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 tooth enamel problems,weak teeth
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colleen Member Posts: 5 |
posted April 03, 2001 11:45 PM
   
Hi,I am new to this board and am so grateful to have found you.My 3 year old son has Llemelar Ichthyosis and as soon as his teeth came in I noticed brown spots on his two bottom teeth,took him to a dentist and they could not figure it out but gave him a cleaning and that was it.Now his teeth are so weakend and I have been so dilegent with him in brushing and his dentist doesn't have a clue.My oldest daughter doesn't have one cavity so the only thing I can figure is itis part of the Ichthyosis,he is healthy otherwise,has only taken antibiotics twice since birth.I know they can destroy tooth enamel if used a lot.Has anyone had this problem? Thank you for your input. IP: Logged |
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Chandra Member Posts: 668 |
posted April 04, 2001 04:23 PM
Hi Colleen, I'm 28 and have Lamellar too. I've never had problems with my teeth other than needing braces when I was a kid. So if his ichthyosis is affecting his teeth, well, that's a new one on me. I've had a lot of soft tissue problems affected by my ichthyosis but never any bone problems connected to ichthyosis. Keep looking though, the more we learn the more we can help each other out. IP: Logged |
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colleen Member Posts: 5 |
posted April 04, 2001 07:17 PM
Chandra,thank you for reply,I will definitely find out what is going on though it feels so discouraging when these Drs.look at me like I have done something wrong because they don't even know what ichthyosis is.I want my little guy to have every oppurtunity under the sun to grow up healthy and feeling good about himself and I try not to let him feel the sadness that sometimes gets me because of my frustration.Well,thank you for letting me vent and thanks again for your reply. IP: Logged |
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Chandra Member Posts: 668 |
posted April 05, 2001 05:06 PM
My mom also got really rough treatment up until I was in my teens. People actually treated her as if my ichthyosis was her fault! Some people can just be awful. I suspect there are a lot of parents who visit this board that could commiserate. Best of luck to you and your family. You sound like you're doing everything right, in my book at least. IP: Logged |
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colleen Member Posts: 5 |
posted April 06, 2001 05:29 PM
Thank you so much for your encouragement from the bottom of my heart! I wanted to ask you how you manage the ichthyosis,has it become easier or does it seem touch and go?Also what kind of soft tissue problems have you had?I hope you don't mind my asking.Thank you so much!God Bless. IP: Logged |
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Laura Phillips Administrator Posts: 424 |
posted April 09, 2001 05:24 PM
I'm with Chandra---I have lamellar and have had been lucky to have very good dental health (2 cavities in 30-odd years, no braces, nothing else...usually get compliments from the dentist and his office about my teeth, actually). So, I don't personally know of any link there but that doesn't mean there isn't one. I also have found my skin in general has gotten better as I've aged. I don't know if that's some kind of inherent improvement in the ichthyosis, the result of many years of Accutane treatment, the result of an overall more effective treatment regimen, etc. But my skin's overall appearance and physical comfort are definitely better. However, I've always been very heat intolerant (not being able to sweat) and I'm finding that I'm getting more heat intolerant as I get older. But all in all, very high quality of life...very good life IP: Logged |
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colleen Member Posts: 5 |
posted April 09, 2001 08:55 PM
Thanks Laura! And it is so good to hear that things get better.About his teeth I am wracking my brain to figure out what I have done wrong but I figure as long as I stay on top of this his adult teeth will have a chance.His dad had bad teeth as a kid but now has a beautiful smile so ...Other than that his skin looks great especially now that theres humidity here.I am so glad that this site exists because I realize as a mom I am not alone and most importantly Tommy is not alone.That is a great relief!!! IP: Logged |
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Chandra Member Posts: 668 |
posted April 10, 2001 10:22 AM
Laura brought up an interesting point. Yes, my skin has improved with age. I once had a conversation with a gentleman who said that his father also had lamellar ichth. Apparently by the time his dad reached approximately 50, his skin looked just fine. So hopefully we all will keep improving with age. Isn't that something to look forward to? I certainly think so. As far as soft tissue problems goes, it all relates to the tightness of my skin. Because my skin doesn't stretch very well and often tightens, it compacts soft tissues. This means on days when I'm dry for whatever reason such as weather, illness, or far from home and unable to bathe as often, my skin will tighten and it'll press my muscles, tendons, etc., especially around my joints. This often causes a lot of pain and difficulty in movement. For years my doctors always thought I must have some sort of arthritis until I finally saw a rheumatologist. The rheumatologist happened to see a lot of dermatology patients. He said a fair amount of dermatology patients often had the same problem of tight skin compacting tissues and thereby causing joint pain. He said that not everyone with a severe dermatology condition will have this problem, it really depends on the individual. The treatment is actually the same as if I did have arthritis. I regularly take a prescription anti-inflammatory. It has worked wonders for me. Before I took it, there were many days where my hips and knees hurt so badly that I could only walk across a level surface, and not very far for that matter. I couldn't go up and down stairs, and getting in and out of the bathtub was almost impossible. I haven't heard of anyone else on this board with the same problem. Then again, maybe I whine more than the rest of you IP: Logged |
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Laura Phillips Administrator Posts: 424 |
posted April 10, 2001 04:35 PM
Chandra, Wanna start a new topic in the general forum on soft tissue issues? I'd love to hear what everyone else has to say. I definitely have this problem, but to a lesser extent than you suffer (mine is not bad enough to have had the kind of joint pain that would have made me think to see a rheumatologist). But when I'm having a "bad skin" day/period of time, I definitely get such tightening that it's very painful to move. It was pretty neat to hear your explanation from the rheumotologist about what's really happening there--makes sense. L IP: Logged |
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Chandra Member Posts: 668 |
posted April 12, 2001 12:32 PM
Topic is now in general discussion area.  IP: Logged |
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