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1st dose of abx - improvements?


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I've posted a few times in the last week or so and want to thank you all for all of your information! I finally feel like I am NOT crazy (although at times I feel like I am losing it still)

 

While she hasn't been officially dx'd with PANDAS yet (will see the ped neuro in May) we are on our first dose of Omnicef due to a strep infection (totally asymptomatic, aside from typical PANDAS behaviors (rage, OCD, sep anxiety). We have seen **some** improvement. On day 4 or 5, we noticed glimpses of our "old Sydney" back. We were on vacation this past week, and when she laughed, my husband and I couldn't remember the last time she'd actually LAUGHED as sad as that sounds. Still, there are issues that flare up, like this morning, I could tell she was going to blow, but she was the one that reminded me, "Mom, you didn't give me my antibiotics or ibuprofen yet."

 

Her ped wants her throat swabbed again this Thursday - do you all think she will still be positive? I'm half-scared that she WON'T be positive, because while our ped thinks we are on the right track with the PANDAS, I'm not sure she will continue to prescribe abx if she's not positive. And frankly, I am living in fear of dealing with her for the next 2 months if she is not on them.

 

Her backstory is that when she was 5 (almost 6) she was in the hospital for a strep/staph infection that had her in the ICU for 4 days, hospital for 7 days total. The staph caused a rare disorder called scaled skin syndrome and frankly - she's never been the same since.

 

I feel like I am going to lose it dealing with her separation anxiety behaviors, rage issues, etc. My husband travels every week for his job, and I dread being alone with her because once she says, "I'm bored..." I know she's going to blow. Or if I even try to discipline her or say "NO" or she has something in her head and it doesn't go her way. On top of that, her 5 year old brother has type 1 diabetes, and that is a 24 hour a day job in itself, which also drains me. I'm just so unhappy and sad all the time and I'm praying that there is an answer for her behavior. Sorry for venting...but I feel like this is the only safe place I can do that.

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first of all big hugs to you! I know how hard that place is. It sounds positive that you are seeing some glimpses. It also sounds very likely this could be PANDAS, but keep working towards a diagnosis. You will find the answer and your not crazy. This is often a puzzle, and many of us are still trying to find the right pieces. In the meantime one book that is very helpful is The Explosive Child. Many recommend it here and it can help in coping with the rages. It isn't a cure, but I find if I feel like I at least have some tools, it is easier to cope. Also, take time for yourself when your husband is home. It is very important to have time away from them to recharge.

 

Lisa

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I've posted a few times in the last week or so and want to thank you all for all of your information! I finally feel like I am NOT crazy (although at times I feel like I am losing it still)

 

While she hasn't been officially dx'd with PANDAS yet (will see the ped neuro in May) we are on our first dose of Omnicef due to a strep infection (totally asymptomatic, aside from typical PANDAS behaviors (rage, OCD, sep anxiety). We have seen **some** improvement. On day 4 or 5, we noticed glimpses of our "old Sydney" back. We were on vacation this past week, and when she laughed, my husband and I couldn't remember the last time she'd actually LAUGHED as sad as that sounds. Still, there are issues that flare up, like this morning, I could tell she was going to blow, but she was the one that reminded me, "Mom, you didn't give me my antibiotics or ibuprofen yet."

 

Her ped wants her throat swabbed again this Thursday - do you all think she will still be positive? I'm half-scared that she WON'T be positive, because while our ped thinks we are on the right track with the PANDAS, I'm not sure she will continue to prescribe abx if she's not positive. And frankly, I am living in fear of dealing with her for the next 2 months if she is not on them.

 

Her backstory is that when she was 5 (almost 6) she was in the hospital for a strep/staph infection that had her in the ICU for 4 days, hospital for 7 days total. The staph caused a rare disorder called scaled skin syndrome and frankly - she's never been the same since.

 

I feel like I am going to lose it dealing with her separation anxiety behaviors, rage issues, etc. My husband travels every week for his job, and I dread being alone with her because once she says, "I'm bored..." I know she's going to blow. Or if I even try to discipline her or say "NO" or she has something in her head and it doesn't go her way. On top of that, her 5 year old brother has type 1 diabetes, and that is a 24 hour a day job in itself, which also drains me. I'm just so unhappy and sad all the time and I'm praying that there is an answer for her behavior. Sorry for venting...but I feel like this is the only safe place I can do that.

 

will she still be on abs this thursday? how long a course of abs did you get?

 

where do you live?

 

If he swabs while on abs (or shortly after a course) it could be a false negative.

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We have seen **some** improvement. On day 4 or 5, we noticed glimpses of our "old Sydney" back. We were on vacation this past week, and when she laughed, my husband and I couldn't remember the last time she'd actually LAUGHED as sad as that sounds."

 

I feel like I am going to lose it dealing with her separation anxiety behaviors, rage issues, etc. My husband travels every week for his job, and I dread being alone with her because once she says, "I'm bored..." I know she's going to blow. Or if I even try to discipline her or say "NO" or she has something in her head and it doesn't go her way.

 

 

These two statements really struck me when I read your post earlier this morning. I too, felt a glimpse of my old son on Friday and a bit on Saturday. Also, he laughed -- a really feel good, deep down from the gut laugh -- and it made me tear up. I also couldn't remember the last time that I heard him laugh like that.

 

The "NO" thing is rough, rough, rough here too. It's more like if I say something that opposes what he already had in his head, or thought he was going to do, it completely throws him off and he can't handle it. Often he will reply like "Well, I already planned to" or "that's going to mess up my x,y,z". It's just contrary to whatever he had in mind and he blows, too. Exhausting. Truly exhausting. I hope it gets better. That's all I can say. Will be thinking of you.

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Have you given your doctor a copy of the white paper that was released or the NIMH website info on PANS? Maybe that will help convince that antibiotics can be given longer. You can access both through at www.PANDASnetwork.org

 

I remember those days very well...not wanting to go home, be home, be with my daughter. It is heartbreaking. Hang in there. You are on the right path. Things can and will get better.

 

Kara

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so how long will she be off abs when she is swabbed?

just realize if you swab too soon off abs, you can get get a false neg swab.

 

This article from IOCDF receommends 3-6 weeks of antibiotics initially.. http://www.ocfoundation.org/ocdinkids/PANDAS/

 

 

.

Lots of PANDAS kids end up being on long term antibiotics...sometimes this is for prophylaxis (strep prevention, like how you would prevent acute rheumatic fever), sometimes they just find, once antibiotics are stopped, symptoms return quickly(like in Saving Sammy).

 

It is unknown if these kids have chronic strep (intracellularly, in biofilms, or lurking somewhere in the body, maybe the sinuses--kind of like how lyme is chronic) or if the antibiotics have some other properties such as anti-infammatory or immune modulating, or modulating glutamate that are helping with the pandas symptoms.

 

 

In any case, hopefully, your ped needs to understand that especially after the first 1-2 exacerbations, a typical 10 day course of antibiotics normally isn't enough to stop PANDAS in it's tracks. If PANDAS has been going on for a while, the wheels of auto-immunity have been set in motion.

Edited by EAMom
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