Kyle has not been well. In fact, he started having diarrhea and vomiting on the 19th of June. It has not stopped, well let me rephrase, it is intermittent. But at least once a week he vomits and the diarrhea is usually pretty sever several times a week. I've done a lot of laundry since the 19th of June.
So we saw a lot of our pediatrician. No luck. Started to see a gastroenterologist. He suggested some scopes. So last Friday, while I was in the throws of food poisoning (Evan was as well, but he was at work), we went to Riverton Hospital and Kyle had scopes and biopsies. This does require him being put out and on an OR table. The doctor told me there were some abnormalities and he had done lots of biopsies. The results would come in today. On a side note, Kyle did not come home sleepy like I had hoped (I was so sick), he did not take a nap until 4pm that day. I hate what medicine does to my child---it is not sedating like I wish it was.
We got the results this evening while I was making yummy lasagna roll ups for dinner, Aiden was screaming in the swing, and Kyle was calling out for me on the opposite side of the kitchen gate. I just shut myself in the pantry. I love our gastroenterologist, but he did read me the report from the lab word for word. What I do know is that there is a lot of inflammation in his stomach, duodenum, colon, and intestines. There is a lot of e-word things that suggest he is having a type of allergic reaction and something having to do with white blood cells is also high. These things are usually seen with celiac disease, but the villi in his intestines are still intact; therefore, it doesn't look like that is the cause. What is the cause? No idea.
We could see an allergist, but the doctor thinks that won't turn out a definitive answer. We could try steroids or we can take him off all dairy (we already have taken him off milk and ice cream, which was causing too much stool earlier in his life) and all soy for ten days and see. We are going the second food route starting Monday when I can get to the store to buy almond milk and have a little time to plan out a dairy/soy free diet. What are we going to eat?
All I know is that there is something wrong with my toddler. He has not been himself and the diarrhea gives him yeast rashes and causes horrible painful skin. His weight is dropping while he is getting taller (he was small to begin with). He is also sleeping--a lot. Most days 15 hours or so--we sometimes even have two naps. On the day in the picture, he went to bed at 8pm one night. At 3:30pm the next day, I went to see if he was still alive. He was up until 5:30pm, slept on my bed for an hour, and went to bed at 7:30pm where he slept soundly until 10am the next morning. He has huge dark circles under his eyes most of the time.
I wish that I had my little boy back and I wish that they could tell me more definitively what was wrong. Something is wrong and the test corroborate that. Now, we just have to play around until we can find a solution.
8 comments:
Scary. I hope the new diet works, so that he can get to feeling better!
oh my gosh. i will say a prayer for kyle. maybe we should have a fast too. this really breaks my heart, especially the painful skin, zombie like sleeping and dark circles under this eyes. want me to look up recipes for you?
Hey girl. I really hope that they can confirm something soon and you can get him on the road back to his usual self. This must be so tough on you as his mommy! I will be keeping you in my thoughts and prayers.
Now, to be honest, I know they said the villi in his intestines don't seem to point to celiac's, but everything else, it all sounds like celiac's to me. I have it. My sisters have it. My mom has it. And my sister-in-law all have it. When I was reading this post, I just thought, 'Oh my word, he has celiac's' before you even mentioned it. I had most of those symptoms and some others. Maybe for some reason its been busy attacking other parts of his body that it hasn't made it to his intestines? Maybe since he is so young, he villi are stronger? I dunno...I just hope it gets figured out sooner than later for you! (I would push to have his tested for celiac's anyway...) but these are just my thoughts and I definitely respect that you are his mom and ultimately, you're going to have the best intuition about your baby boy!
So sorry to hear.. Brynleys little friend has Eosinophilic esophagitis which is what I am guessing that big E word is. He was throwing up several times a day and has had since several scopes. They have had to cut out everything except basically chicken rice and fruits and veggies. It has been a long road for them. They have had this all cut out for about 6 months and still haven't seen much progress with is esophagus. Though he hasn't thrown up at all since they cut everything out. They see a team that is a GI and Allergist. Let me know if you want her info, she has made it work with meals. Though Kyle's situation might be something entirely different!!
Holly, I'm a paranoid freak (admittedly), but I remember looking back at older posts of a teeny-tiny Kyle and thinking "Oh my Gosh! He has CF!" However, at one point or another I've also been convinced that my daughter, a boy I saw at WalMart, and several of the kids in our neighborhood have it, too. (I told you I'm a freak!)
Obviously I don't know the whole situation (or even very much of it) but has CF been explored as a possibility? Especially in babies and young children, GI and bowel issues are often the first clue that something is up.
I'm sorry to hear that he is so miserable and, in turn, so are you. I sincerely hope that SOMETHING helps him feel better... and SOON!
This makes my heart hurt. I'm so sorry. I pray the doctors and YOU are able to figure things out soon. Poor little man.
Holly, that is so frustrating. I am sorry this just keeps dragging on for you guys. I hope they can figure it out soon so he can start getting better. But, I am way relieved that CF is pretty much ruled out. Chris and I were pretty nervous when that was mentioned as a possibility.
Holls, I hope the new diet isn't a struggle, you're always in my prayers, but Kyle specifically will be too. I miss you tons and wish I was there to make him drink noni and cure him :)
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