Pandasmom's Blog

living with PANDAS, not the furry ones…

Could it be so simple? September 28, 2009

Filed under: Uncategorized — pandasmom @ 9:06 pm

My understanding is that the antibodies we gave to A are supposed to last for 30-45 days.  So, having a setback at 20 days was mindboggling.  It seemed like such a thing would be impossible. 

I asked the pool of experts I know, other PANDAS parents, how this could have happened.  Of all the answers I got, it seems to come down to 2 things.  Somehow she was exposed to strep – likely at school or at the ped’s office.  The other part I learned is that we are not on enough antibiotics for a PANDAS child.  Whether this is what caused the return of the symptoms or not, it seems like A should be on a high dose of daily antibiotics rather than a high dose only twice per week. 

This does make sense to me and I wonder if it’s possible that this is why she relapsed last month.  I know that I will be giving her a daily dose until we see the ped again this Friday.

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Update

Filed under: Uncategorized — pandasmom @ 8:53 pm

Saturday’s behaviors and setback really shook John and I to the core.   Poor John doesn’t want to admit that he has a child with special needs.  But, the term special needs is so broad.  I think that John is coming to grips with that.  It is very hard to realize that the simple, boring, plain life you wanted to have just isn’t going to happen.  John and I are both feeling this at the same time and we show it a bit differently.  But, by Sunday morning, we did realize that we are still on the same page and we need to figure out how to live this life as happily as possible.

A’s behaviors did indeed all return on Saturday.  However, she was able to go to sleep Saturday night relatively easily and she remained asleep that night.  On Sunday, she was mostly back to herself.  We saw some OCD things and a few temperamental issues on Sunday, but nothing like we saw on Saturday.  As long as there is any improvement, my own mental state is fine.  It is when there is a decline that I get completely overwhelmed. 

Surrounding ourselves with only typical families/friends and typical situations when John and I are feeling beaten down is proving to be too much.  The contrast between our family and everyone else’s is too vast.  This is not a cry for sympathy it is just a simple fact.  For quite a while now, I have been working on building a support system of special needs moms – both online and in person.  I mentioned to John that it might benefit our family if we recruited some family friends with extra needs as well.  We don’t need to wallow in self pity, but being around families who have situations like ours might really be a welcome break.  Luckily, my friend and I have been discussing this for a while and have been just waiting for the dads to think it was a good idea too.  I think the time is now. 

 

What the heck happened to our daughter? September 27, 2009

Filed under: Bad days — pandasmom @ 3:48 am

I know that I wanted this blog to be a positive account, but I doubt this entry will be very positive.

A has had a horrible day and it is hard not to label this as a relapse.  I am documenting this so that I can compare tomorrow to this.  After this week’s 2 sleep incidents, I am thinking that along with today’s actions we have to be having a relapse.  However, I don’t know how this is possible since we only did the IVIG 20 days ago.  Aside from a relapse there are only 2 other explanations.  The first is that she could be having a day called “turning back the pages” where her brain takes a step back in the healing process and will then right itself again in a few days.  However, today was severe enough that I don’t see how that is the case.  The other is that she was exposed to strep at the ped’s office yesterday when we were there.

Today’s symptoms again showed up hourly just like last month.  They aren’t as severe as last month’s relapse, but they were devastating nonetheless. 

  • Treatment of the cat.  When she is healthy she is very loving towards him and treats him appropriately.  TOday she saw him and immediately whacked him with her stuffed animal. We haven’t seen this since pre-IVIG
  • New sensory issues that weren’t there yesterday
  • Inability to listen – it’s as if she isn’t inside herself when we are speaking to her
  • Inability to deal with life’s situations – things send her into rages that most people are just able to deal with.  This doesn’t happen when she is healthy.
  • Needing to watch TV to soothe herself.  TV watching has decreased greatly since the IVIG.
  • OCD symptoms that weren’t present yesterday

This was incredibly hard on me because again, I wasn’t expecting it.  I feel like I have spent the last 20 days preparing for the relapse so that I don’t get caught off guard and lose it like last time.  I have a mental countdown going of when to start watching for signs of relapse and I had not anticipated it starting already.  When the OCD symptom came on this afternoon I was overwhelmed by the sheer amount of physical and emotional energy it takes to take care of A when she is sick.  It is a job that is every single second of every single day.  I do not in any way feel that I have recovered enough from the last relapse to start dealing with this one.  But now I am also adding in fear.  How in the world could she possibly get sick again after only 20 days.  This makes me think that something else could be/must be wrong as well.  I will do another post with what the immunologist told our ped, but he thinks she sounds like she might have CNS Lupus.  From what I have read, childhood Lupus is NOT a good thing.  Of course, we can’t get in to see that guy for a month.  At least.  I don’t want to live in fear.  But I am scared after the day we have had.  I hope very much that we might sleep tonight.  And that A will wake up tomorrow and be just fine. 

