Update on Pixie :(

[FallingApart]

Manda,

 

That is interesting that you say a therapist thought your DD might have been abused. That is the first thing our ped thought with our DD because of the initial symptoms and how sudden they were. We went with it for a while until we became aware of PANDAS.

 

I would imagine that most of us parents are suffering from PTSD from all of this. I'm hoping your situation improves soon and that your appt goes well today.

[T_Mom]

Manda, I am so, so sorry you are going through this rough time. Praying for you all. It is tough, and unbelievable when you are in the midst of it, and prayerfully it will be in the "past" with the proper treatment. You tried the steroid burst and observed her, I just looked back at your posts and see that you did initially see improvement on the steroids and then she had a really bad time, and she has not been on antibiotics. Please do keep us posted as to what Dr K says.

 

We were in absolute ### when going through the worst of it, my heart goes out to you--All the best to you and your dear family as you sort through next steps.

[colleenrn]

Manda,

 

Could she have strep or have been recently exposed? Some PANDAS kids really worsen when they are on no antibiotics b/c the strep that is somewhere in their body just starts recolonizing and takes off.

Colleen

[dcmom]

Hang in there Manda. I am sure once you see Dr K, and get her on a high dose of antibiotics, or IVIG, things will start calming down.

 

It is so painful to see them lose so much time, and feel helpless.

 

I would not worry about school, once you get the pandas under control (I don't think it should take THAT long), she will catch up.

[pixiesdaddy]

Hi,

 

This is pixiesdaddy. Finally registered and got on here too. I saw that Manda hadn't posted a latest update, so I thought I'd vent and continue the story.

 

We saw Dr. K yesterday. He wants to go ahead with IVIG, which is great. Got frustrated today because I thought we were going to be able to actually schedule it, but it looks like we need to wait through the long weekend just to try to get a date. I really had my hopes up to get her the treatment this coming Thursday, but I guess we'll wait and see. It's taken us a long time to get to this point, but now that we're here, I'm in such a rush to move forward.

 

Spoke with Pixie's school, and they seem like they will be accomodating towards letting her come back post treatment if things go well. That's kind of a scary thought though. I know from listening to Manda, that many kids have saw-toothed up and down days after IVIG. I don't when we'd be able to "guarantee" that Pixie wouldn't have an outburst at school. That seems a lot to ask, even from a totally healthy kid. I'm kind of kicking myself for having her in an area where private school was the best option. I'm a public school teacher, and I know that a public school can't kick a kid out for a medical issue.

 

This was a very surreal day with Pixie. It was supposed to be my first day back to school to teach. Felt very out of place. I can only imagine how Pixie feels. One day she's in school, and then the next her whole life is upside down. In my head, I count days. If we have the IVIG on this day... and then she recovers for this many days... then maybe she could be back in school... and I could be back in school... and life could be... but I know that I'm just fooling myself to believe that there will be something predictable about this.

 

Anyway, at least it is a hopeful sign that IVIG is now on the near horizon. That at least means we can take another step down the pathway towards figuring this all out.

 

Pixie's Daddy (Dan)

[EAMom]

My dd's 2nd grade teacher (that's when her bad PANDAS episode happened, 2nd 1/2 of 2nd grade) also thought our dd had been abused or molested.

 

PS Welcome Pixiesdaddy!

Why did I think Pixie was on Azith? Hmmm...that might account for the big problem post pred, esp. if she was exposed to strep or had low levels of strep hiding out somewhere in her system (throat, sinuses, etc.)

[thereishope]

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Edited October 18, 2016 by vickie

[T_Mom]

Hi Dan--First let me say I am really sorry you guys are going through this right now--

I know how -- if the symptoms are "bad" -- it is all encompassing.

 

Did Dr K suggest putting her on Augmentin now?

When we did the initial steroid burst we also started antibiotics (different doctors)

 

When she is able to go back to school you will know--until then, hang in there.

