Amoxicillan

[thereishope]

I've seen many people ask about amoxicillan. I thought I'd post our experience with it...

 

My son is one of the rare ones that amoxicillan seems to help. I want to put out there, that if amoxicillan was going to help your child, I saw the downward spiral stop within the 10 days of the prescription, then he very slowly continued to improve after that. We'd have days of no improvement, setbacks that wouldn't really last more than 3 days. Overall, recovery varied from 2 months to 5 months depending on episode. I would continue to see improvement even after the 10 day script was done.He did get a 5 day steroid prescription with his second PANDAS episode since he was very bad off. Even though amox has worked in the past for us, if he ever gets sick again, I am requesting something stronger. You never know when you may get a stubborn infection and I now wonder if recovery wold have been even faster on a different antibiotic.

[T_Mom]

I've seen many people ask about amoxicillan. I thought I'd post our experience with it...

 

My son is one of the rare ones that amoxicillan seems to help. I want to put out there, that if amoxicillan was going to help your child, I saw the downward spiral stop within the 10 days of the prescription, then he very slowly continued to improve after that. We'd have days of no improvement, setbacks that wouldn't really last more than 3 days. Overall, recovery varied from 2 months to 5 months depending on episode. I would continue to see improvement even after the 10 day script was done.He did get a 5 day steroid prescription with his second PANDAS episode since he was very bad off. Even though amox has worked in the past for us, if he ever gets sick again, I am requesting something stronger. You never know when you may get a stubborn infection and I now wonder if recovery wold have been even faster on a different antibiotic.

 

 

Vickie--I will add our d's experience (very positive results) with Amoxicillan.

 

I wonder the same though, that if we had tried something stronger would her recovery had been quicker? --but no way of going back, and the GOOD news is that from an entirely debilitated child summer of 2008:

with severe, regressive, sudden OCD--no talking, eyes shut, step-stepping, holding saliva in her mouth, holding painful positions, spitting at us, throwing things, toileting "accidents", we had to carry her, presented like a large naughty 4 year old (10 at the time)--for a horrid month at the worst of it, etc.etc. From THAT presentation to today where she is a gifted, happy, funny kid again, with good friends, emotionally connected and getting all A's, again, in school--(I think the emotional connectedness was most important to me.)

 

I credit prayer that led us to a perceptive doctor--Our d had an excellent reaction to FULL strength Amoxicillan (and two steroid bursts along the way--which seemed to snap her out of it.)

We have had three severe "episodes" where she had subsequent OCD/mild tics and Amoxicillan worked well. She has been on it continually now for the past 10 months.

[faith]

Vickie,

when you say "after the 10 day prescription was over", do you mean you didn't continue the amoxy longterm? but your child continued to get better? how did you come about using the amoxy in the first place, was it for a strep illness at the time? or just to try it because of the symptoms?

 

 

T. mom, - kind of the same question, ...was the amoxy given because of a positive strep illness, or just as a trial because of symptoms to see if it would help?

 

 

I'm confused over here, because we are on a trial of Augmentin (500 mg. every 12 hrs....10yrsold/50 lbs.)...his strep tests were negative, but I want to continue on to see. I'm not seeing anything "dramatic", today is day 5 and he's still making vocal sounds and shaking his head, this morning it seemed more than in the past week, where I thought it calmed in frequency a little. I'm going to continue on, but I'm losing hope.

 

 

Faith

[faith]

...double post deleted.

[thereishope]

My son got amoxicillan for strep. In Cincinnati, docs only treat the strep and don't believe in preventing it with proph antibiotics,. only with t and a surgery.

 

It's so important to remember that each child is different. I know some parents have posted saying it took 2 months of being on a strong antibiotic before they saw results. I just wanted people to see an example of a timeline in which basic amox works. I don't want anyone to continue giving it when they see no improvement and when, in fact, they need something stronger.

 

With my son's first and third + strep test and PANDAS exacerbation, he was only given 10 days of amoxcillan. I cannot find a doctor in Cincinnati that will give him long dose prophylactic. Now, during his second episode, I did convince the ENT to continue a proph dose of amoxicillan until he had his tonsils removed. So, for his second episode of PANDAS (and his worst) he was on amox for maybe 3 months. That is also the episode when he received 5 days of prednisone. I honestly believe a child needs to be on proph antibiotics esp while recovering and a steroid rather early one is important. I witnessed it both ways to see the difference,

 

First episode...10 days amoxicillan. Went maybe 3 weeks w/ behavior changes until we found out he had strep. At 2 months into recovery, he was 90% himself then he got strep again.

 

Second episode...10 days amoxcillan to begin with. Changed into 3 months of amox. Given 5 days of prednisone, 5 days after + strep test. This was his worst episode w/ the severity and range of symptoms. He recovered to 100% himself in about 2 1/2 months!

 

Third episode....10 days amox. Severity of symptoms were bad, but not as bad as episode 2. Took 5 months to get to 100% himself. And this time he had a lot of residual OCD we had to tackle.

 

He also had 2 setbacks during recovery of his third episode due to a cold and allergies. No antibiotics given for that.

 

I also did not have this forum during the majority of his exacerbations. I didn't know resistance to amoxicllian, what a steroid burst was, etc.I am much more knowledgable now than I was then.

