Monday, April 30, 2012

The Stare Monster

Last I wrote about Alina she had just been diagnosed with Epilepsy.  So many things went through my mind, one of which was that it couldn't possibly be true.  I walked around in a dazed state for 3 days, then cried for my little girl, and then accepted what was.

Over the past month I have noted some changes in Alina.  Her teacher has been reporting a more on task girl needing much less redirection.  I have noticed that with homework too.  Also, there were always concepts on the homework that Alina was adamant that Mrs. Wilson had never taught.  I mean she would be reduced to tears because she didn't understand why Mrs. Wilson would give her homework on something she hadn't taught.  I was also getting quite frustrated at how often this happened and we would teach her the concept.  We are not experiencing this any more.  Home work is so much easier.  I had set up a bead system.  Rewarding Alina with beads when she stayed focused on her homework.  When her little container got filled she got a reward.  Hind site tells me it is an unfair system. She doesn't have control of her focus ability.  The first day back from spring break Alina wrote two pages in her journal without help or redirection...a first this year. 

People kept asking if Alina was aware that she was epileptic and what that means.  So I finally asked her if she knew why she was taking the medicine.  She shook her head no.  I tried to simplistically explain seizures to my 6 year old.  I then asked her if there were times before the medicine when she didn't know what was going on around her?  She began to shake her head but then stopped and said, "Yeah that happened a lot and it was scary.  But it doesn't happen as much now that I'm on medicine."

Let me briefly take you on a journey with Alina.  You see when she was three we started noting some odd behaviors.  She would pace in circles, almost unstoppably.  I had been told at the time that some kids have trouble focusing and this was a way they focused themselves.   She also began her OCD type behaviors (eg., lining up pencils in a certain order, rituals regarding daily activities-if it didn't happen a certain way it was the end of the world, ...etc)  I took her to our family Dr. worried that my daughter might have some form of autism.  He didn't think so.  He indicated he leaned to OCD more, but also said that 3 year olds in general have that tendency.  He suggested watching her and seeing if symptoms eased as she got older.

They didn't.  They didn't get worse until last year though.  We attributed it to Alina grieving her Pa's death as she had had a delayed reaction to it.  I had spoken with Dr. Carter (the pediatric neurologist seeing John and now her).  She had suggested watching her closely and possibly taking her to therapy.  Of course dealing with Jasz' issues, I put her on the back burner.  This year she was counting everything, she couldn't wash her hands or brush her teeth without me checking to make sure she did a good job, she would color in a certain order.  Trina, being my resident expert in child behavior, suggested that Autism may still not be off the table.  She also said we need to nip the behaviors in the bud, showing her that things will be okay if she doesn't do those repetitive things, otherwise it would certainly worsen.

This year school was so much harder for Alina.  She couldn't stay on track.  She had to have someone next to her at all times and Alina wasn't enjoying it.  She despaired at how hard things were for her to complete.  She saw how much work the other kids could do and how little she could finish.  Almost every classroom assignment was modified/done orally.  Her teacher and I felt like we were losing her.

Then we find out she is having seizures.  School improved and so did most of everything else.  Alina herself notices the difference.  She played a game with Jasz the other day where there was a monster and if he looked at you all you could do was stare...they called him the stare monster.  I found it interesting and sad. 

It wasn't until last week when Dr. Carter asked me if her OCD behaviors were lessening that I really thought about it and realized..OMG they are.  We are seeing WAY less pacing, and the counting she's doing is more like casual kid counting not repetitive or absolutely necessary.  She has completely stopped asking me for confirmation about her hands and teeth being clean.  We've also noticed fewer tantrums, although they still happen.  She is in general more comfortable in her own skin.

For us the hard part about these seizures is distinguishing between a seizure and normal 6 year old behavior.  Dr. Carter agreed but also suggested that some of those tantrums are likely seizure related.  I had noticed that Alina was for sure having them in the car still.  I asked Alina if she felt okay in the car and she said, "well the medicine is working for me but not in the car."  So Dr. Carter increased her dosage as seizures can cause brain damage.

Post appointment we had to have blood drawn, to make sure the medicine isn't causing negative bodily affects.  She was so brave and did not shed a single tear.  She in fact mid draw looked at the tech and said, "Don't take all my blood okay."  I love her wit.  We will soon also be having an MRI.  Dr. Carter doesn't believe we will see anything on the scan but we need to be sure.

The stare monster is what made me want to write this post.  I can't imagine how scary Alina's world has been.  Imagine not knowing what was going on around you at least 70% of your day.   People would be in different places, the teacher was talking but you can't remember about what,  not remembering what word you were reading or writing.  The stare monster seems to explain her OCD behavior. There was very little in Alina's world that she felt in control about.  These few things were it and she was holding on to them with all her might.  It makes me want to weep to think about it.  But Thank God her teacher is observant and I am willing to push.  A side note: Mrs' Wilson's son is an EMT and he commented that she was so much younger than most people get diagnosed with this type of seizure.  Usually they are so much older and have missed so much more and have had brain damage caused by it.  He complimented the two of us for keeping the communication lines open and being willing to look at what is going on with her. 

