Pandasmom's Blog

living with PANDAS, not the furry ones…

No gag?? Not for us!! March 30, 2010

Filed under: Good days,medical — pandasmom @ 12:35 am

Before we became a household afflicted with an autoimmune disorder, I thought that I understood what it meant to have an autoimmune disease.  More and more I am coming to realize the meaning behind “Ignorance is bliss”.  I don’t think one can really and truly grasp it until it afflicts you.  I know that I was definitely ignorant to autoimmune issues before we were forced to become intimately familiar with the workings of one.  And I now know that we are only familiar with ONE!!  Our house is only one step below having a fatal reaction to strep.  That is how bad strep affects us.  That might seem like an extreme word to use to describe A’s reaction to strep.  But anyone who has lived in our house or been around our family when A has been exposed to strep would know that her entire being completely falls apart.  As soon as she falls apart, our whole family falls apart as well.  We are completely unable to function when this happens.  Several basic family needs do not get met when A is exposed to strep. 

So, last week, when we thought we were able to FINALLY get the Cephalexin into C, we were elated!  We can’t cure all of the strep carriers in the world, but surely we can do our best to cure A’s sister: the strep carrier.  Getting the no-gag candy and then the actual antibiotic into C was quite the fiasco but we were able to do it 3 times.  After 3 times I was starting to feel like we might actually make it through 30 doses.  However, on the 4th dose, C absolutely would NOT open her mouth for the antibiotic.  Nothing was going to make her do it.  We tried everything.  We got her to open up to accept the drug but she wouldn’t swallow.  Sadly, we yelled at her and told her she had to swallow it.  She tried and then instantly threw up.  And kept throwing up.  And. kept.  throwing.  up…  After it was over C told us she must have thrown up because her belly was too full of food.  I completely freaked out and thought we were creating a bulimic in the making and John and I put a halt to the Cephalexin.  From what our ped and I know, the Cephalexin taken orally is the only way we can eradicate the strep from C’s body. 

So, knowing that C is a strep carrier and seems to get it at least monthly and that we can’t get her to take the medication to clear it constitutes a crisis in my book.  Watching C continuously thrown up was very difficult for A and caused a lot of problems for our household on Saturday.  It was not a good day overall. 

However, C will still take the gummi bears and A will take the Augmentin so right now we have an exacerbation at bay.  Things are not perfect here but today has been a good day overall.  I know that there is strep in C’s body and that is not good.  But I think things are under control for now.  We will see what tomorrow brings.  

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Surprising Days March 16, 2010

Filed under: Good days — pandasmom @ 9:09 pm

Today is a good day.  In fact, I think the past few days have actually been good, but today is definitely a good day.  When days are good they catch me off guard because I am not expecting them and am not used to them.  It is such a joy to watch and be a part of.

John took A to preschool this morning and C and I had a leisurely morning at home.  This is something we never do.  However, last week was a hospital week and I thought C could use some time by herself with mommy at our own house.  We had such a nice morning doing absolutely nothing.  We picked A up from preschool without any issues and even went to the grocery store.  Anyone who reads this and has a child with special needs will understand that you don’t go straight from preschool to the grocery store.  EVER.  In fact, you just don’t go to the grocery store with the child with needs.  But we pushed on and had an extremely successful trip.  It was shocking. 

After the girls had lunch, they sweetly went into the playroom to play doggies and played on their own for over an hour.  There wasn’t a single fight or any need for mommy to intervene at all during that time.  Such interactions are unheard of in this house.  It is these types of days that are surprising to me because I am unable to expect that they will happen.  It is such a delight to be a part of it.  I’m sad that we have an appointment this afternoon that we have to pack up and leave for.  But that is nice feeling to have. 

 

A positive post October 4, 2009

Filed under: Good days — pandasmom @ 5:30 pm

I wanted this blog to be a place where John and I could write about our situation in a positive light.  I feel the last few posts have been too negative so I want this one to be upbeat and I will save the negativity for a later post.  🙂

At the height of all the chaos in our household, John decided it would be a good idea to take a vacation day every so often and spend it just at home doing normal, family stuff.  Rather than going somewhere or taking on a big project, he would just join in to a typical day that the girls and I usually have.  Friday was the first day that he was able to do this and we had such a great time!  We walked up to Starbucks with the dog and had breakfast! We were able to get the girls to take a nap!  John and I were able to talk about life and things that didn’t revolve around health issues.  Fridays are drop off art class where both girls get to go to class for one hour.  We took them to class and got to have coffee again.  It was just a great day.  And we ended the day by going to our stroller running club where we ran 5 miles with the girls.  All in all it was just a great day.  Having 2 adults around is so nice and takes a lot of stress out of things.  I also think that having a set schedule is very helpful too.  How nice for us to be able to have a good day!

 

A good day September 14, 2009

Filed under: Good days — pandasmom @ 10:54 pm

Today has been a good day.  We started the day by attending our ballet class.  We had 2 things going against us: we were late and it was the start of a new session which meant we had a new teacher.  A clearly noticed that the teacher was different and walked very hesitantly into the room.  I, on the other hand, tried to act like nothing was different than the summer session.  I walked her into the room, introduced her, told her I would be on the side of the room and was able to leave the room like all the other parents.  This is a huge accomplishment for A.  This is what normal children do and we were able to do the same.  It is a very big deal.  During the summer session we were completely unable to attend most of the classes.  We couldn’t even get dressed to go out the door, let alone attend the class.  So, the fact that she was able to walk into a different room today and approach the situtation like a typical child is a huge milestone for her.

After class we played next door at the playground.  A played on the equipment for a short while, but quickly moved over to the sandbox.  She removed her shoes and socks and spent the remainder of our time in the sandbox.  She seems to have a need to cover herself with sand and chalk dust this summer.   It is obviously a sensory issue but I wish I could help her regulate it so she could enjoy other activities as well.  She does these sensory activities to the exclusion of all other activities.  We were at the playground for about 1 hour and there were no meltdowns and she was able to use words when she encountered problems.  That is also a pretty big deal.

 After the playground we had lunch.  A was a little wound up and was a bit noisier than I would want, but not beyond the realm of a typical child.  From there, we took our drive north so the girls could take their naps.  A fell into a deep sleep and slept for over an hour.  This is very good because she hasn’t been able to sleep as much as she needs.  Driving around is the only way to ensure she gets a nap.  This is not the type of parent I ever thought I would be, but here I am.

From there, we did some shopping and both girls continued to do very well.  All in all, this has been a remarkable day.  They are both tired out since we didn’t stop much today.  They are enjoying some quiet time with Clifford right now. 

I do attribute al of these changes to the two treatments of IVIG that A has recieved since August 1.  I’m not sure if this is something that she will continue to need monthly, but I do know that the IVIG has made a world of difference in our house.  Things are still very difficult, but we are able to survive and to have good days like we have had so far today.