High dose Augmentin

[Worried_Dad]

Our son is 13 and weighs about 106 lbs. He is currently on the Sammy dose (1000 mg of augmentin twice daily).

 

We live in SW Michigan.

 

We were on 500 mg of augmentin (prophylaxis) prior to the Sammy dose, and our son still had 2 exacerbations during that time (one mild, one severe).

 

We have done 3 rounds of full-dose, 2-day IVIG treatments with Dr. K (Oct 2008, June & July 2009).

 

First round of IVIG had amazing results: got to 70% within a month or two. But infections in January and March eroded all of that progress and put him in the worst condition yet. Rounds 2 and 3 helped, but not dramatically: slow, subtle progress for 3-4 months afterward to maybe 25%. After a month+ of the Sammy dose of augmentin, we're probably up to 55+% and improving every day! It feels as dramatic as the initial IVIG response (because his symptoms were worse this time and he had a lot farther to go).

 

Don't know that we have a long-term plan. Dr. K has prescribed 2 months of the Sammy dose and is monitoring our son's progress but hasn't yet said whether he would continue that dose for us. Local DAN doc wrote us a script for 875 mg twice daily (slightly lower) with 3 refills, so we have that as a "backup." If we have our way, we'd choose to follow Sammy Maloney's model at this point and continue on the mega-dose augmentin for a year (and a treatment dose for a while after that).

 

DAN doc agreed that the mega-dose is worth trying, considering the seriousness of our son's condition. She just wants to monitor closely and regularly for liver function, etc., and make sure we take oil of oregano and probiotics to prevent fungal or other "gut flora" imbalances.

 

 

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!!!!!!

[EAMom]

Don't know that we have a long-term plan. Dr. K has prescribed 2 months of the Sammy dose and is monitoring our son's progress but hasn't yet said whether he would continue that dose for us. Local DAN doc wrote us a script for 875 mg twice daily (slightly lower) with 3 refills, so we have that as a "backup." If we have our way, we'd choose to follow Sammy Maloney's model at this point and continue on the mega-dose augmentin for a year (and a treatment dose for a while after that).

 

I believe Sammy did the mega dose treatment for 3 years, then another couple of years on a lower dose.

[momofgirls]

Elizabeth

I am so happy to hear your son is doing so well! I think it is smart that you are boosting his immune system with the ivig and are supporting him with abx. We really need to do all we can for these kids.

We are currently doing high dose augmentin and our immunologist is working to get our insurance to cover 6 months ivig as well. We have had very good results with the abx but I am hoping to see more improvement from ivig and hopefuly prevent a relapse by boosting her immune system. She weighs 40 llbs and is on 1200 mg augmentin. Our doc doesn't like long term abx but I would like to push for them for at least a year.

[nevergiveup]

Is anyone using AugmentinXR, I believe this was the brand sammy used. This is an extended release tab, gets bacteria in harder to reach places like sinuses. I know the warning says not for children under 16. Any ideas on if this is an issue for kids liver? Also what is the high dosage rate for a 74 lb child? I noticed that the dosages on this forum are all over the place?

[Iowamom]

Regarding high dose abx & Dr. K: We had IVIG with him one month ago. After about a week post IVIG I asked him if he felt we could finally whip the strep and strengthen the immune system on IVIG alone and pabx. Our son's case has quite the hx and we hadn't gotten a handle on the strep prior to the IVIG. He agreed. 875/2x day (Augmentin. 105 lbs.) He gave us 2 weeks and then then I had the month of pabx that got me some more time at that dose. I just got a reply from him today saying we can continue on this dose until at least he smooths out. I was very pleased. I think his protocol is evolving. I'm so glad I asked about the increased dose. Dawn

[Iowamom]

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

Keep giving a "hearty" probiotic. Also, sacharrimeyes (sp) boulardii. Florastor is a brand. Other versions are cheaper. It works on the gut flora in a different way. Was highly recommended. Google and you'll understand. Our son hasn't had so much as goopy poop. I hope you get the help & relief your dd needs. Best wishes.

[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

Keep giving a "hearty" probiotic. Also, sacharrimeyes (sp) boulardii. Florastor is a brand. Other versions are cheaper. It works on the gut flora in a different way. Was highly recommended. Google and you'll understand. Our son hasn't had so much as goopy poop. I hope you get the help & relief your dd needs. Best wishes.

 

Thanks. Our probiotic does not include this. I will look into a change.

Ellie

[Worried_Dad]

Actually, Beth Maloney told me in an e-mail that they did 2000 mg daily for 1 year, then 1000 mg daily for 3 more years. And it was Augmentin XR, which is what Dr. K prescribed for our son, too.

 

 

Don't know that we have a long-term plan. Dr. K has prescribed 2 months of the Sammy dose and is monitoring our son's progress but hasn't yet said whether he would continue that dose for us. Local DAN doc wrote us a script for 875 mg twice daily (slightly lower) with 3 refills, so we have that as a "backup." If we have our way, we'd choose to follow Sammy Maloney's model at this point and continue on the mega-dose augmentin for a year (and a treatment dose for a while after that).

 

I believe Sammy did the mega dose treatment for 3 years, then another couple of years on a lower dose.

[EAMom]

Yup...you're right.