Thursday, January 21, 2010

I hate Doctors!!!

Well I took Brady to the GI doctor today.He was suppose to go to get a consultation for his feeding tube and to recheck his enlarged liver.It didn't go that way though.His doctor basically said there is nothing he can do for him.He said that Brady isn't going to grow.His brain damage is too severe and he has too much going on with him that there isn't anything he can for him.He said he won't give him a tube.He even told me to give him whole milk.He has severe milk and soy allergies.Why in the world would I give him regular milk.He said Brady is never going to get off the bottle and I'm wasting my money buying expensive milk.

I am so mad.This man has only seen my child twice and that was for 15 minutes.He doesn't know anything about my son.He said his Xrays  came back normal.He has a horrible curve because of scoliosis.I know his spine is not perfect.I'm just mad that a doctor can say that there is no hope for a 14 month old.He can still live a good life.I'm okay with him not being about see.I would love for him to be able to see me but I can deal with it.I'm okay with him not walking.I would love to see him run and jump but if it doesn't happen I'm fine.I'm okay with him being behind.He can always catch up.To tell me to take my son home and keep him fed and comfortable,I don't accept.I know children can make progress.There is no way I'm giving up on him.I'm going to prove that doctor wrong.


  1. Candice! I saw that you were a follwer of my blog and stopped by to read about Brady! It doesn't sound like the GI doc is giving Brady a chance AT ALL! does this man/woman know ANYTHING about CdLS?? Are you in contact with the Foundation? It sounds like you need some help and consultation! I was told many similar things by people who had no clue what CdLS was or is... I cannot believe a doctor would say that to you..
    what sort of brain damage are they thinking that he has? please email me when you get a chance. and if you don't mind, I would love to share your story (with your permission) with other parents.. are you on Facebook or the Yahoo support group? sorry for so many questions.
    Brady is adorable! I have been so bad at keeping up with my blog, but i hope to get more active!! ok, I am off to read more about you all! :) take care!

  2. Candice, please contact the CdLS Foundation as soon as you can! This doctor is wrong! You need to trust your instincts and find a doctor that will treat him so that he can have the kind of life you envision for him. Our kids with CdLS are tough and with good medical care they can thrive. We've been blessed to have many good doctors for our daughter with CdLS and she is doing well. As with ANY disorder, you should seek a second opinion. Hugs to you and Brady. You can do this. Christy

  3. Hi. My son also has CdLS. I found your blog through another CdLS mom. Please contact the CdLS foundation to get advice and contact information for a doctor who is both familiar with CdLS and who cares. There doesn't seem to be any excuse for what this doctor told you.

  4. Hey!
    What is it with GI docs?!?!?!!? Our first one for Emma (also CdLS) was an absolute JERK!

    I'm so sorry this happened.

    But you're absolutely right! Our kids prove doctors wrong every day! They are our little miracles