It’s been a long day!!!

I spent almost six hours this afternoon with Patrick at the Emergency Room at children’s hospital today.  It has been a long, scary and very frustrating day.  The night before last, during dinner, the boys pointed out this really funny face that PJ was making.  He was looking up, pursing his lips and kind of stiff.  He kept doing it over and over.  I’ll admit he looked pretty darn cute but it also didn’t look quite normal.  I even told Dave that it almost looked like he a was having a mini seizure.  Each time he did this it would only last a few seconds and if I called his name or got his attention he could immediately stop and look at me.  I figured it couldn’t be  a seizure if I could talk him out of it.  He went to bed that night and I just pretty much forgot about it.  Until this morning.  I was at one of Alex’s basketball games when I noticed PJ was doing the same behavior.  One of my friends who happens to be a nurse was also there.  I called her over and asked her to take a look.  She also didn’t think it looked right.  Basically, his eyes would kind of roll back (but not all the way) then his arms and legs would tremor while his torso became rigid.  Each episode lasted just a couple of seconds.  Between episodes he wouldn’t cry or act lethargic.  He never lost consciousness.  He would act totally normal between each time.  We started to wonder if when his neck was in a certain position something was getting pinched.  So off to Children’s I went.

I explained the behavior to the nurses and then to the resident and then to the attending.  Both the resident and the attending doctor saw him do this.  They were very puzzled by it and the attending looked at me and said he really didn’t know what it was.  He said it really resembled something called Infantile Tremors but that he thought PJ was too old to be having that.  He said that can only be diagnosed through an EEG.  He tried to call our pediatrician.  Our doctor wasn’t on call but he left a message for the doctor on call from our practice to call the hospital.  He left 4 messages to be exact.  The doctor never called back.

I made a call to a different doctor though.  As soon as the attending told me he didn’t know why Patrick was doing this, I picked up my cell phone and called my pediatric practice back in Michigan.  That practice has two doctors who specialize in special needs.  One of them was on call today.  She called me back within three minutes.  I didn’t get to talk to her though because I was listening to my voicemail from her nurse while she was leaving me another voicemail.  She wanted to know how he was doing since his RSV diagnosis and also to tell me that she thought he should be admitted and a whole neuro work up done on him.  She believed he needed a head CT and an EEG.  She also felt that I shouldn’t bring him home tonight unless this was done.  When the attending walked back in the room I told him what she had said.  He shook his head and said that he really didn’t think PJ was having seizures.  He said there are some seizures which are mini seizures but he since PJ was acting normal between episodes he really didn’t believe that was the case.  He told me that he felt that this was behavioral.  I was not convinced.  I said, “So my Down Syndrome baby’s first learned behavior is going to be this?” He just said yes and that I shouldn’t worry and could follow up with our pediatrician on Monday.  Then they discharged him.

So, we are home tonight.  He has done this behavior several more times since we’ve been home.  He is sleeping soundly now and doesn’t seem to do this at all in his sleep.  I am now left with going to his pediatrician (the one who didn’t call back after 4 phone calls and 5 and half hours).  If anyone knows of a good pediatrician in the Milwaukee area who knows special needs kids please let me know!!!!  I am feeling frustrated.  My gut tells me that it’s not just a learned behavior.  But I don’t kn0w if I am just allowing fear to make me over react.  I didn’t want to stay the night at the hospital but I wish they had just hooked him up to the EEG and given him the CT before we left.  I expected a bit more from a Children’s Hospital.  My husband told me that his mother did some googling today and read some posts from moms whose children experienced tremors after albuterol.  I guess that’s always a possibility since he has had breathing treatments since December 28.  I hope that’s all it is.

David and I are very tired tonight and worn out.  And Patrick needs your prayers.  In spite of everything today, he was happy and sweet and smiling away before bed.  Then he cuddled up with me and fell asleep in my arms.  I am so in love with this little boy and the thought of him having to go through anything else just breaks mine and David’s heart.


6 Comments (+add yours?)

  1. joey
    Jan 07, 2012 @ 22:07:44

    With your Mom and Dad tonight … please know you (and your precious family) are surrounded in heartfelt healing prayers, dear Lisa.


  2. Traci Kurtin
    Jan 08, 2012 @ 00:07:34

    Hang in there! More prayers your way. So sorry for your frustrations. Hope you get some rest.


  3. Andrea
    Jan 08, 2012 @ 08:14:15

    Hi I live in the Waukesha area know two amazing peds. They are Dr. Manion and Dr. Hambrook in Brookfield. They do not specialize in special needs that I know of but if they do not know the answer they will find someone who does. Hope this helps how scary.


  4. Emily Cornell
    Jan 08, 2012 @ 09:47:54

    I just emailed you! 🙂


  5. Denise Goedker
    Jan 09, 2012 @ 09:15:37

    Wow Lisa! What a long frustrating night! I am not a pediatric nurse, but a mother of 4… go with your instinct!! You need be diligent on getting those tests done. I agree with you that a Children’s hospital should have at least ruled out seizures with a simple EEG or CT. I feel for you and will keep praying for little PJ. We love you and miss you~ Denise


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