Also of note, the report from the school had indicated a high chance of Alina being ADHD.  Dr. Carter mentioned last week, "do you see how easy it is for kids to get mislabeled?  Then they get put on ADHD medication and it doesn't work so the dosage gets increased. See how easy things get missed?"

Well hopefully we'll be saying goodbye to the stare monster!!

Thursday, April 19, 2012

When you don't know the difference

A few of you may know that my son Jasz had surgery.  Most of you didn't know the reason why as I didn't want my son the butt of future anatomy jokes.  A recent discovery made me realize though, that the correction which was made was not a cosmetic thing.  You see my son was born with a condition called  Hyposadias.  In laymens terms he had two urethral openings.  Only one was functional and it wasn't even noticed until he was nearing two.  At the time the Dr. who discovered it thought there were no pediatric urologists locally and we would need to go to LA.  He did not seem alarmed however, so we kind of put it on the back burner.

It wasn't until a friend was talking to us that we discovered there was a good pediatric urologist right here in town.  I took him in and it was about a two month wait to get in.  He looked at him and said sure enough he does.  He said it required surgical correction and it was a medical necessity.

I didn't understand why it was a medical necessity though, but trusted his expertise on the issue.  I doubted myself right up to the day of the surgery. Was I just having my son mutilated, was it really necessary?  I had nightmares over it.  Every worst case scenario went through my head. The only thing I had noticed was his pee stream angled up...I didn't think that a medical urgency.

Thank God my husband took the day off to help his basket case wife.  I could have done it alone, but it sure nice to have him there.  My son had no fear and was his usual charming self.  After the surgery, he even groggily said that the Dr. was nice.

The end of that day he was hurting and we had to give him the pain medicine they prescribed.  Come the next day we no longer had to.  It stung when he urinated so he could tell when he had to pee.  He mentally prepared for it and by the end of the second day was peeing on the potty like a big boy.

Once the intial pain left, there were a few things I noted.  One my son told me, "the Dr. fixed my penis"  Okay well that tells me he noticed a difference and it was a good thing.  Secondly, my son used to wake up with a beyond saturated diaper in the morning.  I mean the diaper, his jammies, and the bed soaked EVERY morning.  I was doing laundry A LOT!  I also had noted when he was around 18 months that his morning urine smelled like Maple syrup.  Well we had him tested for all kinds of things based on that and all came back negaitve. No answer to that question that kept nagging me, "Why?"  Well after the surgery, that morning smell went away as well as the overloaded diapers. 

At the post op appointment I asked the urologist about this.  He told me that for Jasz this surgery was medically necessary.  When he began operating he found the problem was more severe than originally thought and he has a SEVERE blockage.  That means when he peed it likely hurt every time.  It also meant that he was likely unwilling/unable to completely empty his bladder.  Likely the urine was backing into his kidney's thus creating that sweet smell and the overloaded diapers in the morning.  Likely the night time was the only time his body could relax enough to emply the bladder.

I have been pondering this for a couple of weeks.  There were times when my son was less than a year that he would scream his head off uncolsolibly all night long.  It would happen about once every couple of weeks.  He would sleep well for two weeks and then we'd have the scream night.  After we learned of his muscle issues, I thought "oh he must have been having muscle pain...poor guy."  We had taken him to the Dr. many times and no answer was ever found.

Hind sight happens again and I wonder if when my little guy was less than a year the pain of peeing was keeping him up and after a year he got used to it.  So by three he knew nothing else. It was just how life was to my little guy.  He never told us it hurt to pee...he assumed it hurt for everyone. 

I really have a better understanding of how kids and people in general cope with many horrible things.  When you know nothing else, that's just how life is.  I've heard that said by many a victim of child abuse, they assumed it happens in everyone's home.  They didn't know the pain was unusual.

I feel great now knowing we made the best medical decision we could for our son.  I am so thankful he doesn't have to hurt like that anymore.  I looked up my sons issue on google so I could remember what it was called and stumbled on a posted question by a mom whose son is my sons age and has the same issue.  The responses boggle the mind.  Things like, you should do nothing as it will cause trauma and nightmares and he'll blame you; or you should let him decide when he's old enough to; or it's not causing harm leave it alone.

Well speaking as a mom whose son had that issue, we thought our sons was minor and not really causing a problem either.  I also wouldn't leave medical decissions up to a Yahoo question board.  But realistically we didn't know anything was truly medically wrong in that department. We didn't know the difference.