Pandasmom's Blog

living with PANDAS, not the furry ones…

A’s Physical State October 31, 2009

Filed under: Uncategorized — pandasmom @ 2:09 pm

Little A is not in a good place physically.  I wonder if her body knows it is just biding it’s time until we go and try to fix it.  It turns out that the labs we got back so far have all been normal.  The one we were most concerned about was her liver and her billirubin level.  It was normal.  That is very good news.  But our ped thinks that it means her body is in trouble in general.  She has moved from being yellow to just being extremely pale, with red-rimmed eyes and purple circles under her eyes.

Also, we have spent the entire summer with A getting 6 hours of sleep each day.  Even with that little sleep, she still had an enormous amount of energy.  But all the sudden this week she is extremely lethargic.   She is saying things like “I can’t make it” and “I can’t go on” and “I just want to go home”  We have been reading a lot of books, snuggling a lot and watching a lot of tv.  Last night at 6 pm she abruptly announced that she wanted to go to bed.  This is unheard of.  Our PANDAS child has NEVER wanted to go to bed.  We’ve spent the past year basically tricking her to fall asleep.  This was the first time she has ever asked to go to bed.  But her asking to go to sleep at 6 pm caused enormous anxiety for me.  I was terrified she would be up for the day at 2 am.  I am shocked that she slept until 5:30.  I think this shows that she is in bad shape.  I am very happy that we leave tomorrow. 

 

More worries October 29, 2009

Filed under: Uncategorized — pandasmom @ 4:09 am

A has been looking very pale since Sunday.  Yesterday, I noticed that her eyes are very red rimmed, even when she is not crying.  Then, today, she has dark circles under her eyes.  By this afternoon she almost looked yellow to me.  Add to that the act that she got up for the day at 2:45 but was acting different than she usually does after pulling an almost all nighter.  Usually she will still be very peppy and very energetic.  She will be more prone to rages and tantrums, but she has a lot of energy.  Today, she took 2 naps which is unheard of.  And she remained lethargic all day long.

Finally at 2:30 I was overwhelmed with nerved.  A didn’t have a fever but she just looked terrible.  Your child shouldn’t look yellow!  So I called the ped but she was full for the day.  I left a message for the nurse to call me back.  10 minutes later, the office called back and they had squeezed us in at 4:30.  We went in to meet with the ped and she looked at A, listened to my symptom list and when I asked how could a child look yellow?  And could someone spontaneously get jaundice?  She responded with “You can if your liver is failing or not working properly”.  This had never occurred to me.  However, the word that I was using to describe her was that she looks like something in her body is failing or is shutting down. 

By this time it was 4:45 and our ped asked me if I thought A could handle another blood draw.  It has only been 7 days since the last one.  I completely agreed that we needed to do a blood draw but I didn’t think A was capable of handling it.  But, after she said liver failure I decided A would have to handle it.  I made the ped break the news to her and of course A started whimpering and crying immediately.

Luckily just before going to the ped’s office, we had stopped at Target to get all of our prescriptions.  Uncle J told A she could pick out any toy that she wanted.  A chose a doggie that came with a doctor kit so she could make him all better.  We had the doggie with us when we went for the blood draw.  A was still hysterical, but I think the doggie helped.  My heart breaks when I watch her do that.  And they weren’t able to get any blood on the first arm and had to go to her other arm.  A was not impressed.

If something is wrong with her liver there seem to be 2 possible causes.  One is all the medications we have been giving her lately.  If that is the case, I am not that concerned because we can taper off of them and I would imagine we can fix her pretty quickly.  What I am terrified of is that there is a deeper, underlying issue that is causing this that has nothing to do with the medications.  That it is a problem in addition to the PANDAS.  That scares me to death.  My mind starts going to very dire circumstances that I don’t want to think about.  The blood results are supposed to be back tonight but it is 9 pm and I still haven’t heard anything.  This is extra stressful.

 

The Swine flu has hit our household October 25, 2009

Filed under: Uncategorized — pandasmom @ 8:06 pm

On Friday morning I woke up with a sore throat.  No amount of advil would take the pain away.  By the afternoon, I had a terrible headache and a fever.  I looked up the symptoms of the Swine Flu and it seems that I have them all.  I am really hopeful that A doesn’t get this.  I am even more hopeful that she has already had it and is the one who gave it to me.  John says that she didn’t appear sick so she couldn’t have had it.  But I think that from the outside, I don’t look sick either.  If she had it first, it could explain why her behavior has been SO bad over the past few days. 

She had blood drawn last week and one of the tests showed that her immune system is inflamed.  Our ped said that this means she is sick in some way but we don’t know for sure what it is.  She was thinking it was strep or something like strep.  I am hopeful that it could have been the swine flu and we can be done with it at this point. 

 

PEX Promises?

Filed under: Uncategorized — pandasmom @ 7:41 pm

We still seem to be scheduled for PEX for the week of November 2.  We booked our tickets and are set to go.  I feel a bit like we have gotten the run around too much and that we might not get to go.  Dr. L’s office has told me that we are set to go unless there is a problem with insurance, so I should have faith in this.  But I’m not able to say we are for sure going.  I keep saying “if” we get to go.

I have all my hopes pinned on the PEX procedure that it will restore some calm to our family.  That our A will return to us and that all of this stuff will eventually fade away.  I think it’s dangerous to put so much faith into one procedure.  These are just the fears that go through my mind regularly. 

