Thursday, August 18

Catching up! :)

Let's start with today and go backward... LOL

Today is the very first day that I have nothing on the agenda that I have to do for someone else, aside from the "normal" stuff of keeping up with kids and house.  No appointments, no kids home during the day (well, until 12:15 when Lynae gets out anyway), and nothing calling me out of the house!

Yesterday was a great day!  I was able to do something for ME!  I went to the first day of a Bible study at our church.  It's a Beth Moore study called David, Seeking a heart like His.  The first day was great, and I'm looking forward to the next 10 weeks as we'll go deeper in to the life of David and apply the Biblical principles to our own lives.  This is only the second women's study I've been a part of in the last ten years, since I've always had other responsibilities which wouldn't allow me to commit to a long term study.  Yay!  Kristopher enjoyed going to youth group since Park Ave just started back up after a summer break.  He's excited :)

Tuesday I had 90 minutes alone too, it's weird having the kids in school!  I went to Target and picked up more shorts for the girls, since Emma has scooted through the bottoms of most of hers.  Then it was off to pick James up from school.  Before I get in and explain that, Kristopher also started Karate.  We've talked about having him take karate for a while, but hadn't had all the right timing.  He started and really enjoyed it.

Ok, back to James.  He had an appointment with the GI doctor to follow up from all the tests he had done just a couple months ago.

Here's the results:  EGD: Normal.  Motility study: Normal.  Upper GI: Normal
Of course a few did say he has reflux...

And then, the after effects:  The doctor took James off of EryPed, which is an antibiotic that helps with motility.  He'd been on it for just over a year, since right before moving in with us last May.  James' throwing up was EXACTLY like the effects of slow motility!  But when the studies began coming back normal, he was taken off of it.  (Oh, and since he'd had Salmonella last August, we couldn't do these studies until it had been at least 7-8 months past the time he had it so we couldn't blame it on the Salmonella being in his system still).

So, finally some answers-- though they didn't exactly solve anything.

And about 4 days after coming off the EryPed, his occasional vomiting episodes and frequent spit up changed.  He still was 'urping' up little bits of spit-up during the day, but every night after (or sometimes during) dinner he was throwing up his entire meal.  The GI doctor also upped the amount of Pediasure he wanted James to have, so instead of 4-5 cans, he was supposed to get 5 cans daily.  This meant that we were trying to tube-feed James if he didn't get in the 5 cans, and we went from not using his mini button (gtube) for a YEAR except for an occasional fluid when he was actually sick, to tube feeding every night before bed.

This went on for about 23 days straight.  Let me just say, I hate vomit! :)  It got to where we would just have James sit at the table a few extra minutes after dinner so he could throw up in a place that was relatively easy to clean it up form, then we'd give him a bath.  Then, he'd go back and play for a bit, we'd put all the other kids in bed, tube feed him- often Pedialite instead of Pediasure just so he'd be hydrated, wait to see if he was going to throw that up, then give him another bath, and put him to bed... figuring that he just wasn't going to keep it down.

We tried changing the schedule we were feeding in, changing bath times (in case that was stressful and inducing his throwing up), and doing anything else we could think of to help.  Nothing changed.

At day 24, I decided I was done.  There was no way that this was working.  He wasn't getting the calories that he had been getting even a few months prior.  I looked up everything to do with the EryPed and couldn't find anything to suggest that taking him off of it had anything to do with his throwing up.

At the same time, we were dealing with majorly hyperactive behavior from James.  At his 5 year physical, our pediatrician, when I brought up the idea of starting Ginkgo Biloba for James, asked if we'd like to be referred to a behaviorist so we could talk about other "medications for his behavior".  I've had 4 and 5 year olds a few times, and I have to say that James is exceptionally more active than any of the rest of them :).  That said, he's only just turned 5.  He's in preschool.  I don't want to use psychotropic medications to help him until I've exhausted all of our other options with behavior.

