Stumbled on combo that works...

[kleek3]

DS4 came down with Croup last Friday. Peids rx-ed steroids for 3 days. On Sunday with URI/Croup he spiked a fever. I knew it had gone into ears. Peids Sunday switched from Augmentin to Cefdinir. He has been on an Azith/Augmentin combo since October with NO change. We just went thru a month from ###### with sickness running thru our home. By Wednesday we had a different kid in our house. I would like to say that after almost a year....this is the first time that we have seen any significant change such as this. BELIEVE ME.....I am so aware of celebrating prematurely. However, the change has been so wanted, needed. endless prayers along with sleepless nights, today is a good day.

 

My questions for all you warriors. Now that we have found something that works. Have any of your kids had success with this combo. Also, do I change his daily combo to Azith/Cefdinir? And at what dosage? He is on 1tsp daily 250mg/5ml. Any advice would be greatly appreciated. Thank you!!!

[beeskneesmommy]

DS4 at the time was on Augmentin alone at first. helped, but when we switched to Cefdinir 4 months later, it was really great. Unfortunately, he went downhill again after about 4 months of Cefdinir. the Azith/Augmentin combo that has not worked for you did work for us several motnhs later. I think it just depends upon the child and what infection that you are fighting. We had some other stuff on board that the Azith eventually took care of, but hopefully the Cefdinir will do it in the long run for you! Again, we did see impressive improvement with Cefdinir for a while...happy for you that things are so good!

[kleek3]

Thank you for your insight Beesknees! I'm wondering this am about the antibiotics that are chosen for each individual child. Does it make sense to say that when a child is in an exacerbation, the med that works at the time would be sensitive to a particular bacteria? Why is it that one med works or seems to work for a period, but a "remission" isn't accomplished? We have NEVER experienced an 80-90% recovery as of yet. Until this Cefdinir/Azith combo we have only experienced a band aid if you will to the situation.

 

I will reach out to Dr. T this am to ask about dosing. Since we found something that works...how do we treat. Dr. T had suggested in his email that we may start to explore IVIG. If he is doing well, do we still consider IVIG? Always thinking...always more questions...Thanks again!

[LNN]

We saw nice improvement with Cefdnir (omnicef) in combo with zith - but that was for lyme. (FWIW, zith + augmentin did nothing for my DS). I believe Dr T continues to rely on standard western blots for lyme testing, which is very frustrating. The standard lyme WB is not reliable (you can go to helpful threads on the lyme forum to read about various tests). If he's not willing to test using Igenx, then ask for C3a and C4a labs from LabCorp. These can be markers for chronic lyme and chronic mold.

 

Some of us have found that when 100% remains elusive, there's an undiagnosed condition along with the Pandas - lyme, mold, methylation problems, zinc deficiency... So keep pushing for answers. The fact the cefdinir is making a dent suggests there's another bacteria lurking or that some sort of chronic strep is there (have you done a T&A? sinus MRI?)

 

As for IVIG, including the NIH study, focuses on whether IVIG helps to end a flare. It does not view IVIG as a "cure". If things are in remission, then I don't think IVIG would be helpful. However, it sounds like you haven't had remission and have just become accustomed to a new normal. If that's the case, then IVIG might help. But only if you find the hiding infection first. I would make sure you've really tested for lyme before ruling it out, not just rely in a standard western blot. That cost us a year and put my son thru unnecessary h***. You may not have lyme. But make sure before you waste a lot of time treating the wrong thing.

[smartyjones]

kleek -- i would say since you are very aware -- stick with what works!!! i am not too knowledgable on abx. my ds was initially on azith and had a horrible time. he had 100% remission on keflex -- i think in the same family as cefdinir, but not sure. he was on it for 30 days. once off, after about 30 days, he slipped back into behaviors. he went back on, but initally not at the same dose and did not have the same amazing results. this was long ago and we were in our first few months -- we had thought he was cured and 'it' was over!

 

how long is your current script? there is still so much that is not known, your clinical observations are invaluable!!

 

we later went on to find multiple infections - but i think it was strep that overflowed the bucket and when strep was being dealt with, his behaviors ceased. but in the long run, we needed to deal with everything else also to reach full health.

 

please keep us posted what dr T advises for you. thanks. good luck.

[Hopeny]

kleek this is a very interesting post. I have no answer but similar experience/questions/mystery. My non PANDAS DD3 has chronic croup (has immune issue). I took her to Dr B as immunologist and she had bad croup/stridor/sinus infection the day we went (was really fortuante as PED ws not helping) end November. dr b put her on steroid taper and then zith. After taper ended, we found out her Lyme infection from August was still active when blood work came back. so Dr J put her on 125MG/50MG Cefdinir/Zith. In 4 days on combo, my child who has not slept through the night in 3.5 years suddenly started sleeping through the night. She has sensory issues and I wondered what of the problem was behavioral and what was medical. Now I feel the sleeping is 100% medical. I had 6 weeks of sleep and then a new episode of croup/3 day steroids which made her bonkers and her sleep is off again. Also, Melatonin started working on her after starting the combo to fall asleep when previosuly it did not work. This combo was a real breakthrough for us, I am curious to hear what others say.

