Monday, November 21, 2011

Its been a long time since I last posted....

It's been awhile since I've been able to post. Here is the rest of his diagnosing story in a short version up to recently, which deseves a whole new post!

After we got the dehydration and the ear infection under control, his pediatrician sent us to an amazing nutritionist. Based upon what we had found helped Peyton through food logs, the nutritionist and the the pediatrician came to the conclusion that is Fructose Malabsorption. They sent us to a GI to attempt to confirm this and to also make sure there was nothing else going on.

That first appointment was awful with the GI doc. When we left I wanted to never go back. He clearly was not listening to anything Mark or I had to say. He only heard one thing, and spent the entire appointment going on and on about toddlers diarrhea.

The Second appointment went much better, the GI listened, and realized that it was not toddlers diarrhea and was on the same thought as the nutritionist and the pediatrician. From there he wanted us to do a food trial in 3 months and follow up with him. Depending on how Peyton reacted, was going to determine if we continued on the way we were, do an endoscopy, or if Peyton had outgrown anything.

We learned during the trials that he still had the same problems, however he had a more severe reaction to some certain foods that were before lumped in with the general "fructose" category. With this follow up after his food trials, we once again left with mixed signals. On one hand yes he reacted, so avoid those foods, on the other hand they were not certain as to if it is food protein or allergy. So he wants to see Peyton in 3 months again, and also to go back to the allergist after he turns two. The GI also did not want to do any invasive procedures on Peyton at the time since no matter what the results showed, we would still be doing the same thing after, food avoidance.

Tuesday, July 12, 2011

Peyton is getting worse, what is it?!?! (February)

Now that we realized that Peyton was really sick it was time for us to call his pediatrician (whom we love, by the way). His Pediatrician was out that week, so we saw another ped in the office on a Wednesday. He was convinced that it was a stomach bug, but wanted to run stool samples for parasites and bacterial infections since Peyton had not had a fever associated with any of this.

After his appointment, we took him back to Lisa for daycare the rest of the day. She was so gracious to help us if Peyton pooped! She got lucky that day with the poop! But Peyton did vomit while there that day. That night he only got worse. Every time he ate or had some Pedialyte he would get sick. He didn't sleep well either. We were up with him all night.

Thursday while at Lisa's he got sick again and started to spike a fever. She was able to get some poop for me! So I called the peds office and they wanted to see him that day with the new added symptoms. We saw yet another ped in the office who was wonderful. She checked him over, ran a strep test, looked for ear infection. Everything she could think of. She came up empty on everything so she figured that on top of the other problems he now also had a flu bug.

The next 24hrs was awful. I had to give him one teaspoon of Pedialyte every 15 min. and monitor is fever, and he would not sleep, and just wanted to be held. The doctor called on Friday to see how he was doing. She let me know that if he still had a fever and/or throwing up Saturday to take him to urgent care.

We didn't make it to Saturday. Two hours after he went to bed, 10:30 he woke up screaming. He had spiked a temp again, this time up to 105, and was puking. Lucky me also got a call from my mother at this time as well. Her dog Cassie would not come in the house and she was worried, was there any way I could get the kids in the car (Mark was at work, I was by myself with the kiddos) and help her get the dog in. In theory it was perfect, I could drop Carter off with Grammy, get the dog in and take Peyton to the ER. So I call Mark, he is able to leave work, yet it would take him about an hour to hour and a half to get back to the station and then to the hospital.

I loaded the boys up, headed to my mom's, both boys were awake the 15 min. it took to get there. When I pulled in the drive, Cassie heard me and wanted to come in. So one goal accomplished. Got Carter out of the car, figured he'd go back to sleep, nope! He started hysterically crying to the point of throwing up all over Grammy's sofa. Had to change him, luckily I had extra PJ's in the car. Decided it was best to just take Carter with us to the ER since Mark was going to be there too.

By the time we got to the ER, Peyton was acting like nothing was wrong. He still had a little fever though. It was determined he was dehydrated and also had an ear infection. They got him hydrated and a good dose of meds in him for the ear and he slept the rest of the night (got home at about 2).

