New prescription for Omnicef

[texascatholic]

Just spoke with Dr. Rao. He is not local for us, but we are using his services along with Dr. Infante who is local for us. He changed us over to Omnicef after Zithromax has not yielded any results (in fact, we've gotten worse). He wants to try a dosage of 250mg twice a day for 3 days...see what happens, and then switch to 150mg twice a day. He says we can do a steroid burst if we see no results from the Zithromax. Our family is travelling to CA for a few weeks starting this Saturday, and we really NEED this to work. After we get back, we plan on doing IVIG. I'd love to hear other Omnicef stories because I don't know much about it.

 

God bless,

Holly

[keeptrying]

Just spoke with Dr. Rao. He is not local for us, but we are using his services along with Dr. Infante who is local for us. He changed us over to Omnicef after Zithromax has not yielded any results (in fact, we've gotten worse). He wants to try a dosage of 250mg twice a day for 3 days...see what happens, and then switch to 150mg twice a day. He says we can do a steroid burst if we see no results from the Zithromax. Our family is travelling to CA for a few weeks starting this Saturday, and we really NEED this to work. After we get back, we plan on doing IVIG. I'd love to hear other Omnicef stories because I don't know much about it.

 

God bless,

Holly

We recently switched to omnicef after 10 of zithromax. We were not seeing any improvement on it and I felt like it was making my dd's tics worse. Our doc said it was ok to switch to omnicef, we have been on it for 7 days now. He has her on 300mg twice a day and the bottle is for 30 days. I plan to give it one more week then stop if we do not see anything. We do not have an official pandas diagnosis..yet..we are waiting on Cunningham test results and hope to have them next week. If they tell us something, we will continue the abx. Did your doc agree to the steroid after zithro because there was no improvement or were there any tests showing there is no active infection?

 

I will tell you that I got a lot of comments on omnicef working wonders after trying zithro with no results. Some say with in 5 days and others report 10-12 days before improvement. Maybe you need to switch and give it time. Sorry I can not offer too much help, I think we are in the same boat of waiting for something to happen. It is very frustrating! I wish you luck.

[texascatholic]

Hi there...

We don't know if there is an active infection or not because we've never had elevated strep

titres. We seem to have PITAND. Our Cunningham test came back with elevated CamKinase (139 while

not in exacerbation) and elevated Dopamine1 (2000). He said we can try the steroids if we

don't get results with the Omnicef. Don't know what's going on, but determined to get to the bottom of things.

I hope things get better for you as well!

 

Holly

[texascatholic]

Could it be possible that we are seeing an improvement after just 3 doses of Omnicef????? Wow! Hope so!

She seems much happier and closer to her old self. Intersting.

 

Blessings,

Holly

[trggirl]

Please keep us updated Texascatholic and Keeptrying.

[keeptrying]

Please keep us updated Texascatholic and Keeptrying.

I am so glad for you Texascatholic and hope the improvement is continuing. We do not have good news to report unfortunately. Day 9 on omnicef and still nothing. I emailed Dr. K just to get an opinion and he told me no need for abx and to just schedule ivig. This confused me because everyone here says to give it time. could it be that she has had symptoms for so long (4 1/2 yrs) that abx would not be effective anymore..? this is what I am fearing.

[thereishope]

It is possible. Track her progress through ratings or a journal. And please keep us updated!

 

Could it be possible that we are seeing an improvement after just 3 doses of Omnicef????? Wow! Hope so!

She seems much happier and closer to her old self. Intersting.

 

Blessings,

Holly

[texascatholic]

If it makes you feel any better, KeepOnTrying,we too have had symptoms for 4.5 years and finally found something

thar is helping. Hope you have a breakthrough soon! We leave for a 3 week trip tomorrow so I really hope things keep improving.

 

God bless you,

Holly

[chodnett]

we were on Omnicef low dose nothing happened. Switched to AugmentinXR 2000 day and saw results in 10 days. Some Symptoms returned within 3-1/2 months. Tics mostly. still on Augmentin but has done 2 IVIG treatments. They work. she would be unable to function without them. It keeps getting worst the longer you wait. That is a short version of our story. It is very LONG as I am sure everyone feels the same way.

[keeptrying]

we were on Omnicef low dose nothing happened. Switched to AugmentinXR 2000 day and saw results in 10 days. Some Symptoms returned within 3-1/2 months. Tics mostly. still on Augmentin but has done 2 IVIG treatments. They work. she would be unable to function without them. It keeps getting worst the longer you wait. That is a short version of our story. It is very LONG as I am sure everyone feels the same way.