 

Ped Visit September 25, 2009

Filed under: medical — pandasmom @ 3:26 am

At 5:00 today our nurse called and asked us to come in tomorrow morning.  Our ped just spoke with the immunologist that we want to meet with.  The ped told our nurse that there was too much to convey to me over the phone and she wants to meet with me in person.  So we are going in tomorrow. 

This of course makes me both nervous and excited at the same time.  I’m hopeful that I will walk in and she will tell me that the immuno doc says everything we have done up till now is right on and has a plan of attack for us.  But I am nervous that the ped has laid out our story for the immuno doc and he will think we are nutcases.  I’m not too concerned about that because we will always have our ped to work with.  But I do feel we need an additional specialist to work with us on this.  Luckily our ped is personal friends with the immuno doc so she said she knew he would listen to her and take her seriously.  I am just anxious to see where this will go from here.

I also now have to take both girls with me to the ped’s office tomorrow.  That alone fills me with anxiety because I have to expose both of them to all of the germs in her office when we are currently doing well.  I am clearly forming my own set of OCD around germs.

 

Today Show PANDAS Segment September 24, 2009

Filed under: Uncategorized — pandasmom @ 10:54 pm

The Today show did a short segment on PANDAS today.  You can view it here.  Watching this though, brings about more questions for me than answers.  Why does it seem that there are so many degrees of PANDAS?  And it seems that we got such a severe case of it.  In talking with the other PANDAS parents I have met, they say that most people wouldn’t even notice something was amiss with their child.  That is so not the case with A.  Our ped told us this is the most extreme case she knows of.  All of the specialts we have worked with have said that A’s level of anxiety is the most extreme they have ever seen in any child and that it came out of nowhere.  The first time the OT saw her, A was a “typical” child.  Within 2 sessions, A was no longer able to function in the therapy room if another child was in the vicinity also receiving therapy.  It is confusing to me that there is such a range of severity of PANDAS cases.  I also wonder what causes the severity difference?  Why did A get such a horrible case of it?

On another note, A woke up again in the middle of the night.  This time, she was only awake for 2 hours or less.  I went with her into her room and got into bed with her.  I chose to only be encouraging with her rather than let her know I was angry to be awake from 2 am – 4 am.  Luckily she was able to finally put herself back to sleep.  She is definitely tired today though. She is still doing well in preschool.  Her aide says that she is doing well socially and is doing better than most of the kids regarding social skills in preschool.  The child psychologist said that if A can recover to a point of pre-sickness or close to it, then she should be able to regain herself each time she gets sick.  To me that is a sign of hope and is something that might pull me through the next episode.

 

Against Medical Advice September 23, 2009

Filed under: Uncategorized — pandasmom @ 10:18 pm

James Patterson is my favorite author.  For that reason I think it is very odd that he has had a book out for over a year and I didn’t know it.  I think that shows how limited our lives have been for so long. I discovered that he had this book out on Sunday and was able to get the book yesterday.  I read the book in its entirety between 2 pm and 9 pm yesterday.  I’m a fast reader, but the contents were riveting.  The book is called “Against Medical Advice” and is a true story.  I know for sure that the trauma that Cory and his family lived through is the exact situation that we are in/have been in as well. 

The book was hard to read because it is our situation.  But it was also hard to read because it shows Cory growing up and all the troubles that he faces and that our child may face as well especially if we aren’t able to get this under control and keep it under control.  It is terrifying to me.  I feel the need to buy several more copies and give them to all of her doctors and therapists so they can have a true description of what our life is like and the areas we need help.

Cory, like A, was faced with debilitating anxiety.  The hard part is how to know which one to treat first because it seems to be a vicious circle.  The anxiety is so bad that it increases the OCD.  But the OCD also creates the anxiety. It is so strange though how these things become entirely manageable when the child is healthy.

We are 17 days past our second IVIG.  I am quite nervous to see what will happen 13 days from now.  I feel a bit more in charge though knowing that we have a strong possibility that things will return since A relapsed last time.

 

No sleep September 21, 2009

Filed under: Sleep — pandasmom @ 2:09 pm

It is hard to write a positive post when you have had no sleep.  This is such a let down after the fabulous day we had yesterday.  Yesterday was a scene from a movie.  Our family acted and looked so normal and functional with 2 happy children and 2 happy parents.  It was an absolutely wonderful day.  There were so many smiles and so much laughter.  A even willingly took an adequate amount of quiet time and seemed rested enough to continue her day.

When bedtime came A let daddy put her to bed and he was able to leave without her being asleep.  All of these point to signs of health.  But then, at 1 am, A came into our room and we asked her to go potty.  She did and refused to go back to her own bed.  Then she was in our room and up until at least 5 am fidgeting, complaining and making demands for things.  At some point, John left to sleep in her bed so that someone could get some sleep.  At 4:30, I was so frustrated with her that I traded places with John so I don’t know what time she actually went back to sleep.  This all would have worked out ok, but then C woke up at 6:00.  Overall, it is most important for the girls to get their sleep.  But nights like these are so incredibly long and frustrating to me.

I will be spending the day drinking coffee and seeing if I can safely take a nap.  Otherwise, I will count the hours until bedtime for mommy.

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