High dose Augmentin

[dcmom]

Hi all. DD is almost 2 weeks post-pex. I have a follow up with Dr L next week. Before I go, I would like to get a sense of what I feel we should do with the antibiotics. Right now I am totally confused. I really want to be as aggressive as possible for a while (a year?), so as not to negate what she went through with the pex (especially if there is some underlying infection).

 

So, if your child is on Augmentin, please give me your experience and thoughts.

 

How old is your child, what weight, what dose?

What area of country do you live?

What abx and dose were you on before augmentin?

Have you done IVIG or PEX?

How have your results been (esp compared to other treatments)?

What is your long term plan?

 

Any comments from your doctors?

 

Thank you so much!!!!!!

[KeithandElizabeth]

Hello:

 

This is one topic that will bring so many different responses, depending on the doctor treating as well as the symptoms of the child. The immunologists tend to shy away from the higher dose antibiotics on a long term basis because they feel that the purpose of the IVIG is to fight the infection and reboot the immune system.

 

Our son is 7 years old and weighs 50 pounds. He is on 250 mg. of prophylactic Augmentin that he started 2 months ago during his first IVIG. He never did the full dose of antibiotics.

We live in Boulder, Colorado

We were never on antibiotics before IVIG, except for the short term doses to treat strep.

We have done 3 IVIG's. Our first IVIG was 2 months ago. These are smaller dose IVIG's.

We feel that our son is about 90% better at this point. Even his tonsils, which have always been HUGE are now small. Interesting - because the doctors always said that those were just the tonsils he was born with...

Our long term plan is to do 3 more IVIG's and then to continue the prophylactic antibiotics until the one year mark and then continue with more natural therapies like the homeopathic remedies that several people have used on this forum. Some of our doctors feel that once the immune system is functioning properly, then it can respond to strep and other bacterias and viruses more appropriately.

Our doctor feels strongly that PANDAS is a symptoms of an immature/or weak immune system and that our focus should be on the immune system. I am having to push him for the prophylactic antibiotics for one year.

 

In terms of the augmentin, we have not tried any other antibiotics prophylactically and since our son is doing amazing right now, we plan to stay put with the 250 mg. a day.

 

Elizabeth

[sf_mom]

Our son is 5 3/4 years old and weighs 45 pounds. He is on 250 mg. of prophylactic Azithromycin but has been bumped up to 375 m.g. and 500 m.g. due to associated illnesses at home. At 500 m.g. all symptoms abate within 48 hours of upping dose each time. He started antibiotics 2nd week in August, had first IVIG in September, 2nd IVIG in 2 weeks to further boost his immune system through winter months. Seems to be 98% better again since upping his dose on Sunday due to confirmed strep in classroom. I actually don't notice any symptoms currently... last week we had PANDAS like mood switching Tuesday, Friday, Saturday, night waking and minor infrequent TICS.

 

We live in Atherton, CA suburb of San Francisco.... near many of the other parents on this forum

 

Our son was only on antibiotics one time prior in his life when he got his first TIC at 4 1/2, had a reaction to Amox, switch to Azithro for 5 days.

 

We have done 1 IVIG. Our first IVIG was 6 weeks ago with Dr. K

 

We feel that our son is doing very well. Like Elizabeth's son... our son's tonsils, which were HUGE are now considered to be much better.

 

Our long term plan is to do 1 more IVIG currently, maybe more to boost immune system throughout next two years and to continue the prophylactic antibiotics until further notice (depending on final diagnoses). We would like to lower prophylactic antibiotics as we move forward as safely as possible. We will retest underlying immune system prior to eliminating prophylactic antibiotics entirely.

