Comment by JeffreySF on April 4, 2011 at 8:39pm

Thanks for the info. I always enjoy researching available options.
Jeffrey

Comment by MotherofM on December 9, 2011 at 10:47am

Hi Heather,
How is the progress of your son? I am interested in seeing what route you took and prognosis.

My 15 month old son is going through exactly the same issue right now. We took him to a dermatologist and he gave us topical cortisone type cream to apply twice a day. It's been a month and we can see some hair growing. He also suggested blood work on Hypothyroidism and it came back negative. We are taking him to an allergy specialist on Monday to get him tested for Gluten and Lactose intolerance. I read a lot about having one of these allergies and Alopecia.

This also started for him right after his 1st birthday (before that he had really thick beautiful hair) when we switched him for Formula to Regular organic whole milk so I wonder if has something to do with that.

Thanks

Comment by Heather Ramon on December 12, 2011 at 1:40pm

MotherofM -
We went through all the blood testing for thyroid and allergies and anything else that we could think of. End result: he's perfectly healthy, but bald. We saw a pediatric dermatologist at the Children's Hospital and the only treatment we considered was SADBE (a chemical applied to the scalp that would create an allergy in hopes that it would divert the immune system from the hair follicles). We did the test spot and he had no reaction whatsoever. In a follow up appointment we had the option to increase the strength but decided against it. We're actually in a really good place with it right now as far as acceptance. The blessing we've seen over this whole thing is that because it happened at 14 months old, it will be his normal...no traumatic event in the teen years watching it happen. This is one of the reasons we decided against treatment. Everything would likely result in it falling out again and we just don't want to be waiting for that day and then for him to be old enough at that point to go through it too. We have seen peach fuzz come and go on his head and even an occasional eye lash grow and fall out. We're not hopeless, but we're counting more on God for healing and not seeking treatments at this time. I had asked the derm how I should research and see what new things might be found in the coming years and he just recommended that we follow up once a year to let him give us the updates. We were fortunate to find a doctor we trust to do that. I didn't want to have to weed through all the info on the internet and try to decide what's reliable and what's not. Something interesting that did recently come up at a visit to my doctor though was a pamphlet for Latisse (a Rx for thickening eye lashes). I decided to ask my doc if it would work on someone with Alopecia and she gave an enthusiastic yes! It could even grow eye brows with minor side effects. This is something we will definitely consider when he's old enough to be responsible for application and make that decision for himself. One surprise that no one warned us about was the possible effect on fingernails. At one point he had 4 nails that appeared to be peeling off. I cut the loose pieces to avoid them getting snagged on anything and did apply a keratin strengthener that is put out by Avon. The derm said it didn't make any difference, but whether it did or didn't, it ran its course and his nails are all back to normal and we just keep an eye on them.
Mom to mom:
I'm tired of hearing it myself, but we are fortunate to have boys with this condition. I feel like I would have the same attitude with a daughter, but I know the challenges as she gets older would be greater. I encourage you to pursue treatments to your level of comfort for what you want for you son while he's too young to determine for himself. I tried to consider the conversation I would have with him in the future as to the decisions we made and it helped my perspective. He’s a healthy, joyful and funny kid and I don’t want to take any of that from him or myself. At some point, he has to be able to make his own decision and know he has your support no matter what and he has to know he's perfectly made no matter what he looks like. If you're concerned about teasing, if it's not the hair, it will be something else. My job is to build confidence and self-assurance in WHO he is, not what he looks like. If there comes a day that he's just really struggling with it, I'm prepared to shave my head to show my support. You'll have your ways of helping your son cope too.
Things we've discovered and do:
**In these cold months, beanies are a must, but they're not comfortable unless they are the fleece kind and have no seams in the top...seams and knitted materials tend to irritate his head. Sometimes wearing them to bed is good too, or a hooded sweatshirt.
**A lot of people assume he's going through chemo and are afraid to say anything so when I sense it I just offer up the opportunity

Comment by MotherofM on December 12, 2011 at 2:26pm

Hi Heather,

Thank you so much for your response. This is all great information. I was really looking for something positive but it just makes me really sad to know that this could be the prognosis for my son few months down the road too.

We took him to an allergist today and they took 4 tubes of blood to do all kinds of testing. Let's see what we find in a week. We already got him tested for hypothyroidism which came back negative. We also had a Derm appt today since its been 4 weeks since started the topical medication and he is not seeing any new hair growth yet and loosing hair from his eyebrows too now. Derm told us it take 2-3 months for medicine to take effect. Are you applying any medicine to your son's scalp? We got this medicine called Mometasone Furoate and have been applying that to his scalp and eyebrows for 4 weeks now and derm said that it is the strongest medicine he can give a 15 mon old kid and does not recommend any other route at this point.

We are trying to persue Naturopathy route to see if that will help us any and also going to another derm end of Jan for a second opinion. I really hope his hair grows back and am trying to find issues that could've caused this disease since I had never seen or heard of this before. We also think it could be linked to lactose or milk allergy (although he tested negative for that) because his hair started falling out after we switched him from formula to orgnaic whole milk after his first birthday. I am going to swtich his milk to soy milk starting today and see if that makes any difference, since I found some studies that links lactose to alopecia, obviously derm and allergies said it is not linked.

Have you tried changing your son's diet? Derm said about 70-75% of kids at this age end up growing all the hair back but not sure if it falls out again. This disease is really disturbing and feel so helpless with "wait and see" approach and just praying.

Hope to hear from you.
Grishma

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