How long does it take?

[matis_mom]

I am re-posting this as a separate topic following EAMoms suggestion. I have gotten so many replies and good advice, I have a list two pages long for the dr. tomorrow...

But still, I would like to have your input on the questions below... Thanks!

 

Isabel

 

My 12-yo has been on antibiotics for three months... His problems started (or we started noticing more) last feb. after we all had a pretty bad flu. He started having stomach issues, OCD, fatigue, swollen joints. We kept going back to the pediatrician saying, "he's just not right." Thank God, through some friends of friends we found a Dr. who diagnosed him right on the first visit (extensive labs proved he has strep in his gut) We started of with Amoxicillin, then he had his tonsils out and they put him on Cipro for 10 days, then back on Amoxicillin, now they have switched to Cefuroxime plus Hydroxychloroquine...

We are going back to the dr. this thursday, I am going to ask if they can do another stool test, and then run a panel to see in vitro which antibiotic works. I know this can be done, they do it routinely in other countries, I don't know why here they keep trying them right on the child, especially with all the damage long term use causes... My ds is on a ton of probiotics, so thankfully his stomach is handling it all-right so far.

So, my question is, or rather my questions are:

1) How long does it take before one can say "THIS IS NOT WORKING"

2) Can anyone who has seen this through tell me how long it took on antibiotics?

3) Has anyone had their doctor test in vitro to find the right antibiotic?

 

Another question I have is about Ibuprofen. I read in PANDASNETWORK it seems to help. I guess it just brings the swelling down? I can tell when my ds is having a bad day, even his eyelids look puffy, I don't even want to know what's going on in his brain...

 

We are seeing our regular Dr. on Thursday, and then we are seeing a neurologist, Dr. Latimer, on Friday. Dr. had recommended we see a psychiatrist for some anti-anxiety meds to help him through this rough patch, so we figured we should better get a second opinion before we go that route...

 

Thanks for all the info and please reply with any answers, tips, suggestions, encouragement?

[sf_mom]

I think he's on the wrong antibiotic and probably dose.... try Azthromycin or Augmentin. We started seeing a huge improvement right away on Azthromycin. Within a month he was about 90%.... 4 weeks post IVIG 98% back to normal. Had sudden onset June 24th.

[EAMom]

I agree...neither cefuroxime nor amoxicillin worked for us. Azith. was the ab that was best for us....same thing as SFMom, 90% in a month. Mood started to improve within 5 days and we had significant improvement in OCD/anorexia in 14 days. Tics/movement compulsions took about 6 weeks to go away (but those were the least of our problems...the anorexia and mood were the big issues.)

 

Has anyone had their doctor test in vitro to find the right antibiotic?

Like a culture and sensitivity? No...I think the problem is just b/c something can kill strep in a test tube (in vitro), the situation in the body (in vivo) is very different, that's were you get in to the issues of coaggregation and intracellular strep, and perhaps a kid with a "faulty" immune system against strep.

 

Another question I have is about Ibuprofen. I read in PANDASNETWORK it seems to help. I guess it just brings the swelling down? I can tell when my ds is having a bad day, even his eyelids look puffy, I don't even want to know what's going on in his brain...

I think the advil cuts down on inflammation in the brain/basal ganglia. I've never seen anything about advil published anywhere...it's just something us PANDAS parents noticed/figured out on our own...aren't we so smart?

[smartyjones]

when my son first had high titers and + culture, we had a frustrating ped who threw him on a prefunctory 5-day course of azithromycin. it was horrible. pandas behaviors intensified for that period and about 5 days after. we switched peds, new one put him on 30 days of keflex. within 3 days, he was 100% back.

 

i know most people find help with azith - really interesting how different kids seem to do well on different abx.

[faith]

For those of you using Azith, could you confirm if you are West Coast? (especially if you had no luck with other antibiotics previous to this). I don't know where I got the impression that this one seems to be more effective for those on the west coast, maybe it was implied that there is a particular strain of strep or otherwise that broke out in that area that is not as easy to erradicate with other antibiotics? Has anyone else heard or read this?

 

 

thanks

Faith

[peglem]

For those of you using Azith, could you confirm if you are West Coast? (especially if you had no luck with other antibiotics previous to this). I don't know where I got the impression that this one seems to be more effective for those on the west coast, maybe it was implied that there is a particular strain of strep or otherwise that broke out in that area that is not as easy to erradicate with other antibiotics? Has anyone else heard or read this?

