Last Day of Augmentin...Now What?

[simplygina]

My DS10 is on his last day of Augmentin 875 mg twice a day as a trial dose to see if abx will help. It has been an interesting 10 days. Lots of ups and downs. Half way through he was super emotional and angry. He seems to have gotten past that but is still really touchy and sets off easily. He is managing to get control pretty quickly, but he hasn't been this emotionally volatile in awhile. Actually the whole family is really touchy lately.

 

Here's what I'm seeing:

 

Tics-reduced in frequency, intensity and duration, but still there for sure. He has a neck craning tic where it is like he looking over his shoulder. We know red dye #40 is a trigger for him, as is High Fructose Corn Syrup. He decided he didn't care and went ahead to eat all his Valentine's candy. So maybe the tics would be much worse if he wasn't on abx?

 

OCD-is better and worse. He's not evening things and touching things until they feel "just right" like he was for the past 6 months, but contamination is back after over a year with no real issues. He also told me his disturbing thoughts are back (what if I hurt the cat? what if I hurt my brother?). The inositol seemed to have booted those since last Fall. We haven't been quite as careful about making sure he gets it 3x a day though, so that may be it. I was hoping abx would really get rid of that.

 

Seperation Anxiety-worse. I was working in the basement today and he was rushing around the house trying to find me, convinced I'd been murdered. He is sleeping well though.

 

We have all tested negative for strep in the past week, so that isn't it. He doesn't seem like he's coming down with anything either, except possibly allergies. His brother definitely does have allergies right now and Zyrtec is working for him. My skin is really sensitive and breaking out like crazy and I woke up with a cold sore for the first time in 2 years. So maybe there is something going around? We ran out of the supplements he's been taking (the Bonnie Grimaldi mix), so I've been giving him separate pills of most of the stuff in them, maybe it isn't working that well? Maybe all the junk from the holiday is getting him?

 

Honestly I don't think he's better, just different. The abx seemed to shake everything up and make it all different.

 

I don't think 10 days is long enough at all. We see the doctor on Thursday. I'm worried that without the abx we will be headed back downhill. I haven't seen his test results yet either. Should I ask him to continue the Augmentin? or should I consider switching to Azythromyacin? He has taken so much amoxicillan over the years for ear infections and strep that I'm wondering if it isn't effective for him anymore. And I'm not even sure his doctor will agree to more abx.

 

Ugh. I'm just so sick of all of it. I have not idea how to proceed.

[MomWithOCDSon]

In our experience, I would have to agree with you that 10 days is not a sufficient time period in which to judge the effectiveness of the abx. If it is any help, I will tell you that what you've described with your DS10 is almost identical to our experience with our DS12 early on in the abx dosing, with the exception of the fact that he is almost entirely OCD in his behaviors; his tics are verbal only and fairly minor.

 

Like you, we saw more "changes" than tangible offsets of behaviors toward the end of a 10-day cycle. Initially -- within 36 to 48 hours -- he had ditched most of the contamination concerns that had crippled him for months, but toward the end of the 10-day abx cycle, those contamination behaviors were back, not quite full force, but noticable again. He continued to be volatile, but he could move past a blow-up more quickly than before the abx.

 

In our case, we initially tried abx for 3 weeks and then we thought maybe they'd done all they could for him and we pulled him off; ALL the behaviors were back full force within 8-9 days after his last abx dose. Sorry to say, though, that we took some additional convincing so we repeated that process yet again (3 weeks of abx, then off when we perceived that his progress had "plateaued"), and again, within 8-9 days off the abx, he was decompensating dramatically.

 

So, now he's been on abx for almost 4 months straight, and I will tell you that the progress DOES continue, although sometimes at a very slow, almost inconceivable pace. And it "saw-tooths," also, with two steps forward and one step back in some regards. With DS12, there are still some contamination issues hanging around (seems to be the hardest to kick, and his therapist, interestingly, says that when contamination concerns rank among the highest in OCD behaviors, it is usually a signal that the behaviors are entering a waning phase), and he still has a meltdown now and again around his most vulnerable triggers (homework, boredom, sudden changes in schedule). Yet the meltdowns are fewer, more quickly recovered, and less intense overall.

 

If you feel as though the abx have had any impact at all (was he sleeping well before the abx, for instance?), then our experience would suggest that you stick with it and give it more time. Track even the more subtle shifts in behavior, and the more ones, as well. You might see a pattern emerging that had previously gone unnoticed in the midst of all the chaos.

 

Good luck!

 

My DS10 is on his last day of Augmentin 875 mg twice a day as a trial dose to see if abx will help. It has been an interesting 10 days. Lots of ups and downs. Half way through he was super emotional and angry. He seems to have gotten past that but is still really touchy and sets off easily. He is managing to get control pretty quickly, but he hasn't been this emotionally volatile in awhile. Actually the whole family is really touchy lately.

 

Here's what I'm seeing:

 

Tics-reduced in frequency, intensity and duration, but still there for sure. He has a neck craning tic where it is like he looking over his shoulder. We know red dye #40 is a trigger for him, as is High Fructose Corn Syrup. He decided he didn't care and went ahead to eat all his Valentine's candy. So maybe the tics would be much worse if he wasn't on abx?

