This disease is such a roller coaster. I thought since we figured out what was wrong that things were going a lot better but things can change fast.
Taegan's story from the beginning: From the time he was born he always seemed so little. He used to spit up all the time in large amounts, it would pour out of his mouth. He would be soaking with puke both his clothes and our clothes would need to be changed, the floor would need to be mopped. The best thing to use was his blanket, not a burp cloth. It was very messy and I was constantly washing his car seat.
I brought up my concerns to his doctor over and over again. His weight started dropping off the charts and he didn't gain any weight for about 6 months. He was an ornery whiny kid. I call him my leech because he is attached at my hip. He also didn't sleep through the night. I was feeding a bottle around 4 am still at a year. Some thought I was spoiling him but a mother's instincts are best and I'm glad I did it. His vomiting started getting worse as he got older. I didn't know then but it was probably because we were introducing more foods. I kept a food diary and kept track of his puking and we couldn't pin point why. Some days he would vomit 12 times a day. Sometimes while he was eating, right after, or hours after. He also couldn't handle textured foods and still has issues today. He will gag or choke on a piece of apple so he pretty much eats pureed foods.
He was put on and off different medications. At first the doctors thought it was acid reflex which is a very common mistake with this disease. But the medication wasn't helping and I kept pushing. Something wasn't right. Taegan had an upper GI and chest Xray but didn't reveal anything. I took Taegan to a GI pediatrician who thought Taegan had Eosinophilic Esophagitis after talking to me for 5 minutes. We did a scope job on him a week later and that confirmed he had EE. Taegan was diagnosed in May 2008 when he was 14 months old and I was 6 months pregnant.
It was a relief to finally find a problem so we could work on the solution. I just didn't realize it was going to be such a hassle. I thought, oh give him a surgery or medication. It's not that easy. It is a daily struggle and many questions and not a lot of right answers. The best thing to do is eliminate foods from his diet, but I have heard some kids even struggle with the formula only.
Taegan has had skin prick testing done in UT and Vegas. He also had patch testing done in San Diego. He can't have any wheat, soy, dairy, eggs, peanuts, olives, garlic. His main source of food is a hypoallergenic formula.
TODAY ---- Since then he has had 2 more EGD's (scopes) and he is having another one done this month. He is 21 months old and Kadence is 4 months old. Kadence also was scoped because she was spitting up all of the time but so far she just has a loose sphincter. We are crossing our fingers she doesn't develop this disease.
We food trialed wheat and failed. The last few weeks have been a nightmare in getting him to drink his formula. It is absolutely disgusting. I've tasted it myself. It would be a great weight loss diet. He is constantly refusing his bottle and I end up pouring most of his formula down the sink. Feeding him can take hours each time and it can interfere with plans if he hasn't eaten. It seems all I do all day is try to get him to eat. There are also times when he will eat but then he vomits so I regret pushing him to eat. Anytime I eat I feel guilty and try to not eat in front of him because he constantly asks for bites and hangs on his high chair. It is sad that Kadence will pass him up this year. I think that will be very hard on me and Taegan.
I try to wait until he is hungry enough to drink his formula but after he refuses for so long I feed him other food so he won't starve. Even other food is hard because he doesn't do well with textures and he eats so little amounts. I think that him being hungry is part of the reason he is so ornery. But hey, I would be ornery too if I was starving all of the time and had to eat the same disgusting thing everyday while I see others eating whatever they want.
Most people say if mom isn't happy no one is happy. Well our mood is based off of Taegan's. I just want my little boy to be a normal toddler. He screams a lot of the day. Luckily Kadence is so good but I feel bad for her because she needs me too and Chris is gone so much it is just me.
The trials are hard in the fact that it is so exciting to give him a new food, but if he fails he gets use to eating more foods that taste good and then I have to take them away after he gets use to having them for a month. It is also a relief to take them away because it takes weeks for the eosinophils to leave his system so it takes awhile before he feels better.
The past 1 1/2 weeks he has also started vomiting again on Avg of twice a day. I took him to the doc and he doesn't think it is related to the disease even though I would disagree. He gave Taegan some anti nausea pills for Cancer patients but they aren't working. Taegan is still so ornery and gets up several times a night screaming. Sometimes it is because he has just puked in his bed. Anytime he cries I have to go check to make sure he didn't throw up. Between him and Kadence I can be up 8 times in 8 hours and then it is time to get up. She is better than he is but his screaming wakes up everyone in the house. My patience is running very thin these days, but I also have a lot of guilt. I feel guilty for not being as patient as I should and for not being able to give him the food he wants. There is always more that I could be doing. Always.
I am learning to be more of a cook these days. I wasn't much of one before but I am trying to learn how to make more foods for Taegan. It is frustrating though because it takes me hours and then it doesn't always turn out after I have substituted so many other ingredients and Taegan won't eat a lot of them because they really don't taste that good.
I have left several messages with the San Diego clinic and they never return my calls. I am very unhappy with them especially after I paid all of that money to take the trip down there and then they can't even call me back. I am debating going to the clinic in Colorado because that is the next nearest. I don't know of anyone visiting Colorado and would love some feedback.
Please don't think I'm totally complaining. I'm just trying to tell how life is. I am also fortunate there are foods Taegan can have. Many other kids with EE are way more restricted than Taegan is. Some kids can only have formula and water. I also have a great supportive family who are there if if I need them. Anytime a procedure is being done they pitch in and help anyway they can. My mom went to San Diego with me and goes to most appointments and procedures. My sister who has a son the same age is also very good when meal time comes around. We have to be careful in keeping their foods separate but we try and not make a big deal out of it. Sometimes she will changes some of her son's diet to accommodate Taegan's and there are times she goes without because she doesn't want to eat in front of Taegan. My family worries about Taegan as much as I do.
We are also blessed in so many ways. Trials seem to make you realize how blessed you are. Chris's job is hard in the fact that he is gone so much and works a lot of overtime, but it pays good and we are SO fortunate that his insurance is great and is covering the formula. So many people are struggling with that I couldn't imagine adding that to the list of things to worry about with this disease. The formula is more than most people's mortgage payment.
There are many things I wouldn't trade his disease for but that still doesn't make it easy .I have so many unanswered questions because everyone has a different opinion and there aren't any right answers because this disease is still so new. I am constantly reminded how he is different and how life is going to be hard on him. It will be quite a few years before he is old enough to understand why he can't eat our food. Our society revolves around food. Every time I put anything into my mouth I think about it.
http://www.apfed.org/video.htm
http://www.youtube.com/watch?v=lcME4XBJGDs&feature=related
http://www.youtube.com/watch?v=UPbsjt7qJtM&eurl=
