Pandasmom's Blog

living with PANDAS, not the furry ones…

Changes post IVIG #3 November 23, 2009

Filed under: Uncategorized — pandasmom @ 5:30 pm

Post for journaling sake

  • some manners have returned
  • spoke to strangers when questioned
  • art skills continued to improve
  • i showed her how to make the number 4 and she immediately copied me
  • Both nights home there have been no night wakings and 10 hours of sleep
  • A is much more interested in moving around.  For the past several months she has chosen only sedentary activities.  Today she swam in the bath with her sister.
  • At times the chorea is diminished.  However, yesterday it was here in full force
  • There have been a few instances that would typically have caused meltdowns that have only resulted in a grimace or a grunt.  However, there have still been several blowups.
  • We have not seen her be able to play on her own yet.  If she is actually healthy, we can see this for a time.
  • With only a simple prompt, A shared her new playdough with her sister.  However, she will not let C some anywhere near her new, coveted kitty.  Any suggestion of letting C look at the new kitty sends A over the edge. 
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Full fledged meltdown November 20, 2009

Filed under: Uncategorized — pandasmom @ 6:05 am

A just had a full fledged meltdown.  She asked for a popsicle and I told her no.  She was unable to handle the answer and had a full fledged meltdown where she screamed and kicked everything in sight.  She kicked the hospital table over.  She has never really acted this bad in public other than at Gymboree.  Certainly never at either of the hospitals.  This is not a good sign.  The one symptom that we HAVE to see improvement on has so far shown no signs of improving….

 

First infusion is complete

Filed under: Uncategorized — pandasmom @ 4:39 am

We completed the first infusion just about an hour ago.  If the PEX hadn’t failed us so badly I would almost be able to say that I have seen a few signs of success.  But since we had such a let down from PEX, I am super hesitant to get excited about anything.

However, there have been a few things that we have seen that can’t be discounted.  The entire time we were in Georgetown, A never spoke to any of her nurses.  The most she could do would be to look at me and ask me with her eyes to answer for her.  There was a life specialist there that she liked very much and at some point each day she would talk to her.  But it was almost always in a whisper and she would never look her in the eye. 

After A woke up from her nap, she spoke to our nurse without much prompting.  Now, she recognizes this nurse from last time and the nurse is very kind and nurturing.  But I still think there is a difference in how she acted towards her and towards the special life specialist.  We just had shift change and a brand new nurse that we have never seen before came in.  She is also very good, but she is not a mom age and has short hair.  A really doesn’t like short hair for some reason and is very vocal about it.  She tends not to like people with short hair.   But after I spoke for A and introduced A to the new nurse, A started speaking to her!  I think this is huge!  A also kept on talking with the nurse for a bit.  C was still here for a bit when the introduction was made, but I don’t think that made too much of a difference.

The other one is that A somewhat adamantly demanded markers from nurse Carrie.  Carrie went to look for some markers and came back to tell us she didn’t have any but had some fun crayons.  A looked at them and told her she didn’t want to use them.  Carrie pointed out why they were fun and A took a minute to think about it.  Then she said “It’s ok, we can deal with that”.  John and I haven’t heard A be able to “deal with” anything since pretty much the last IVIG.

This is all great and well, but our biggest challenge is behavior.  I would rather have her never speak to anyone and be able to act somewhat appropriately.  C touched one of A’s puppies and when A noticed she went into a rage.  It was a bit scary because she was hooked up to everything while this was happening and she was flomping all over the place.  I was terrified that the poke would come out and we would have to do it all over again.  I don’t think we could get her to do it again at this point without total sedation. 

I have to be patient.  We are only halfway through and I can’t expect a miracle.  My expectations are both extremely high and extremely low at the same time. 

 

St. Anthony

Filed under: Uncategorized — pandasmom @ 4:27 am

Over the past few months, John and I have become much more religious.  We are trying very hard to let God share in our burdens.  So far we haven’t felt a lot of relief but I think we are changed forever.

Ever since high school I have been a huge believer in St. Anthony.  So much so that the dog’s middle name is Anthony.  It took us forever to have kids so we gave the dog this name.  Just tonight after A exploded about something, I realized that I haven’t prayed to St. Anthony about this.  So far in my life, he has never let me down.  If anyone else who reads this blog has some one/thing they pray/speak to and would want to add a quick mention of us, we would be grateful. 

