Maybe I should wait to post this. Maybe my frusteration will wear off after a few days. But then again, I am inviting you on the ride to this new life with Baby D, so a watered down version of anything wouldn't exactly be fair, now would it?
About a month ago we got a call giving us the results of a biopsy D had done of his intestines. The nurse told us he has sucrase deficiency. That's it. Sucrase defieciency. Okay, what's that? So, after 4 long weeks of trying to find something on the internet, and crazy person calling the nurse and dietician, our appointment finally came around today. Sucrase is an enzyme that your intestines secretes that breaks down the sugar sucrose. If you lack the enzyme that breaks it down, it causes chronic diarrhea as well as other problems. In these past 4 weeks I have had all the sucrose taken out of Dominic's meds and supposidly breast milk doesn't have it in it. His diarrhea continues though. So, we are trying a medicine called Sucraid that replaced the lacking enzyme. Only one company makes it, and since the demand is low due to the relativly rare incidence of this disorder, they have complete monopoly over it. One bottle costs $6,000.00. That was not a type-o. Remember how I was griping about the eczema lotion that cost $500? That doesn't sound too bad now, ehh? So, we put in an application to get approved to take it. Today we were told Dominic is the youngest person in their clinic to ever take it, so he's a sort of experiment. Awesome.
After we saw the doc, we went in to see the dietician. I have been being told for months now that at his 6 month check up we would discuss giving him blenderized solid food through his g-button. I have been patient. After arguing about which fat to supplemet him on, a lot of eye rolling and head holding by the dietician, we agreed on canola oil. Then on to the amount he is to be fed. Again, another argument. Sorry if I don't feel comfortable when you tell me you reviewed his chart on Monday, since you just got him confused with another kid. Check it again please. Please. Finally, she reluctantly did. She seemed to be done with our visit when I said "and what about food?" She looked at me in a "are you serious woman" kind of way and said "oh I don't think the doctor will want to do that." I just stared at her, said nothing. She then got up and went and asked him. By george, he said it was okay, so again, another bit of attitude and we have a plan for a few weeks. He can not have any starchy or sweet veggies, so we are left with spinach, green beans, brocolli, and cauliflower. I only got the last two because I kept naming veggies until she agreed on some.
What is it with the dieticians at Cooks? I'm sorry, I know I should stop here, but I just can't. I am being very nice in the above paragraph. It got so bad I was about 1 second away from standing up and walking out. It takes alot for me to get mad. Having to advocate is one thing, but being treated like a crazy mom who bucks the system is another. We are not in middle school, save the eye rolling. You know what, I will make your professional career a living hell because I will not be a good little patient and feed my kid canned food. He is a person and people are meant to eat real food, not some hypoallergienic crap produced by pharmaceutical companies. I will just save her the trouble and switch dieticians now. The last thing I need in my life is some bitchy lady giving me a hard time about what food I can and can not give to my kid. Last I checked, I'm his mom.
Sorry for this, I'm just so mad! I will stop here because if not I will regret it.
Honestly,
Chasity
Chasity, you vent all you want! You are D's biggest advocate, and I am so happy he has you. I know the medical establishment sometimes has an iffy definition of food, so I am so happy you are standing your ground. Don't feel like a bitch - it is her problem... sounds as if she is being so immature. Switch if you can! You don't need anymore stress... You are doing a fabulous job from what I see on these blogs (which I always ready when you post). Thank you for sharing D's story with us so candidly.
ReplyDeleteChasity,
ReplyDeleteI had the priviledge of hearing Dr. Stanley Dudrick speak about fats last weekend at the AdvoCare conference. He pioneered research & development of intravenous hyperalimentation, and back in the 60s began working with a lot of pre-mature babies. Anyway, back then they gave the babies soybean oil thinking it was good, but as it turned out it had an inflammatory response (and apparently still does). He found that when they gave the babies Omega 3 fatty acids (fish oil), the babies improved dramatically. I just thought I'd pass this along to you since you were discussing the fats for D's diet.
There is nothing more annoying than when someone, especially a "medical professional" acts like they know better than you do when it comes to what is good for your baby. Their advice/knowledge can be beneficial, but NO ONE knows better than mama! You should certainly stand your ground like you did and find someone with more compassion. I had to deal with stuff like that a lot when Ben was a baby with all his allergies and vaccine reaction; we have a much better Pediatrician now! It's good and necessary that you vent so you can get feedback and the support that you need. You did good today; I'm sorry it was such a frustrating day. Dominic is so blessed that you are his mommy!
Wow. Hope that lady was just having a bad day, otherwise she is highly unprofessional. Seriously, I know my situaiton is way different but a big part of our job is advocating for our kids and sticking up for them.
ReplyDeleteI used to take notes because I would have so many people talk to me throughout the day at the hospital. One morning at 6am a tech came by to draw blood for Caydence. Harmless enough but that was not the plan the docs and I had talked about the night before. Turned out the tech was in the wrong room. Seriously people. Seriously! Makes me sad for the kiddos that don;t have parent with them 24/7 in the hospita.
I am now following your blog as a recommendation from a mutual friend we have. I also work at Cook Children's and I too have a child who has to see the Dietitians in the GI Clinic. I have written angry letters 2 separate times re: not only the dietitians there but the whole GI clinic staff! With the exception of the wonderful GI doc you reference (from Africa), we have had an awful time with them. If you can, e-mail me who you switched to and if you saw an allergist in FW b/c we may be headed that direction too. Thanks! Leahnicoletti@sbcglobal.net
ReplyDelete