Have you ever been in a situation that just seems to have no reprieve? My daughter has been suffering with some type of illness over that last 3 years. Over and over we return to Children’s Hospital to only leave filled with more questions than answers and if it were up to them, more medications rather than solutions. It seems that if you don’t go into Children’s with a diagnosed problem, you are not coming out with one either. This is my story of Adventure. Eat. DIY. Repeat. and how I stopped making car payments for my Dr.’s and took the reigns to uncover the illness that was plaguing my daughter. I am a MOM who empowered herself to make the difference in her daughter’s failing health when a Children’s Hospital failed to! This is our true story based on our family.
I believe that over the last 4 years, I have easily purchased at least 2 Luxury Cars for a few Dr.’s in the area, and they never even have written a thank you note, LOL!. If you think I am kidding, I am not, because we have been in and out of the hospital, Dr.’s Offices, and made so many trips back and forth to the same Dr.’s to come out with no answer, that there is no way we did not pay for the car they are driving. I think I need to get the repo man to grab my keys and let me ride!
At that point in time my daughter had been hospitalized with stomach migraines, she had, had every possible blood test, had debilitating headaches, walking/Spine paralysis and about 20 trips to specialists that offer no answer but sure do take you co-pay for their ‘time’ –
The Answers Offered To My Daughter’s Mystery Illness
Most of their answers to anything stomach related is that you need Psyche Consults. Not every illness is created by the Psyche, nor are they imagined, but tell a child this and you really put them over the edge. Don’t let the hospitals just pump meds in because they ‘believe’ it will help. Learn about the side effects of medicine and how they will affect your child. We were given Amitriptyline, and let me tell you all that did was create my daughter to GAIN weight, and we still ended up in the hospital with all the same symptoms… Nice Try, YOU FAILED! Don’t pass go. The Hospital’s Clinic Answer when we returned once again with the same symptoms and became hospitalized:
- did she really take her meds? (here’s my foot headed up your #@!) and that is me putting it lightly!
- Let’s INCREASE the dose. (Oh ok. she is here because meds you prescribed did not help.. and they have created her to gain 10+ in 2 weeks and now you want to plump her up some more due to your ignorance of looking at the symptoms!) NO THANK YOU!!
Children’s kept terming the inability to walk, talk, hear, eat and pretty much live, “Stomach Migraines” with no true offer of help unless we wanted Psychiatric Counseling. Now if you know me, you know my family and pretty much the LAST THING WE WOULD EVER NEED IS A PSYCHIATRIST. Without accepting the consults you and going to ‘CLINIC’ you are pretty much then considered un-treatable.
The Battle In Hospital
With questioning that just drilled us while our daughter was in the hospital: “do you have a normal home” What the hell is normal anymore? We have a husband and a wife living in the house, what does it matter, is it not more important that we have been seeking help for our daughter and can’t get her well? Does it matter that for a few weeks at a time she is happy, healthy and participating in every and anything at school and then suddenly plagued by debilitating illness that has nothing in the bloodstream that shows up?
Why are we put in observation floors? Is there no way to treat the symptoms? Can one symptom not be a key to the problem? Is it her gallbladder? Is she sick with Gluten? Does she have food allergies? What about calling in a GI Team? Oh that’s right we had a GI Team, their solution to date over 2 years has been 2 endoscopes and 2 colonoscopies, because what Harry couldn’t find Jim was going looking for.. Yes sense the frustration.
Sick of going back and forth with those in the white coats, and knowing I already knew more about my daughter and actually listen to her symptoms, I had decided after multiple different stays at Children’s we would stay no more and we were going to get to a specialist out of the Children’s realm! ‘
How I stopped making car payments for my Dr.
Considered un-treatable, unless we would agree to Psyche Consults we were dismissed and I wiped my hands of that whole fiasco too with a big DISLIKE button for the place, the staff and all those that did NOT care enough to just read the easy symptoms on the wall. Epic Failure because Children’s only wants the BIG NEWS catches, and they don’t diagnose. It was sad but one NURSE told us, “If you don’t come here with a diagnosis ahead, don’t plan on leaving, we just treat symptoms!” ANNOYING.
Goodbye Dr. Car Payments!
I guess you can tell that this all lead to total frustration and when my daughter turned 16 we ran out of that hospital and found a real STAFF to help us at an ADULT hospital who also treated children age 16+. I wonder how they are paying for all those fancy cars now? I stopped making car payments for those Dr.’s and started getting help for my daughter from a real Dr., with only 3 total trips! Surprise, Surprise that within a total of 3 trips she is leaps and bounds better! Yeah, I said THREE Trips!
The Dr. We went to visited her medical records and saw that over the last 3 years, my daughter has been hospitalized over and over again, with no real diagnosis, has had sonograms, MRI’s, X-Rays, Blood tests, endoscopes, colonoscopies, and that it seems to happen every few weeks. In addition he noted that her GI Emptied normally, all blood tests were normal and she otherwise appeared to be a normal, healthy child.
The thing he had noticed was that she had mentioned burning facial acne that flared during a bout as well as a burning, throbbing, stabbing sensation on her right side. He was treating what he could see and also what he could not.
We met with our new Dr., who is known and respected as one of the top 26 in his profession and within 1 week of our initial consult with him, my daughter was already feeling better. He also had us meet with his Dr. that handled all the skin conditions and she verified his diagnosis, but this was all done in his office at the same appointment! The Skin Dr. and Our GI Dr. both concurred and decided Goodbye Gluten, cause you are sucking the life out of our daughter!
Week Two Of Sucking The Life Out Of Gluten
By week 2, even better and by the 4th week and our 2nd meeting with him, a whole new girl was appearing, as she had color to her cheeks, an appetite and so much less stomach pain. What was the key? What was it that he did that NO ONE else thought to do?
The Dr. had reviewed her records, read every test and then said, “let’s stop eating Gluten products, immediately and if this helps in a few weeks you will feel some relief and in 6 months you should feel 100% better if you stay steadfast to the Gluten Free eating regime.”
We passed the 2 month marker and our daughter was doing even better, but the challenge now became attitude. Imagine being 16 and learning that those most coveted foods, pizza, hamburgers on buns, pasta, and breaded foods were ‘off limits’ now. Our daughter’s world was about to change. If you are not familiar with Gluten Free Foods, they do not taste the same and she let us know.
Gluten Free Foods
As a mom, I was torn, wanting to make her get better and stay better was my job, but I knew that the GF Food was yucky and no matter what I did using my Mom Super Cooking Powers, it was just not food she was accustomed to at this point, it tasted different. I knew there were things I could do to make the transition to a Gluten Free Life easier for her and I began to study all the foods we needed to avoid and then I created a list of foods she could enjoy. This is a whole other lifestyle change, but you can read about it HERE. Gluten Free Dining with my Daughter Kallie.
Passing the 2 month marker was huge, but this nightmare was not done yet. Gluten was masking a few other symptoms that had appeared but been ignored and while our new Dr. noted that they were there, he wanted to be sure before trying anything else ‘risky’. Hold on folks, the ride is about to take a bumpy path…. Again.
I am not a Dr. I am a mom who empowered herself to GET the right answers when a Lack of answers failed us. My daughter’s health was at stake. This is OUR Real story based on our experiences that were horrible and not acceptable. Complaining gets you nowhere, advocate, and move on!