There's an extremely valuable fan page groups on Facebook that has enabled many Stickler Syndrome families to connect with and bounce off of each other similarities and differences between health, symptoms, resources on what helps others, and such.
One of the recent health criteria that many of the families have been discussing is low iron levels. For kids and actual adults diagnosed with Stickler Syndrome. There has been 4 other mothers now who have said either that themselves and/or their kids have had extreme low Iron levels. Colins has been around 10 which I believe you want it around 4. No matter the supplements or diet changes his levels wouldn't change until he was around 2 years of age. He still has low iron levels. I'm not sure why this is or what causes this but it appears to be more common among Type 1 Stickler Syndrome patients. There is 5 common types of Stickler Genes that give a random variety of symptoms [one being perfect vision but abnormal Astigmatism present which is what Logan has] and the more further back in generations Stickler syndrome has mutated the more likely hood the kids have to getting all of these as well as mutated versions that they haven't seen much or ever seen. That is why it's good to know family history as accurate as possible for Colin's diagnosis.
Braetens' Iron level also came up low recently to. He was around 8 and the Pediatrician ordered another test to follow up with. It's also difficult to create certain diet needs when there is sensory problems involved. Braeten has been rejecting food just like Colin has which limits his intake and really does make me become more creative on how to get him to take the foods they both need to eat. I'm not one of those parents who just say forget it and give up though. There is always a way. I'd rather find a way than have my kids be picky, selective, and continue to be unhealthy.
Colins appointment is coming up. Lots to be discussed with the Dr regarding that. But another Iron level test will be in order. Along with some other special requests and specialists that I will discuss in another blog.
Also, yesterday he had his ERG which we haven't heard back on results. Before we've been explained about an overview or problems noticed, etc. It has been a bit concerned. They're sending the images from this study and testing to Colleges, the ERG machine hardware company, and anyone else interested in seeing the results. Because this is something new that would help improve their research and development and get further answers. Because the nature of his eyes are so unique this prompted them to pursue this testing to determine the base line health of his Retinas [for when things do get worse, we can compared to his base line], check Glaucoma pressure within his eyes as he's a suspect, how well his eyes adapt to light vs. dark [light issues with his eyes properly dilating has been under observance as his eyes dilate reverse of what they should. They also are looking into Cone Deficiency.].
What all is going on? I should know soon when the week begins again. This is an exam that the Retinal Specialist reviewed results and the Genetic eye Dr over saw with his Neuro Ophthalmologist. I have complete faith in them to find results. I will just have to keep waiting to hear those results. I'm not sure what to expect or trying to get any expectation in my head and just allow any possibility to be presented and take it as it comes and do with it the best I can with what I have.
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