 

 

thanks

Faith

Zith works for us- we're in Arizona.

[EAMom]

For those of you using Azith, could you confirm if you are West Coast? (especially if you had no luck with other antibiotics previous to this). I don't know where I got the impression that this one seems to be more effective for those on the west coast, maybe it was implied that there is a particular strain of strep or otherwise that broke out in that area that is not as easy to erradicate with other antibiotics? Has anyone else heard or read this?

 

 

thanks

Faith

 

Azith. works for us...we're in CA.

 

It seems like a lot of folks who are East (or middle US) have a hard time getting Azith. in the first place...for example Michelle and Worried dad were never able to even get an rx.

[Megs_Mom]

East Coast, Azith user.

[lismom]

East coast user, on month 3. Kathy

[T_Mom]

Matismom--

 

To answer your questions:

 

"My ds is on a ton of probiotics, so thankfully his stomach is handling it all-right so far.

So, my question is, or rather my questions are:

1) How long does it take before one can say "THIS IS NOT WORKING"

2) Can anyone who has seen this through tell me how long it took on antibiotics?

3) Has anyone had their doctor test in vitro to find the right antibiotic?"

 

First, some have said that probiotics might counter-react against the effects of antibiotics-- I do not know if this is proven, but some have suggested spacing the giving of probiotics a few hours away from the antibiotics, just a thought.

 

1.--Hard to say--In our experience last fall we had two illnesses +OCD onset. Each time once we started antibiotics (Amoxicillan) the OCD WENT AWAY once within 24 hours, second time within 48 hours. Dr. Susan Perlmutter told us Amoxicillan had anti-inflammatory effects that had shown up in their research, but was never published. Then, 4 months later, when our d got sick a third time we had to increase the Amoxicillan but there was obvious improvement within 4 days (she started talking again after 10 days of not speaking OCD.) I believe the amount and type are the variables that may need to be adjusted to see what, if any of them, will work. Dr. Nicolaides (Saving Sammy book) did this it seems.

 

2. Again, hard to give a "typical" example, every one of these cases is affected by length of illness, severity, etc. In our case each time it was obvious she was improving, until we just kept her on it. At the same time, it was 2 steps forward and 1 step back always along the way. Saw-tooth is an understatement--It is progressive brain healing from inflammation--like a brain on fire, it smolders for awhile (how is that for a horrible analogy--sorry.)

 

3. No--I wonder what that would entail.

[Stephanie2]

Axith works for us in Florida...

 

Stephanie

 

I am re-posting this as a separate topic following EAMoms suggestion. I have gotten so many replies and good advice, I have a list two pages long for the dr. tomorrow...

But still, I would like to have your input on the questions below... Thanks!

 

Isabel

 

My 12-yo has been on antibiotics for three months... His problems started (or we started noticing more) last feb. after we all had a pretty bad flu. He started having stomach issues, OCD, fatigue, swollen joints. We kept going back to the pediatrician saying, "he's just not right." Thank God, through some friends of friends we found a Dr. who diagnosed him right on the first visit (extensive labs proved he has strep in his gut) We started of with Amoxicillin, then he had his tonsils out and they put him on Cipro for 10 days, then back on Amoxicillin, now they have switched to Cefuroxime plus Hydroxychloroquine...

We are going back to the dr. this thursday, I am going to ask if they can do another stool test, and then run a panel to see in vitro which antibiotic works. I know this can be done, they do it routinely in other countries, I don't know why here they keep trying them right on the child, especially with all the damage long term use causes... My ds is on a ton of probiotics, so thankfully his stomach is handling it all-right so far.

So, my question is, or rather my questions are:

1) How long does it take before one can say "THIS IS NOT WORKING"

2) Can anyone who has seen this through tell me how long it took on antibiotics?

3) Has anyone had their doctor test in vitro to find the right antibiotic?

 

Another question I have is about Ibuprofen. I read in PANDASNETWORK it seems to help. I guess it just brings the swelling down? I can tell when my ds is having a bad day, even his eyelids look puffy, I don't even want to know what's going on in his brain...

 

We are seeing our regular Dr. on Thursday, and then we are seeing a neurologist, Dr. Latimer, on Friday. Dr. had recommended we see a psychiatrist for some anti-anxiety meds to help him through this rough patch, so we figured we should better get a second opinion before we go that route...

 

Thanks for all the info and please reply with any answers, tips, suggestions, encouragement?