An almost normal day...

[browneyesmom]

Oh gosh... ok, so we met with the Pediatric Neurologist this morning, I talked with our Immunologist this afternoon & then we met with our Pediatrician.

 

Today is the FIRST day in weeks, that I have not seen DD11 have an episode!!!!! I guess it is too soon to say if this is a result of the respiradine they just started in the ER (after talking with Ped Neuro) last night or just a fluke, but gosh, what a marked difference! In bed already (on the sofa at the foot of our bed), hugged me goodnight, then stroked my face & asked me to give her a late Christmas present. I asked what she wanted (thinking it would be a request for some toy or a trip to her favorite clothing store or something) & she said, "Please go to bed and get some rest tonight, Mommy; you're so exhausted."

 

 

My eyes filled with tears... THAT is my daughter!!! Oh, how I have missed her!!

 

Some other changes to the meds.... Pediatric Neurologist had her come stand near him and asked her what she would most like to change about this condition she has. Her response was, "to stop having times where I try to hurt people." Her dad and I both teared at that one. He's starting Tegretol, decreasing Prozac for 5 more days at 5 mg, then D/C that one. He's leaving her on the Risperidal & pediatrician said that we do have room to increase, if needed, for travel to see Dr. B in early Feb... hopefully, she will be improved enough that it won't be needed.

 

Spoke with our Immunologist also. He discussed doing IVIg again at 4 weeks after the first one, unless she is declining. I relayed how first day after, she woke and said she felt better than she had in a long time - couldn't even remember how long. However, yesterday, had 2 rather long episodes & we wound up in the ER again - 5th time in 2 weeks. He said, "Ok, let's move that up to 3 weeks out" - so, she will get it again in about 1.5 weeks.

 

We stopped at a store on the way home this evening & saw a friend I met via her daughter & mine being in school & church classes together in early elementary school. We exchanged brief updates & I told her we'd been in hospital due to the PANDAS (her DD - also 11, was diagnosed with it a couple years ago also, but not as unrelenting as mine). She updated me that she too, has been having a rough time with it flaring up again. She'll call me to discuss further to try to help her little one.

 

I sub in our school system as a nurse & one of them called me today to cover for her - took the opportunity to do a little PANDAS education.... she asked her name so she can pray for her.

 

I'm starting to feel like we might actually make some headway on this PANDAS beast! That is today's update... and I am off to get some sleep now... late Christmas gift for my little love.

[tpotter]

Beautiful! I so hope it continues.

[KaraM]

Hopefully this is the beginning of an increasingly speedy recovery. Keep us posted.

Kara

[thenmama]

Excellent news about your dd's progress! So glad for you both. May that good healing continue!

 

Big hugs.

 

 

TH

[Joan Pandas Mom]

You are doing such a great job. God Bless.

[Megs_Mom]

So glad to hear of a good day - we are all rooting for her!

[browneyesmom]

Thanks so much everyone!

 

Her home-bound teacher came today for a couple of hours... she started into an OCD episode just before he arrived, but somehow managed to pull it together and get through his visit/teaching. Lost it as soon as he left. Was unresponsive to us, incorrectly diagrammed a chemistry element that she understood just fine when he was here, had aphasia & was just coming out of that when student ministry staff stopped by to see her... still took about 20 mins for her to fully regain use of her vocabulary, then she had another just before bed tonight.

 

My hairdresser was here when it happened, so I had to keep getting out of the chair (yes, with color on my head) to help her.... and yes, I did indeed have color all over my head when student ministries staff arrived. Oh goodness... what an evening!! hahaha Thought I'd share so everyone else could have a chuckle!