Hives

Initially, it looked like Bryce had gotten a bunch of bug bites after we were at the zoo on Friday. However, by Sunday, we knew he had some kind of severe rash. Sure enough, Bryce has hives. We haven't tried any new foods or medicine lately so we know it's not that. I think he got the rash from the zoo. The zoo has a great water area where the kids can play in the sand and water. I caught him a few times drinking the water. That is what I suspect happened but don't know for sure.

To clear up the hives, he's taking benedryl four times a day. Poor guy also has a mild ear infection in his left ear. The hives could last just a few days or up to two weeks. Let's pray the benedryl clears him up quickly!

Oh, we also got an EpiPen prescribed to us. Bryce hasn't had any respiratory distress with this outbreak but hives are associated with anaphylaxis shock. Just in case, we now have an EpiPen in our lives.

Home from our Ohio Trip

Bryce and I returned from our 13-day whirlwind Ohio trip yesterday. We had a great time visiting with family and friends in Mentor, mid-Ohio and Dayton. I'll try to write more about the trip soon. Right now, I'm trying to get unpacked and ready for Reserves this weekend. Here are a few pictures from the trip!

On the airplane, going to Ohio. We borrowed a DVD player which made the trip SO much easier.

At Huntoon's house, on horse that was Nana's when she was young.

Bryce swimming at the Pleasant Hill Lake with Lisa's relatives.

Bryce playing with his cousins (Lonnie's kids).

Bryce LOVING the construction trucks at the Huntoon's.

Ohio Bound

On Saturday morning, Bryce and I are headed for Ohio! I'm excited about the trip because we get to see so many people. (We will miss Andy who is staying here to work and support our trip:)

Here's our busy schedule!
- We fly into Cleveland on July 5th. From July 5-8th, we'll be with Andy's family in Mentor.
- Then from July 9th to the morning of July 11th, we'll be at my grandma's farm visiting the Wendling's.
- From mid-day July 11th to the morning of July 15th, we'll be near Dayton (staying in Middletown) visiting Lisa's family. Lonnie and his family are coming up from TN for the weekend.
- From mid-day of July 15th until we fly out of Cleveland the morning of July 17th, we'll be back in Mentor with Andy's family.

Thankfully, my sister, Renee, is going to fly into Cleveland on July 8th and travel with us to my grandma's farm and to Dayton. It'll be great to spend time with her AND have her much needed help with Bryce.

I'd LOVE to see everyone while at all the different places but we'll just have to see how much we can cram in and still keep our sanity. Hopefully we'll be able to start traveling more in the future as Bryce gets older and we get his GI issues under control.

I probably won't post much while we are away. Can't wait to share pictures when we get back!

Medicine Update

Finally, we think the medicine MIGHT just be helping Bryce. Three doses a day seems to help take the edge off the reflux or at least a little. He isn't screaming as much and is starting to sleep a bit better (isn't thrashing around as much but still wakes up often). Even once we started the tablet form of the Baclofen, Bryce had diarrhea (even with some blood) and was showing his normal intolerant signs of crankiness and coughing/choking. I thought for sure we were going to have to take him off the Baclofen.

Then we realized that we also started giving Bryce baby food carrots so he could take the tablet form of Baclofen. If he wanted more of the carrots when we gave him the medicine, I'd let him eat up to a 1/2 jar. So, we decided it might be the carrots causing the diarrhea (or at least we changed two variables at once so we weren't sure). So we cut back on the carrots and are giving him just enough to take the medicine. Good news is that the diarrhea has started to subside! Unfortunately,the rash on his tummy and chest remain but I'm praying it subsides soon also.

Keep praying and sending us those good vibes that the Baclofen will work!

Airplane Park

In the evenings, we've been walking to the Airplane Park here on base. There are about 4 planes that Bryce gets to touch, climb on and inspect. He LOVES it.

Bryce does seem to be all boy right now. It started with wheels and the vacuum cleaner before he was a year old. Now it's planes, trains and buses. He also goes crazy for bicycles, construction trucks and motorcycles. The latest is watching people play sports. On our way back from the park, we pass the tennis courts and a baseball field. Oh boy. . .if people are playing, these are exciting things! We've been stopping to watch the baseball lately. . .Bryce loves to run commentary when people hit the ball. It's hilarious.

