Amoxicillin - is it strong enough

[Lena_Dmom]

We're very new to PANDAS. Well, actually, not new to the illness but have just been diagnosed. We - meaning my 3.5 DS. He just completed 2 weeks of Amoxicillin (5 ml x 2 day). I think his tics have gone down a little but with his yeast getting out of hands - his behavior is still very much off the wall. He has just been prescribed 2 more months (I am in shock - I know, I know... it is what it is but I NEVER thought there is a human who takes antibiotics for longer than 10 days) of Amoxicillin. Has anybody used it and had success with it? To me this medication sounds so baby-like and innocent (isn't it a drug of choice for ear infections among infants?!)

 

Our doctor thinks it is better to start low and slow and if Amoxicillin does not work - then we would move to something more potent. Any thoughts?

 

P.S. He's also been put on Nystatin to control his yeast which is out of this world because of antibiotics, even though he's been on probiotics...

 

Thank you!

Lena

[ShaesMom]

We're very new to PANDAS. Well, actually, not new to the illness but have just been diagnosed. We - meaning my 3.5 DS. He just completed 2 weeks of Amoxicillin (5 ml x 2 day). I think his tics have gone down a little but with his yeast getting out of hands - his behavior is still very much off the wall. He has just been prescribed 2 more months (I am in shock - I know, I know... it is what it is but I NEVER thought there is a human who takes antibiotics for longer than 10 days) of Amoxicillin. Has anybody used it and had success with it? To me this medication sounds so baby-like and innocent (isn't it a drug of choice for ear infections among infants?!)

 

Our doctor thinks it is better to start low and slow and if Amoxicillin does not work - then we would move to something more potent. Any thoughts?

 

P.S. He's also been put on Nystatin to control his yeast which is out of this world because of antibiotics, even though he's been on probiotics...

 

Thank you!

Lena

 

Most of us here use either Azith or Augmentin. I think most of us agree that a 30 day dose of one of those two is the best option for getting the strep under control. Keflex is also another good option. amoxicillin and PenVk are not able to kill the strep if it is intercellular. They are only capable of getting any strep that is surrounding the cells. If I'm not explaining that correctly-someone plese correct me.

Many of our children have been on long term abx so we are not shocked at the recommendation of 2 months. My dd7 has been on abx since the beginning of May.

 

Welcome to the forum. You will find a lot of support and great information here.

 

Sam

[thereishope]

Amoxicillan is usually the antibiotic doctors start with for infections so they the kids have a stronger one to graduate to, if needed. Yes, it is given to infants and kids for ear infections, but it is also what peds give for strep throat. It isn't just for babies.When my son (almost 6) gets strep, he is given a 10 day course of amoxicillan. Luckily, it kills the strep. So, anyway, that was your doctor's thinking. He wasn't doing his job wrong, he may just need you to guide him along a different path than he is use to if you want something else.

[dcmom]

Hi Lena-

 

Sorry you are here, but glad you may be on the right track to treatment for your child.

 

My daughter did two weeks of cephalosporin, and then two weeks of amoxicillin when we diagnosed pandas. She had an abrubt onset, which lasted 4 weeks before we rec'd diagnosis. We were lucky, there. She sort of stabilized on these meds, but we weren't really satisfied with her progress, so we saw another doc who switched her to zithromax. She did full strength for 30 days. That did the trick, and brought her back to about 98%!!

 

You are very fortunate to have a doctor open to long term abx (many parents don't), it is hard to swallow as a parent, but when it brings your child back- you will be a believer. If the amox didn't work after 2 weeks, I would consider a change to zithromax.

 

I don't know how to advise you on the yeast- luckily we haven't had that issue (yet).

[Debbie1]

Hi Lena,

 

Welcome to the forum. I have two children who have been on prophylactic amoxicillin for PANDAS for the last 10-11 months. For one child it seems to be working well. For the other, it seemed to be working until late June, when she started having symptoms again as well as rising titers. I thought she might be outgrowing the dose (she had a growth spurt), but her neuro. thinks she may have developed resistance to the amox. We will be switching her antibiotic to Duricef, unless Dr. Latimer recommends otherwise when we see her. My ped. is resistant to putting her on Azithromycin because it is broad spectrum, but so many people say it works. I appreciate his concern - I do not want her to develop a resistance to a broad spectrum antibiotic, but we also need to get her better. We have to see what Dr. Latimer will recommend.

 

Debbie

[dcmom]

I forgot to add, that if the strep is intracellular, the amox probably won't be enough.

 

I think it is prudent to treat pandas strep with a month of zithromax to be assured you have eradicated the strep, and then possibly a steroid burst to help with inflammation. Then I would definately consider changing to a more narrow spectrum of antibiotic for prophylactic (carefully).

[EAMom]

This article explains why amoxicillin doesn't work in many cases of strep throat http://www.entrepreneur.com/tradejournals/.../169459644.html

[mama2alex]

Hi Lena,

 

Welcome to the forum!

 

My son's PANDAS started in the middle of a 10 day course of Amoxicillan, so I know that doesn't work for us. Once we diagnosed the PANDAS, we started him on 125mg per day of Azithromycin and started seeing his symptoms decrease within days.