[thereishope]

Let me add that by day 5, I saw the worsening of symptoms start to subside. It wasn't a dramatic upswing. It's not like he was back to himself by the end of a 10 day script. But I could tell something was happening. It still was a very slow process to recover. We also took him for folow up strep test to make sure the strep was gone.

[marcicooynhc]

I've seen many people ask about amoxicillan. I thought I'd post our experience with it...

 

My son is one of the rare ones that amoxicillan seems to help. I want to put out there, that if amoxicillan was going to help your child, I saw the downward spiral stop within the 10 days of the prescription, then he very slowly continued to improve after that. We'd have days of no improvement, setbacks that wouldn't really last more than 3 days. Overall, recovery varied from 2 months to 5 months depending on episode. I would continue to see improvement even after the 10 day script was done.He did get a 5 day steroid prescription with his second PANDAS episode since he was very bad off. Even though amox has worked in the past for us, if he ever gets sick again, I am requesting something stronger. You never know when you may get a stubborn infection and I now wonder if recovery wold have been even faster on a different antibiotic.

[marcicooynhc]

I've seen many people ask about amoxicillan. I thought I'd post our experience with it...

 

My son is one of the rare ones that amoxicillan seems to help. I want to put out there, that if amoxicillan was going to help your child, I saw the downward spiral stop within the 10 days of the prescription, then he very slowly continued to improve after that. We'd have days of no improvement, setbacks that wouldn't really last more than 3 days. Overall, recovery varied from 2 months to 5 months depending on episode. I would continue to see improvement even after the 10 day script was done.He did get a 5 day steroid prescription with his second PANDAS episode since he was very bad off. Even though amox has worked in the past for us, if he ever gets sick again, I am requesting something stronger. You never know when you may get a stubborn infection and I now wonder if recovery wold have been even faster on a different antibiotic.

 

 

Vickie--I will add our d's experience (very positive results) with Amoxicillan.

 

I wonder the same though, that if we had tried something stronger would her recovery had been quicker? --but no way of going back, and the GOOD news is that from an entirely debilitated child summer of 2008:

with severe, regressive, sudden OCD--no talking, eyes shut, step-stepping, holding saliva in her mouth, holding painful positions, spitting at us, throwing things, toileting "accidents", we had to carry her, presented like a large naughty 4 year old (10 at the time)--for a horrid month at the worst of it, etc.etc. From THAT presentation to today where she is a gifted, happy, funny kid again, with good friends, emotionally connected and getting all A's, again, in school--(I think the emotional connectedness was most important to me.)

 

I credit prayer that led us to a perceptive doctor--Our d had an excellent reaction to FULL strength Amoxicillan (and two steroid bursts along the way--which seemed to snap her out of it.)

We have had three severe "episodes" where she had subsequent OCD/mild tics and Amoxicillan worked well. She has been on it continually now for the past 10 months.

 

Our son, Jamie, was put on amoxicillin from the onset of PANDAS. It took a while for us to see improvement so I do not feel that any parent should expect dramatic results within 10 days. I would say within 45 days we did see improvement. We chose (with advice of our pediatrician) to keep him on amoxicillin for over a year. We did not use steroids as they can effect the emotional lability and this is something we did not want to take a chance on. It is important to mention that during this time we

kept our son away from artificial sweeteners, colorings, vaccines, toxins, made sure he got plenty of rest, used meditation and chiropractic. Thank goodness, he has not had any exacerbations since his initial treatment in 2001. We do, however, use Amoxicillin as a prophylactic tool when he is exposed to an ill family member or becomes ill himself. The key to all PANDAS children, in my opinion, is to be proactive and seek out a holistic healthcare provider to keep your child's immune system at

an optimal level. We do not have all the answers...but this is what we found to be true in our son, Jamie's case.

[thereishope]

I did the same. I didn't completely take it out of their diet, but I dramtically decreased it.

 

we

kept our son away from artificial sweeteners, colorings, vaccines, toxins, made sure he got plenty of rest,

 

 

I agree, no dramatic changes w/in those 10 days, but I could just tell something good was happening. I really can't explain it. I think, in my son's case, the amox got rid of the strep, but there was a lot of inflammation that needed to go down or damage caused by inflammation and that's what the months of recovery was. Healing the brain.

[T_Mom]

T. mom, - kind of the same question, ...was the amoxy given because of a positive strep illness, or just as a trial because of symptoms to see if it would help?

 

Faith

 

 

Hi Faith--

 

In my d's case she had a very severe exacerbation summer of 08. Her OCD/tics went away after a steroid burst (per Dr. K's protocol + tapering) and Amoixicillan given for sinusitus which showed up on an MRI (She was so severe at the time that our ped. was willing to give her anything at the time, and my husband felt this could be helpful.) She cleared dramatically and it was a sudden and obvious change.

 

Subsequently, that fall she caught 3 "colds" -- no strep as far as we know -- but ped. put her on Amoxicillan each time as her OCD and tics came back full force with each illness.

 

The third time this happened the Amoxicillan did not "clear" her in 10 days, and we went to half-strength--but she got much worse. We raised the Amoxicillan up to full strength and within 4 days she was talking again and could go back to school--It was amazing...HOWEVER, at that point it took months and the addition of a steroid trial for her to come back again to where she should have been. I look at that whole year as if I lost 9 months with my d.