5 days after completing antibiotic

[browneyesmom]

My daughter seemed to be improving as she completed the antibiotic last Tuesday. Her schoolwork was getting better the prior week, she didn't have any outbursts for 4 days in a row last week as she completed it... although I could tell she was still having emotional struggles where she would need some space to recover, but I was really stunned and impressed with how well she was handling it and improving.

 

Then, she got home from her Dad's on Sunday evening and it seemed she was doing much worse again. The last two nights in a row, there have been frequent outbursts, lots of defiance surfacing again. (She actually tried to get out of the car on the way home this evening - sooooo scary!!! Fortunately, we were in our neighborhood and we did make it to the house safely.) I had thought we were getting better at handling them, but now I realize, that was not the case at all as she actually follows me if I try to walk away, sometimes nearly... attacking me, almost rage-like how she will grab at me or my clothes and get in my face, yelling at me... I had forgotten about that part.

 

I have to tell you that this is SO completely unlike my little girl... she has NEVER, EVER been like this before. She is generally just the sweetest, most considerate, sensitive child... so loving and gentle. This is TOTALLY out of character for her; she simply does not do things like this normally - something is wrong and it sure does seem that PANDAS makes sense the more I learn about it!!!

 

I can only imagine the torment in her mind that causes this to happen; it haunts me. I know it frightens and confuses her; she talks to me about that sometimes... poor little dear... my heart is so heavy for her... I can only imagine the confusing nightmare this must be for a child to endure!!!

 

She also told me that she mentioned to her dad over the weekend (he had visitation this past weekend) that she was tired and didn't feel well. Now, she is complaining of a sore throat, headache and nausea... sound familiar? Those are her classic strep symptoms! She said she feels like she has strep again. Bless her heart; she's had it so many times, she may just be right. I'll try to get an appointment tomorrow to have her checked and also find out if our pediatrician has had an opportunity to look over the research information, medical history, etc that I left at his office late last week.

 

I feel so drained myself just trying to research, advocate and help her through this day to day... how she must feel living with it herself... I suppose we will never truly know the depth of how they are suffering and how exhausting, confusing, terrifying all this must be for a child. It just breaks my heart!

[EAMom]

Hi Browneyes...

 

let us know how your dd is doing. I'd be currious to know if your dd tests positive again so quickly.

 

Also, how is your dog? when they cultured him did they do his throat (or rectal)? what antibiotic did they put him on? I've always heard that if dogs get strep A they're likely to just be transient carriers, so it is not really a cause for concern. However, I think this really falls into the realm of the unknown.... The ped we saw last week did mention she had a case (not pandas) where the whole family kept getting strep. The dog was positive and once they treated the dog the problems resolved.

 

In anycase...it sure would seem prudent to keep your dd on longer term antibiotics...at the very least until you know for sure your dog has re-cultured negative. (Hey... I wonder if you can use the rapid strep test on a dog?)

 

Hang in there!

[EAMom]

re dogs...I found this link informative.

http://www.justanswer.com/questions/wojx-d...rs-strep-throat

[browneyesmom]

LOL! You know, I do not know if there is a rapid strep test for canines!! That gave me a much needed chuckle though after a very difficult day; thanks! I do know they cultured ours. I thought I had posted at some point about our dog. I called back and spoke with the vet's office directly myself (rather than the second hand message I initially received). The type of strep she has is a strep that normally lives in the lungs and does not cause disease; she tested negative for group A beta hemolytic strep. However, as an abundance of caution, we treated her anyway.

 

Well, my daughter did test positve yet again for strep throat this morning at our pediatrician's office. He walked back in the room shaking his head and my heart just sank. Although, she has had it soooo many times now, she can just about self-diagnose. I have a pretty good idea from her symptoms and behavior.

 

He wrote for Amoxicillin and Azithromycin initially, then when I mentioned that I understood Dr. K was having a lot of success with Augmentin, he changed the Amoxicillin to Augmentin, so she is now on Augmentin AND Azithromycin. Guess he's not fooling around anymore. Fine with me.

 

He had reviewed all the info I left for him and had left a message for Dr. K, but had not yet heard back from him. He wants to draw labs on her: anti-DNase, ASO and several others, but he wants to wait until he talks/emails Dr. K to see if he suggests doing any others so we only have to do one stick - hopefully.

 

So, we are doing the antibiotics... we did discuss the steroid burst and he was perfectly willing to write for it. Honestly, I was the reluctant one. I don't think my ex is really on board with this yet and I would like to see the labs he is going to draw also since there are risks with IVIG as well. I do realize, at some point, that may be where we wind up. It's just that three weeks ago, I did not know PANDAS existed and I'm still trying to absorb an awful lot and I have to have my ex's consent to move forward so I am working on that also. If I jump too far ahead without him being on board, I know all too well that it will make this road we are traveling take a LOT longer to get her treatment. So, I'll give my ex another week or two for our pediatrician to get the labs and get closer to confirming the diagnosis and let HIM recommend it.