 

I'd say if you aren't seeing much difference in his symptoms with Amoxicillan, you need to try something else.

 

I agree with dcmom that a month of Azithromycin can't hurt. Then see if you've made progress and decide from there.

 

My son has also had yeast overgrowth problems and has been on Nystatin since he was 3 (now 9). I give him 2 -3 capsules of probiotics, plus caprylic acid daily and have him on a very low sugar diet. Have you tried restricting sugar to help get the yeast under control?

[bronxmom2]

Hi Lena,

Initially, my pediatrician insisted on using ONLY amoxicillin prophyactically for my son, though I could see quite clearly that it did NOTHING for his behavioral symptoms. He kept insisting that amox was the only safe antibiotic long-term, that strep had never developed a resistance to amox, etc. And I kept saying: I just know it isn't working.

 

He finally believed me when his titers just kept going up and up and up, despite a T&A.

 

Hopefully, he learned something.

 

Keep a close eye, and if you don't feel it's working, I urge you to insist on a broader-spectrum antibiotic. Cefdinir worked for us last year. Now we are using Zithromax.

 

Good luck

[T_Mom]

Hi Lena,

In our case our d has been on Amoxicillan full strength since January. (note: not prophylactic)

 

I believe that for us, it has been a life saver, though it may have been easier (and quicker) perhaps if we had tried something else like a month of Azithro. (but at the time the doctor we were seeing would only prescribe Amox.)

 

Anyway-- A word of advice...if it works it works. If it does not, then my own opinion is that you move to the next step which may be a trial of something stronger. If it works (Amoxicillan or whatever), you will know.

I would have tried Azithro but short of ordering it from Mexico I could not get it!!

 

One mistake one earlier doctor did with us though was to put her on Amoxicillan for an exacerbation (cold-like illness, temperature, coupled with OCD and tic exacerbation) and after 10 days we were switched to half-strength dose prophylacticly(sp?)...Our d's symptoms exploded when we went to half strength...severe OCD. After about a week we put her back on full strength Amoxicillan and within 4 days she was back in school--I am convinced we must treat it until there is a quelling of the symptoms hopefully representing something has been eradicated, changed.

 

Hoping for the best for you--

TMom

[Lena_Dmom]

Thank you, all! Wow, this is the most responsive forum I have come across! You're absolutely right - the doc's rationale was to start with the most narrow spectrum antibiotic to reserve "heavy artillery" for later if needed. We did see his tics go down a lot on a full strength Amoxicillin so I think that lead him to believe that we should stick with it. So did Kelly Dorfman (I saw from posts that several of you know and trust her).

 

But, I am now puzzled that if his infection is intracellular than keeping him on this wonder-pink-substance will do doodle-squad... and in the meantime we'd be loosing 2 months. So I guess what I will try is to give it a go for 2 weeks and see if tics are gone and if his lymph node's inflammation is down. If not, I will be calling our Dr. to switch to something stronger (that was my husband's reaction, by the way - why play around? Let's just do it - ask for a "real antibiotic!" Men, I'd tell ya!)

 

I also emailed and got a response (wow!) from Dr. Kovacevic (the Chicago doctor). He offered to do a phone consult for us. Have any of you done it? Is it worth it? Will he shine some additional light that our DAN! and Kelly Dorfman might not be aware of?

 

Thank you, again, and I hope that one day I will learn enough to be able to give back to this forum!

[EAMom]

Hi Lena,

where do you live?

[Kayanne]

Our doctor thinks it is better to start low and slow and if Amoxicillin does not work - then we would move to something more potent. Any thoughts?

 

Welcome to the forum...I'm sorry that you are here...but as far as advice you are at the right place, I have gotten tons of helpful info here...My daughter is now 100% thanks to all of the helpful responses that I have gotten.

 

Respectfully, I disagree with your doctor...I think strep needs to treated very aggressively.

 

I do really hope that amox is enough to clear your son's infection. Completely clearing the strep is key to managing this.

 

Good luck,

~Karen

[colleenrn]

Hi. I did not have a good response with my daughter using Amoxicillin. She had several months of reoccuring strep infections. She would finish 10 days of Amoxicillin and within 1-2 weeks have strep again. If I could do it over again, I would have switched antibiuotics after the first time. I know some people on thius forum have had good results with it though.

 

My advice would be to have an extremely low threshold as far as any symptoms coming back or symptoms not completely going away, then I would switch immediately. Some kids (my kids definitely do) react to the red dye in the liquid amoxicillin, so keep that in mind.

 

Read up on intracellular strep so you have a good understanding of it in case you need to make your case to your physician for switching. Many physicians insist that strep is not resistant to Amoxicillin or penicillin, which is just not the case. These abx may kill the strep in a test tube, but in the body there are different mechanisms that cause these antibiotics to not erradicate the strep.

 

You mentioned that your child is on 1 tsp, 2x/day. Do you know how many mg of Amoxicillin is in it per tsp (thre are 3 different doses of amox liquid- 200mg/5ml, 250mg/5ml, and 400mg/5ml). I am asking b/c sometimes the treatment dose a child is given is not high enough for strep. It may be for other infections, but not with strep.

 

Colleen

[Lena_Dmom]

Hi Lena,

where do you live?

 

We're in Allentown, Pennsylvania