Dr's taking us off antibiotics - I'm terrified!

[airial95]

Our little guy has really shown tremendous progress. He's been on Azithromycin since January and while I wouldn't say he's acheived a FULL recovery, h'es pretty much back to normal. The only thing we're left dealing with is the ADHD (which our pediatrician is not entirely convinced is PANDAS related - he think he might just be ADHD) and residual OCD. He's starting therapy for the OCD next week, and honestly, most of his OCD rituals and triggers are not so sever that they're interfering with functioning (he still needs to open doors himself, breakfast needs to be just right, but he can self sootheif the situation does not go just right and he'll "start over" if needed - a HUGE improvement for us).

 

Anyway, our Dr has been renewing his prescriptions every 20 days with us giving him detailed status updates (including a supercharged version of Buster's charting system that my husband and I modified for use with a 2 year old). The last 6-8eeks he's been faily consistent - with only 3 small (2-3 day) spikes in symptoms when exposed to strep. The last 2 weeks have been a joy - he's been a normal, healthly, little boy - even his residual OCD has taken on more age appropriate characteristics. (Let's face it, at 2 1/2 - most kids have some OCD).

 

Based on our last update on Monday, he'd been over 10 days with scores in the teens and twenties (out of 160!). Based on that, our Dr has opted to take him off of the abx. He did admit that it may be temporary, but said that we should take him off periodically to assess if its still needed for suppression. I can't really fault his logic - but it's still terrifying - things have been going so well - why mess with it.

 

We've not told his teachers that there has been a change in his treatment, since we don't want that information to skew how they assess him every day.

 

Well it's only been 3 days off abx, he had a bad day on Tuesday - with some violence and aggression, and again Wednesday morning was rough - although the teachers did say that he improved after nap. This morning, we got our first glimpse of the monster returning trying to get him ready for school - nothing was right - everything was broken, and he wouldn't get into the car until he went off to find rocks (a ritual he used to do quite often.)

 

I'm thinking I've already seen enough to call it quits - but all of his other "spikes" in symptoms lasted only 2-3 days, so I'm thinking I should at least wait another day or two to see what's up.

 

Has anyone else gone through this? How quickly after the abx did the symptoms return? I thought Azith stayed in the system for a while so I didn't know how quickly we'd see changes...

[MomWithOCDSon]

Our DS is older (13), so when we went off abx (we tried a couple of times since January), it was usually about a week -- 7 or 8 days -- before his negative behaviors were back in a noticable way. Now I will say that HE felt them creeping back earlier than we could see them, and he articulated that, but we insisted on "giving it just a couple more days" to make sure that he wasn't just having a bad moment or two. Your 2-year-old isn't as well-equipped vocally, though, to tell you when and how he's feeling, I'm guessing.

 

We've always used Augmentin, which has a much shorter half-life than azith; I thought azith's half-life was something like 68 hours?

 

Just an additional note, though; we even saw regression with our DS when we merely CUT BACK on his abx dose, without actually ceasing them! Because it wasn't enough? Because the half-life is too short? We don't know.

 

It seems to be, bottom line: when these kids need abx, they need abx.

[airial95]

Our Dr reduced the abx dose a couple of months ago, and we didn't have any bad effects. I guess we're luckin in that our ped acknowledges that we may be on suppressive abx for an indefinate amount of time...but I'm just already worried. I logged his day care reports into our spreadsheets this morning and yesterday he was already back up into the 90's (out of 160) - yikes!

 

Our little guy is suprisingly verbal for his age. He can tell us when he's feeling "yucky" or "black" as he sometimes calls it. What we notice most when he backslides is that he gets LESS verbal about what's wrong. We're still getting feedback from him (which is good) but it's already much angrier.

 

I know we have to hang in there and see what happens - but it's still stressful! And just before a holiday weekend! YAY!!!

[Kayanne]

Our little guy has really shown tremendous progress. He's been on Azithromycin since January and while I wouldn't say he's acheived a FULL recovery, h'es pretty much back to normal. The only thing we're left dealing with is the ADHD (which our pediatrician is not entirely convinced is PANDAS related - he think he might just be ADHD) and residual OCD. He's starting therapy for the OCD next week, and honestly, most of his OCD rituals and triggers are not so sever that they're interfering with functioning (he still needs to open doors himself, breakfast needs to be just right, but he can self sootheif the situation does not go just right and he'll "start over" if needed - a HUGE improvement for us).

 

Anyway, our Dr has been renewing his prescriptions every 20 days with us giving him detailed status updates (including a supercharged version of Buster's charting system that my husband and I modified for use with a 2 year old). The last 6-8eeks he's been faily consistent - with only 3 small (2-3 day) spikes in symptoms when exposed to strep. The last 2 weeks have been a joy - he's been a normal, healthly, little boy - even his residual OCD has taken on more age appropriate characteristics. (Let's face it, at 2 1/2 - most kids have some OCD).

 

Based on our last update on Monday, he'd been over 10 days with scores in the teens and twenties (out of 160!). Based on that, our Dr has opted to take him off of the abx. He did admit that it may be temporary, but said that we should take him off periodically to assess if its still needed for suppression. I can't really fault his logic - but it's still terrifying - things have been going so well - why mess with it.

 

We've not told his teachers that there has been a change in his treatment, since we don't want that information to skew how they assess him every day.

 

Well it's only been 3 days off abx, he had a bad day on Tuesday - with some violence and aggression, and again Wednesday morning was rough - although the teachers did say that he improved after nap. This morning, we got our first glimpse of the monster returning trying to get him ready for school - nothing was right - everything was broken, and he wouldn't get into the car until he went off to find rocks (a ritual he used to do quite often.)

 

I'm thinking I've already seen enough to call it quits - but all of his other "spikes" in symptoms lasted only 2-3 days, so I'm thinking I should at least wait another day or two to see what's up.

 

Has anyone else gone through this? How quickly after the abx did the symptoms return? I thought Azith stayed in the system for a while so I didn't know how quickly we'd see changes...

 

Have you tried prednisone yet? If his improvment seems to be leveling off with just the antibiotics, would you and your doctor consider a treatment (not diagnostic) dose of steroids? However, I think it is wise to do it in conjuction with antibiotics.

 

My daughter benefited a lot from two courses of prednisone. Usually a week at full dose, the second week at half that, and then a taper for 2-3 weeks.

[Kayanne]

I also wanted to add that fish oil seems to really help my daughter too...if I skip a few days, she seems more edgy, and little more congnitively inflexible.

 

It seems to be, bottom line: when these kids need abx, they need abx.

 

I completely agree!

[EAMom]

The 1/2 life of Azith is 68 hours but I've always wondered if that held true for part of the Azith that is anti-inflammatory/immune modulating. Does that make any sense? Maybe the antibiotic effectiveness lasts longer but not the anti-inflammatory part?

[airial95]

So, after three days, we're going back to the dr at 1:15. Yesterday was a terror!!! He was in a nonstop violent rage. When I mentioned to him that I was going to call the dr, my little 2 1/2 year old, in his little 2 yr old speech impediment says "I want to go see dr freidmeyer so I can talk to him about feeling yucky"

 

I know he'll put us back on the abx, I just hate that we had to go through this!!!