May 15, 2007

  • HI

    I was not going to post today but felt I should.

    Elisa is home from the hospital. They found an infection on the base of her skull. She is taking medicine for that, her other medications has really been messing her up.

    In this day and age you would think at least doctors and nurses would know about autism. I had a nurse ask me if Elisa was a spoiled child? I had a doctor wanting me to explain things about autism to him.

    I am angry right now. The system here stinks. No one seems to want to return my calls. I am not a person who gets angry out loud--I just stay quiet but I am not feeling quiet right now.

Comments (21)

  • Write letters. To everyone. Explain the situation. Tell them that you are appalled at the lack of knowledge and understanding in the health care field today. Write the hospital board and name the doctors involved. Write everyone you can think of.

  • Yeah I agree with karalianne.   I know you are just totally disgusted with the situation and the lack of help.  I sure hoped things would get better for you and Elisa when you got the advocate.  Hang in there.. !!!!!

  • I just want to tell you, that the younger doctors coming into the field, do receive training about autism. I know at my medical school we have a lot of exposure to it in our lectures, and when we do pediatrics at the hospitals we always learn about it there too. Many doctors, especially the older ones, just never learned about it. And how do we teach them? It's a hard thing. Autism is WAY too complicated to expect doctors to know everything.

    I wonder what specializations the doctors who know nothing about autism with your daughter are in? For that matter- how old is Elisa? I will say that it's rare to see an adult patient in the hospitals, hospitalized with issues related to autism- it's much more common in children. If Elisa is older, the doctors treating her probably rarely or NEVER see patients with complications of autism. I know, autism doesnt go away.

  • Sorry you are having so much trouble.. we don't have very good medical help here either.

    Hope she feels better soon.

    Becca

  • im so sowwy that yall are having so much trouble about the hospital andstuff .....i well be praying for yall :) thanks for telling me happy birthday :0

  • thanks for visiting my site. i know what you mean about doctors. i hope everything works out and elisa feels better. i think i would write letters too. have a good day and you both are in my prayers.

  • What a thing for the nurse to say- that she was a spoiled child...  I hope the doctor listened and learned when you told him about autism... even so, I know it had to be such a let down for someone who ought to be aware of it, to be in the dark on it.

  • hi sweetie. i have been in the same situation with noah.  we have had to fight so hard to get the help he needs.  it is so sad.  do you have an advocate?  we did and it really was worth it.  i will be sure to say a prayer for you tonight.  know i am here anytime you need to talk

  • Hello! Thanks for stopping by my site today. I don't know anything about autism, but I understand your frustration with the doctors and how appalled you must have been. I was diagnosed with HNPP (a hereditary nerve disease) about 8 years ago and the neurologist I was sent to see was actually excited that I had HNPP! What? He said that he had just read about it in a medical journal and had never known anyone who had it before me. Well good for you doc! I'm stuck with this disease and you're excited because you get to test me and brag to all your colleagues because you have someone with a rare case... I quit him and went to a different doctor. What a loser! Anyway, I didn't mean to make this so long, but I just wanted you to know that I feel a little bit of your pain. I hope your daughter is doing better...You're both in my prayers. :)
    Hugs...
    Karen

  • I'm so sorry! I will continue to pray.

  • Thanks for stopping by my blog. I would be angry as well, I hate it when you know more then the DR that is treating your child. I will keep your daughter in prayer. Do you know WendyLeigh? You should visit her blog, she has 2 maybe 3 kiddos with autism.

  • appreciate for coming by to say hi! welcome back anytime and I do the same.

    I understand the  about someone calling you back when they say they will..irritated I tell ya.

    I will pray for the family.

  • Thankyou for coming by and commenting.   

    I would be pretty upset if I were you too.   I pray that everything works out quickly and Elisa gets feeling better.

    Hugs

    Crystal

  • Thank you for stopping by and saying hello I pray your daughter is doing better.
    Blessings
    Cathi

  • That's horrible what the nurse said.  You're right, people should be educated more than they are - especially in the health care field.  How frustrating!  I agree, write those letters.

    My aspie son is 21 now, and I can't count how many times people have gotten the totally wrong idea about him and his behavior, even when they have supposedly been "informed."   Some people will just never get it - but you wish they would.

  • hi...I pray the Lord will supply ALL your needs as well as Elisa's.    Even though not all doctors know or understand...Jesus is the Great Physician and NOTHING is impossible with God.  Bless you!

  • I don't blame you for feeling so angry/frustrated with the docs.  And it's o.k. to be angry!  Afterall, God gave us those emotions......it's just what we do with them that gets us in trouble.    I don't think I'd stay quiet though...this is your child and you have every right to speak out and "get the squeaky wheel greased."    I don't know a whole lot about autism, but I do applaud you for being so strong for your daughter!!!  Praise God she has you as her Mommy!!!! 

  • Hey Trina!   So sorry that things are still so difficult and for all of your frustrations.   I'm praying.   Jenn

  • I cannot imagine your frustrations!  What caused the infection?  And is she feeling better now?

  • Hi Trina, Thanks for stopping by. I was reading your post today about autism. One of my good friends has a 6 year old who is mildly autistic. Little Evan is so sweet but is a handful due to the autism. I will be praying for you. I hope there is a cure for autism one day. That would be WONDERFUL!!

    Have a good evening!

    Penni

  • I know what you mean about people not knowing about autism.One would think that being IN the medical profession that they would know something about it. Ugh! Maybe you could put together a letter that explains Elisa's diagnosis and behaviors and just hand that out to the doctors and medical personnel that are treating Elisa-it might save you from having to spend time explaining to them about autism. (((hugs))) and prayers, my friend.

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