update - would love your opinions

[wornoutmom]

Big thank you to all who responsed to my last post with such a show of support. It was beyond life saving to me. Though I hate to jinx it, I am thriled to share that we've had 4 straight days with no meltdowns/rages.

 

So here's the latest recap. Meltdowns/ violent rages (fueled by need to know what's happening) start Jan 1st and occur daily for 8 days. This starts 5 days after final taper off Celexa and 9 days off Omnicef. Still taking Luvox 100 mg and on 3rd week of .125 risperdal 3X/day. We have one mysterious day in there with no tantrums, but falling asleep at 7:30 at night. Starts Omnicef Jan 8th. (no strep found - just nasal staph) On day 3 and 4 no rages. Rages back with a vengance and longer/more violent than ever on day 5 and 6. Day 7, up Risperdal per psych doc to .25 mg 3X day. No meltdown, but ehxausted and urinates himself at night, not once, but twice, despite upped DDVAP. Decide next day not to give nighttime dose of Risperdal unless I see a need due to enuresis. Day 8,9 and 10 of Omnicef no rages, not even a mini-meltdown and on .25 mg Risperdal only twice a day. This morning, he went to school without problems, despite having 2 tests - a major anxiety trigger. Oh - and also played 2 hockey games this weekend (even scored a goal). Also had a good therapy session Fri. as well.

 

So, while the verdict is out on if this improvement will hold, I am wondering what you all think based on your own experiences? Did the Omnicef start to work on day 3, but day 5&6 were part of a "sawtooth"? Maybe Omnicef didn't kick in until day 7? Or maybe it was just the change in dosing of the Risperdal - just a little extra at a different time made the difference? Or we found just the right combo? By increasing the Risperdal I've ruined my "science experiment". Regardless, we are so grateful for the few days of mental peace he's had and for that, I wouldn't change a thing.

 

Out of curiosity, does anyone know the amount of Omnicef Dr. Murphy is using in her study? Thanks for your input.

[thereishope]

Glad to hear there was improvement and you got a break!

 

About the falling asleep so early. I wouldn't worry at all about that. I actually see that as a positive. His body realizes it needs the rest to heal. Sleep is also the time when the brain process information.

 

When my son has a strep infection, I see a worsening of symptoms until somewhere between days 3 and 5. When I say improvement that can mean he starts to plateau or I see the beginning of the calming down stage. I can't fully explain it, but I think the meltdowns become less frequent, clamer, don't last as long. The OCD and stuff would still be there.Isn't it fabulous that I have to strain my brain to remember! I would have setbacks, bumps in the road, times of plateauing again, and continued improvemnt for the next 2 months or longer.

 

So, is he still on meds?

[LaraM]

Is your child in Dr. Murphy's study? We see her next week for the first time. I am counting down the days as my five year old son just started a sharp uptick in behaviors (pacing, some aggression, crying). He was exposed to strep about 8 days ago. I am so sad for him and just want him to get help!!

[wornoutmom]

Is your child in Dr. Murphy's study? We see her next week for the first time. I am counting down the days as my five year old son just started a sharp uptick in behaviors (pacing, some aggression, crying). He was exposed to strep about 8 days ago. I am so sad for him and just want him to get help!!

 

 

No we are not in the study. My son has been thought allergic to penicillin (just did allergy testing on Monday and it turns out he's not) so the docs prescribe Omnicef almost all the time when they prescribe. Not sure why that is - seems like he used to get Zithromax when he was younger but they, at some point, all became fans of Omnicef around here. He is on 600 mg a day and wondered what Dr Murphy's dosing was - if that was considered "full dose"? If you find out when you see her, I'd love to hear. I wish you the best of luck next week. My son is now 14 and we have been dealing with this since around age 3, so you are very blessed to have someone knowledgeable working with you at such a young age.

 

By the way, for those using Omnicef, I just learned last week that taking it with an iron supplement decreases the absorption of the Omnicef. And of course I've been giving the iron supplement our ped. recommended at the same time as the Omnicef for weeks now. Sigh.. For now I have just cut the iron in half, as there are not enough hours in the day to split up all this med dosing so it doesn't all interefere. DOn't know if iron effects other abx, but if anyone is giving a multivitamin with iron you may want to look into that.