Then, I began reading about Pediasure.

I read the ingredient list.  I saw the second ingredient, Sugar.  And, with that he came off of Pediasure.

He was throwing it up constantly, he wasn't getting the calories that were needed, but he WAS getting a ton of sugar.  His behavior needed changes, and the summer time was when I could see whether changes we were making would really make a difference or not.

So, off Pediasure he came.  It was August 4th, and he has made a 180 as far as his daily vomiting AND reflux goes!  He had milk (yogurt) in ONE smoothie drink that I made him, and that night he threw up.  He had a different cup (and coughed a bit drinking) at school this week and spit up about a quarter size amount.  Other than those two episodes, he has not refluxed AT ALL since taking him off Pediasure!

Tuesday at the GI appointment his doctor said that he never has to have milk again.  Though Pediasure is LACTOSE free, it is NOT MILK FREE.  It has Milk Protein Concentrate, which is also known as CASEIN.  Often times people hear of "gluten-free, casein-free" diets.  Though we'd checked James for celiac, he's not been tested for other allergies.

Now, we have the answer!  James is allergic to casein!  GREAT news, because he may be able to progress with his eating now!!!

Not only that, but today I spoke with James' teachers and the aide in the room was with him last year.  I'd noticed a change at home, but I asked her as well... Has she noticed he's much CALMER??  YES!

It's like we have a different child in our house!  He's still the same little ornery kiddo at times, and we have a lot of work cut out for us to get him to follow directions, etc still LOL. BUT.  He is able to sit still, participate in activities, pay attention to what is going on around him and not just GO GO GO all the time.  He's not throwing up, he's happier, and all over, he is doing GREAT!

I'm so excited for James, and so happy for all of our family that this 'change' was what he needed.

Someone asked what James is eating now.  He's getting "smoothies" at every meal, and is also beginning to eat small amounts of 'regular' food, such as cereal bars, crackers, and other foods.  In his smoothies, we are using soy milk, coconut milk, extra virgin olive oil (for calories), rice protein powder, and a mixture of fruits and vegetables that we would give him if he was eating everything 'normally'.  In order to make it more realistic to make 3 smoothies a day (Wesley is also on a blended diet, but with more regular foods), we're using some stage 3 baby foods instead of fresh vegetables and fruits.  We've also used canned pumpkin and applesauce, fresh bananas, and even peanut butter.

Ok, this is now a super long post, but that's the update, catching up on us!  We are all doing great and getting in to the new routines of school!

3 comments:

  1. Hello,
    I'm one of those people who read your blog but never comment, until now.

    I have a J-tube and use a natural foods product called Vega for feeds. It's thick so it's can't go through a pump, but it can be syringed in slowly.Nutritionally it's one of the best products out there, without chemicals,common allergens and has 100% of daily recommended intake of vitamins and minerals.

    I'm not trying to sell anyone into anything, I just want to let you know what's around out there, that not many doctors or nutritionists know about. It's been a great product for me, and I "eat" far better in terms of vitamins than anyone I know. Since getting my tube put in, and using the Vega everyone keeps telling me how good I'm looking.

    Just a thought perhaps...I hope James is feeling better soon.

    //myvega.com/products/whole-food-health-optimizer/features-benefits

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  2. that's great! that you figured it out, and that he's doing so much better!

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  3. I love your blog. I don't know how I found you but you seem like such a nice person and I love the energy you have for all your kids. I just want to let you know that my 7 year old spent the whole year between 4 and 5 with a stomach ache and throwing up every few days. She's always been small and we went through some years of weighing her every month, so I was supplementing her regular diet with a can of pediasure every morning for breakfast. We finally figured out the pediasure was causing the stomach pain and vomiting. BUT we did all the tests and she is not allergic to milk. We took her off all dairy for one full year and after that have been able to go back to a regular diet with absolutely no problems. We just don't use pediasure any more.

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