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Looks like my son has my crappy genes
About a month ago I posted that I saw my son has his top lashes missing on one eye... (about half of the lid) and since I have had alopecia for 30+ years myself this has been my greatest fear. Today I found two patches on his head, not large, but I know those patches well.. my heart stopped...
I havent seen a derm or any kind of doctor for my condition for over 20 years.. what was the point.. they had nothing to say.. but now that its my son, I need to know what the updates are... what if anything new is going on and what are the chances this will turn into Totalis as it did with me. I live in Toronto Canada and if anyone knows a good dr. please let me know. Also, I would like him to meet other kids with similar conditions.. is there a local meeting group anywhere in ONTARIO? I was very isolated with this as a child and I remember feeling shame, I don't want that for him... I pray that this is only a small patch that will go away with time... but I'm not unrealistic. Also I heard that pets can have some sort of negative influence... is this correct?? WE have a dog and a cat.....
I havent seen a derm or any kind of doctor for my condition for over 20 years.. what was the point.. they had nothing to say.. but now that its my son, I need to know what the updates are... what if anything new is going on and what are the chances this will turn into Totalis as it did with me. I live in Toronto Canada and if anyone knows a good dr. please let me know. Also, I would like him to meet other kids with similar conditions.. is there a local meeting group anywhere in ONTARIO? I was very isolated with this as a child and I remember feeling shame, I don't want that for him... I pray that this is only a small patch that will go away with time... but I'm not unrealistic. Also I heard that pets can have some sort of negative influence... is this correct?? WE have a dog and a cat.....
Replies to This Discussion
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Permalink Reply by Tallgirl on
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Go on the GROUPS tab above and look for the Canadian group...also, Carol on this site I think is from Ontario. She has a video on the VIDEOS tab. Also go to the Support section at www.naaf.org
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Permalink Reply by Julia Gedeon on
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thank you so much, I'll do that.
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Permalink Reply by Marisa on
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I would think that your pets provide a good influence...pets are calming...I have never heard anything like that....and if it were true I would have to say I am keeping my dog, Martha...she is more important than my hair anyhow!!!
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My doctor told me to stay away from animal fur and wool when I was young and had eczema. So, I did. After I had hair grow in for about 15 years, I got a puppy for my then-husband, which led to more puppies, rabbits and a horse. I didn't think I would lose my hair again, but lo! I lost it ALL when we had the pets!
Now all pets are gone, body hair is back (sparsely, some going again), and I have AT . This seems to be my end state, as I have had it more than 10 years now...even without the animals.
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Permalink Reply by Cindy on
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Hi Julia, I think your son is lucky to have you as a support system, not only because your his mom, but because you can relate to what he will go through and may endure through his life. My daughter Samantha lost all of her age by age 6. It only took her 6 months to loose it all from the time we realized she developed this condition. By 6.5 she was regrowing her hair with a treatment called SADBE. It is one of the irritant treatments. We tried the steroid creams with no avail and they are not safe for long term use. As you know Alopecia varies, there is no cure and what works for one does not for another. I do suggest for piece of mind you ask your pediatrician for a referral to a dermatologist. I also suggest contacting the Childrens Alopecia Project www.childrensalopeciaproject.org. They maybe able to help meet other families in your area if they have any Canadians registered with them. They also offer online chats which you may find helpful. Best of luck and you have a lot of support here..Cindy
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How painful are these shots... he is 4 years old... it just breaks my heart to think of it... but .....
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Permalink Reply by Amy on
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Oh...I am so sorry. I have two small boys too and I cannot help but get nervous every time I brush their hair. I am AU now. I can imagine what you are going through.
The good news is they just isolated genes involved and while thats a long way from treatment, it's a fairly big development.
For your son, often times kids DO just get spots once and then not again. But as you have it, I'd say steriod cream and vitamin D. I would personally try treatment to see if you can arrest the acitivity before it intensifies and I do think it intensifies. I had good luck with steriod shots (20 years on/off) until the AU hit overnight but shots are a bit much for a 4 year old. I also think DCPC should be looked at as it is said to possibly have immuomodulating effects.
Like you, its a whole different ball game when its your child. However, remember that no one can predict the future or has control over everything in life. You will have to make sure your child understand how wonderful he is, missing hair or not. If mommy believes it, so will he. The little ones are such angels.
I pray for a good outcome for your little guy. Take care.
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by the way, if you use this thing called buzzy bee or something it helps distract the nerves and the shots hurt less. My derm does a variation of it by tapping hard on my skin nearby when doing the injections.
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Thank you so much for your replies.. much much appreciated.
Its crazy we finally got a specialist in the field and they tell me our appointment is JAN. 16th.. wow...
So far the spots are just small and there is no progress one way or another... keeping my fingers crossed.
Again, thank you for your replies,
J
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