 

Anguish for A November 19, 2009

Filed under: Uncategorized — pandasmom @ 9:01 pm

We are back at the hospital for IVIG.  Last night after talking this through a million times in my head, with John and with the other PANDAS parents, John and I realized that perhaps PEX alone wasn’t enough and A should have had IVIG with it.  I still don’t know why IVIG wasn’t part of the PEX, but it wasn’t for us or any of the other children. 

As I was talking this out with John, I realized that perhaps we had never cured the real virus/bacteria that made A sick in the first place.  Then I remembered another parent saying they had dramatic effects with IV antibiotics with their PANDAS child.

So we are now at the hospital to do 2 days of IVIG and 3 days of IV antibiotics.  When we told A that we had to do this she just crumpled.  She didn’t outright cry but instead fell in on herself and pretty much shut down.  To me, that seems like such a bad sign.  It seems like she shut her emotions off.  Should you be able to do that at 4?  I wouldn’t think so.

We got a child version of valium for her and it had an effect on her to some degree.  This was good because so many things we have tried have had the adverse effect on her.  But when they unwrapped the needle she became absolutely hysterical.  It seemed it was going to be impossible to get her to be still enough to insert the needle.  She was beyond devastated that this was happening.  She kept screaming “NO, NO, NO!!!”.  All the other times have involved crying but no words.  This was heart wrenching.  She is very mature though.  We talked to her about why we had to do it and she calmed just slightly.  Enough for the very skilled nurses to get the needle in.  But she jerked and the poke was unsuccessful.  We waited a while and got an additional nurse.  John and I stepped back until they got the needle out.  A screamed again when she saw it but the nurses are very good.  However, she was so tense, they were only able to insert the IV.  Not draw any of the 7 tubes of blood they needed. 

A is now asleep and the lab came back to do another poke (number 3!!!) to attempt to get blood this time.  A did wake up during the poke.  It took her a while to realize what was happening but she eventually looked down and saw what was happening.  She was terrified and very mad.  Luckily she was very groggy though and did go back to sleep.  The numbing cream played a part in that I think. 

The IVIG just started.  This is the part that is extremely slow.  We have at least another 6-8 hours for the treatment to finish.  But she has already had her first dose of IV antibiotics.  I am cautiously hopeful that we will see some benefit from this. 

 

IVIG Again

Filed under: Uncategorized — pandasmom @ 1:05 am

It looks like we are heading back to the hospital for more IVIG.  Things have continued to deteriorate further and we still have seen no benefit from the PEX.  I met with the ped today and she and I both agreed that we should try to do something to ease A’s agony.  I spoke with A’s preschool today and the teacher said that A has been a different person since returning from PEX.  She has been more withdrawn, less engaged with the other children and had a few difficult times.  The teacher said that A has gotten progressively worse since our return.  This is identical to what we are seeing at home. 

Currently our ped is speaking with the insurance company about trying to get a year’s coverage of monthly IVIG for A.  I hope we get to go in tomorrow first thing for this.  John and I are heartbroken to hear that the one place A was thriving has even become difficult for her.  I am just hopeful that IVIG will help her.  I have concerns since the PEX didn’t work as to whether the IVIG will work this time or not. 

 

Parenting with Grace November 18, 2009

Filed under: Uncategorized — pandasmom @ 6:43 pm

This week has been about acceptance.  I think that John and I have come to accept the fact that we have become the parents of a special needs child.  I highly doubt it is ever easy to learn that your child has special needs. But I also wonder if a layer of difficulty has been added because for 3.75 years we assumed we were parenting a typical child.  The level of difficulty we face is neither here nor there, it is just a fact.  But I believe it is good that we are coming to acceptance rather than trying to change this fact. 

What we are having a very difficult time doing is parenting A with grace.  In the few minutes that things are hunky dory we are the most graceful parents you will ever see.  But for the other 23 1/2 hours of the day there isn’t a lot of grace in this house.  I am certainly not trying to win any parenting contest with my skills as a mother.  But what I would like to do is provide a happy home life for my girls and my husband.  I feel that if we could just accept our situation and handle it all with a smile we could provide this environment.  However, it is hard to manage that when you are constantly getting hit or screamed at, grunted at etc.  It is hard to remember that your child is acting this way because she is sick and she is not doing it purposefully.  Anyone else in our situation who has mastered this, please leave me a tip!