Monday, June 6, 2011

Reflections on When it Really Started

January, when Peyton turned one, everything really started to get bad. Due to his milk and rice "sensitivities", his pediatrician recommended that we see the pediatric allergist before completely weening him from the formula to make sure there was no other foods that he had allergies to. The only one that came back positive was the rice, and he only was reactive on the skin with that, not in the blood tests. So the allergist diagnosed him with the FPIES, trigger foods milk and rice. With that his pediatrician told us to go ahead and start weening him to soy milk, and then when we could try getting him off his reflux meds.
Peyton on his First Birthday (Jan. 19th)

WARNING: Graphic discussion on Peyton poop!
Around this time, he started to have stools that were looser than usual. The more food we introduced, the more food he ate, the less formula he had, he went from 4 loose stools to 8, and then to 8 diarrhea per day. The diarrhea was not normal. It was like water with mucous and chunks of food in it. It smelled like the most rancid, sulfuric stench that you have ever smelled (you could be in the living room and him in the family room and know that he had just pooped). He had no fever. He didn't fuss much. He slowly began to get irritable, his legs were stiff and he would clench them up against his body when we held him. He was clingy. He started to go into almost like a fog. He would observe, but not interact as much as he used to. He became clumsy, regressed back to his "ohh's and ahh's" instead of the da, ma and ba sounds he had been doing so well on. He didn't smile as much. He just wasn't Peyton.

The problem was as his mommy and daddy, we were with him everyday and we just didn't see all of this all together and were so focused on the diarrhea. We couldn't even see the dramatic weight loss, the pale skin, the circles under his eyes.

Peyton in February (Feb. 3rd)
One Friday night in February, about three weeks after the diarrhea went up to 8 times a day, Meghan was at the women's candlelight dinner at our church with Peyton's aunt Julie and Grammy. Both of them made comments to her about how Peyton looked like he was loosing a lot of weight, his eyes had circles under them, he was pale, and just didn't look healthy. After they said this, Meghan took a good look at him and sure enough, even though we see him everyday, we didn't see how sick he really was until then.

 Peyton on March 10th 

Wednesday, May 18, 2011

In the Begining: First Year

Peyton was born two weeks early, and we should have know that how he began life would be an indicator of what was to come with our little Mr. Trouble. He loved to eat, still does, he could not get enough food. We ended up supplementing with a milk based formula.  When we were supplementing he started to have horrific gas, projectile spit-up, constant diarrhea, fussiness, didn't want to lay down, and really bad eczema.  His Pediatrician recommended he might have an issue with lactose so we switch him to a soy based formula. This made a huge difference with the gas and the diarrhea. Although, he was still having major issues with the spiting up, and was diagnosed with reflux. After we started the Zantac he still spit up, but not as much (a tablespoon instead of 1/4 cup). Things were somewhat calm until he reached 4 months and he was ready to try some table food.

Like every other parent out there, we got rice cereal for him to try. The least allergenic food, that's why we all start our kids on it, right? Wrong! He had a rash all over his body, huge resurgence of eczema, beyond bad constipation (didn't poop for 7-10 days). We consulted with his pediatrician, and they suggested, as rare as it is, take him off the rice, switch to barley and see what happens. Within a few days of stopping the rice, his rash went away, the eczema cleared up, and we were back to normal baby poop. The barley seemed to be much better.

When we started on the fruits and vegetables, boy was he really in heaven!!! He could not get enough! At the time, we didn't think much of his poop. It seemed normal for him to poop four times a day, sometimes diarrhea, and sometimes not. He didn't fuss much, was really clingy though. He was very happy, yet quiet.

Thinking back on that first year, all the signs were there that there was still a problem. But since Peyton appeared to be happy, was growing, gaining some weight (he was just starting to slide off his weight chart), we just chalked it up to "other things" - all kids develop at different paces, he's a mama's boy, he didn't have enough barley for the poop to be solid, etc., etc....

Around his first birthday was when things really ramped up. The mommy and daddy instincts kicked in and we started to realize that there was more going on than just the FPIES with milk and rice. Not once did we ever think Peyton would end up in this world of FPIES (Food Protein Induced Enterocolitis Syndrome) and Fructose Malabsorption.