The Monkey Mystery Continues

I know, it seems like Monkey goes to the dr EVERY DAY! He had a check-up with his GI dr today. It was a pretty interesting appointment.

Yesterday, my older brother called and told me to turn on Discovery Health. Mystery Diagnosis was on, and there was a story about a little boy that had some of the same symptoms that Andrew has. The little boy was diagnosed with mastocytosis. I have not had time to research mastocytosis yet, so all I know is what I got from the show yesterday - which isn't much. Since I don't know much, I am not going to try and explain it here! The little boy in the show had much more severe symptoms than Monkey has.

Today, I asked the dr about it. I told her I knew nothing about it, but was curious if Monkey could have a less severe case of the same thing. The thing about mastocytosis is, it is rare and it is not something that shows up on most test. You have to test specifically for mastocytosis . The dr said she does not know much about it so she could not really say if it was a possibility.

I was telling her that Andrew had pretty much stopped taking bottles the last couple of weeks. I told her about his ear infections (FREQUENT ear infections) and that I was wondering if the lack of enthusiasm about the bottle was from discomfort with the ear infection. He was taking his bottles when he was going to sleep. Since his last ear infection, I have been holding him or sitting him in his high chair when he takes them. Part of why he was getting them at bedtime was because he was getting too distracted if someone was holding him and he would not eat. So, we are having that problem again. She asked what he was drinking and I told her about this purified water/juice that we had found that is the ONLY thing he will drink (I think we have tried EVERYTHING - he will drink soda, but....). While this stuff is at least a liquid he will take, it does not come near enough calories. We have uped how much food we are giving him to try to make up for the missing calories, but I am sure we have not come close.

His weight today was 17 pounds 8 ounces - which is about what he weighed in DECEMBER (the last time we were in her office). That means he still has not gained back all of the weight he lost the end of January beginning of February. This is obviously a concern. We had taken him off all dairy after the hospital. While he was off all dairy, he broke out in a rash. So, we put him back on dairy thinking maybe that wasn't the problem after all. He broke out worse. We took him back off dairy and I changed detergents (back to washing his stuff in Dreft), he did better for a while, but has broke out since. She asked if he was breaking out in hives. I told her I had been calling it eczema, but with no medical degree.... I showed here where he had been breaking out (it is always worst in the same spots). I also pointed out that he had little purple spots all over him. It wasn't really a rash, just like bad circulation or something (under the skin). He had been asleep in a awkward position, so we did not look into it too much. As we were talking, I looked down at his leg - it was covered in a rash where he has been getting them. He also had it on his back and stomach ( he doesn't normally get it on his back though). Sad to say, but I was actually kind of EXCITED that he broke out. We have been to the dr several times since this started. The night before an appt he could look horrible, but ALWAYS the day of the appt - the rash was completely gone. To have him break-out in front of the dr, just made me feel better because #1 a dr saw it happen and #2 someone else SAW IT HAPPEN! Paul and I have both seen it frequently, but when you keep telling a dr about a rash that is never there when you go to the dr, you start feeling a little crazy! She did tell me that from now on when I notice he is broken out like that, to try to get pictures. My camera does not do that close up very well (I have tried a couple of times before), but I will keep trying!

She definently thinks he is having some sort of allergy problem. I told her we had an appt with an allergist at the end of the month. She had given me the name of a Dr at Children's, but when I told her about his appt that the pediatrician referred us to, she told me that this dr was good and would be able to help us a lot. She also told me to ask her about Mastocytosis. The clinic we are going to is an allergy and immunology clinic (this would fall under immunology apparently).

She has also put him on a small dose of antihistamines for his appetite. It has been found that this antihistamine increases your appetite. She is hoping that this will get him to take more formula or at least increase the amount of calories he is getting. He takes a small dose three times a day.

We also have to go see the ENT dr about getting tubes. He has had too many ear infections and there is a definent possibility that he is not taking bottles as much because of discomfort or annoying noises (clicking noises when swallowing).

So, we have an appt on the 31st with the allergist, the 7th with the ENT dr and the 11 with the GI dr and the pediatrician (what a BAD way to spend your FIRST birthday!!).

And, this is where we are headed:
She asked me if I would be willing to learn how to do a feeding tube. There was a long (awkward) moment of silence!! I told her I would learn whatever I needed to learn to take care of him. I asked if this would be a tube down his nose (that is how it was at the hospital). She said it would. I told her that honestly at the hospital, I left the room when they did it, but if that is what has to be done, I would learn it. Her way of thinking makes sense, as much as I DON'T want to do this! If he takes 15-20 ounces through a tube at night, we would not have to be as concerned with how much he takes during the day (and he would not have to taste the nasty stuff). Still, I don't want to do it! Can you imagine...me, by MYSELF, trying to get a feeding tube down Monkey, BY MYSELF - EVERY NIGHT? I might be able to the first night or two, but I think he would have it figured out by then!

She is NOT rushing this. She is going to wait and see what we get from the other drs first. Let's hope it does not come to this.

The mystery of why Monkey is not gaining weight continues....

I am going to join Emily in a padded cell VERY soon!