with antibiotics and perhaps ivig and pex.

 

I guess there is also the possibility that a child could have autism and also gets PANDAS on top of it. In this case, I suppose you would have lots to consider in terms of what to do medically.

 

I am only speaking from my experience. It is very clean cut. It is obvious to me that PANDAS can cause autism,even if the child is past the window of when autism is diagnosed.

[Sylvia]

Thanks PhillyPA, I think you are right. I don't want to insult anyone, but for us, autism would be a walk in the park compared to the psychosis/bipolar or whatever these flares are. When he was on the Amox, he was still mostly non-verbal, had sensory issues, and liked order, but there wasn't any of the bizarre and extreme behaviors. Last night he got a hold of some mustard which is one of his many problem foods. He has a long list of food sensitivities, which were also reduced while on the amox. We have re-started amox, but I guess it hasn't fully kicked in, because John Belushi in Animal House was better behaved. Nick was a wild man, just doing crazy dangerous things, laughing all the while. That is not autism. This is something far worse. To see him slide back to this state after seeing him calm and happy just a week ago breaks my heart, BUT also gives me a clear message that antibiotics change him for the better and that I need to pursue this aggressively. I got some great info from another mom here in a private message. She lives close to me and has given me a doctors name and number that could probably get me in right away. So I will be calling this morning. I am stressed and freaking out, but also very excited that after all of these years I may finally be getting the right picture of what exactly is going on.

 

Thank you everybody!!!!!!!!!!

[Kayanne]

I don't have any input re: clav acid. But wanted to point out that in the Columbia mouse study last summer, the PANDAS mice exhibited "aspergers-like" behaviors and had problems with social interactions. It's not the main focus of the paper - just a sentence amid lots of other discussion. But because it home with me, it stuck.

 

Me too. My daughter's teacher said that by the end of Kindergarten she definitely looked and acted autistic. And when my husband and I read that study, we really believed that has to be some children being misdiagnosed as autism. We are so grateful her symptoms showed at the end of a very successful kindergarten year...and not 2-3 years earlier.

 

 

Get out of your head all the autism treatments in terms of mercury poisoning, no antibiotics, chelation therapy, and everything else. If it is really and truly PANDAS, he should get better with antibiotics and perhaps ivig and pex.

 

When you consider Susan Swedo's original description of PANDAS with dramatic waxing and slow waning, I wonder how many autistic children who improve with the biomedical approach, may just really be improving with a receding of the strep auto-antibodies. It is the same problem with some kids with OCD who are put on SSRI's...which kick in 6-8 weeks -- about the time that Swedo observed improvement in her PANDAS children.

 

Please don't misunderstand me, I don't think all Autism, OCD, and TS is caused by strep. We all just want the correct diagnosis so that we can pursue the proper treatment for our kids.

[PhillyPA]

One word of caution. I have learned a great deal dealing with my son. I learned this on my own since I discovered this forum far to late. For the first 18 months-two years, the amoxicillian worked like a charm. It would always bring him somewhat back. After that time period, it took longer and longer for it to work. I did not keep him on it continually. That was my mistake. Don't take him off the antibiotic. I only did it for "special occasions". A special occasion for the antibiotics were vacations and holidays. I would explain to doctors that I would see, that he always gets better on an antibiotic and they thought I was crazy. I knew what I saw. I knew it was something bacterial. I also learned, again on my own, because no one would help me, that Motrin worked like a charm. This was also doled out also on "special occasions". Special occasions for Motrin included the days I just couldn't take it anymore, a family gathering, or rough peaks at school.

 

 

There is something very satisfying about struggling all this time with my son and my private "experiments" and finding out on this forum that I was right. I was not a nut after all. My gut instincts really are accurate. There really is a name for what he has - PANDAS.

 

Keep him on that antibiotic. If you take him off, the next time, it may not work as well or it will take longer to get the same results.

Edited September 2, 2010 by PhillyPA

[T_Mom]

 

When you consider Susan Swedo's original description of PANDAS with dramatic waxing and slow waning, I wonder how many autistic children who improve with the biomedical approach, may just really be improving with a receding of the strep auto-antibodies. It is the same problem with some kids with OCD who are put on SSRI's...which kick in 6-8 weeks -- about the time that Swedo observed improvement in her PANDAS children.

 

 

Kayanne--It is interesting isn't it--this whole picture of Swedo's work on Pandas and now her team moves to autism.

 

I wonder if it is not just "strep" but the auto-immune inflammation result of some issue--and those seeing improvements with kids with ASDs are seeing the effects of anti-inflammatory issues being resolved.

 

I know I heard the Director of NIH indicate that NIH research was leaning towards seeing autism as a "synaptic disorder" -- which of course (I think:) means something physical and triggered physically.

 

PhillyPA--So glad you wrote in on this, you are one amazing mom.

[Stephanie2]

Back at the beginning of our pandas treatment journey, my 5yo's ammonia tested high. We put him on Alpha Ketoglutaric Acid and there seem to be some normalization of autistic like traits (quoting movie lines etc.). Whenever my 2yo is put on augmentin, I always give him AKA to abbate the ammonia rise that can occur on this drug. I, too, do not like augmentin but have had good success regaring pandas symptoms (although at times I feel like he is becoming more autistic-like). We are currently stopping augmentin in both children and trying vancomycin b/c we suspect that clostridia has been the culprit, rather than strep lately. Vanco is better at targeting clostridia than augmentin, so we will see how it goes.

[GraceUnderPressure]

I wonder if it is not just "strep" but the auto-immune inflammation result of some issue--and those seeing improvements with kids with ASDs are seeing the effects of anti-inflammatory issues being resolved.

That's my thinking - I believe they all the recent acronym conditions of our kids are on a spectrum of neuro-inflammation induced by some type of autoimmunity taking place. Mercury, vax, microbes, etc, all just add to the inflammation burden until the immune system is overwhelmed & unable to cope with it all.

 

 

Stephanie 2, which brand of AKG did you use? It has been hard for me to find outside of the body building industry & I don't know which of those mfr's I can trust.

 

~Grace

[Sylvia]

Not Stephanie, but I buy Kirkman's brand AKG at ourkidsasd:

http://www.ourkidsasd.com/products/105%7CAlpha-Ketoglutaric%20Acid-Kirkman%20Labs

 

I like ourkidsasd because they have many different brands of supplements in one place and give free shipping for orders of 40 dollars or more. I believe the code is FREE or FREESHIP.

 

Kirkman's is one of the oldest companies that specialize in supplements for kids with autism. They have worked with the Autism Research Institute for many years.

 

Many of Kirkman's products are available in trial size, which is great since you don't have to waste a lot of money on a whole bottle of something your child won't take or doesn't do well on.

 

Sylvia

 

 

I wonder if it is not just "strep" but the auto-immune inflammation result of some issue--and those seeing improvements with kids with ASDs are seeing the effects of anti-inflammatory issues being resolved.

That's my thinking - I believe they all the recent acronym conditions of our kids are on a spectrum of neuro-inflammation induced by some type of autoimmunity taking place. Mercury, vax, microbes, etc, all just add to the inflammation burden until the immune system is overwhelmed & unable to cope with it all.

 

 

Stephanie 2, which brand of AKG did you use? It has been hard for me to find outside of the body building industry & I don't know which of those mfr's I can trust.

 

~Grace