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stopping medicine


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7 replies to this topic

#1 colleendonny

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Posted 11 March 2012 - 05:44 PM

So, following advice from Dr. B's office, we had to stop our meds. DD was on Augmentin and Azithromycin since January. We added prednisone about 10 days ago for a persistent throat clearing turned throat hacking tic. The day after we started the prednisone, she started to not feel wee. She had bellyaches, vomiting on Sunday and Tuesday night. Throat hacking was significantly decreased though :) Then diahreah started on Wed through Sat, none today. ( Although my 9 month little one has been sick since Friday!) So with the advice, we stopped all meds. She hasn't had an since Thursday night.
And she is doing well. She even told me she hasn't had as many bad thoughts and bad words. I'm supposed reintroduce her meds one at a time after she is symptom free for 24 hours. I need to call them back to see if it necessary. I'm thinking of asking for a new rx of prophylactic dose instead of treatment dose...?
Any suggestions? Good idea?


#2 llm

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Posted 12 March 2012 - 01:38 AM

I don't have any concrete advice, but I think you need to look at this from an ehrlichiosis perspective and not strictly a Pandas perspective. I would not be comfortable leaving the ehrlichiosis untreated. If you look at the CDC website http://www.cdc.gov/e...iosis/symptoms/ The symptoms you describe sound an awful lot like an ehrlichiosis issue and may not be a simple stomach bug or negative reaction to abx. Since you have a positive test for erhlichiosis, I'd be calling the LLMD and seeing if you can get in sooner than next month. Tell them/remind them that you have a positive test for erhlichiosis, you're seeing symptoms and need to get in asap. I'd email him as well. The call will be handled by the front desk. The email will go to the nurse. Between the two, your message might get more attention.

In the meantime, I'd do more research on erhlichiosis beyond the CDC. You may also want to post in the lyme board. I think this is a more pressing issue than Pandas for your DD. JMHO.

#3 colleendonny

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Posted 12 March 2012 - 04:53 AM

Thanks Laura,
I was thinking... Dr. B said the azithromycin was for the ehrlichiosis. I was thinking of possibly keeping her on the azithromycin for that and phrophylactic of Augmentin... I'm not sure, so confused. I think I will call the LLMD today to see if we can get in sooner. I'll have to check out the CDC link. It seems whenever I look into ehrlichiosis, all that ever comes back is virus like symptoms.

But after watching Under Our Skin, I'm really freaked out about all this. I'm nervous to have my kids be outside this summer! Dr. B's office suggested I reintroduce the previous meds one at a time. I think I will start with the prednisone first, since that is when her sickness started.

Although I do not think it was from the medicine. My DD 9 months, is dealing with the same illness.as above. Vomit and diahreah with no fever.

#4 colleendonny

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Posted 12 March 2012 - 04:54 AM

Thanks Laura,
I was thinking... Dr. B said the azithromycin was for the ehrlichiosis. I was thinking of possibly keeping her on the azithromycin for that and phrophylactic of Augmentin... I'm not sure, so confused. I think I will call the LLMD today to see if we can get in sooner. I'll have to check out the CDC link. It seems whenever I look into ehrlichiosis, all that ever comes back is virus like symptoms.

But after watching Under Our Skin, I'm really freaked out about all this. I'm nervous to have my kids be outside this summer! Dr. B's office suggested I reintroduce the previous meds one at a time. I think I will start with the prednisone first, since that is when her sickness started.

Although I do not think it was from the medicine. My DD 9 months, is dealing with the same illness.as above. Vomit and diahreah with no fever.

#5 karam

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Posted 12 March 2012 - 05:27 AM

Hi Colleen,

Between my two kids, I've had similar experiences (different experience with each child).

