Os is having some issues with his nails, especially his toenails. They are super-flimsy and split apart into sheets and crack around the edges. Sometimes I put a clear coat on them, hoping it helps. But I don't think it really does.
So now I want to get him something to specifically help that. The reason EDSers experience this problem with their nails is because keratin is what holds nails together to the finger, and almost entirely comprises it to begin with. Keratin, is a protein and made up of collagen. Collagen is the type of tissue effected by most forms of Ehlers Danlos Syndrome.
Things that are good for healthy nails include Vitamins (especially A, B, C, D, & E) plus calcium and iron, as well as Folic Acid. I know Oscar has at least one copy of my MTHFR as well, which makes it hard for us to absorb B Vitamins (which includes folic acid). Hopefully, he only has one copy of the gene, so then he has a potentially good copy of a regular gene that makes him the correct enzyme.
So now I gotta find something to help strengthen his nails, something he'll let me apply, and something that hopefully isn't too expensive.
These are some of my ideas:
http://www.dermstore.com/product_Nail+Strengthener+Cream+_20980.htm
http://www.amazon.com/MAVALA-NAIL-SHIELD-BOTTLES-3oz/dp/B0013BWJPE
http://www.amazon.com/Bio-Nail-Strengthener-Conditioning-Beautiful/dp/B003JI57IA
http://www.amazon.com/dp/B00028N7Z0
Thursday, December 23, 2010
Wednesday, December 22, 2010
There and back again...
It's been a while. I have been busy. I am trying to get into the nursing program at a local community college and started working on some of the pre-reqs this past fall semester. I took Anatomy and Physiology I, British Literature, and Developmental Psychology. Those last two, I've taken before, and I was retaking them to improve my GPA. A&P, however, was a class I haven't had before. I had heard it was difficult. I guess people underestimate both my medical history and my personal hobby with all things scientific and medical. It wasn't that hard for me, and I ended up with all As this semester, which is exciting. Next semester, I have Medical Terminology, A&P II, and Microbiology. I am currently enrolled in First Aid as well, but it's odd hours, so I think I will change it to something else with better hours.
Oscar and I have been doing fairly well. He has managed to put on 2/3 of an inch since October, which thrills me beyond words. He basically only gained 1 inch all of last year. He still hasn't gained much weight to speak of, but I am happy with growth in height. He also has been improving with his speech. He has a narrow palate, crossbite, and overbite, and those all add up to wonky speech issues. Specifically, he has trouble forming "fricatives." Basically, if it is a sound that involves the use of his tongue or lower lips touching or narrowing near his upper palate or teeth, he has trouble. His "t" makes a "ch" sound, his "l" sound makes "eh" or "yeh" sounds, his "y" sound makes a long "i" sound, he can't crisply end his consonants like "t" or "d" very well. There are other examples, and not to mention the fact that he slurs and spits a lot as well.
To correct this, he will need a palate expander placed when he is 5 or 6 years old, and he will work up to braces later and have them for several years and then even when they are removed, he will need to use a retainer for the rest of his life to keep the palate and his teeth from returning to the original, incorrect, narrow shape. I really really really really really dread this. I mean, really really really, totally and utterly dread it. It will be painful, and I am sure he might be teased for being a 1st grader or even kindergartner with braces, as if he didn't run a high risk of that because of his clumsiness and small stature. That is probably one of my largest concerns for him- finding his place in the world and people not teasing him and beating down his dreams.
Anyone with EDS-kids or just kids needing palate expanders in general, please shoot me an email, I'd love to find out more about it. They both have their cleaning, which they get every 3 months, plus a good fluoride treatment. For Os, it's especially important, it helps him avoid cavities.
Oscar and I have been doing fairly well. He has managed to put on 2/3 of an inch since October, which thrills me beyond words. He basically only gained 1 inch all of last year. He still hasn't gained much weight to speak of, but I am happy with growth in height. He also has been improving with his speech. He has a narrow palate, crossbite, and overbite, and those all add up to wonky speech issues. Specifically, he has trouble forming "fricatives." Basically, if it is a sound that involves the use of his tongue or lower lips touching or narrowing near his upper palate or teeth, he has trouble. His "t" makes a "ch" sound, his "l" sound makes "eh" or "yeh" sounds, his "y" sound makes a long "i" sound, he can't crisply end his consonants like "t" or "d" very well. There are other examples, and not to mention the fact that he slurs and spits a lot as well.
To correct this, he will need a palate expander placed when he is 5 or 6 years old, and he will work up to braces later and have them for several years and then even when they are removed, he will need to use a retainer for the rest of his life to keep the palate and his teeth from returning to the original, incorrect, narrow shape. I really really really really really dread this. I mean, really really really, totally and utterly dread it. It will be painful, and I am sure he might be teased for being a 1st grader or even kindergartner with braces, as if he didn't run a high risk of that because of his clumsiness and small stature. That is probably one of my largest concerns for him- finding his place in the world and people not teasing him and beating down his dreams.
