Pandasmom's Blog

living with PANDAS, not the furry ones…

We are back home. For now October 14, 2009

Filed under: medical — pandasmom @ 10:56 pm

Dr. L is very responsive.  I was quite impressed with how understanding she is of the PANDAS situation.  When I told her staff we were unable to walk down the street I didn’t have to explain further that getting on a plane might be a tinge more difficult than the street.  Her staff said that they would speak with her as soon as she got in.  My only reason for calling them was that I was hoping we could start the steroids that day rather than waiting until we got back home.  Our flight wasn’t until very late and we were just sitting there watching Elmo.  I thought that starting the steroids might be able to help us clear her mind since she has had a quick response to most other treatments.  But, Dr. L asked me to come back to the office.

Of course I said yes but then I had to figure out how to get there.  If I wanted to get to the airport as well it would be more cost effective to rent a car.  So I did.  Strangely, when we walked over to get the car A was fine.  We had to walk 4 blocks to get to the car and we passed a fire station and many buses and garbage tucks and she was fine.  I asked her if the sounds were bothering her and she said no.  I was floored.  It had only been 2 hours.  How was this possible?  I asked her if she thought we still needed to see the doctor and she told me yes.  Now, she is only 3 so that is a bit of a loaded question.  However, right now she is extremely shy.  Dr. L is not her friend since she has only seen her once.  There was nothing fun about her office and A didn’t like that we had to wait for her on Monday.  In reality we didn’t have to wait for her.  She saw us on her day off and was taking care of many things.  We had to fit into that which A saw as having to wait.  We were there for about 5 hours on Monday.  A told me she wanted to see the doctor because she was very worried.  We went through all her worries and they consisted of all the children she saw get hurt this summer and whether they were ok, Grammy’s cold and if she is better yet, other children taking toys away from her and her not being able to deal with it when this happens, what would happen if she burns her finger and on and on.  This was the first time  she had really shared her worry list with me.  I know that children worry about a lot of things.  But I don’t know that the 3 year olds spend all their time worrying.  If there are any non PANDAS parents reading this who want to chime in with a comment, I would love to hear it. 

We then eventually got back to Dr. L who somehow fit us in.  We went in and weighed and measured A for her new prescriptions.   Dr. L took us in to one of her rooms and asked A what had happened between yesterday and today.  There was no way A was going to talk to her so I briefly told Dr. L the story of that morning.  But I didn’t tell Dr. L all of A’s worries.  I wanted A to use her own words.  We asked her and asked her but A wouldn’t talk.  Finally Dr. L started asking her the question in a different way.  A started to get vey agitated and was facing the wall with her back to Dr. L and would only occasionally look at me.  All the sudden she blurted out “I’m afraid I’m going to die”.  I gasped and almost fell off the chair.  I told Dr. L she has NEVER said that before.  Dr. L told me this was very common.  I said it’s not common for a 3 YEAR OLD!!!!  And she told me no, it’s common for PANDAS children.  At that point Dr. L said she was going to see if her crew could fit us in for PEX.  

We spent the rest of the day waiting around to see if we could get in.  PEX takes between 2 and 4 days to do. They don’t want to do it over the weekend so I wasn’t sure if we would even be able to do it even if they were available.  As it turns out the hospital is full from the swine flu so we couldn’t get in.  While they were trying to decide what to do with us and when they could get us in I tried to decide what to do with A and I.  Should I stay in DC?  Go to a friend’s house in Richmond or fly all the way back home?  I was so at the end of my rope that I was incapable of making this decision.  Plus, it was already 4 pm.  Luckily John was available and was able to be rational for me. 

After we went back to Dr. L’s office they told me we could hang out in DC until they might get us in or they could schedule us for October 26th.  Even I was able to say that we should go with the scheduled option.  We got the prescriptions for the steroids and the new antibiotic and ran for the airport.  We got to the airport and found out there was a delay for our outbound flight.  We taxied and sat for 90 min and then flew for 6 hours.  We missed out connecting flight and had to spend the night in the airport.  I was terrified of the germs that A was coming in contact with.  But, we finally got out this morning and made it home. 


2 Responses to “We are back home. For now”

  1. fran melle Says:

    Hey wow what a day u had. Jen and I are thinking of you and we love u. We r praying.

  2. Paula Says:

    Oh my goodness, what an ordeal!!! So glad you’re home safe after all that.

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