 

-Wendy

[EAMom]

Elizabeth,

 

I find it amazing that your doc is reluctant to rx full-strength abs. IMO, a 1-2mo. trial (to potentially be extended) of full-strength abs should be the first thing one should try if diagnosed with PANDAS. If someone doesn't get good results with Azith then they should try Augmentin (high dose) and vice versa. These are my reasons:

 

1) the potential for complications with IVIG/PEX

2) the expense ($, time off work/school, travel) of IVIG/PEX (and that it may not necessarily be covered by insurance, even when it is covered there are deductables)

3) that IVIG is a limited resource

4) there are some kids that will respond to the abs (or abs plus steroids) and IVIG/PEX won't be needed

 

IMO, if a child is determined to need IVIG (or PEX), full-strength abs may prevent the need for repeat IVIG's. Take Worried dad as an example...he had 3 sets of IVIG...and only really started to turn around after starting high dose Augmentin. He had some response with the first IVIG, but relapsed after a sinus infection (which might have been avoided if he had been on a higher dose of abs). The 2nd/3rd IVIG's failed to produce a response.

 

BTW, our immunologist (Stanford) had no problem with us staying on 250mg/day Azith (54 pound child) for years. This dose would be considered "full-strength" (normally rx'd for 5 days at a time).

 

Hi all. DD is almost 2 weeks post-pex. I have a follow up with Dr L next week. Before I go, I would like to get a sense of what I feel we should do with the antibiotics. Right now I am totally confused. I really want to be as aggressive as possible for a while (a year?), so as not to negate what she went through with the pex (especially if there is some underlying infection).

 

DCMom...I believe your approach makes sense. I wonder if the 20% of kids from Swedo's PEX/IVIG study that didn't have a good response would have had a different result if they had been more aggressive with abs (vs. 250mg pen 2x daily).

[KeithandElizabeth]

EAMom:

 

We are following Dr. K's protocol for the 250 mg. of daily Augmentin. Isn't this the right dose per his protocol?

 

Elizabeth

[EAMom]

EAMom:

 

We are following Dr. K's protocol for the 250 mg. of daily Augmentin. Isn't this the right dose per his protocol?

 

Elizabeth

 

I think that is his usual protocol...although IMO I would up the abs b-4 doing more IVIG's. His usual protocol is only 1 IVIG, so if you are finding you need more, it would be worthwhile to step back and say, "okay, what is going on here, what should we be doing differently".

 

IMO...Dr. K (and Swedo at pen 250mg 2x /day) are too conservative with their post IVIG abs. PEX/IVIG are really big investments which should be protected with good antibiotic coverage afterward. Maybe Dr. K. gets an 80% good response with his current protocol...I wonder if it would be closer to 100% if he was more aggressive with the abs. I completely agree with DCmom:

 

I really want to be as aggressive as possible for a while (a year?), so as not to negate what she went through with the pex (especially if there is some underlying infection).

 

These Docs are still learning...Dr. K used to tell people they only needed 1 year of prophylaxis post IVIG, now I understand he is starting to reconsider that. Recently (I don't remember her name) we had a mom who posted who had IVIG with Dr. K. 3 years ago. Abs were only done for 1 year (per his protocol), then two 2years after stopping abs she had more problems (brought on by various bacterial infections). Her dd was back to square 1, needing another IVIG. This time around, she's not going to stop the abs after 1 year.

 

I should also add, that by the time many (most?) of the parents on this forum have gotten to the point of IVIG (or to Dr. K), they've already done a good trial of long term full-strength abs.

 

We were on abs (mostly full-strength Azith.) for 1.5 years before we got to the point of doing IVIG...and are planning on staying of full-strength azith for 1 year post and (possibly) a lower dose until at least age 18.

[dcmom]

EAMom-

 

This is where I am struggling. My dd is on, and was on before 200mg/day zith. This is treatment dose for her size (36lbs). But I wonder if that is enough. Saving Sammy's dose was equivalent to an adult's treatment dose for pneumonia- and he did it daily for years (and he was a child). The equivalent to that for my dd might be more like 400mg/day. But, that seems like too much.

 

Is 200mg zith enough? Can I go higher- and for how long? Or should I consider augmentin?

