Pandasmom's Blog

living with PANDAS, not the furry ones…

Back to the hospital May 27, 2010

Filed under: Bad days,medical — pandasmom @ 9:55 pm

It has been 15 days since we left the hospital and here we are back in again.  During our last treatment, John and I watched in horror as our sweet girl seemed to disappear before our eyes.  We were so shocked at what seemed to be happening that we couldn’t bring ourselves to believe that she was actually getting worse while she was receiving the treatment. 

Everything about this disease is gradual.  Aside from the initial onset that is.  But the return of the symptoms and even the dissipation of the symptoms: both are gradual.  Enough so to make John and I think we are crazy for even questioning the state our daughter is in.  Is she healthy?  Is she sick?  Are we nuts? 

After a week of watching her get worse and worse, we had an appointment with our ped to attend. It was previously scheduled so the timing was good.  Our ped was shocked by A’s state and asked if we thought she could handle a blood draw.  The ped is well aware of how traumatic needles are for A so she didn’t take this request lightly.  I tried to gear my mind to getting blood results that said all of her titers and other numbers were normal and that this up and down business is just going to be our life.  However, I was really quite thrilled when the results came back that her DNASE-B was sky high.  In fact, it was the highest it has ever been. 

We had already started her on Augmentin and hadn’t seen an effect yet.  So our ped wanted to do steroids.  We are very hesitant to do steroids for A because we have seen a lot of side effects from them.  But, in this case, we didn’t feel we had a choice.  The steroids did have a slight impact on A but it was very short lived.  And back to the hospital we go…

Advertisements
 

“You are breaking my heart” May 21, 2010

Filed under: Bad days — pandasmom @ 10:39 pm

Our life is very routine because that is what works best for A.  Fridays are usually our most fun days because we get to all be together and have a lot of fun.  Usually after art class we go over to the open play class for the girls.  The same children are there every week and the children have their own routine.  A is having an extremely hard time right now and was showing a lof of inflexibility.  Most of the parents have watched us go through this horror show and are somewhat aware of what is going on.  We’ve done well to hide things and reduce our public image over the past several months so our issues might have been forgotten a bit. 

However, A was quite hyped up this afternoon.  There was also a boy there who only comes about once a month and he changes the dynamic when he is there.  These 2 things made for a bad situation for us today.  After about 90 seconds, I knew we had made a bad choice in going to the open play.  I quickly warned the girls that we would be leaving soon.  Somehow a clique seemed to form and A felt alienated.  She started howling “You are breaking my heart” to her 2 friends.  It was heartbreaking to me.  How can a 4 year old say such things?

A was unable to move except to cry.  Luckily when I told her I was going to help her she accepted it. Usually this will amp her up even further.  But she let me pick her up and carry her out to the lobby this afternoon. 

I felt very alone during all of this.  All of us parents have been attending this play gym since the children were born 4 years ago.  I certainly don’t expect them to solve my problem, but when my child is screaming “You are breaking my heart” to their child, I would expect them to at least hang up the phone!  I was shocked and saddened.

 

OMG Strep! I can’t take this!!!! April 22, 2010

Filed under: Bad days,medical — pandasmom @ 10:15 pm

A few weeks ago we switched C off of Augmentin and on to just basic penicillin.  Our ped did this because Pen should be enough to keep strep away and then we had a stronger drug to treat C if she were to truly get sick with something.

We did A’s IVIG a week ago.  John and I have ben very patient with her and we can tell she is working hard to stay in line.  However, this morning was very rough.  Both John and I said that we felt the treatment hadn’t worked.  Well, of course the treatment worked; there is just something else going on.  I called our ped to tell her and was thinking that A must have been around a strep carrier and that we would likely put A back on the Augmentin.  Our ped asked if I had checked C for strep.  It hadn’t even crossed my mind to check her since she is on an antibiotic and she looks absolutely fine.  I checked her and was completely blown away when the test showed that she was positive for strep!!!  No wonder A is having such a hard time and has been since she came home from the hospital!

But this is a real nightmare!!  We have tried every single drug option for C to try and get rid of this strep. Anything that has made it into her body has not cleared the strep from her system.  At this point, I’m even nervous that the drugs we have been unsuccessful in getting in to her would have an impact.

I am waiting for a call from the ped to tell us what to do next.  We will likely be admitting C to Children’s Hospital to work on this.  I am really sick of spending time in hospitals!!!!

 

How to explain to others? March 16, 2010

Filed under: Bad days — pandasmom @ 9:32 pm

My experience has been that unless you are the caregiver of a child with special needs you can’t quite grasp the severity of a situation involving such needs.  I feel like John and I have attempted to explain A’s situation and health issues to those who need to know or those we want to know.  But how do you adequately explain this situation unless you have lived it in our house for the past 18 months?  I have come to the conclusion recently that unless you are the parent of a child with needs yourself it must be impossible to grasp.

I know that before we found ourselves in this situation that I viewed children with invisible disabilities entirely different than I do now.  Since this has been going on for so long, I am starting to be able to see a few positives that have come from this.  But the one obvious benefit that has come from this whole journey is our entire family’s increase in compassion for others.  I think that all 4 of us have gained a unique ability to look at situations and people from more than one angle.  There is a quote that I have come across recently that reads something like “Treat people more gently than necessary…Everyone is fighting an unseen battle”  I find this so true with special needs.  There is no way to understand each person’s unique situation unless you live in their house.  However, none of it is made up and the situation is extremely difficult. 

The one thing that I do wish was different in all of this would be that A’s difficulties were either more visible or more easily understood.  Of course I don’t want her to have a physical disability but those are much harder to question.  The moral of the story is that you can’t change anyone but yourself.  What John and I need to do is to extend our compassion to ourselves and those that pass judgment, I guess.  We need to accept that the majority of the world is not able to truly understand the depths of A’s problems.  This is no fault of their own, they just haven’t been forced to live in such a situation.  We need to remember that we are doing everything we can possibly do to help A get better and be the best she can be.  When we take people’s remarks to heart it only serves to knock our family down a rung on the ladder.  It takes us so much effort and so much time to get up each rung that we simply cannot let the world knock us back down.  We have already hit rock bottom and we can’t go back there. 

This is sure easier said than done….

 

Not again October 10, 2009

Filed under: Bad days — pandasmom @ 3:45 pm

It’s not looking good over here on day 34.  A has had 2 bad days in a row.  Almost all of her behaviors have returned and none of them were there on Thursday.  I feel that I am in a better place this time around in that I am prepared for it a bit but any type of relapse is hard.  And knowing what is to come fills me with anxiety and dread.  My poor sweet child.  I just want this to go away.

 

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.