The Amazing Owen
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Catching Up
It has been a while since my last update - we have been very busy lately.  Therefore we have a few things to catch up on.

Firstly, we got back the results from the biopsies that were done during all of the GI tests that I posted about a few weeks ago. All of the biopsies were normal.  There are no inflammations due to damage, no Hirschsprung's, all of the nerve cells are where they belong and there was no inflammation due to allergies.  So why does he have such bad constipation and reflux?  No clue.

So we took him down to Duke to let them have a go at figuring it out.  We didn't really find out anything new there.  That doctor bascially said that as long as the biopsies are clean, then it doesn't really matter what the cause for the constipation is - the treatment will be the same.  We could go through lots of painful and expensive testing to see if it is because of slow motility or muscles that don't quite fire in the right order or who knows what, but in the end all of those things just require you to give them a lot of laxatives.  So I guess that's what we'll do. 

He also felt that it was probably extreme to consider a Nissen surgery (where they wrap part of the stomach around the esophagus so that nothing can come back up) for the reflux since no damage is being done by the reflux. I am not certain that I buy the idea that it's not a problem to be reliving your meals over and over again all the time, but since we've now had two different doctors tell us that we should not do the surgery yet, I guess we'll take their advice for a while anyway.

I am frustrated that they couldn't come up with something more definitive, but the only thing left to do now would be to drive Owen out to the Cleveland Clinic which is the World's Best GI Clinic.  That would be a very long drive and we would have to really think about whether or not there would be enough benefit to warrant putting Owen through all those tests again.  We're going to give it some time to see how the new regimen that we have recently started with the Miralax works for the constipation.  If we can keep it under control then we will probably leave it at that.  If it continues to be a huge problem then we'll be hanging out in Ohio for a bit (Kristen would be happy about that anyway, that's Cayman's Mommy and she lives in Ohio).

In other better news Owen continues to make lots of progress in his therapy.  Since we have started doing feeding therapy every week we have seen a big difference there.  When we started he couldn't deal with a piece of food that was too big to fit in his mouth - instead of biting a piece off he would just try to cram it all in and then spit out the whole thing.  Now he will bite off a piece and chew it.  We also know that some of his constipation was due to the fact that he wasn't chewing his food well enough.  He is now happily crunching away on his food and we are just working on stamina. 

The "O Ladder" as my Dad calls the creation in my last post is really working well with Owen.  I don't have any pictures because my camera has died and I'm saving up for a new one.  I have an old one that I use to catch a few pictures here and there, but the battery only lasts for about 15 minutes so I have to really plan ahead to use it.  Anyway, the ladder has really given him a way to work up to a standing position and to easily steady himself. 

The other day I brought in a scooter that used to belong to Owen's sister.  It has been in storage for a few years and on a whim I brought it in.  It looks like this:


I tried to sit Owen on the seat and he didn't seem to want to sit down.  At first I thought it was a balance thing, but then I realized that he was trying to stand up.  He had put his hands on the hand grips and stood right up.  He then proceeded to walk halfway across the room while holding onto the handlebars!!  I was steadying him so that he didn't fall off to the side, but he just took right off!  I certainly didn't expect that!  So next I'm going to rig up one of Sammy's old walk-behind toys for him to hold on to and see what he does.

Owen has also started doing a lot more at school.  He only goes one morning a week, but many times he would just kind of sit and watch the other kids and get cranky if you tried to get him to work with any of the jobs in the classroom (it's a Montessori classroom).  The last few weeks have been much more productive however.  This week he was all over the classroom (I bring his walker) and he worked hard on the wood cylinders that you pull out of a block, on pulling pieces out of a puzzle, at talking to the fish in the fishtank, and he particularly liked the big sponge with all of the soap suds that they can squeeze.  He even made an attempt to play with another child for the first time and while a little girl was scrubbing a shelf he came over and rubbed his hands in the soap bubbles she was making. 

Finally today we went down for speech therapy in Greensboro.  This was probably our best session yet.  Owen has really started to vocalize a lot more.  The only thing that really sounds like a word is still Mom, but he gave a try at quite a few today.  When Emily (the speech therapist) brought out the duck and said "Quack Quack", Owen said "a" "a".  I've been working on saying "Uh oh!" whenever he drops something. He dropped a toy during today's session and he said "uh uh".  He also said "ah" several times with the airplane - each toy has a song that emphasizes a sound and the airplane's sound is "ah".  Owen clearly had a lot of fun at therapy today and participated much more than he has in the past.  He has also graduated to sitting up in the big boy booster seat at the table for speech therapy, rather than sitting with Mommy on the floor.  I think it has helped to have him more at eye level and for him to know that he can't just lay down and stop working. 

So it has been an exciting few weeks.  And now it's time for this Mommy to head to bed.  Good night!
Owen, Inside and Out
Before we get to the GI appointment from this morning, I thought I would share a few pictures from last week's joint therapy session with Owen's PT Nacol and his OT Vesna.  They are working together to come up strategies for increasing Owen's arm strength.  They really worked well together.  In fact it went so well that they are planning on doing a joint session every month.  I think it was definitely worthwhile:






You will also notice the student who is helping.  I am very sorry to say that I cannot remember her name, but she is currently making the rounds with Nacol and she is very nice.

OK, so on to today's GI procedures.  We are still struggling with Owen's reflux and constipation.  Thank you to all for the suggestions that we have been getting.  We did switch him to Miralax and that has been working much better than the Milk of Magnesia that he had been on.  We had hoped that the reflux would improve when the constipation did, but no such luck.  So this morning, in an effort to try and figure out why he is having all of these problems, his local GI ordered an upper endoscopy where they look down from the top to make sure that there is no damage there, a flexible sigmoidoscopy - where they put the scope up the other end to see what is happening down there, and a number of biopsies to test for nerve function, inflammation and allergies.

The procedures went well with no complications.  They put the mask over Owen's face and he grinned up at me as he went under.  30 minutes later the doctor was coming back in.  The doctor redeemed himself a bit from the last appointment (see my post from
two weeks ago) Maybe he was just having a really bad day the last time we went in.  He took the time to show me the pictures that he had taken with the endoscope.  These are the pictures taken from the upper endoscope:


Yes, those are bubbles in the picture of the fundus.  And here are the pictures from the flexible sigmoidoscopy (aka lower endoscopy):


The white stuff is just food.  He said that everything looked good, with no obvious problems, or inflammations.  He took a number of biopsies though, because sometimes the cells will show things that the eye cannot see.  However it doesn't seem that there is anything seriously wrong at this point.  We discussed the possibility of surgery for the reflux, but he wants to see about the possibility of it being an as yet undetected allergy causing it first.  I also discussed our upcoming appointment at Duke with him.  I still feel that it is very important for us to have a GI down there, because we have had GI problems the last two times that Owen was hospitalized there and it has been difficult to deal with them because his only GI was up here.  The local guy was actually pleased that we were doing this and offered to help get the results from today's tests down there as quickly as possible.

So, we wait until the results come back next week before we can really know anything.  Then the week after we go down to Duke.  And now, since we had to be at the hospital - 40 minutes away from home - at 5:45 AM, I am going to head to bed.  Good night!

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