Jacob & Lili

Jacob & Lili

Monday, December 27, 2010

EE and the aquarium

This past week, my husbands brother was in town for a visit. We planned one day where we all would go to the Monterey Bay Aquarium, a family favorite. This would be our first all day adventure with Jacob and his new diet. I packed his own bag of goodies: strawberries, gluten free chicken nuggets, safe cookies, and fruit snacks.

We arrived at 11am and after about an hour Jacob told me he was hungry. We took a break and headed to the cafe. I sat with Jacob while Gary and Lili hit the cafe restaurant. As I pulled out his containers of food, I noticed one little boy watching. The first of many questioning stares. Jacob ate all of his berries and 1 nugget. After lunch we headed back into the aquarium. After a few more exhibits, Jacob started to feel sick. I took him to see the flamingos and then he wanted to go home. I sat with him at the entryway while we waited for Gary and Lili. In the 15 minutes that we waited, his stomach became worse and worse and his head was hurting.

We drove home as fast as we could leaving the beautiful Monterey weather behind. Once at home he had a fever for a few hours and then it was gone but the pain remained. His stomach hurt the entire weekend. It's only today that he seems to be feeling somewhat better.

He enjoyed his brief visit to the aquarium but we got a lesson in how EE will intrude into our lives uninvited.

After talking to the doctor, we have switched him back to Flovent and upped his dosage of Prevacid. In a few weeks, we go back. If there is no improvement then another scope will be scheduled, eggs will be eliminated from his diet and we hope for positive results.

In the meantime, I have found an online support group in the Bay Area for parents with children with EE. I also joined APFED and have volunteered to do grant research. At least in that small way I can feel like I'm doing something to help Jacob.

Thursday, December 23, 2010

A new diet and new medication

Last week Jacob had his back read by the doctor. As suspected the results were negative. The doctor gave us 2 possible options. 1. Keep giving him the prevacid and flovent and hope they work, or 2. change his diet and see what happens. I asked about going to Cincinnati Children's Hospital. He said they have a great program and may find something he had missed. We told him we would look into it and in the meantime we would change Jacob's diet. No more wheat, dairy, soy or nuts.

A few days later I took on the task of finding food for Jacob. I started at Whole Foods. After 20 minutes of reading label after label, I was overwhelmed and had a headache. An hour and $200.00 later we had hot dogs, gluten and dairy free desserts, tortillas, cheese, and some mac n'cheese (which was rejected, so gross). My next stop was the gluten free store we have here in town. It didn't have a whole much to offer except for these gluten free chicken nuggets that Jacob is now existing on.

We met with his GI doctor at the beginning of the week. After 2 weeks on flovent and not much improvement in Jacob's tummy aches, she has switched him to Budesonide. It's a liquid steroid for asthma is used in a nebulizer. However, for Jacob, I get to play chemist. I take 8 oz of water, mix in the budesonide and then mix in 5 packets of Splenda. Then he chugs it. We do this twice a day. After a month we go back. If his stomach hasn't improved then she said she will do another endoscopy to see if there is something else. What else could there be?

I asked the GI doctor about Cincinnati. Her thoughts, they can't do anything more than what's already been done. She said she sends kids there who are worse then Jacob. True he's not vomiting or missing school but do we have to get to that point? His stomach isn't getting better and now he's starting to not eat because his tummy hurts. He's lost 2 pounds.

This past week has been one of turmoil. I've cried I don't know how many times. And all I can do to comfort Jacob when comes to me with a hurting tummy is to hug him and tell him I know, we're trying...

Monday, December 13, 2010

Skin Prick and Patch Testing

On the 9th Jacob was used as a human pin cushion. The allergist administered the skin prick test which was negative. So on Saturday we went back in to have the food patches put on. The poor kid was in agony all weekend. The tape was irritating his skin and he ended up in our bed at night. We went today to have them taken off and the results read. I was hopeful that something would show itself. But, no. With the exception of the tape, he has no allergic reactions. The doctor will read his back once more on Wednesday but it looks like we are moving on to the elimination diet.

Over the weekend I started doing research on specialists. It looks like Cincinnati Children's Hospital has the #1 top rated EE department in the country. But the question is posed, do we drag him all the way to Ohio when we may be able to get the same care here? How do we know if we are getting the best care possible?

Friday, December 10, 2010

Day 3 after diagnosis

Today is Friday. On Tuesday Jacob's biopsy results came in. His eosinophil count is 50. Yesterday we subjected him to the skin prick test. Everything was negative. Tomorrow the food patches go on. My mommy instincts, which have always been pretty on track, tells me that it's the dairy and gluten. I'm hoping for some of confirmation with the patch testing.

We had just settled our world around the diagnosis of our daughter, Lili. She has ADHD and 2 other learning difficulties. Then came the diagnosis of Jacob with generalized anxiety disorder. He also has sensory issues and many characteristics of Asperger's. And now EE...

I've started doing the research and it's a daunting diagnosis. I go from being sad for my son to being sad for me. The full impact of what EE looks like in our home hasn't hit yet.

The Maupin's

The Maupin's