Developmental Pediatrics

On Wednesday, we saw a pediatrician that specializes in evaluating children and determining if they are developing normally. It was about an hour appointment where the doctor evaluated Bryces's physical, language, intellectual, social, and emotional development. Just as we suspected, Bryce is developing 100% normally right now. He said Bryce was a real pleasure to evaluate since he's very social and interactive.

The only thing that we need to monitor is Bryce's speech. Right now, he is only saying about 3 words so if there isn't more progress by his 18-month well visit, then he may need speech therapy. But then again, Bryce may just surprise us like he did his walking--a little late but then all at once!

One Step Forward, Two Steps Back

It's been one heck of a week since we started Bryce on the new medicine, Baclofen, to help his functional esophagitis. We started it last Saturday (Jun 14) and for two days he slept better and appeared to be in a lot less pain. It is has been the only thing we've EVER tried that has actually helped Bryce (there's been many medicine and formula changes over the past year). Andy and I were sooo hopeful.

Then Monday morning came. He woke up in pain and had a rash all over his body. Of course, I assumed it was the Baclofen. I couldn't get a hold of his GI doc but his pediatrician squeezed Bryce in Monday afternoon. Dr. Simone said the rash looked more like a viral infection then an allergic reaction but wasn't positive. So, we decided to keep Bryce on the Baclofen.

By Friday morning, the rash was still there and he had vomited three separate times. He was miserable. After speaking to his pediatrician, she said we could always take him off the medicine and try it again later. If the rash appeared later, then we would know for sure it was the medicine.

However, Friday night Bryce was in extreme pain, crying almost constantly. We knew the Baclofen would at least take the edge off. I had Reserves over the weekend and we needed some relief. So, back on the Baclofen he went Friday night. The redness of the rash had gone down but the bumps and rough skin remained.

During the Reserve weekend, we kept Bryce on the medicine and somehow we all survived despite very little sleep.

By Sunday afternoon, it became obvious that Bryce and the new medicine were not agreeing. After a week of the medicine, he was having his normal intolerant signs of irritability, very little sleep and diarrhea. We knew we had to take him off the Baclofen.

On Monday (Jun 23), we took him off the medicine again. By Monday night, he was cranky and not sleeping despite trying all of our tricks including a car ride, walking him in his carrier, going for a walk in the neighborhood - nothing. Finally at midnight, he fell asleep for 45 minutes. When he woke up, he woke up SCREAMING. Bryce was in more pain then he has been in his entire 16-month life. There was absolutely nothing Andy or I could do to calm him. We were scared. He was shaking, screaming and it looked like he was going to go into respiratory distress if he didn't calm down soon. We knew the Baclofen might help. Within 20 minutes of giving him the medicine, he calmed down and finally fell asleep.

We believe that Bryce is intolerant of the sugar in the oral suspension that the Baclofen comes in for kids. He has a history of not being able to tolerant things with a high fructose level including pears, apples and all oral medicines. Today, I finally got a hold of his GI doc and he prescribed us a tablet of Baclofen that we'll be able to crush and give Bryce in some baby-food carrots.

Tonight, we started the tablet form of the Baclofen and you could see he felt better within a few hours. By 8PM, Bryce was asleep. Andy and I were actually able to eat dinner together. We hope and pray that Bryce is able to tolerate the tablet-form of Baclofen. As always, only time will tell.

One step forward, two steps back!

Date for Cinci Children's!

Bryce will be seen at Cincinnati Children's Hospital from Sep 28 to Oct 3rd in their Eosinophilic Center. Although it is still a few months from now, I'm soo thankful to have a date to look forward to. There is a small chance that we could be seen sooner since we're on their cancellation list but right now, it's the end of September.

Here is what our week will look like:

Sunday, Sep 28 - Must arrive by noon to begin preparations for scopes
Monday, Sep 29 - Endoscopy/colonoscopy at 2 PM
Tuesday, Sep 30 - Allergy Testing. Meet with the social worker in afternoon
Wednesday, Oct 1 - Eosinophilic Education Program and Lab Tour
Thursday, Oct 2 - Meet with doctor to discuss scope results & plan of action. Also meet with dietary management and speech terapist
Friday, Oct 3 - Read results of patch testing

Sounds like it will be a busy but hopefully productive week. At least we'll be in Ohio so hopefully we can see family and friends.