 

also I have to second LLM's comments, based on so many posts I have read there does not seem to be adequate screening for Lyme via the PANDAS docs

[kleek3]

We have not done a T & A or Sinus MRI. We have a FANTASTIC PED that will write for whatever we ask. I will reach out to Dr. T in the am to see what the word is. This is the very first breakthrough since April of last year. We very much so believe that there is something lurking and we just haven't found it at this point. His Myco P was still up, I apologize I dont have labs in front of me. Dr. T suggested that the 4-5 week exacerbation was explainable with the labs. We will have a follow up soon and I am looking forward to hearing what he has to say. I sit here is amazement dealing with him right now. Even if it's only been a week. I haven't felt this happy in a year. I want to be with him, I want to see and hear what he has to say. Just for today....because ya never know what tomorrow brings. I am VERY aware what the new norm became and am praying that we can avoid going there any time soon. Chronic Croup, chronic stridor, tubes in ears, 8 wks pre mature, still wetting at night - we KNOW this is all medical. We know behaviors, tics the whole gamut is related. Slowly...we shall figure it out.

[Hopeny]

We have not done a T & A or Sinus MRI. We have a FANTASTIC PED that will write for whatever we ask. I will reach out to Dr. T in the am to see what the word is. This is the very first breakthrough since April of last year. We very much so believe that there is something lurking and we just haven't found it at this point. His Myco P was still up, I apologize I dont have labs in front of me. Dr. T suggested that the 4-5 week exacerbation was explainable with the labs. We will have a follow up soon and I am looking forward to hearing what he has to say. I sit here is amazement dealing with him right now. Even if it's only been a week. I haven't felt this happy in a year. I want to be with him, I want to see and hear what he has to say. Just for today....because ya never know what tomorrow brings. I am VERY aware what the new norm became and am praying that we can avoid going there any time soon. Chronic Croup, chronic stridor, tubes in ears, 8 wks pre mature, still wetting at night - we KNOW this is all medical. We know behaviors, tics the whole gamut is related. Slowly...we shall figure it out.

So glad you have found something that is working. If you have not explored this, DD3 had chronic stridor (even without croup) for months. (I was a wreck) After I became totally frustrated with our ped who shrugged it off, I took her to ENT who took one look and said her throat is cobbled, she probably has reflux which is irritating her throat and causing stridor. He put her on prevacid and stridor went away along with all of the ear infections (about 1 or so per month). Just something to explore if you have not already...

[kleek3]

Update...Spoke to Dr. T's office today and scheduled a formal lab consult for the 18th. He suggested that since the Cefdinir is continuing to work. Refill the script at same strength we are on now. I'm thinking he will do 30 days and then move to a mtx dosage. We are into a full week of positive results with the med change. We are experiencing some PANDAS symptoms when DS4 is sleepy. The nap is still imperative to his continued health. Something to think about with the previous T&A and sinous chat. I had MY T&A at 26 due to chronic issues. After reading posts from all of you. I remembered my Doctor saying the pockets in my tonsils were like caverns. No wonder I had such an issue. Fast forward....now I'm really thinking that there is a possibility that DS4 could be experiencing the same. Maybe the Strep is lurking in the Tonsils? I will address this with Dr. T next week!

[Teri]

About to start an Azithromycin / Omnicef combo with DD 6 (Dx PANDAS,LYME, & Bart). She has been on an Azithromycin/Cipro combo since 8/12. We have had some behavioral reactions to Omnicef 2-3 years ago and could not complete the prescription. At the time we wondered if it was a reaction to the dyes or artificial flavoring.?? That was a while ago and we are hoping to have a different experience now. It does make me wonder what the cause of that reaction was ....

Crossing my fingers this is a good combo for her!

Edited February 14, 2013 by Teri

[Hopeny]

About to start an Azithromycin / Omnicef combo with DD 6 (Dx PANDAS,LYME, & Bart). She has been on an Azithromycin/Cipro combo since 8/12. We have had some behavioral reactions to Omnicef 2-3 years ago and could not complete the prescription. At the time we wondered if it was a reaction to the dyes or artificial flavoring.?? That was a while ago and we are hoping to have a different experience now. It does make me wonder what the cause of that reaction was ....

Crossing my fingers this is a good combo for her!

Are you using cefdinir as not to use Rifampin for Bart due to your DD's age? I think all of these suspension meds have nutrasweet in them which IMO is a terrible sweetner and gave me horrendous migraines. I hope this time is the charm. Maybe you had a herx rxn before?

[kleek3]

The short lived phenomenal week....is now of the past:(((

 

We noticed Wednesday some throat clearing as well as some behavioral issues. Thursday, it was back to square one. I went from floating to sulking. Now I'm wondering if it was the Steroids and NOT the Cefdinir? We have a follow up with Dr. T on Monday am. A couple of things that I'm thinking about now...he had sugar as well as some dyes in treats at school. I wonder if this could have added to the extreme swing from doing so well to where we are at now? The good news is that we have now seen an marked improvement. From what? We don't have that answer. But...it is possible. We know there is hope. Back to the drawing board.

 

Have a good day all!

 

KK

[Teri]

About to start an Azithromycin / Omnicef combo with DD 6 (Dx PANDAS,LYME, & Bart). She has been on an Azithromycin/Cipro combo since 8/12. We have had some behavioral reactions to Omnicef 2-3 years ago and could not complete the prescription. At the time we wondered if it was a reaction to the dyes or artificial flavoring.?? That was a while ago and we are hoping to have a different experience now. It does make me wonder what the cause of that reaction was ....

Crossing my fingers this is a good combo for her!

Are you using cefdinir as not to use Rifampin for Bart due to your DD's age? I think all of these suspension meds have nutrasweet in them which IMO is a terrible sweetner and gave me horrendous migraines. I hope this time is the charm. Maybe you had a herx rxn before?

 

 

DD is allergic to many antibiotics. She was on Cipro and today is day 1 of Omnicef. Not sure where Rifampin falls in the antibiotic categories.