 

OCD-is better and worse. He's not evening things and touching things until they feel "just right" like he was for the past 6 months, but contamination is back after over a year with no real issues. He also told me his disturbing thoughts are back (what if I hurt the cat? what if I hurt my brother?). The inositol seemed to have booted those since last Fall. We haven't been quite as careful about making sure he gets it 3x a day though, so that may be it. I was hoping abx would really get rid of that.

 

Seperation Anxiety-worse. I was working in the basement today and he was rushing around the house trying to find me, convinced I'd been murdered. He is sleeping well though.

 

We have all tested negative for strep in the past week, so that isn't it. He doesn't seem like he's coming down with anything either, except possibly allergies. His brother definitely does have allergies right now and Zyrtec is working for him. My skin is really sensitive and breaking out like crazy and I woke up with a cold sore for the first time in 2 years. So maybe there is something going around? We ran out of the supplements he's been taking (the Bonnie Grimaldi mix), so I've been giving him separate pills of most of the stuff in them, maybe it isn't working that well? Maybe all the junk from the holiday is getting him?

 

Honestly I don't think he's better, just different. The abx seemed to shake everything up and make it all different.

 

I don't think 10 days is long enough at all. We see the doctor on Thursday. I'm worried that without the abx we will be headed back downhill. I haven't seen his test results yet either. Should I ask him to continue the Augmentin? or should I consider switching to Azythromyacin? He has taken so much amoxicillan over the years for ear infections and strep that I'm wondering if it isn't effective for him anymore. And I'm not even sure his doctor will agree to more abx.

 

Ugh. I'm just so sick of all of it. I have not idea how to proceed.

[simplygina]

Thanks MomwithOCDSon!

 

Hearing that someone else has had a similar experience is really helpful.

 

He is sleeping much better. He had started to wake again in the middle of the night and want to sleep in our room around the middle of January. He's only been sleeping all night in his own room since January 2009 (waking and sleeping on our floor since he was 5) and I wasn't going back there. We searched for a solution and he decided that it would help if his little brother slept with him. After about 5 days on the abx he decided he didn't need anyone to sleep with him. And for the first time ever, he has gone to bed without having DH or myself lay down with him for about 15 minutes. He has just gone in and gotten into bed and fallen asleep and stayed asleep all night. Which is great, except I'm not ready to give up the cuddles! And he is sleeping later but getting up and getting going without any resistance. For the past 2 months or so he has been really oppositional in the morning, even though that is actually his best time of day. So that disappearing really is progress.

 

I think I may start using Buster's charting system or something similar so I can keep track of all the variables.

 

I hope we don't completely fall apart before we see the doctor on Thursday.

[thereishope]

few things here..

 

As for the duration of meds, I belive it was posted that at least 2 rounds of antibiotics is needed in most kids. many longer. Also, a proph antibiotic is ideal, if it is PANDAS, to try to prevent another strep infection.

 

Even if the 10 days of Augmentin did erradicate a strep infection, it does not mean the child would be fully recovered of PANDAS symptoms in that timeline. The recovery of PANDAS symptoms takes longer.

 

If your child does not get anotehr script of abx, take him in for a follow up strep test 3 weeks after finishing meds. You can also take him in even if he is still on abx, but remind the doctor that he is on meds and a false negative is a possibility.

 

As for old symptoms resurfacing..are you familiar with "turning back the pages" that kids experience with IVIG? Even though my son did not do IVIG, I still saw some of this as he recovered. Also, OCD is so manipulative. If it feels your son is overcoming some OCD, it may try to control him by making other obsessions and compulsions stronger. Think of OCD as a physical entity controlling your child.

 

As for allergies, to your knowledge does your PANDAS son have allergies? If one child has them, there's a good chance your PANDAS son has them. Even with allergies, PANDAS kids exhibit them odd soimetimes. Sometimes with small allergy symptoms or none, even though they do have the allergy. As stated on here before, dust mites are very bad right now. that is a popular allergy. Allergies are a trigger for PANDAS symptoms for my son.

[Megs_Mom]

I apologize that I am not familiar enough with your story, but has your son been tested for Lyme Disease? From reading about this, it seems that abx can exacerbate symptoms and then help. Just wondering if this has been completely ruled out?

[simplygina]

I apologize that I am not familiar enough with your story, but has your son been tested for Lyme Disease? From reading about this, it seems that abx can exacerbate symptoms and then help. Just wondering if this has been completely ruled out?

 

 

I mentioned it to the doctor when we did the tests but I haven't seen the results yet, so I'm not sure if he included it. I'm thinking no, but at our appointment on Thursday I plan to make sure we get lyme titers and mycoplasma titers as well. my son is going to be soooo mad when he has to give blood again, but he did surprisingly well last time and got a banana split for his effort. I imagine he'll do it for another.

 

I mentioned in another post that we have been weaning him off of Zoloft and we stopped the last 25mg at the same time we started the abx. I started giving it to him again and did notice and improvement within a few days. i honestly think he was going thru a withdrawal reaction. i know zoloft can be really hard to wean off and the last reduction is the worst. i think we'll wait until later this spring to do it.