This blog is about my life so far. I married my best friend,Billy, who was also my high school sweetheart. Together we've raised 3 children. We've been a home schooling family for the past 15 years~2 down ~1 to go. In 2006,following several years of a steady decline in health, I was dxed with Addison's disease.Followed by C.O.P.D.,Diabetes & Chronic Pain issues. It has been a wild roller coaster ride.
Wednesday, August 25, 2010
Becoming a medical detective through Journals #1
I've got so many thoughts swirling through my head. I've been keeping journals on & off my whole life. sometime after I turned thirty my journals took on the look of a medical detective. This wasn't the first time I had to play medical detective. Shortly after my son was born, I knew there was something wrong. I was breast feeding him and after he ate he would scream for hours on end. I took him to the pediatrician often, telling them of his "symptoms". I was told he had colic and that he could sense MY tension and that was making him nervous & colicky. as the months started to roll past, he didn't really pick up any weight and his head had one of the worst cases of "cradle cap" that dr's office had ever seen. I was told to scrub his head with Selsum blue & a tooth brush. (which I tried to My mothers horror) Soon it was no longer just cradle cap, both sides of his face (like a beard meeting at his chin) was raw,open oozing weeping & bleeding. Then his diaper area from belly button to top of butt crack was the same way,open red raw,a bleeding oozing mess. For this the genius dr's had me put strong medicated steroid creams & others all over him head to toe, wet his pajamas & hat, wring them out, put them on him & then put his dry pajamas over the wet ones. after a few hours the pj's would dry on him, I would strip him down & start the whole process over again. It was December in Massachusetts. It's a wonder he didn't end up with pneumonia or hypothermia. When this system failed to work they took biopsies of the raw places, to no avail. All the while my grandmother kept saying have they checked your milk, maybe it's something in your milk, to which my standard reply was, Nan they are dr's they know what they are doing & anyhow I'm not eating anything I didn't eat all along. When He turned 6 months old and only weighed 10 lbs ( and was born at 7lbs 5 oz) the dr's decided there was defiantly something wrong, started asking me what I was feeding him & what was his schedule. I told them that he hardly nursed at all (which I had been telling them all along) I told them I was following THEIR directions of giving him a little rice cereal mixed with water prior to nursing. They admitted him into the hospital marked as a "failure to thrive baby" due to "first time mothers nervousness". I weighed him,then nursed him,then weighed him again. He hardly gained an ounce, the dr's said,"well there is the problem, he isn't getting anything from nursing" they put him on the first of a few formulas they would be trying over the next 2 days. He couldn't keep anything in or down. He exploded from both ends. with every new formula they tried, he just got weaker & weaker. after 2 days they decided to transfer us to a major children hospital in Boston. Once there God blessed me with a sense of ignorance. They checked him for every disease under the sun & I kept saying, He is just a little under weight we need to figure out what to feed him and he'll be fine. That is what I focused on, and not all the tests & worries that they were having. After about 6 days they finally said He is allergic to all he is eating. The pediatric dermatologist was NOT happy with the creams or regime they had me do (with the wet/dry PJ's) it was all from food allergies. The Ped. Gastro & Nutritionist came up with a formula that I made daily for him. 2 jars of Gerber lamb,oil,salt,tums tablets,water blended together. On this he thrived. He drank it daily for the next two years. This began my medical detective journaling days. As the years rolled by, and he tried new foods, we would find his allergy list grew as did my journals trying to track all things he encountered, food wise & environmentally. Turns out Nana was right, they should have checked my milk, they would have found he was allergic to all that I was eating!
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So glad to see you writing in your blog!! This experience sounds terrible...the doctors should have stretched themselves further than to just prescribe a textbook answer. I shouldn't get started---haha.
ReplyDeleteI hope the allergies lessened over time. Poor kiddo.
We had been told that he would never out grow his allergies and at about 12 we stopped having him tested. When he decided to go to Culinary school we had talked to admissions about his food allergies, they said since it had been so long since he'd been tested that they would need a more recent test results to accommodate him. So we went for testing. turns out he out grew most of the allergies. He now eats everything he couldn't for the first 19 years of his life! but my husband says that dealing with dr's & such prepared us for the challenges we now have dealing with my health issues.
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