Saturday, March 13, 2010

Issac update


Many of you have been asking about Isaac's health. It would be nice if I could say that he's completely healed and we don't have to bother with it anymore. The truth is, his health problems are going to be following him for the rest of his life, to some degree.

When Isaac was born he was diagnosed with galactosemia. He does not have sufficient liver enzymes to break down galactose. Galactose is a component of lactose and is therefore found in milk products, but it is also found in other foods such as carrots and apples. Children with this disease are never allowed to ingest galactose. If they do they will suffer brain damage and many other ailments until the toxins that have built up eventuallly cause liver damage and ultimately death. Before this disease was identified, children with this would have been diagnosed "failure to thrive" and would have died with no more of a diagnosis than that.

Thankfully, Isaac has a variant of the disease called Duarte Galactosemia. In his case he has 20% of the enzyme needed to break down galactose. The treatment for this is to have a diet free of galactose for the first year of life in order to allow the liver to develop. Then, at a year he was allowed to begin eating a diet containing galactose. We had his blood tested in order to find the level of toxins produced from the galactose not being broken down. His level was .95 with the acceptable level being up to one. This is higher than they wanted to see, but they do allow any number less than one. Becuase it's on the higher end he will have his blood tested again in May to make sure that he's still doing fine. Physically, we haven't noticed any affects. He eats well and doesn't show any reactions to any food so far.


When Isaac was 3 weeks old he was diagnosed with kidney reflux (the reflux of urine back up into the kidneys). When urine is infected it can cause kidney damage. The treatment for this is a prophylactic antibiotic until he had either outgrown it or has had surgery to repair it. It will take at least three years to for him to outgrow his stage 3-4 reflux. He just had an ultrasound of his kidneys to check for damage of which there was very slight damage (which was to be expected). He'll have another ultrasound when he turns two and then at three he'll have the test to see if the reflux is still there. At that point we will consider surgery to correct it if it is still bad enough.
Because this is hereditary, Aiden and Josiah also had a kidney ultrasound to assess damage. Their kidneys looked perfectly healthy, indicating that they do not have kidney reflux, Praise the Lord!

So, despite all the things going on inside his little body, Isaac is a happy and normal little 16-month-old. He just started walking and talks constantly! We are so thankful for this little blessing in our lives!



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