What a Difference a Year Makes!

A year ago I was in a frenzy and beyond worried!  My son, Donovan, had stopped eating food.  He only wanted milk and nothing else.  I caved and attempted to let him eat all the "junk" food he wanted just to get calories in him and he still baulked at it all.

I could see his ribs and he was starting to look like a child living in a third world country that was malnourished.  I was frightened that I was watching my child wither away to nothing and seriously was starting to worry that I might lose him.

We went to the feeding clinic at the Cleveland Clinic with the hopes that they might be able to help us figure out what was wrong.  I know often times kids with Noonans Syndrome have difficulties with eating.  I wasn't sure if maybe this was his problem but I didn't want to sit around and wait and find out.  They did an evaluation and determined he needed to utilize the treatment they had to offer.  They began with feeding him yogurt and peaches.  He didn't want much of either because he evidently felt so crummy in his digestive system that the only "sure thing" that made him not feel yucky was milk.  For 3 months I watched my child slowly stop eating and them "bam" a complete shutdown.

I was so grateful for the scheduled endoscopy because Donovan was complaining that his belly was hurting, and he then pointed to his "throat".  All I could think of was maybe, just maybe his reflux had gotten the best of him causing damage to his esophagus.  So when the doctor came out after the endoscopy and showed us that all looked good, I felt so deflated.  I wanted a "quick" fix and it looked like we weren't going to get it.  In the pit of my stomach I felt we were traveling down the road to a G-Tube for Donovan, yet part of me was beginning to feel okay with that scenario as long as he could get some nourishment and begin to grow again, I was willing to take that step if it meant I could help him and I wouldn't lose him.

If you've read my earliest blog posts, you'll remember that Donovan ended up with a complication to the endoscopy.  He had a rare complication at the site of a biopsy in the duodenum portion of the small intestine.  He developed a hematoma in the lining of duodenum wall that blocked off his small intestine, which consequently caused him to vomit non-stop as fluid/bile was pooling in his stomach because it had no where else to go.  This vomiting continued for 36+ hours before we were able to get answers as to why this was happening.  It took quite a few x-rays of his abdominal area, and then a series of x-rays while he drank a substrate, and then finally an ultrasound.  In the radiology room, there were at least 10 medical professionals witnessing this series of events.  When his G/I doctor told us what they found and how long he'd be in the hospital (at least two weeks) we were actually relieved.  Partly because we finally knew why he was vomiting and partly because we knew he'd get medical help and finally, because I knew they'd put him on an IV and it would allow him to get the necessary nutrients he needed.  The other piece of the puzzle was that the G/I doctor also indicated that they had found some abnormal cells in the duodenum biopsy.  The abnormal cells were similar to what one would see in a person who had celiacs disease; however, his issue was "mild" and pretty much inconclusive.  My son saw almost all the doctors in the G/I practice during his 19 day stay at the Cleveland Clinic.  Many of the doctors told us to just go about our business, that it was inconclusive, this gluten issue.  The only doctor that really felt that we should consider "celiacs" was his G/I specialist.  We've put a lot of faith in this doctor and she's never steered us wrong - so gluten free we went.

Donovan during his 19 day hospital stay in February 2011.
He weighed roughly 23 lbs and was maybe 33 inches.

After we left the hospital, my son began to eat solid foods again, but on a very limited basis.  I constantly told him that we were only going to feed him gluten free foods and that it should not hurt his belly.  He caught on at a very slow but even pace.  He learned to trust me that I wouldn't intentionally force food on him that would make him feel bad.  As the weeks went by, so did his ability to trust my husband and I.  At the age of 3 1/2 he knows to ask if the food is gluten free.  He actually caught on instantly.  Which is why I'm certain that celiacs is what my son has.  The feeding clinic was quick to push behavioral therapy on him.  His issue wasn't behavioral in nature.  It began because he felt horrible and no one took him seriously so as a defense mechanism he became grossly stubborn.  Today, I don't blame him.  We sort of dropped the "therapy" the feeding clinic was pushing and just went with our gut and stepped back and let him eat the way he wanted to.  Sure as you know it, as the weeks have gone by, he has eaten much better.  Meals are much more pleasant.  As he eats and sees the rewards in "getting taller", he is happy to eat more and more.

I am so happy to share with you today that at lunch time, Donovan ate a whole grilled cheese sandwich (on gluten free bread, of course).  I gave him half of the sandwich and he asked for the other half.  This is huge progress.  Not only did he eat that, but he ate the chips and the mandarin oranges too.  I still give him pediasure (milk shake as he calls them) for the extra calories.  I am seeing him grow taller.  I'm seeing his body fill-out.  He just looks so much healthier.

He still remembers the hospital stay and will mention it, especially when we have appointments downtown at the main campus where he was for 19 days.  Instead of talking about how sick he was, we talk about the "fun" things we did while there.  Like going down to the main lobby and watching the tree on the wall change through the seasons, watch as turtles appear on the floor and dolphins appear on the wall.  We look at the picture that has "toys" and point out all of the green army men.  We keep it light!  I can tell you, I know he doesn't want to go through that again, because when I've had to threaten him to eat back in the day, I'd tell him he'll end up in the hospital again with a tube in his nose and IV's in his arms.  That would at least result in a bite or two of food!

This is a picture of Donovan in late November 2011.  Since this picture he has grown an inch! He's now at 35 1/2 inches.  He grew an inch in 1 month!

November 2011

The jury is out on the "growth spurt" but we have a theory that maybe the Advair he was on was stunting his ability to grow because of the steroids in the medicine.  Just peculiar that his growth slowed quickly shortly after starting the Advair and stopped all together several months into being on the medicine only to have him have a huge growth spurt 6 weeks after being off it.  Strange how the body works, we'll see how things go for the next several months.  If he continues to grow the pulmonologist is going to write up a case study indicating the effects Advair had on my son.  He said he witnessed this one other time, with another child who had some "undisclosed" syndrome (but it wasn't Noonans) and will need to take this into consideration for future patients who have "syndromes".

It was unfortunate that we had to go through this whole experience - the not eating, malnourishment, behavior, hematoma, 19 days in a hospital, etc.  The good that came from it though, was we eliminated gluten from his diet and he is now eating.  Maybe not eating perfectly, but it is infinitely better than a year ago.  We also found out he has a platelet function issue (hence the hematoma), something that we are glad to know about now before he needed any "heart procedure" or before he started school so that we can make sure we minimize his chances of getting seriously hurt.

As a family we've grown closer and our bond is very tight over the last year.  We realize that we all need each other.  The bond between my kids is very strong.  The love my kids have for each other is beyond description.  My husband and I learned that we had to work as a team and some days that wasn't so easy because we both are headstrong.  I grew-up quickly.

I finally feel relaxed for the first time since my son was diagnosed with Noonans Syndrome.  I still have my guard up because we do have some potential serious issues that could surface with his heart, but for now - we can finally live like a "normal" family for a change.