Unsure, frustrated and scared
Hi, I am new to this site, and I am hoping for some suggestions, opinions and help. I could have posted in multiple groups because I feel this covers many. My daughter will turn 31 yo next month, she lives in a group home, nonverbal and has Autism. She has always been very healthy until last summer. Within a weeks' time, she treated for pink eye, developed a detached retina and diagnosed with Left eye, spindle cell melanoma. They have removed the left eye and she seemed better for almost a month. I gained access to her medical chart through patient portal and these are finding I have found within the past 8 months:
CBC is all abnormal, WBC ranging 11-14, IMM granulocytes, eosinohils, lymph and neutropils all high
TIBC results:
Iron, Transferrin saturation low and TIBC WNL
POCT UA/Dip:
Positive for Luekocyte Esterase,Protein and Blood (on many separate occasions)
CMP results:
Low sodium and calcium
Elevated AST, ALT and Alk. Phosphate
Instead of looking at the whole picture and seeing the problem she has been sent to multiple specialists for each individual problem and not communicating with each other. Her last appointment was with a hemotologist, last week and they looked at her CBC results and said "these results are her normal". What???? I'm sorry but I'm afraid she has a serious medical problem and it's not being evaluated, and no one will listen to me. She cannot tell me how she feels, and we can only go by her behavior. I don't want her to end up with end stage Leukemia or something and have them tell me "There's nothing we can do". I'm just looking for some advice or guidance on what to do for her. She is not the same anymore and has no quality of life left. She used to like doing everything, movies, boating, walking, vacations, swimming, etc. Now she stays in bed and sleeps most of the time and to me, she looks very sick like she's dying. Each individual specialist says "they arent concerned", well I am:(
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
As a mother, you know -"Something is up" A mother fights for her cubs. My heart goes out to you, medical world pushes everything under the rug, they are confused by or trouble understanding, most doctors wants people with cold, flu, even COVID 19, heck- doctors are more comfortable treating normal stuff then something rare! My son is autistic also and turning 23 in few months (he is verbal but on 4th grade level). When I died from cancer, who will help him? Levi can't pay the bills or drive, he lives at home but he will need help. Life is frustrating! Pain and Sleep, are a problem with cancer. If she cuts down on activities: not doing what she used to do, her body is sending warning sign. Its feels helpless when your the mom, and you can't stand back to watch "young person go through this"> BUT that's what happens - it's a waiting game. We can't control, something we have no control over (hope you find support) Husband lost his sister at age 30. I lost my sister age 40. God bless! Prayers!
Hello @scaredmom Your name says it all and as a mother myself, the anguish you’re going through watching your daughter suffer is carrying through the computer. I wish I could reach over and give you a hug…
How frustrating to not be able to get followthrough medical care for her. Have you tried a larger medical institution such as Mayo Clinic or a university teaching hospital? They openly communicate and work collaboratively with other specialists within the clinic to bring all of the symptoms into a singular focus to see how the pieces fit together. You daughter has multiple issues that need this type of cohesion.
Not sure where you live, but Mayo Clinic has 3 campuses, Rochester, MN, Phoenix, AZ and Jacksonville FL. Here is a link to their main page which provide the phone numbers for each location.
http://mayocl.in/1mtmR63
Have you tried a university hospital?