 

Her first episode, she did clear on 30 days of zithromax at this dose to about 99%. I guess that should lead me to believe this would work. But I totally agree: our investment in pex was too high (stress, $, etc) to fool around with doses that don't work.

 

Why couldn't we have come into this (pandas) in a few years..... these docs, and parents will certainly know more then...

 

Eileen

[KeithandElizabeth]

EAmom

 

Well, right now my son is thriving and I will have to trust the doctors I am working with. I cannot get him full dose antibiotics, ######, I could barely get him prophylactic antibiotics.

 

I was put on full dose antibiotics as a 9 month old for 6 weeks and they saved my life. However, I developed severe yeast issues that created their own set of issues that lead to more antibiotics throughout my childhood. I am just now getting my own immune system back in shape with mega doses of probiotics. My children also have yeast issues so I need to be cautious with antibiotics. I am following Dr. K's antibiotic protocol and he has treated this illness for over 10 years. If we were not having the success with our treatment, then I would consider the full doses of antibiotics. I understand this helped Worried Dad and I am thrilled for him.

 

Our doctor recommended the 6 months of IVIG, this was not something I decided to do. It is hard to find local doctors who understand PANDAS and are willing to treat your child. I just feel lucky that I found one.

 

Elizabeth

[sf_mom]

Just wanted to remind everyone...... that Pandas is a moving target. Dr. K has always told me to check in with him about any vaccinations, etc. I spoke with him specifically about when to terminate antibiotic use and his response was 'WHAT I KNOW TODAY... MAY NOT BE WHAT I KNOW in six months', minimum 1 year. Now, it seems he is considering high dose antibiotic... per him 'in the acute phase post IVIG'

 

-Wendy

 

 

 

EAMom:

 

We are following Dr. K's protocol for the 250 mg. of daily Augmentin. Isn't this the right dose per his protocol?

 

Elizabeth

 

I think that is his usual protocol...although IMO I would up the abs b-4 doing more IVIG's. His usual protocol is only 1 IVIG, so if you are finding you need more, it would be worthwhile to step back and say, "okay, what is going on here, what should we be doing differently".

 

IMO...Dr. K (and Swedo at pen 250mg 2x /day) are too conservative with their post IVIG abs. PEX/IVIG are really big investments which should be protected with good antibiotic coverage afterward. Maybe Dr. K. gets an 80% good response with his current protocol...I wonder if it would be closer to 100% if he was more aggressive with the abs. I completely agree with DCmom:

 

I really want to be as aggressive as possible for a while (a year?), so as not to negate what she went through with the pex (especially if there is some underlying infection).

These Docs are still learning...Dr. K used to tell people they only needed 1 year of prophylaxis post IVIG, now I understand he is starting to reconsider that. Recently (I don't remember her name) we had a mom who posted who had IVIG with Dr. K. 3 years ago. Abs were only done for 1 year (per his protocol), then two 2years after stopping abs she had more problems (brought on by various bacterial infections). Her dd was back to square 1, needing another IVIG. This time around, she's not going to stop the abs after 1 year.

 

I should also add, that by the time many (most?) of the parents on this forum have gotten to the point of IVIG (or to Dr. K), they've already done a good trial of long term full-strength abs.

 

We were on abs (mostly full-strength Azith.) for 1.5 years before we got to the point of doing IVIG...and are planning on staying of full-strength azith for 1 year post and (possibly) a lower dose until at least age 18.

[EAMom]

Our doctor recommended the 6 months of IVIG, this was not something I decided to do. It is hard to find local doctors who understand PANDAS and are willing to treat your child. I just feel lucky that I found one.

 

Elizabeth

 

Which is interesting b/c most parents (including us) have to jump through hoops to get a doc to agree to IVIG once (never mind having insurance cover it!). That's why so many people end up going to Dr. K...b/c they can't get anyone to agree to do it locally.

[Debbie1]

Eileen -

 

I have two PANDAS children who were switched to augmentin less than two weeks ago.