Father's Day

For Father's Day, I let Andy pick whatever he wanted to do. He decided to work on the boat for about 3 hours. The sun and heat finally made him call it quits for the day.

As some of you probably know, we have a 1975 sailboat that Andy's been refurbishing. We use to sail it when we lived in KS but that was BC (before child). Since we've been in Texas, I've either been pregnant or we had baby Bryce consuming our lives. Now, though, Bryce is starting to get a little older and we've moved on base so the boat is just a few minutes away. Andy hopes to start spending more time working on the boat over the next year. However, it is a refurbishing project, so it'll take time and lots of TLC.

Bryce GI Update

This past week was full of doctor visits it seems.

GI Doctor Visit
This week, we met with Bryce's current GI doc, Dr. Noel. After 49 days, Dr. Noel finally explained the results of the gastric reflux test where Bryce had a probe in his esophagus for 24 hours, measuring reflux episodes. The report reads "75% of the perceived pain episodes are associated with movement of fluid/food through the esophagus and that most of that is antegrade movement (swallowing). This finding may support a functional esophagitis as a possible contributing factor to his pain. " Basically, Bryce is having pain associated with swallowing for some reason.

How do we treat functional esophagitis you may ask? In teens and adults, they are using medicines such as tricyclics and selective serotonin reuptake inhibitors in very low doses, to relieve esophageal pain. Dr. Noel said that it works great. But Bryce is 16 months old. Dr. Noel found some studies where kids were 5 years old and took these medicines but absolutely no literature giving children under 3 these medicines. First, most children this young can not explain their symptoms and second, the impedance probe that we did is new among children and adults. Hence the reason, there are no trials of these medicines with children as young as Bryce.

It is great that we at least know one thing contributing to Bryce's discomfort but the question still remained, how to treat his functional esophagitis? Dr. Noel talked to colleagues and came up with a drug named Baclofen that is mostly used in cerebral palsy children to treat muscle spasms. I found one study that has tested Baclofen on 30 children with reflux and it worked to reduce the amount of reflux episodes. Initially, I was really worried about the side effects. But Dr. Noel thinks the 2 ml that he is getting a day won't be enough to have side effects. The study I read had very little side effects also.

Finally, yesterday morning, we decided to start the Baclofen. Believe it or not, yesterday, he took a 5-hour nap!! He still woke up every 45 minutes but he didn't thrash around nearly as much and was able to push through the reflux and stay asleep with the assistance of a bottle. This has NEVER happened before. Last night, he still woke up frequently but things weren't as intense--not as much crying and he went back to sleep quicker. This afternoon, he took a 3 hour and 20 minute nap (again, with some assistance but still. . . .3 hours!!!).

I certainly don't think Baclofen is THE miracle but if it takes the edge off things for Bryce and he is able to sleep a little more, all of our lives would be much improved. Say a prayer for us. We still have to make sure he isn't intolerant to this medicine. We'll only know that after about a week.

Nutritionist
On Tuesday, I met with the behavioral psychologist and nutritionist to map out a plan to get Bryce eating some solids. It was a new nutritionist and she was smart and resourceful! She took into account his eosinophils and fructose malabsorption issues. Next foods to try are gluten-free oats and then potatoes. Of course, we have to introduce one thing to Bryce at a time to make sure he isn't intolerant and right now, it's the new medicine so the oats still have to wait.

Cincinnati Children's Update
We are still pursuing getting Bryce to the gut experts at Cinci. The intake nurse from the Eosinophilic Clinic contacted me about 10 days ago and went over Bryce's entire medical history. The intake nurse also had his medical records and biopsy slides from his 4 scopes done. Since then, I have learned through our case manager, that Cinci wants authorization from our insurance to do an endoscopy, colonoscopy, allergy evaluation, skin and patch testing and dietary evaluation. Once Cinci has the insurance authorization, we'll be scheduled for a week-long visit at Cinci to complete all of the tests. Right now, sounds like it may be October before we can get into Cinci. I can't wait for an actual date!

I don't normally take pictures of Bryce when he is upset. But I couldn't resist documenting the discomfort he was in the other night. Let's hope and pray that we are on our way to finding him relief!