This is super long, and I'm sorry for that. I've just had nobody to talk to about this really. I've got a son who is 6 (our surprise blessing..... our other two are 18 and almost 16)
We've been on a long, long journey to what looks like will dead end to Crohn's. It could still NOT be Crohn's, but I'm not holding my breath.......
Oh geez, where to start? This has been going on with him for at least 4 years, if not since birth. I have always thought that there was something wrong. He started having a lot of belly troubles, which he was able to express to us at about age 2. He would be in pain, crying, vomiting, then be fine. He would go from starving like a lunatic, to being anorexic. It never matched though, it's never 'I'm hungry because I haven't eaten'... Arugh... I can't even really explain it. Sometimes he would be so tired, others he would be fine. I asked the doctor about it, and because of my daughter (now 15) who is insulin resistant, we checked his insulin. It was fine, but still I couldn’t feel that it was ok. A couple years ago, it got worse. Doctor thought we needed to work on what he eats. He wanted me to add protein. We added protein, but it did nothing. We eat pretty good, since I started Weight Watchers years ago. Not perfect, but not horrid either. It got worse and worse for him. He would be sleeping and he’d wake up crying, and we’d get a bucket, and he’d vomit. Sometimes once, sometimes a few times. Sometimes he'd be playing, start crying or screaming in pain, but once he vomited, he was better. I remember one time I thought for sure he was in the beginning throes of food poisoning. He vomited a couple times, then got up and wanted to go back outside and play! I thought maybe he had cyclic vomiting syndrome or something. It was obviously not that, but I was looking for an answer. Finally it got so bad that we wouldn’t leave the house without a bucket. We’ve got them in easy to reach locations throughout the house and we have a perfect car size one. Also with this, but less noticeable to me because he's so 'bathroom private" is that sometimes he'll have Diarreah, sometimes he'll be constipated. After the two weeks of straight bucket carrying was when I went back in to the doc and said I was done, and we HAD to get this figured out!!!!
We were sent to a GI doc. She palpated his belly and said he was impacted. Severely so. She did an x-ray which confirmed it and had me give him Magnesium Citrate. Bottle one, nothing. Bottle two, nothing. Bottle three, finally a small bit of movement. She also wanted me to add even more fiber to his diet, as well as a cap of MiraLax a day. So we went back in for another x-ray which showed nothing much had changed. As well, the fiber GROSSLY worsens the massive pain he's in. After a good while, the mira lax does help to help him have a poo a day at least, but it doesn’t seem to help his belly pain, or vomiting. It seems to soften what he's going through, but it doesn't solve the problem I guess is the way to explain it. She had him do an Upper Gi, which seemed fine, but because of the x-rays she did some blood work….. nine vials worth! It came back with something abnormal so she did a cat scan. That was the most recent. Now, due to the results of that which showed wall thickening at the end of the small intestine and the beginning of the large intestine, as well as some lymph nodes, we’re going for the colonoscopy and endoscopy with biopsy as well as the endoscopic camera pill. I did ask her what it could be and she mentioned the Crohn's, but said that it could be an infection or blah blah blah blah...... (at a certain point it all became mumbo jumbo.. Through all this, I'm dealing with my own newly diagnosed epilepsy)
His testing is on the 17th, though I called them today (too late I guess) to see if he could get in next week instead as last night was just such a bad night...... Oh he was in so much pain....
I’m not sure what to think, I don't know what to expect and I have no idea how to talk to him about this. He's so young. Our surprise blessing he was...
I would just appreciate any advice or information. I've read so much on the internet, but personal information sometimes is just so much.... more.
~Mom to my "I'm 18 now and can do whatever I want" son
~Mom to my "I'm almost 16, can you pull some money off the money tree so I can have a super sweet 16 party?" daughter
~Mom to my 6 year old surprise blessing "Mommy you're my best friend" (which is what the other two said at one point!) son.