 

Child 1: Daughter, age 12, 95 pounds, on 600 mg twice a day

 

She was previously on prophylactic amoxicillin (400mg/5ml, 1 3/4 tsp once a day) and was symptom free from January to June 2009. She was bumped up to Duricef and Omnicef (both full strength, but not sure of exact dose) during exacerbations over the summer. She had a very hard time getting over 3 summer exposures to strep despite the antibiotics and required 1 month of steroid followed by the switch to augmentin. She is now doing much better. She is still not where I would like her to be, but my husband and I were both positive for strep (him last week, me today) so she has been around strep non stop since starting augmentin. It has also only been 2 weeks and we were told to give it time. But I want to emphasize that she is doing much better (not sure if that is the augmentin or steroid effect though).

 

Child2: Son, age 8, 48 pounds, on 400 mg twice a day

 

He was previously on prophylactic amoxicillin (400/5ml 1 1/4 tsp once a day) and was mostly symptom free for 8 months (until August 2009) when exposed to a cousin with strep. His OCD increased a little, nothing dramatic, but we noticed. Was given 1 round of Duricef (full strength, don't remeber the dose), with no improvement. Was recently switched to augmentin. We haven't rellay seen changes yet execpt that he has not asked me to check him in the bathroom to see if he is clean. However, it has only been two weeks and he was also around my husband and I who are now both positive for strep.

 

We have not yet done IVIG or PEX for either child, but would consider it.

 

At the moment the plan is to keep them on the augmentin for 4 months and then retest titers (Dr. Latimer's recommendation) and then reevaluate. In the meantime, we are considering removing tonsils and I have contacted an immunologist to see if there is anything else we should be doing. The ENT recommended possibly seeing a rheumatologist as well.

 

Let me know if you need more info. How is yor daughter doing?

 

Debbie

[galien407]

My son is almost 12 y.o., weighs 78 lbs., 875 mg. augmentin twice per day

We live near Chicago and go to Dr. K.

We did a two day IVIG treatment with Dr. K in January; then a one day IVIG in September.

My son was on Cephalexin (sp?) prophylactically following the IVIG tx., I wasn't seeing any improvement since the last one, so I asked Dr. K to do the high dose Augmentin and he has agreed. Been doing that for only 3 weeks, no improvements yet.

 

I HAVE A QUESTION FOR ANYBODY DOING THIS PROTOCOL:

My son was diagnosed as PDD-NOS for many years: but Dr. K feels he is severe PANDAS. In my years of researching biomedical tx for autism, most doctors were unanimous in claiming that strep and aluminum bind together somehow, and that kids with lots of strep also have alot of aluminum. When an autism doctor attempts to clear a strep infection, they almost always have the patient do some form of chelation to grab the newly freed aluminum and escort it out of the body. In this forum, I have read that kids have an initial setback when they start high dose augmentin. I'm wondering if this rxn is due to circulating aluminum before it has a chance to be cleared from the body. So here's my question: Is anybody doing mild (or aggressive) chelation techniques w their child on the high dose abx? I am considering Detoxamin (an EDTA suppository that is given every other day for a month.)

 

Thanks for any insight!

Mary

[P_Mom]

debbie....both positive for group A strep?? Swab or culture??

[Debbie1]

debbie....both positive for group A strep?? Swab or culture??

 

My husband was positive for non group A strep on a culture. I was positive today on a swab but don't know yet which type of strep. The doctor is culturing to find out.

 

At least now we are all being treated at the same time!

[memom]

17yo 120lb daughter placed on Augmentin 500mg twice daily by Dr Latimer about a month ago while also starting Steroids for a month. Definate improvement as had never done antibiotics except to treat strep infections for 10 days (never cleared her OCD). Plan on doing for at least a year. May consider increasing to 1000mg twice daily if as we wean off steroids her symptoms worsen. No Pex or IVIG as yet. Undiagnosed for many years. No bad effects from a month of augmentin as yet.

 

Ellie