Why keep it hush-hush?!

Got a peek at some of my daughter's records from Children's Hosp Seattle. A few docs said she doesn't communicate enough and "mom" is sort -of running the show. I was discussing it with my daughter who said it's nutty to ask a kid who is in 24/7 pain, who is just holding on to recall details from months and months ago. Even more though, she asked why nobody has ever SAID anything to her about it! If they want her to communicate more, maybe they should have COMMUNICATED it! I am with her 100% but I think we'll create a doc with timeline and details so she can answer questions more readily without me chiming in.

Thanks, Beeba!!!! Some days it seems as if every body around us...between docs, extended family, the principal at school (she's a 4.0 student who has never been in trouble; why is he questioning her 24/7 headache idk)...feels as if everybody is totally nuts.

Mum is very often the BEST person to ask. Don't let them get you down. xxoo

Ok....Please don't be upset. Before I became sick I worked in Appeals at Blue Cross and Blue Shield. I have literally read thousand of medical reports and records. You are your daughter's advocate. I forget things and have people go with me to dr. appoints. You have every right as a parent to answer questions. We are adults we can answer more precisely & more accurately. If you make a Timeline he will say it sounds rehearsed. You are a great Mom. I would tell them you will give them her medical history and if they have specific queations to ask your daughter , but one of the CM symptoms is memory loss or lack of word recall. I know you are a strong Chiari Mother....Do Not Let Them Intimidate you or put pressure on your daughter !!!!!!

Tracy Z.

your best bet is to have her keep a journal and print it out when you go to the doctor,,,,

i would be ready to shove those words down that doctors throat!! I dont know how old your daughter is but WHAT do they expect you are her mother!!!!!..

sometimes it just gripes my goat that these docs dont get it memory recall is awful-- hell if it werent for my husband in the beginning i wouldnt have gotten good care, then after i had my decompression and ended up with complications...gosh i hate to think what would have happened if they were expecting me to speak to them--- dumba---es!!....

Stand firm you are your daughter advocate

I agree that is your job as her mom. I have been in the same shoes as you. I also looked at my daughter chart when she was in the hospital. She was admitted for extreme pain and unable to walk due to the pain. They put in her chart the I was being unrealistic because I want the Dr to fine away to bring her pain down. That mom needs to face facts daughter will be extreme pain and she needs to deal with it. I about went off when I read that. I even confronted the Dr. I asked him so are you guys excepcting her to live in extreme pain and unable to walk? Is that how she is suppose to live. Of course they back track and said oh no,we are trying everything to help her. Dr do not think before they speak or right. Thats are jobs as mom to take care of are children.

That might have been a compliment!? It shows you are a great mother who knows her daughter and can see when there is something wrong, also shows that you and your daughter have great communication. Great job mom!