But now I have a new one.  I have just read about another family that did PEX a few months ago and had great results from it.  But, after a series of unfortunate events, had a setback where PANDAS returned and they are looking to do IVIG again.  I don’t know all the details of the story because I don’t know this family personally, but I know enough to be scared to pieces.  It drives home the point that I can’t pin all my hopes on PEX.  The mom from this other family said that her husband told her that this craziness is their new normal.  It takes a lot of energy to sustain this level of normal!!

 

Preliminary PEX Schedule October 22, 2009

Filed under: Uncategorized — pandasmom @ 8:49 pm

I just spoke with Dr. L’s office and the PEX is actually scheduled for Nov 3rd.  We have our ICU appt on Nov. 2nd.  I feel like I don’t have a lot of faith in this though since we already got bumped once.  The scheduling person I am working with told me our insurance might get denied.  I think she must be having a bad day because she said that she has only had insurance denied one time and it was for this week’s IVIG patient.  This was not news that I needed to hear since we have already been delayed once.

I felt like telling her that we would sell our house to pay the $60,000 for the PEX as long as they would take us on Nov 2.  A woke up today at 3:45 for the day.  It is very hard to function in this house right now.  And if John and I are feeling this way, A has to be 100 times worse.  At 5:00 am she told me she wanted to sleep but couldn’t.  That made me very sad for her.  I was quite concerned that she wouldn’t be able to go to preschool but somehow she did.  All morning I expected them to call me to come get her but she made it through. 

On a different note: Another mom who has a child with similar issues pointed out to me that she thinks A might have sensitivities to milk and possibly gluten.  The reason for this is because A craves and demands milk like it is a drug.  But the most tell tale sign is her belly.  It is distended and is what led us to our very first blood work looking for allergies.  We did Celiac testing on A and found out only that she is allergic to eggs.  Nothing else showed up.  But it doesn’t mean that she might not have an intolerance for other things.  So, on Monday, we removed milk from her diet.  She isn’t happy about it but the whole thing is going better than I was expecting.  We have tried to replace her milk with goat milk.  A was not impressed.  I don’t really blame her.  I hope over time she will be able to try different milks and then when she is healed from the PEX, maybe we can go back to milk. 

 

Wednesday’s update

Filed under: Uncategorized — pandasmom @ 12:51 am

Just the facts, ma’am:

  • I believe John was up a lot last night
  • When A woke up at 4 am, I took over since I thought John hadn’t slept much.  She had no capability to go back to sleep so she and I got up for the day
  • Sometime after 5 am, John and C got up for the day but I still don’t know why yet.
  • While A and I were in the basement, something upset her.  She went into a horrible rage where she took every toy in the basement and threw it across the room, at me and at the dog.  It was a horrible occurrence and one I haven’t seen before.  We tried to get it on video, but I’m not sure we really got the intensity of it. 
  • From that event, we all tried to recover, which took a full 2 hours.  Then we got dressed and went to the ped’s office for yet another blood draw.  John and I are trying to get a good draw that will show a high CamKinase number.  A has been on steroids for 7 days which will suppress the number, but she is so sick that I am hopeful it will still be present. 
    • Once she realized what was happening, it was so sad.  She was terrified and was whimpering.  I know John was just as devastated as I was. 
  • We did see our ped briefly and I asked her if there was anyone local who could do PEX for us because A is so bad off.  She said no.  I don’t think the answer is really no, it is more that it is too difficult to make happen and we will accomplish this quicker with Dr. L.  The wait is excruciating. 
  • When they called us back for the actual blood draw, A couldn’t stop crying.  She was terrified.  I know she was more scared of what was going to happen than of what actually happened.  The phlebotomist was really quite good and was very sympathetic to A.  Once he actually put the needle in, she stopped crying.  All day though, she has been convinced that the “poke” is still in her arm and will not take the band aid off. 
  • After the blood draw, everyone was exhausted and luckily, somehow, I managed to get both girls to sleep.  All 3 of us took a nap which did all of us some good.  There were some more bad rages this afternoon.  A is in a place where she doesn’t have the ability to pull herself out of the rage and I have to help her.  This is so exhausting for all of us.  John and I let her go for a while thinking that she will be able to do it, but she is so sick right now that she is unable to.  It takes a LOT of effort to pull her back from these situations.  After the last meltdown that I pulled her back from, she needed 30 minutes of sensory time to calm down.  Since then, she has been a lot better.  I’m very hopeful that we all might get some sleep tonight.
 

Pumpkin Patch October 21, 2009

Filed under: Uncategorized — pandasmom @ 12:42 am

Let’s make a happy post.  Today was A’s first fieldtrip!!  It was so fun.  We went to the farm and got to pick pumpkins!  And it was so nice because siblings got to come with us.  I think this came at a great time because I was really questioning whether A would be able to go to school today or not.  So to be able to go to preschool with Mommy and C was a special treat for both girls. 

We walked through a field of giant pumpkins and then went through a tiny, preschooler maze.  Then we got to go and pet some animals.  This was very hard for me because Gammy has always told me that petting zoos are filthy and I was terrified of all the germs that A was being exposed to.  But I inwardly got over it and the girls got to pet a hen and a goat. 

I think the girls’ favorite part of the tour was digging for worms.  The farm had big piles of dirt that the children could dig through to look for worms.  Both girls loved this.  I knew A would, but I was surprised how much C liked it!  Here is a picture of them.

 worm bin

After all of this excitement everyone got to pick out a tiny pumpkin.  For our first fieldtrip, this was a success!!!