 

Instead of the steroid burst, I did ask if he would be ok with us doing the Ibuprofen BID again and he was fine with that. We also agreed to keep her on probiotics and plenty of yogurt. I did no sooner get the probiotic powder mixed into her yogurt... and she promptly spilled it on the dog's back. Sigh...

 

But before that, we get home and get my daughter her antibiotics and fed and the dog her antibiotics and fed and start on my daughter's studying... (I am going to probably have a conference with her school personnel due to all the absences and tardiness as her teachers do not seem to be very understanding)... and I went up to get my laptop and she starts calling for me in a panic... she had another episode of urinary incontinence... said she did not realize she needed to go again. Poor darling... I just hate all she has been going through with this. I will be so glad when we DO have a diagnosis and my ex IS on board and we have a plan as to how we are going to move forward.

 

It's so exhausting for everyone. I know you all know this.

[EAMom]

That's good that your dog didn't have GABHS. I'm quite certain they don't have a rapid strep test for dogs but do wonder if you could use the human version (which you could buy on amazon) on them. I know they have doggie probiotics...I think they have to eat them though, I don't think they work if you just spill it on their fur!

 

I think Dr. K. is out of town until March 5 or so (if my memory serves me correctly). He may be answering e-mail though...

 

IMO ASO/anti-dnase B are unecessary since you already have the positive cultures (or rapids). Re titers....check out the recent posts to AMYslp. http://www.latitudes.org/forums/index.php?showtopic=4464 Of course it may be interesting just to see what the titers are (esp. if you have to poke her anyway). My dd had low titers (twice) with full blown psychotic PANDAS and positive cultures....so we don't bother with them anymore. Titers can be useful however, if you never were able to get positive cultures (or rapids).

 

I think it does makes sense to get some basic blood work on your dd...chem. panel, CBC, lead, vitamin D...they did a bunch of that when our dd was in the hospital last year. Not the lead though...but she got that tested when she was 3.

[michele]

EAMOM,

Did you use the steroid bursts for your daughter? Are you working with Dr. K right now via in email or phone or in person?

I did not think you had done the IVIG yet ?

It has been confusing to keep straight with so many PANDAS postings lately.

Thanks,

Michele

 

 

That's good that your dog didn't have GABHS. I'm quite certain they don't have a rapid strep test for dogs but do wonder if you could use the human version (which you could buy on amazon) on them. I know they have doggie probiotics...I think they have to eat them though, I don't think they work if you just spill it on their fur!

 

I think Dr. K. is out of town until March 5 or so (if my memory serves me correctly). He may be answering e-mail though...

 

IMO ASO/anti-dnase B are unecessary since you already have the positive cultures (or rapids). Re titers....check out the recent posts to AMYslp. http://www.latitudes.org/forums/index.php?showtopic=4464 Of course it may be interesting just to see what the titers are (esp. if you have to poke her anyway). My dd had low titers (twice) with full blown psychotic PANDAS and positive cultures....so we don't bother with them anymore. Titers can be useful however, if you never were able to get positive cultures (or rapids).

 

I think it does makes sense to get some basic blood work on your dd...chem. panel, CBC, lead, vitamin D...they did a bunch of that when our dd was in the hospital last year. Not the lead though...but she got that tested when she was 3.

[browneyesmom]

Oh, yes... haven't you heard about the new transdermal probiotics for pups? You just spill it on their fur and it's absorbed right through their skin, similar to how Frontline works. Of course, if you bathe said pup as I did right away, all effectiveness is lost!

 

I thought it was Dr. Leckman who was out of town until March, but maybe that is why our pediatrician is having trouble reaching Dr. K. Maybe he will have more success with email.

 

I know a CBC was part of the panel he wanted to run. I'm certain he did not mention lead, but that's not a bad idea... I had not considered that one. We've been in this house (which is new construction) 3.5 years (and her dad has been in his house a bit longer) so I would really be shocked if there were a bump in that causing her sudden extreme issues the last several weeks, but I suppose one never knows and it's always good to rule out things. Thanks for the input!

 

Received an interesting email from her math teacher (which is where she had the biggest drop in grades - from A+ to failing)... she wrote that she does well when she is able to attend and that fortunately she is a strong math student and is able to get back on track. This was in response to me asking what her observations were of my daughter's work over the entire school year as I noted that she had struggled the first few weeks of the year and had only recently started to improve. Her other two teachers agreed with me, but in the one class where she clearly struggled the most, I got that odd response. Go figure! Maybe she was trying to be super positive even though I was very clear that I needed the truth, whatever it was they saw that to be. In the case of her math class, her grades very clearly tell the story.