All the best--

[pixiesmommy]

No, Pixie is not on any antiobiotics, though Dr. K told us about putting her on Augmentin for a year after IVIG.

 

School has been sending work home, and actually, Pixie's more willing to do the work at home with me than at school right now, so that's not actually that bad. To me, her most pressing symptoms are 1) full body tics/dystonic movement at this point, 2) extremely low frustration threshold (the least disappointment seems to be enough to send her over the edge), and 3) sleep issues (difficulty settling in for the night).

 

If I could stay home all day long and just care for her, it wouldn't be that bad. She does okay when she has someone's absolute 1-on-1 undivided attention 24/7. Unfortunately, that's just not realistic, particularly in a school setting and with a 2-year-old sister.

 

Dan

[thereishope]

I don't know if you answered this in another post, but has she been tested for strep? Have you noticed any other symptoms of a cold, allergies, etc?

[pixiesmommy]

No, she hasn't been tested for strep. She complains daily of a sore throat, but she also does a lot of screaming. It's not out of the ordinary. She has complained for the past 3 nights of a sore nose (inside of nose, septum) but she may have been picking- hard to tell. She hasn't had a nose bleed and I have not noticed any sort of nose picking or tic/OCD to do with her nose around me.

 

About 3 weeks ago, the ped noticed she had some nasal drainage in her throat (we took her in to see if she had a UTI because of the bedwetting) but he would not test her for strep at that time as he saw no significant reason to (he does know that we are investigating PANDAS, but is not knowledgeable about it...)

[thereishope]

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Edited October 18, 2016 by vickie

[T_Mom]

If strep was the culprit before, I would definitely take her for a strep test and request/demand it. If they won't, then go to urgent care and tell them she has a sore throat and was exposed to strep at school (white lies are no biggie when it comes to this). Since it's the weekend they won't question why you went there vs the regular peds' office. If you need to, drive to a different hospital then the one you were at a few days ago.

 

Others on this forum have also said that strep can be in the nose then drip to the gut. It's definitely something to rule out. If she is sick, the more time it goes untreated, the longer recovery will be. Back to back infections isn't something to mess with. That happened with my son.

 

My son doesn't get any symptoms but PANDAS behavior changes. I'm realizing that's actually quite common in PANDAS kids.

 

 

By all means I would get her tested for strep too--right away. A minute clinic is fine as long as they will "develop" the culture for the 3 day period necessary-- I can't help wondering if this would be different if she was on antibiotics.

All the best--

[Suzan]

I agree about the strep test and if she has any strange or suspect symptoms in the V area, I would recommend a swab there too since it does seem like so many PANDAS kids don't get regular strep! My girls may be the minority about this but I feel the need to get the word out....

 

Big, huge hugs from us to you. guys...

 

 

Susan

[pixiesmommy]

I guess my train of thought is... Why bother to put her through a strep test and another dr appt when Dr K said it doesn't matter. He did not care if she had strep right now or not and didn't even LOOK at her throat when we were there a couple of days ago. We even asked if we needed to be swabbed to see if we were carriers before she started any treatment and he looked like we had 3 heads and said, "No, why? You can't keep her in a bubble!" When we were describing all the behaviors that had been ramping up since ending the steroid treatment, he said, "It doesn't matter WHY she is having these behaviors- the steroids, strep, another infection.. that is in the past."

 

So...?? I guess, I am saying, isn't he the expert? (Not that I inherently trust doctors- oh, don't get me started on THAT!) but if HE doesn't care whether she has strep and isn't willing to put her on ANYTHING until IVIG (his words, not mine) then what good would it do me to have a positive 72 hr culture for her??

 

*I read this outloud to my DH and realized it sounded kind of snarky... not meaning to be at ALL. Just confused what good the KNOWING would do, if we are set to have IVIG on Thurs anyway.. now if we have to wait LONGER, I might push the issue with giving her something NOW to help... but?????