With regard to stopping meds and reintroducing: last year, after starting my son on prednisone and Biaxin (and I think Zithromax) for a sinus infection, he started having major pain under his arms, in his lower torso and lower back area. We were afraid it was a negative reaction to the meds. As he did with your child, Dr. B. had my son stop all meds. Then, once symptoms subsided, add them back one at a time. The symptoms subsided within a day. We ended up adding the antibiotics back, but not the steroid. I was afraid at the time the steroid was causing the problem. Looking back now, though, I wonder whether it was a Lyme herx (since we have since found out he has Lyme).

My daughter was also on a steroid last year as we tried to calm her immune system down after what we thought was an exposure exacerbation. During that time, she got sick as a dog with the stomach bug...like nothing I have ever seen. She is normally very healthy, physically. I wonder whether the steroids made the stomach bug easier to manifest in her system. What was interesting, though, is that during that time with the stomach bug, her OCD was far less than what one would have expected. After, it went through the roof again.

Anyway, I don't know that any of this helps you at all, except to know that you are not alone.

I think the advice to try one med at a time is good. I also agree getting into the LLMD asap would be wise. Maybe this will add some urgency to the matter so that they will squeeze you in.

Sorry we didn't get to see you at the meeting Saturday....maybe next time.

Kara

DD 11: Severe OCD & other PANDAS symptoms Fall 2009, PANDAS dx spring 2010; Bartonella dx spring 2011; Lyme diagnosis Fall 2011.
On various abx combos for three years. Stopped abx in March 2013. Doing GREAT!!!!!
DS 13: Emotional Lability past 4 years; suspected Lyme spring 2011, confirmed January 2012.
On abx since Feb. 2012. Doing really well, too.
Myself: Lyme dx Jan 2012. Treating. Improving.


#6 colleendonny

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Posted 12 March 2012 - 09:15 AM

I think we'll start the Prednisone tomorrow and keep at that for a day or two alone, then add in another and so on...

We did call the LLMD today to see if there were any cancellations. There is not and I am still on the waiting list. They mentioned that for new patients, they are booking out until December!

#7 trggirl

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Posted 12 March 2012 - 09:48 AM

Gosh it could be anything. When we had been on antibiotics for a month or two, my daughter developed vomiting, fever, and diarrhea. It turned out to be Clostidium difficile. Consequently, we had to stop the antibiotics for quite a while. I think it is a good plan to start things one at a time.

#8 hugs2day

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Posted 13 March 2012 - 04:33 PM

What is interesting to me is that your DD got better after vomiting for several days. This happened to my son in November he was in a bad PANDAS flare, OCD, intrusive thoughts, dramatic neck and shoulder shrugs. He got a stomach virus and vomited for 2 days until dry heaving. After the illness all his PANDAS symptoms remitted just like your child. They did come back within 3 days but it made me wonder what bacteria was in his stomach that he hacked out. My assumption is that once the bacteria repopulated the symptoms returned or was it a normal immune response temporarily anyway.

I did not stop his abx (azithro daily) and the symptoms as I said came back within a 3 to 5 day period. Two months later he did go into full remission with Penn VK and is currently holding onto remission.

So, following advice from Dr. B's office, we had to stop our meds. DD was on Augmentin and Azithromycin since January. We added prednisone about 10 days ago for a persistent throat clearing turned throat hacking tic. The day after we started the prednisone, she started to not feel wee. She had bellyaches, vomiting on Sunday and Tuesday night. Throat hacking was significantly decreased though :) Then diahreah started on Wed through Sat, none today. ( Although my 9 month little one has been sick since Friday!) So with the advice, we stopped all meds. She hasn't had an since Thursday night.
And she is doing well. She even told me she hasn't had as many bad thoughts and bad words. I'm supposed reintroduce her meds one at a time after she is symptom free for 24 hours. I need to call them back to see if it necessary. I'm thinking of asking for a new rx of prophylactic dose instead of treatment dose...?
Any suggestions? Good idea?


Two boys with PANDAS sudden onset 3 weeks apart in 10/2010- DS10 and DS8.





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