Friday, November 5, 2010

The Good News and the Bad News.

The good news is that Lola's colonoscopy went well(aside from the usual iv trauma lasting about an hour) and everything came back normal. The bad news is that we got no answers and she is having a rough time again. We ruled out some other possible problems so we are back to our FPIES diagnosis and her just having a delayed reaction.
We are having to take some big steps back and that's always hard to do. We haven't tried an "new" foods and she is having regular reactions to something. Not only that but they are delayed reactions, so that makes it even more difficult to pinpoint the offending food. We are back to charting every food/drink intake as well as the lovely, I will say, diaper chart and regular stool studies.
We are also going forward with the Atopy Patch Testing. We will be scheduling that next week. At least it's a non-invasive test for once. I am hoping she has a better day tomorrow than today and a better week than last. She is a trooper though, she really is.

Monday, October 18, 2010

Long Overdue Update

You know how you get a little behind on something, and so you kind of avoid trying to catch up? Then you wait so long the thought of trying to catch up gets overwhelming? Yeah, that's pretty much what happened here. Sorry! Well that and going back to school has taken over a lot of my time and energy.
So for the most part Lola has been doing well. She had her 2nd Birthday and got to CAKE!! Well, special cake, but none the less cake! We have "setbacks" once and a while but nothing major. They seemed to happen about once every other month or so until recently. Now she is having GI issues more frequently. So tomorrow morning she is scheduled for a full colonoscopy. She has had plenty of endoscopies, and a flexible sigmoidoscopy but her GI feels at this point the full colonoscopy is necessary. He will take biopsies throughout and remove any possible polyps. It's another procedure where I hope they find nothing but then I also hope they find something, you know, an answer. But I would just like it to be a small answer with an easy cure. Not too much to ask for, right? So here we are at breakfast, her last meal. Today will be the hardest part, the prep. No food, clear liquids and then of course the dreaded enima tonight. I just made 4 different flavors of jello for her and I am hoping she will try them this time. Last time she wanted nothing to do with jello.
As usual, thoughts and prayers are appreciated for tomorrows procedure. And I promise to update after. I also wanted to know if any other FPIES children have dealt with Intussusception? They thought Lola may have dealt with this in the past, but I am not sure. Just wondered about a possible link.

Stephy

Sunday, May 2, 2010

Another Day, Another Medicine Recall

I have had a couple people ask me to post this, so here it is. This includes every children's medicine we had in our house. So scary. Any not to mention, this stuff isn't cheap. We had to get rid of about 50 bucks worth of meds. Between this and all of the daily crib recalls, I don't feel like I can trust anything anymore!


Saturday, May 1, 2010

Lola's Allergist Apt


We went to the Allergist last Thursday and it went very well. Lola is finally catching up as far as weight goes. Height is another story. She is extremely petite. She is about to be 2 years old and she wears size 6-9 month shoes. But that's okay because she is thriving very well!
We went ahead and did some SPTs. She was tested for Orange, Strawberry, Cantaloupe, Tomato, Watermelon, Rice and Chocolate. She passed all of them!! The rice I had to fight for since she failed it once but it was barely a fail and I have a good feeling it will be fine. It will also be a huge relief since it's in soo many foods. They suggested doing an in-office challenge with the rice but I told them I felt comfortable doing it at home and she gave me her permission to do so. It's much easier with Lola at home where she is comfortable and her reactions tend to be so delayed that we would probably be home from the office if it was going to happen anyway. So we keep the Epi-pens handy and watch her like a hawk.
Now the chocolate was a great one also, but keep in mind that it can't be any milk-chocolate products. We learned that was a fail during the kit-kat bar incident.
She also had an apt with her nutritionist this week and that went well also. We are moving closer to being able to take her off of formula. She is very happy with Lola's diet at his point so we are giving her less formula but still a little each day.
We are starting with a teaspoon of rice today, so wish us luck!
So obviously Lola is doing well and things were going smoothly UNTIL, my very healthy, non-allergic kid had a allergic reaction that landed him in the ER. What?? He came home from school, started complaining his feet hurt, so I took a look at them, and they were very swollen. I couldn't find a bite or anything though. Next I take of his shirt to find his whole body is getting covered in hives. They were just appearing before my eyes. His feet,ankles and lower calves got so swollen that he couldn't even walk. I gave him benadryl and it helped the hives some but not the swelling. Brought him to the ER to confirm and it was a bad allergic reaction. It happened so fast I was soo happy to have been carrying Lola's Epi-pens just in case. Great piece of mind, and luckily it never came to that. I have no clue what he reacted to. I can't think of anything different from his everyday routine. Just hoping it was a one time thing! And of course I find out today that the Benadryl I gave him was recalled, ugh.

Saturday, February 20, 2010

Wrappers are No Match for Lola


I have to say that we have done pretty good with keeping food on the table, and no crumbs on the floor. But with a 3 year old, that's TOUGH, to say the least. He understands that he can not share his food, or eat anywhere but the table. He knows Lola could get sick if she got the wrong food. But I guess this is a reminder that you can't expect perfection from a 3 year old. But I also blame myself for this mistake. Noah had a bag of Valentines candy that he dumped on the living room floor to show us. I made him pick it up, but I guess I didn't check around good enough. A day later, I spotted Lola with this in her mouth. My heart sank. I was also shocked she ate right through the wrapper! Not sure why, but I was. It wasn't much but it was enough for her to react. She had her typical GI reaction but then she got a few hives. I cringe when I say the word hives. Hives are new to us, and honestly, they scare the heck out of me. She only got a few scattered on her, and didn't get worse. I can only assume it was the milk in the Kit-Kat. We have not dared trial Milk yet and I have always had a bad feeling about it. It's definitely a scary thing knowing reactions can get worse each time. I had her epi-pen ready to go that day. I am soo thankful we didn't have to use it. My son also ended up in the ER that night with pneumonia. It was a tough Mommy day, but we got through it!

Corn Muffins-Fail




Lola passed corn, so I was super excited to make her a safe(or so I thought) corn muffin. I gave it to her and she LOVED it! She was so happy. A few hours later she had a GI reaction. We still aren't sure why exactly. Her Allergist said she can only assume there was some sort of cross-contamination in the mix. Bummer. It was upsetting knowing I gave her something that made her react. The Allergist was very reassuring. Unfortunately at this point, we are at a "trail foods" for everything. We still avoid top Allergens but Lola seems to have reactions to this that aren't "ordinary". So she gets better and we move on.

My Little Lady is 18 months!!

Where has the time gone? I feel so very blessed to say that Lola is 18 months and doing great! She is a bit behind on some things, but that's to be expected after such a rough start. She will be evaluated in a few days to see if she would benefit from some therapy. At her 18 month well being check, she was not walking and had no words. But about a week after her apt., she finally started walking! I am so proud. Still no words, but that will come. She is sweet and she is sassy! She loves playing with her big brother these days. Well playing, fighting, whatever. Happy 18 months Lola! You have come a long way!