Friday, April 1, 2011

It all started.....

Ever since I was a kid I have felt like I was different. I don't mean different as in my mom told me I was special. I mean different as in I didn't have a clue what the hell was going on. I felt disconnected from everything, like I was looking through really dirty windows all the time. I felt odd. I got teased alot. They said it was my red hair but I think it was because I acted different. I was withdrawn. I was always tired. I never wanted to do my homework and was getting bad grades. I had a hard time talking to people and I was slow. I moved slowly and carefully. I didn't like fruit and wouldn't eat it. I didn't like anything really and would hardly eat. I didn't feel hungry. I always felt sick to my stomach. I also had moments where I felt crazy. Running around in cricles and saying wierd stuff. Don't ask me what. I blocked that part. My mom was horrified to bring company over though.
When I turned 13 things started changing. I started drinking Mountain Dew and eating candy bars. Mostly because they were cheap and available. That is also the year I started throwing up regularly. I mean, every morning while taking my shower. Every. Morning. I complained to my mom and she took me to the doctor who did some kind of barium xray. I had to drink something nasty. The doctor said the didnt know what was wrong. they suspected ulcers I think. Somehow, some reason it was though I could be Lactose Intolerant. So she bought me lact aid for my milk. but it didnt help. I quit drinking milk. Later that year my Mother got diagnosed with Fibromaylgia.
I did manage to graduate from High School. Barely, but I did it. Got a job and then got married. Right out of High School. I like to gloss over this next bit because it is painful. We got hooked on drugs, he beat me up alot, had a baby, then finally left him when my boy was 6 months old. I had been so physically hurt that it took me a month to walk right again. But I did, I went to college, raised my son, moved on.
My son was always getting in trouble in preschool. Every other week I would get a call from them to leave work and go get him. Eventually he calmed down but I would still get calls at least twice a year. It wasn't something little. It would be because he kicked a boy in the nose and made it bleed. It was always something violent. I was still young. I didn't know it wasn't normal. Eventually, by first grade the school had had enough. They requested I get him tested. They decided he had ADHD and wanted him on meds. I fought that but in the end it was either that or he couldn't be in school. I had to work. I gave in. And for the first 2 years it seemed to help. But then it quit. And every new med they wanted to put him on quit working soon after.
When he was 9 I started seeing my now husband. We added in his daughter. We lived together. Everything seemed to be good. Then i got pregnant. We were ecstatic and so were the kids.
Everything was going good. I breastfed and cloth diapered. I loved being natural. I researched everything. My daughter started throwing up most feedings. She started looking skinny and out of porportion. Not normal out of porportion like normal kids whose heads are to big for their bodies. She looked different even from me son and step daughter. It was the top of her head. it was the right size and everything was too little it seemed. Like she wasn't growing right. I had started her on baby food at 6 months and by 9 months old she had circles under her eyes and was way skinny. The doctor said she was fine for a breastfed baby and gave me anti-acid medication for her. I gave it to her twice. It didnt help. She started refusing everything but the breast. It was then she stopped vomiting all he time. I was told she was fine. I wanted to believe it so I soldiered on. Then I got pregnant again. I had to wean my first daughter. I couldn't take the pain. It was awful. I completely regret not sticking with it. My second daughter wsa born naturally. No meds, not laying down. The most amazing birth I had ever had.
This time I did baby-led weaning. When you let the kid decide what to eat and when. You just offer it to them it hand held pieces and let them play. She never ate anything, just played. She refused to eat fruit or veggies, but she would gnaw the hell out of some steak.  She looks healthier than her sister. She never throws up. And she gained weight better. I started giving her juice in a cup and then it started to change. She started developing circles under her eyes. Her sleep was more erratic, she cried more, had bad diaper rashes, and started refusing all food and drink except breastmilk.
Now my son is complaing of chest pain and says he throws up almost every day. Within an hour after school lunch he is in the nurses office feeling ill. We won;t talk about his bowels on here except to say it wasn't pleasant.
I said enough. I screamed even. I couldn't look past it anymore. We were sick. Something was wrong. Both my parents had just been diagnosed with type 2 diabetes and I knew I was next. I started by taking my son to the doctor.
They dd EKG's. They drew blood. They took urine. They did tests. No answers. I started researching. That is when I heard about food intolerances. I thought it was lactose. After all, hadn't i been told that as a child. I didn't want to poke my children anymore so I made an appt for me to get tested. I had been seen years before for GERD. I had been taking meds for 7 years. I didn't want to medicate the symptoms anymore, I wanted answers. I quit drinking milk again. The GERD went away before I even made it back to the doctor's office. But they sent me home with a fructose, lactose, and bacterial overgrowth breath test kit to do at home. They also scheduled me for an endoscopy to check if I had more damage from the GERD. The endoscopy showed erosive esophagitis which was healing. The celiac came back negative. I was sure the lactose would come back positive and the others negative, but I was wrong. I am not Lactose Intolerant. I still can't drink milk without vomiting and cheese makes me nauseas. But i can eat yogurt. However, the frucotse and bacterial over growth came back positive. I was shocked. I had never even heard of fructose intolerance. I started researching. I had decided i wanted my kids tested before I even made their gastroenterologist appointment.
The doctor didn't believe me, told me I was wrong, but did the test to humor me I guess. She had to call me herself to tell me I was right. My son and older daughter both tested positive for rucotse intolerance. I asked about testing my youngest who is 18 months old. She said she wasn't old enough but since she had symptoms to consider her intolerant as well.
I know there is a difference between Hereditary Fructose Intolerance and Dietary Intolerance. As children we all hated sweets. As we got older we started to crave them. We have signs of both. I am really worried. The doctors want to test for mitochondrial defects since my son and daughter have different fathers. I want them to test for HFI and enzyme deficiencies. I just want an answer as to what exactly we are dealing with.
In the meantime, I plan to keep living the natural life and eating like I have HFI anyway. This has been a struggle. I have never paid this much attention to labels before. There are so many foods we can not eat. Even sucrose makes us feel bad. We are limited to dextrose, stevia, and maltodextrin. We eat dextrose candies every day because they make us feel better. It is the first time I have been able to do house work all day. My son's chest pain went away. My infant's teeth are remineralizing (using cell salts).My 3 year old has been acting better. She still wets the bed and throws tantrums, but is no longer as violent as her brother was. Sometimes the circles under her eyes almost seem to have gone away. I know I am on the right track.
I have decided to start this blog. I feel like I need a place to bitch and moan. To complain about not finding food or stupid doctors who don't believe that there is something wrong for a kid to not gain weight for 6 months.

No comments:

Post a Comment