So I called Elena's Endocrinologist today because I hadn't heard back her test results from back in August. Turns out, since the blood was drawn during her MRI the results were sent to the Neurologist instead of the Endocrinologist. I figured that had happened. Anyway, I have the results now.
Thyroid - middle normal
Growth - low normal
Cortisol - middle normal
That's good to hear. I'm a little concerned about the growth but I'm just glad the rest is ok. I'm just waiting for the day that she'll need thyroid meds. I'd be surprised if she never needs it. Not only is she more likely to get it because of having ONH but it also runs in the women of my family. I have have it. My mom has it and her mom had it. I don't know any further back than that but am told it does go back further.
She has another appointment in May to re-test everything. If her growth hormones are the same or lower they may want to do hormone treatments. I'm not sure how I feel about that. I want what's best for her but I also don't want to cause problems if the hormones do more to hurt than help or something bad happens. They said they wanted to do a xray at age 4 to check out her bones so I think I'll wait til then, if they say she needs it, just to be safe. The nurse I spoke to gave me the name of 3 growth hormones that they might use and that are covered by my insurance. They are Nutropin, Genotropin, and Nordatropin. (Hope I spelled those right.) I'm going to go research them. If anyone knows anything about these drugs or about using growth hormones I'd love to hear from you.
Hi my child was just diagnosed with septo optic dysplasia yesterday and I have found your blog helpful, I dont know what the diff between sod and onh is but we are being referred to an endocrinilogist. My son is only two months old and we also live in utah, I just want to find out what to expect from his development, how is it raising a child with sod or onh. I am shocked at how rare these are in children and dont understand how it happened to my child, but if you can you can email me at hildadunford@gmail
ReplyDeletecom elena looks beautiful and jusy like my husband was saying last night about our son ashton, they are perfect.
Elena was 2 months old when we first noticed something was off. The first year will be rough but it gets easier. I will do a post about the resources in Utah and what to expect, instead of emailing. That way someone else might be able to benefit from it. As for SOD and ONH. They basically are the same thing. Listen to the interview I posted a couple days ago. It talks about the differences.
ReplyDeleteI didnt realize there was even a difference, I will have to go check out the interview, my son has septo optic dysplasia (plus they are saying because he also has some other things going on)
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