Pandasmom's Blog

living with PANDAS, not the furry ones…

Elephant boats and Kitty cars too December 18, 2009

Filed under: Uncategorized — pandasmom @ 6:22 pm

The previous 2 hospital stays completely traumatized A.  For several weeks now, I have been gently prodding her to see if there was any kind of treat that might entice her to endure another poke.  She firmly told me no each time I mentioned this. 

Since it is the Christmas season, A has seen Santa several times and heard many Christmas carols.  One of the lines in “Santa Clause is coming to town” mentions a “Kitty Car”.  As soon as A learned this verse she started telling us that she would be asking Santa for a Kitty Car.  We had no idea how we were going to deliver on this because we had no idea what a kitty car was.  We told her several times that Santa might not be able to bring a Kitty Car because he wasn’t sure what it was.  A would then describe it as a pink box with wheels and a new kitty in it.  She was very convicted on what it should look like.

Last week I decided to ask her if a Kitty Car would entice her to be able to do another poke.  She didn’t hesitate too long before saying that she could do it.  Score!!  But now I had to just find a kitty car!!!  Well, luckily, I did find my version of what I thought she had in mind and luckily it worked.  She was thrilled!!!

kitty car

John and I were trying to hold the Kitty Car until after the poke was successfully in place.  Last time it took 3 pokes and we didn’t want to spoil the surprise before we were done with pokes.  We let them try the IV placement one time but A was too anxious and jerked away as the needle approached.  When they were trying again she was just about to get hysterical.  John and I decided that was the right time to get the present out and it worked!  It took her mind off the poke and they placed the IV and drew the blood before she really noticed!  Once the IV is in, the rest of the procedure is pretty easy for A. 

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IVIG #4 today December 17, 2009

Filed under: Uncategorized — pandasmom @ 2:29 pm

Today is day 28 and we are headed back to the hospital.  A definitely continued to show improvements once this last IVIG kicked in.  However, starting on Tuesday, I could see small signs that she was starting to deteriorate.  The signs were very small and would only be noticed by John and I.

Day 26:

  • getting tired much quicker than earlier in the month
  • less able to deal with frustrations
  • increase in chorea

Those are the only signs and that isn’t too big of a deal.  But it is interesting that I did notice things once I started looking for them. 

Lat month’s IV insertion was beyond traumatic for A.  She was a complete wreck and it was because it came so quickly after all the procedures we had done in DC.  We spent the last 3 weeks with a therapist working on the trauma of all the medical interventions we have been through – namely the pokes.  The therapist advised us to tell A about today’s IVIG ahead of time.  I was scared to pieces to tell her but since we were advised to do it, I told her with the therapist’s help.  Poor A was so mature about it.  She just listened and got very quiet.  But as the news and the reality sank in, she literally crumpled in half.  It is so sad to watch.  She did this last month when we told her we were doing it as well. 

I tried to make yesterday as special as possible for her.  After the therapist’s office we went to the craft store and got some more special supplies.  We have also hired a babysitter for Wednesdays and she was here yesterday.  The babysitter is aware of the situation and knows that her job is to make both girls feel very happy and special.  After the babysitter left we made smiley face cookies with daddy.  I told A that you really can’t be sad if you are eating a smiley face cookie.  She agreed with me.  We will see how this holds up today though. 

 

21 days post IVIG 7 to go December 10, 2009

Filed under: Uncategorized — pandasmom @ 3:42 pm

I haven’t written for a while and that is because things were just too bleak.  I was hesitant to write and just complain about our situation.  Without having anything positive to balance it with I didn’t want to just dump all the bad stuff.  Here is a quick summary of where things stand right now.

We did our 3rd IVIG 21 days ago.  We did the PEX on Nov 2-6th.  Our ped and John and I feel that somehow the PEX actually harmed A.  I’m not sure how this is possible because it was supposed to be curative for her.  But somehow it seemed to have set her back even further than before the procedure.  Let’s just say that was not good. 

After returning from DC we met with an immunologist who was both nice and very knowledgeable.  He ruled out CNS Lupus and instead said that A has an inflammatory autoimmune disease.  Because her symptoms don’t fit neatly with such diseases as CNS Lupus or others he is calling her disease unnamed.  Just an inflammatory autoimmune disease.  He said it is not uncommon to have an autoimmune disease without a name.  He also said he isn’t surprised that the PEX didn’t work.  He feels that her issues might go deeper than the level the PEX removed.  This is an issue we would not have discovered if we hadn’t actually done the PEX.  He agreed with our plan to do monthly IVIGs.  He feels we will need to do them for between 1-5 years monthly.

So, we did the 3rd one and we saw some pretty instant results.  But then things went back to bad.  And they stayed there.  John and I were pretty heartbroken.  Things were very bleak at our house.  John and I were feeling like the IVIG had failed just as the PEX had.  We were not sure what the plan was going to be in order to live with this situation long term.  When things are bad it is very hard to sustain family life here. 

But then something just simply changed and A got a tiny bit better. She is happier, she is singing, she is able to deal with life in a much better way.  We still have a life that most people would not know what to make of, but for us it is very tolerable.  And it came just in time.  John and I can now say that this IVIG did have an impact.  And that is good because we return to the hospital a week from today for the next infusion.  We had to make a decision on moving forward and without this change in A it was going to be difficult to subject her to another stay.  However, we now know it will be the right move.