Friday, 29 April 2016


Road trip to the hospital
We have been so lucky with Felix's health and not a day goes by when I don't think about how thankful I am that he doesn't have a lot of the medical issues often associated with Down syndrome. Fifty percent of babies with Down syndrome are born with a heart condition. Many have respiratory or bowel issues to varying degrees. Hearing and vision can be affected, there is a higher risk of leukemia, and other medical conditions too numerous to mention. That pesky extra chromosome is responsible for wreaking havoc in the precious bodies of our loved ones. That being said, with modern medicine, supplementation programs and early intervention, the life expectancy of a person with Down syndrome is now 65 years old! Only 30 years ago life expectancy was less than 30 years old. Amazing hey?

Felix only has two ongoing health issues. Croup, which likes to rear it's ugly head in winter, and some bowel issues which we're still trying to get on top of. I don't usually go into a lot of detail about his medical issues, but I've had so many people asking how things went at the Gastroenterologist and Dietician yesterday that I thought it was easiest just to blog about it. Poo story to follow......
That face <3

Felix's diet has a very delicate balance. As mentioned before, he has malabsorption of all of his sugars, including natural sugars in fruit and vegetables, and the lactose in dairy products. He also has a bacterial overgrowth in his bowel that has been treated a couple of times, but doesn't seem to go away. If he eats any sugar, the result is an overactive bowel which, without too much gory detail, means he spends a lot of time in the bath, sometimes several times a day. He also has a gluten intolerance. If he eats gluten; bread, pasta etc, it has the opposite effect and he gets completely blocked up. Last year, he was so blocked up, he didn't use his bowel for 8 days. He had foecal breath and wasn't responding to even large doses of laxatives. He was incredibly distressed and in a lot of pain. It was a horrible time.

Writing some words in the
waiting room
For the past twelve months, we have worked out how to keep his diet very simple and, as a result, his bowel has been somewhat normal (at least compared to how it was before). The problem is that, due to very limited fruit and vegetables; the only fruit he could have was lemons, limes and avocado, and his vegetables were limited to white potato and a couple of other things which weren't terribly appetising to a little person. As you can imagine, we weren't able to get him to each much of any of those things. Thank goodness for multivitamins!!

Yesterday we went to see the Gastroenterologist first. He explained that, as we suspected, we still hadn't given Felix enough gluten for them to get an accurate result on the coeliac blood test. He has suggested Felix eat gluten regularly for the next 4 months and then have another blood test. Alarm bells went off immediately in my head because I know what happens when Felix eats gluten and I don't want him to be uncomfortable and/or in pain for the next 4 months. He suggested that we give Felix daily laxatives to counteract the gluten. He said that, depending on the next lot of blood results, Felix may have to have an endoscopy and biopsy of his bowel under general anaesthetic to find out exactly what's going on. I know it's not a massive surgery compared to what a lot of parents see their kids go through but, he's already had about 6 generals since he was born, so I'm not in a rush to put him under again. It never gets easier and there are risks involved with any surgery. Sigh!

Strapped in for the 200km drive
Our second appointment was with the Dietician. The good news is that she wants us to introduce a few more things back into Felix's diet; cucumber, carrot, zucchini, mushroom and spinach. She even said he could try pureed apple if I added glucose (glucose counteracts the effect of the fructose...this bowel thing is like a science!) She has given me a chart and said that I can play around with the fruits and vegetables with the lowest fructose levels and see how we go. It is going to make cooking so much easier! She is a little concerned about the addition of the gluten to his diet and advised me to call the hospital if I'm worried about his bowel at any time.

I know a lot of parents will agree that, when you see a whole bunch of different specialists, it can be really confusing. They won't always be on the same page and you often need to get second opinions or just trust your own instincts. Special needs parenting is a complex business. You tend to become an expert on your own child's medical issues. You spend hours researching, making phone calls, sitting in waiting rooms and advocating on behalf of your child. It can be exhausting, but is also incredibly rewarding when you see your hard work pay off. The next few months are going to be challenging but, one step in front of the other, right?

*Special mention to those who have messaged to check on the little guy... your messages always warm my heart!

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