Wednesday, May 23, 2012

Michael's Diagnosis (long post)

Yesterday, we went to get the results of Michael's testing.  He was tested by a pediatric nuerologist at the Lurie Center.  My husband and I have always had an inkling that there was some issue, but we were never quite sure if there really was an issue or if we  were just over reacting (or at leas that was how I felt).  We had an abnormal AFP test when I was pregnant with Michael, but the ultrasound looked fine so we never went further.  I came down with pre-eclampsia when I was 32 weeks pregnant and ended up in the hospital for a week and on bed rest for the rest of my pregnancy until I was induced at 38 weeks.  I went into labor and Michael got stuck and I ended up with a c-section and on magnesium sulfate.  When I tried to breast feed, he always had a hard time latching.  While I was still in the hospital, the lactation consultant noted that he had a little difficult time sucking and we had to stimulate the roof of his mouth to get him to suck.  While I attempted to exclusively breast feed, Michael wasn't gaining the weight that he needed to and we needed to supplement with formula, as well as attempting to get him to latch on and pumping.  When Michael, 3 months, I became pregnant with my twins and stopped breast feeding all together.

At that point, he was doing fine with bottles and maintaining his growth curve.  He was developing on time with most of his milestones, except for speech.  We finally got an EI evaluation for all 3 kids when Michael was 2 1/2 and the twins were just over 1 1/2.  Michael was in EI for 6 months and then transitioned to the public school system with and IEP.

Michael was in a 1/2 day program for 2 1/2 hours, and after 2 months or so, we had another meeting and it was recommended that he go into a full day  preschool program.  He has been in the full program for about a year now.  He has a wonderful teacher and wonderful para-professionals that care so much about him as well as his speech therapists.  He has done so well with this program, but I still had concerns.

My husband and I decided to move forward with an evaluation, hoping to get our questions about developmental delays vs normal development just a little behind schedule.  Michael was evaluated a week ago and there was some question about whether or not he fit the criteria for an autism spectrum diagnosis. Yesterday we returned to go over the results and the doctor decided that he really did fit the criteria, more specifically PDD NOS.  I guess he would be considered more of a child with Asperger's , but he had an early onset speech delay.  He is high functioning, but has impairment in his social skills.  There is more to it than that, but at this point, his sensory needs and his social functioning seem to be the biggest areas of concern.  The doctor mentioned that he most likely would have been a child that may have fallen through the cracks if he hadn't been diagnosed early.  He is a wonderfully charming child with a great personality. Most likely, as he got older, he would have been considered a "quirky" kid.

As much as I hate having him have a diagnosis, I am happy that we know that there is an issue and that we are able to do something about it.  With a diagnosis, there is a lot more open to us for resources.  The doctor is hopeful that with supports and diet, he may grow out of it and lose the diagnosis as he gets older.    At this point, I plan to be much more vigilant with his diet, as it seems to help him.  I'm not going to be super Nazi about it at parties, but I am going to be more vigilant at home!

As much as I know people don't really comment, I do know that people do read this blog.  I hope that if you read this, you will keep us all in your thoughts and prayers and maybe post a comment if you can.  For me, comments mean a lot and are really helpful, even just knowing someone has taken the time to read what I wrote and not just hoping that someone is reading.


Thursday, May 3, 2012

Michael Update

Michael had his cyst removed.  For a while, he had this little lump that we were told could be this big long word.  It was removed about a week ago and we are on our way to his chin healing.  After the surgery was complete, the doctor said that it wasn't what he thought it was, but that it was either a cyst or a lymph node (i didn't know that you had lymph nodes in your chin).  We go for a follow up in about a week and a half and will find out the biopsy of the cyst.

In a week and a half we are also taking Michael for his developmental evaluation.  I have been really concerned about his lack of meeting certain milestones or his lack of communicating.  According to his preschool teachers, he is progressing, but not as fast as they would like to see.  He has been in a a 5 hour preschool program for a year now and is still not really able to talk to us about his day.  Luckily his teacher sends home a little check off on the things that happen during the day so that I can ask him about it.  With lots of prodding he is able to maybe at least acknowledge that he has down certain things at school.  Unlike his younger brother (by 10 1/2 months), Michael can not really communicate about his day even with simple cuing.  I have noticed though, that he is improving over that last couple of weeks.  Before, when you asked him who his teacher was, he would say teacher, now he can say her name and then just this morning, I asked him who was in his class and he actually named the kids without a lot of prodding.  He still likes to play alone and doesn't really even play along side other kids.  His imaginary play is starting, but is still pretty limited.

The one area that he actually excels in is music.  He loves music and can sing many songs.  He was able to sing songs before he could really say a whole lot.  I love listening and watching him sing.  His whole face lights up and you really now that he loves music.

One thing that I do think has helped is his diet.  He has shown to be sensitive to  gluten and dairy.  ever since we have removed these or at least lessened them greatly in his diet, he has been improving.  He is more aware and more vocal.  He sleeps better and doesn't seem to have the skin issue that he was having, especially when he was eating and drinking dairy.

I am looking forward to his developmental evaluation.  Part of me says that he doesn't need it, but another part of me says don't be stupid.  He is four years old and he should be communicating more than he is and he should be playing more with others or at least along side others rather than always wanting to play by himself.  He does well with his brother and sister, but really needs to start playing with other kids.

One other major area that he has greatly improved in is in his behavior.  His impulsivity is much improved.  Before, if you reprimanded him, he would throw something.  Usually this was regarding asking him to put soothing down.  Instead of putting it down, he would throw it and sometimes it was something very fragile.  I do think that you need to talk to him in a certain way, but he is so much better.

I can't wait to either find out that there is no real issue and we don't need to worry, or find out that there is an issue and then we work on helping him with whatever issue he has.  I really just need to know where to go with him and know if I am worrying needlessly or if my instincts were right and I need to do more!