Long term antibiotics

[bmom]

At what age are doctors planning on taking your children off of preventative antibiotics? Dr. K took my son off at 1 year post ivig, he is 11. What are other dr. recommending? What do they consider preventative dose?

[EAMom]

hi bmom,

how is your son doing?

 

We had IVIG Aug 09 (9 years old). We plan on staying on some kind of prophylactic abs until at least age 18. Currently we're on 250mg/day (58 pounds) azith. We may try to decrease that eventually (although she is growing). Our dd may be a more severe case. CaM kinase ll was 253 (the highest Dr. C. has ever seen) during an exacerbation (after H1N1 in June 09) and with the history of anorexia we're pretty cautious.

 

I know there was someone who posted a while back, I can't remember their name. But, their child had IVIG several years ago with Dr. K and continued abs for only 1 year. Then 2-3 years later (after a series of infections) the PANDAS returned in full-force and the child was back to square one. So, this time they plan on continuing abs much longer.

[P_Mom]

Yeah...all due respect to Dr. K, but, I think he is missing the boat on that one. Dr.L told us my boys would be on preventative antibiotics for a LONG time....until "Pandas is a distant memory." They are on 250 mgs. Pen VK 2 x a day.....so far, so good on it...no strep since onset in summer 2007.

 

Yes, how is he doing???

[sf_mom]

I think Dr. K is open to revising his position on antibiotics.

 

Regardless, I too would keep my child on antibiotics until PANDAS is a distant memory or 18 like EAMom. I think I would need to see absolutely no immune deficiencies to even consider taking them off.

 

-Wendy

[faith]

Hi bmom,

what was the reason he gave? how is your son doing presently? was he one to get strep in the past?

 

 

Faith

[bmom]

Thank you those who asked how he was doing. He actually seems to be doing really great! I would love to just leave things alone, but the thought of not having him protected against strep scares me as he does tend to get strep at least once a year or more! We are 14 days with no antibiotics and things are really good, which totally surprised me as I thought the antibiotics kept things under control. I think the 875 mg twice a day of Augmentin for the last 2 months really helped and maybe finally cleared him. I am trying to get into place a low dose antibiotic for awhile (years). Dr. K has been insistent on not doing this. I have emailed Dr. T and Dr. L for a phone consult-no response on either. I would like a second opinion and of course, my problem has always been finding someone to prescribe (pediatrician is a jerk about it) and I am trying to find a new one. I have a doctor at Stanford we saw once that I might take him back to and see what she can do. Hope all are doing well and I am so thankful for the last 2 1/2 months that my son has been doing well and hope things continue. I am always checking the website although I dont post as much anymore. Kinda burned out by the last 3 years! I do appreciate all the valuable info. that everyone provides and I am constantly amazed at the smart and dedicated people on this website. It is really incredible how we have all advanced over the last 3 years. Great job parents! :-)

[EAMom]

I think Dr. T. has even seen cases that relapse in their early 20's after strep.

[bmom]

ugh....That is my fear and my son even got strep on 500 mg Augmentin daily. I would love to just have some sort of peace of mind.

[EAMom]

At what age are doctors planning on taking your children off of preventative antibiotics? Dr. K took my son off at 1 year post ivig, he is 11. What are other dr. recommending? What do they consider preventative dose?

 

I'm still of the belief that Augmentin needs to be given 2x daily to effectively prevent strep. It's half life isn't much longer than pen, which absolutely has to be given 2x daily.

[KeithandElizabeth]

bmom:

 

Does Dr. K give you any sort of scientific or medical reasoning for his decision? When was the last time your son had strep? Our doctor is also against long-term antibiotics. I was thinking that I would give my kids at least one additional year (after a complete year of being symptomless) of prophylactic zithromycin. And I was assuming I would have to get them from Canada since I do not have much luck getting them locally.

 

Elizabeth

[EAMom]

how about contacting Swedo and see what her kids (the pex/ivig study kids) did? Or...does anyone know of any, and we can ask? Also, Dr. T. would be aother good source since he has been treating kids for many years.

[bmom]

Dr. K says he is concerned of my son becoming antibiotic resistant or of C Dif. He says his protocol is 1 year of antibiotics post IVIG and has not seen any reason to go longer. This is contradicting what he said 1 year ago during IVIG. He said usually he does 1 year, but some parents prefer longer as they are nervous and he did not see why we couldn't go longer. Now he says no. My sons last positive strep was last Feb. about a year ago now.

[P_Mom]

He did the same thing with us....spoke of "carrying my son through puberty" on antibiotics while we were there seeing him....then when the script was done after 6 months...he denied any refills...saying he didn't see any reason, nor was there any evidence, that would support keeping them on.

 

I then switched to Dr. L.....

[KeithandElizabeth]

Maybe he has seen some of the kids he has treated get C-Dif???? Our friends 5 year old daughter was just hospitalized for this from one course of antibiotics. What a nightmare for us all to have one thing to worry about on one side of the coin and PANDAS on the other side!

[MomWithOCDSon]

Maybe he has seen some of the kids he has treated get C-Dif???? Our friends 5 year old daughter was just hospitalized for this from one course of antibiotics. What a nightmare for us all to have one thing to worry about on one side of the coin and PANDAS on the other side!

 

Sorry, but what is "C-Diff"?