HI - can you tell us how long your child had symptoms before you treated with omnicef and what the low dose was? How long were you on omnicef too before you switched? Glad to hear that ivig has helped you.

[texascatholic]

Sadly Omnicef has stopped working...bummed out. However, I am going to do a phone consult with Dr. Rao soon and see what we can do next. We are also going to do Igenex testing to rule out lyme (a standard lab test gave a negative result, but I've heard those can give false negatives?). The Omnicef worked beautifully for a week/week and a half, and then not so much. We are back to rages again. Wondering if this is all herx? We have an appointment with a local immunologist and will hopefully do IVIG soon.

[smartyjones]

texas -- sorry to hear the omnicef is not working so much any more. i cannot really give you any advice other than to tell you our story, which yours sounds familiar

 

.. . . ds presented with mainly behavioral issues -- separation anxiety, oppositional defiance, sensory. he had high titers and a positive throat culture. he was horrible on a 5-day azith -- prior to azith, he had improved a bit; on it, all troublesome behaviors came back with a vengenance. we switched peds and did a 30-day course of kelfex (cephalosporin, i'm quite sure same family as omnicef -- could be wrong, i don't know abx so well) and nystatin. within 3 days, all troublesome behaviors resolved -- 100% remission. he was great for the rest of the 30-days and a bit after. once off the med, he relapsed. again back on med -- saw some improvement, not as dramatic.

 

he then continued to be 'okay', not really healthy -- maybe 90% prepandas. he got a flu and spiraled down -- slowly improved. we thought he was doing really well, school did not. strangely, he seems to do well either at home or school but not both, and it can vary.

 

we further investigated other infections -- and found many, including lyme, toxoplasma gondii and CMV. initally western blot through regular lab was completely non-reactive. those seem to have improved, strep is still problematic. could the initial bad reaction to azith been a herx to lyme? possibly. he'd been on azith a couple years earlier with no bad reaction.

 

my take is that he had all these infections -- when he got strep or it got out of control, we saw the behaviors as a result of the autoimmune reaction to the strep. perhaps the kelfex initially hit the strep and why we saw such great response, but wasn't enough to sustain it - either not enough to stop autoimmune reaction or due to other infections.

 

i do believe some who see a pandas reaction have 'only' strep and others have other infections. i believe the reactions and behaviors we see are related to strep, perhaps the others have been 'silent' infections, may or may not be problematic. we are treating them all b/c i think ther is no way to tell what is the actual troublesome infection(s).

 

so, my advice and it's only my opinion based on our experience, is to check for other infections if you are not seeing results with treatment.

 

good luck.

[texascatholic]

Thanks for your advice, Smarty...

My husband is going to call up Igenex today

so we can get the ball rolling.

[chodnett]

I am sorry I did not respond to your question this is still hard for me to figure out.

Yes, we were regular dosage for 2 weeks--- no change at all.

Then after trying to figure out our relationship with away dr. >>>to home pediatrician>>> to us--confusing to even write.

He doubled dosage, still no change.

I said finally, I know Sammy Maloney had success with AugXR so I said that is what I want to try.

After a few weeks on 2000 mg symptoms got eerily quiet.

We were like this whole nightmare was going away!!

Then it returned 4 months into still 2000 mg of Augmentin.

OUCH!!

I had seen Lauren Johnsons progress on the Today show over the 3-4 months they tracked her and could not believe the progress.

I knew we were headed for the IVIG.

My daughter is better but not healed completely. We have had some regression but she seems to bounce back quicker. Her PANDAS???? Who knows how long she has had it. MC asks about scarlet Fever. Yes, she had it at 1 1/2 yrs. but symptoms hit overnight and hard in 4th grade. She was diagnosed with Tourettes?? I said what no blood work?? Dr. said NOPE that is what she has and he is happy to give meds for tics.

That was almost 4 years ago!!

We did not figure this PANDAS out until last year. All her recovery has been in the past YR. She has made huge strides. We still are hopeful for 100% better with IVIG.

That is our story I know everyone has a different experience. But I had so many doors shut in my face when I brought up Could SHE Possibly have PANDAS???

I would hope the info is more current for doctors to accept it as a real diagnosis. For us we will stick with the doctors who have believed and treated all along.

So I heard they are not going to call it PANDAS anymore, For me, I don't care what they call it I just want them to treat all the poor children who are suffering from it.