Pandasmom's Blog

living with PANDAS, not the furry ones…

Rough Day October 21, 2012

Filed under: Uncategorized — pandasmom @ 2:41 am

After quite a while of pretty good days, today was very rough. I am so hopeful it is that A got overtired. I can only hope that it is something as simple as that. She has had to stay up late for 3 days in a row and then have jam packed days as well. Today resulted in a meltdown that pretty much the entire school was privvy to. The first one since she started there last year. She is in bed now so that I can think about what to do to help her.

There are very few things I can do to help her while she is asleep. One of them is homeopathy. However, I wasn’t sure that it was necessary for that. Instead, I am doing a liver detox on her while she sleeps. I’ve never tried that before but am hoping it will have good results for her.

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It’s true that time does heal October 18, 2012

Filed under: Uncategorized — pandasmom @ 3:30 am

Or at least allow you to change your perspective. Things were very dark for so long. But learning that this is the new normal and truly, truly embracing it have really turned things around. It does seem that so many adages are true. Take care of yourself first – maybe not first – but somewhat.

Persistence has really paid off for our family. We are still one of the more difficult cases at the ped – meaning that we have never been solved/fixed. But not letting up and constantly trying new things have been huge for our family.

 

Still here October 16, 2012

Filed under: Uncategorized — pandasmom @ 1:52 pm

Yikes, I didn’t realize that anyone still read this blog!  Our family is still here and sre still dealing with PANDAS.  Things have improved significantly since my last posts but I haven’t really recorded it.  I’m happy to chronicle our path if it can help someone.

 

We haven’t been in the hospital for almost 2 years which is an absolute miracle.  However, we do continue to treat regularly.

 

I’m back October 5, 2010

Filed under: Uncategorized — pandasmom @ 2:50 pm

I had to take a break from this blog because it was way too Debbie Downer.  I had said in the beginning that I wanted this to be a place of hope where I/we chronicled our PANDAS journey.  Prior to the blog break, this blog was anything but a hopeful place.  I hope to have that change now.

Our circumstances have not changed at all, but my mentality has.  Since I last wrote, John and I completed our half marathon and are training for another one.  I’ve been listening to a LOT of music on our long runs and there is a song by Eminem with some very crass lyrics that really fuel me on.  But each time I listen to the phrase I feel I am adopting it as my motto.  The gist of the phrase is “Success is my only option, failure’s not”.  That sentence is WAY edited down, but you get the point.  Through my blogging break I have come to realize that indeed, success is the only option, it’s just that success may have a different definition than it used to have. 

We did have a MAJOR success for A and our entire family over the summer.  A was able to go 13 weeks between IVIG treatments.  It was such a long time that A felt the need to make a trip to the hospital just to visit her nurses.  We made cards, took cookies and had a nice visit.  Unfortunately, we ended up as a patient only 2 weeks later, but we survived.

We have also found another path that has been quite helpful.  We are on our second Naturopath and this one is a gem!  She is as helpful as our ped!  We’ve been seeing her since the spring I think and she has been spot on with what she has seen in A and what she has prescribed.  I must say that I was a bit skeptical of homeopathy prior to this ND, but no more.  I am a true convert after what I have seen.  In fact right now the ND has kept A out of the hospital for 2 weeks.  A is having a relapse right now and we can’t stop it.  But the ND has been able to keep it under control so that we haven’t had to be admitted yet.  I’m hopeful that we might pull through.

However, we just found out that C has strep!!!  And A has NEVER been able to recover without a hospital treatment once she has been exposed to a household member’s strep.  So, today is the real test!  C’s strep was just confirmed yesterday and we see the ND today.  I think we will either pull through within the next 48 hours or be admitted to the hospital.

Anyone who wants to pray: please put your prayers toward the ND so that she can make the best decision for A today and perhaps keep us out of the hospital!!

 

Really? June 10, 2010

Filed under: Uncategorized — pandasmom @ 12:18 am

Yesterday John and I went out for about 30 mins with his co-workers for a drink.  Before we had children we used to do this all the time.  This time, though, I thought “this is really NOT what I want to be doing with my babysitter time”.  But I thought it was a good idea to mingle a bit more with his co-workers than I have in the last 2 years. 

I sat next to a very nice woman and we had a nice chat about nothing in particular.  She was a person that I could tell I could certainly talk to again at the Christmas party.  After about 7 minutes she paused and very intently asked me “So, what do you do?”  I really almost laughed out loud.  I know that John is much more private about having a child with special needs but for some reason I thought that this group might know that I was a stay at home mom.  I was the only spouse in attendance.  For some reason I had a bit of a hard time saying that I stay at home with our children.  Not because I am embarrassed about it but because we don’t just have 2 Gerber baby children.  Somehow I got it out that I stay at home and she said “Oh, that must be SO nice!!!!”  I quickly realized where this was going and I took no offense to the conversation.  However, I was completely shocked.  This woman was at the most 5 years younger than me.  She wasn’t 21.  Then she says “Well, how are you enjoying the break?”  It was really hard not to laugh.  But I know that my face must have had a look of disbelief on it because she quickly said “well, I’m sure it’s a lot of work”.  And then I understood her perspective when she said ‘”it is so cool that you are there during their formative years.  I never had that because both of my parents worked”.  But I’m pretty sure she thinks this is just a hobby of mine.  I’m still laughing about it today.

 

How do you get rid of excess hospital energy? May 29, 2010

Filed under: Uncategorized — pandasmom @ 12:02 am

After sitting in a hospital bed for 10 hours a preschooler has LOTS of energy.  Luckily preschoolers also have great imaginations.  A was so excited to be out of the bed yesterday and all she wanted to do was run and climb.  We found all the escalators in the hospital and rode each of them several times.  I had on a pedometer yesterday and noticed that we walked 2000 steps just on escalators alone.  Here is a picture of a happy A.

escalator 2

 

Wondering Why? May 28, 2010

Filed under: Uncategorized — pandasmom @ 8:52 pm

18 months is a long time to go through all these ups and downs. Last night when I was faced with making the decision of whether to admit A to the hospital again or not I felt overwhelmed.  I felt that hospitalization is such a HUGE decision.  It is a huge undertaking and not one to be taken lightly.  I just sat in my car trying to take deep breaths and prayed for the ability to make the right decision.  Poor A didn’t ask to be put in this position.  A position where she ends up in the hospital for 2 days every 15 days.  Am I equipped to be making these decisions for her?

Of course this is not my decision alone, but I was by myself when I was having all these thoughts.  I was driving to meet John where we were able to talk about this. 

I am way past the “Woa is me” part of all of this.  I realize that everyone has a cross to bear in life and this is just our family’s cross.  But the part that I am truly stumped on still is wondering what we are supposed to be learning from this long, drawn out, non stable situation.  Just when it seems we might have a plan in place for all of this, we let our guard down for a second and then we get the wind knocked out of us.  Anyone else in this situation have advice for John and I on the lesson we are supposed to be learning?  For some reason I feel I would be less anxious if I had insight into that.