Anyone with EDS-kids or just kids needing palate expanders in general, please shoot me an email, I'd love to find out more about it. They both have their cleaning, which they get every 3 months, plus a good fluoride treatment. For Os, it's especially important, it helps him avoid cavities.
Monday, July 19, 2010
What's been going on...
It's been a while. In fact, my last post was about a yard sale I had basically exactly a year ago. In that post, I vowed to never do another. How low would your jaw drop drop to find out I'm having another this week. Go figure...
So, in this year, a couple things have happened. In September, I got pregnant. In October, I miscarried. I had some blood tests done and we discovered I have a genetic mutation called MTHFR, which is an acronym for a really long enzyme that I fail to make. This enzyme is what helps with metabolism of B vitamins, especially folic acid. Folic acid is the vitamin that is known to be so beneficial for growing embryos.
Unfortunately, this isn't the only issue I have to work with. In addition to the MTHFR, as well as my PCOS, which can also cause miscarriages, Oscar and I have also been diagnosed with a connective tissue disorder, called Ehlers Danlos Syndrome. Basically, our DNA has a mutation which tells our body the wrong way to make collagen. Collagen makes up many different tissues and parts of your body. Bones, such as teeth, organs, skin, ligaments, tendons, eyes, and several other things are comprised of collagen. With Ehlers Danlos, these tissues are weaker and more prone to situations such as hernias, prolapses, subluxations and dislocations, joint pain, and even in more extreme cases, aneurysms and aortic dissections. There are many different forms of Ehlers Danlos, at least 12, and they have some similarities, and a few key differences. Some of the forms are not as dangerous as others, but some are dangerous indeed.
Our doctor thinks we have a relatively non-risky form called Hypermobility EDS, or Type 3. It's also possible we have Classic, Type 1 or 2. Without genetic testing, it's hard to say, and insurance companies are stingy with the testing, so since the treatment really won't differ between those types, we haven't been tested for our specific variant yet.
It's a genetic disorder, and in our case, it's autosomal dominant, which means it only takes one copy of the gene for the disorder to present itself. Oscar got it from me, and I got it from my family, most likely. It can happen as a random mutation, but in my case, there are family members with similar symptoms.
Anyway, we've been seeing doctors for our issues and so far all looks good. I just need to lose weight and build muscle mass. For Oscar, we need to encourage muscle mass and low-impact physical activity. He and I have been swimming a lot this summer, so I'm hoping it's paying off.
Anyway, this disorder also has a nasty reputation for causing pregnancy-related issues like miscarriage, premature rupture of membranes, and early labor. So, if we ever have another kid, I will have to be followed by a high-risk doctor.
So that's we were are.
So, in this year, a couple things have happened. In September, I got pregnant. In October, I miscarried. I had some blood tests done and we discovered I have a genetic mutation called MTHFR, which is an acronym for a really long enzyme that I fail to make. This enzyme is what helps with metabolism of B vitamins, especially folic acid. Folic acid is the vitamin that is known to be so beneficial for growing embryos.
Unfortunately, this isn't the only issue I have to work with. In addition to the MTHFR, as well as my PCOS, which can also cause miscarriages, Oscar and I have also been diagnosed with a connective tissue disorder, called Ehlers Danlos Syndrome. Basically, our DNA has a mutation which tells our body the wrong way to make collagen. Collagen makes up many different tissues and parts of your body. Bones, such as teeth, organs, skin, ligaments, tendons, eyes, and several other things are comprised of collagen. With Ehlers Danlos, these tissues are weaker and more prone to situations such as hernias, prolapses, subluxations and dislocations, joint pain, and even in more extreme cases, aneurysms and aortic dissections. There are many different forms of Ehlers Danlos, at least 12, and they have some similarities, and a few key differences. Some of the forms are not as dangerous as others, but some are dangerous indeed.
Our doctor thinks we have a relatively non-risky form called Hypermobility EDS, or Type 3. It's also possible we have Classic, Type 1 or 2. Without genetic testing, it's hard to say, and insurance companies are stingy with the testing, so since the treatment really won't differ between those types, we haven't been tested for our specific variant yet.
It's a genetic disorder, and in our case, it's autosomal dominant, which means it only takes one copy of the gene for the disorder to present itself. Oscar got it from me, and I got it from my family, most likely. It can happen as a random mutation, but in my case, there are family members with similar symptoms.
Anyway, we've been seeing doctors for our issues and so far all looks good. I just need to lose weight and build muscle mass. For Oscar, we need to encourage muscle mass and low-impact physical activity. He and I have been swimming a lot this summer, so I'm hoping it's paying off.
Anyway, this disorder also has a nasty reputation for causing pregnancy-related issues like miscarriage, premature rupture of membranes, and early labor. So, if we ever have another kid, I will have to be followed by a high-risk doctor.
So that's we were are.
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