Kind of lost

HI...
I'm mom to Olivia who will be three in a few weeks and she was just diagnosed this week. Needless to say we're a bit lost. Nobody but me will brush her hair because nobody wants to be responsible for her hair falling out as if not brushing will stop it. My husband wants to put her in a plastic bubble and well.....I don't know where to start to figure this out.

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Permalink Reply by Lisa on May 15, 2009 at 11:50pm
My husband would not let our daughter take a shower because he was afraid all her hair would wash off! He also thought she should not brush her hair, it might pull the hair out. I think this disease is hard for dad's because men always try to fix things and this is unfixable (so far).
Permalink Reply by Lisa on May 15, 2009 at 11:46pm
I am very interested in sharing information with you. I am Chandler's mom and she is 10 years old and has had alopecia for a month and a half. She also was getting allergy shots and on allergy and asthma medication. When we first noticed her first bald patch, we immediately thought of the allergy shots. Her hair started shedding when she began the shots, but I thought it was normal, because my hair sheds but my hairs grow back. Her allergy doctor said it could not have anything to do with her shots or medication. We did not feel comfortable and took her off the shots anyway. I have been trying to research building the immune system stronger, I would love to hear what you have found with the holistic methods.
Permalink Reply by Lillian (Tracy-mom) on May 18, 2009 at 11:06am
My daughter has been taking allergy shots for 2 years and we had gone up to two days a week for the month prior to her AA. Her allergist took her off everything even her asthma medication because she thought there was a possible link. We monitor her lung function everyday and its better than before. She has stopped losing hair so far. Unfortunately 2 weeks after we discovered lice in her hair so the lice combing was a bit stressful.

We also went to see a Naturopathic doctor who spent 1-1/2 hour going over her history. He suggest a GI test and ALCAT allergy test. He believes that she has more food allergies that is keeping her immune system hyperactive.

I have also used Moducare supplement since day 2 of her AA. Moducare is supposed to balance and support the immune system. I don't know if it helped stop the hair loss but I do know that she has not had one allergy or asthma symptom in 3 weeks (We Stopped all her medication). We also complety changed our diet to all organic.
Permalink Reply by Sybil on May 20, 2009 at 8:51pm
I am going to see one of my fellow church members on Sunday who is a nutritionist and is going to give me some pointers. We have another DA on June 5th...
Permalink Reply by errantpigeon on May 14, 2009 at 11:54pm
Sybil, you are not alone. My little girl was recently diagnosed and I know what you mean. The saddest thing ever was the other day when my litlte girl said "mommy, I know why my hair is falling out. It's because I brush it too much. See? All the hair is on the brush." Oh, heartbreaking.
I had a lot of good cries, usually at night alone. I found my partner coping differently than I, and really there wasn't much he could do.
For me, after a few weeks of real agony, I reached a place of acceptance. Well, I think it first was a decision (conscious or not) that I had to let it go for a bit, even pretend it wasn't happening, because I was truly suffering and needed a break myself. After that I found some acceptance, but admittedly more for the knowledge that I had to than anything.

I still ache for her, but I think with time comes this acceptance.

That's all I've got for now.

((hugs))

I promise you are not the only mom hurting for her little girl tonight.
Permalink Reply by Monique (Mom) on May 16, 2009 at 9:17pm
Amen!!!! I too cry everynight. My baby was just diagnosed this past Tuesday. I am so lost as to where to go from here. Is there hope of regrowth?
Permalink Reply by Monique (Mom) on May 16, 2009 at 9:16pm
Hi. I have a 13month old and was just dianosed. I am also lost! I am scard for the future and other kids. I just haven't met anyone yet with a child this young. She started loosing her hair at 10months and now has just about nothing anywhere.
Permalink Reply by Sybil on May 20, 2009 at 8:41pm
Hi
Sorry I haven't been around..we've had 4 days of OLIVIAFEST,,,her third birthday was Monday. I'll post some pics. We've got about 70% loss now and I'm so done with it. Yesterday she fell asleep on me and WHen I stood up I put my pocketbook on my shoulder..didn't know her hair was underneath and ripped out a whole CHUNK!! CRRRRRRAP!
Anyway..I am so used to it now that I forget others haven't seen her and then realize when I see their reaction.
Saw the Dr today, the PED. He said there was nothing that can actually be done and she can use the foam indefinitely since the amount of steroid is innocuous. I am not so sure I want to continue with it even tho we have regrowth...but let's see what happens
Permalink Reply by Lillian (Tracy-mom) on May 21, 2009 at 11:03am
I know that your daughter is young, but several people on this post have been using sulfsalazine and had great success. Look up Katie Beth. She has been using it on her daugher and has regrowth. They apparently start the process slowly and monitor the patients blood for about 4 month. But it is a drug that has been used for other autoimmune disorders and has been around for 40 years. It apparently only has a 35% success rate. But one person on this blog is had alopecia for 35 years and was bald for 20 of those. She has hair growing back! I got really excited when I saw this. Some people however do not handle it well which is why patient are monitored. Both from what I hear those that do handle it, the drug is safe and can be taken indefinite to prevent future hair loss.

For me, my daughter has stopped losing hair and her hair loss is hidden. If she starts losing it in great clumps I will definitely be trying the Sulfasalazine. I am preparing for the worst though and have looked at wigs and hats already. I like to be prepared for the worse even as I fight for answers.

Good Luck
Permalink Reply by Sybil on May 22, 2009 at 1:20pm
Hey Tracy..
I am not ready for that yet. Her PED said there are drugs that alter the immune system..but the ALTER the immune system. I don't want to deal with drawing blood at this point. We've just gotten to where she's ok with going to the Dr...I need to pick my battles and we won this one. I don't want to take two steps back. If this happens again when she is older or if her hair doesn't grow back we can wait until she is of an age where she can decide for herself. I am not going to drag her around to make myself and society happy. Right now to me it's just hair. If she had a life-threatening illness there would be no place too far or never too much to spend..
I do not mean to sound crass or rude or that you aren't doing the right thing..just right now that isn't the right thing for us..
ok..that just sounds mean..Honestly..you can't put inflection in writing..well, I can't, but I don't want to sound like I am criticizing you..I'm not. This is all new and I'd rather try one thing at a time or let nature take it's course.
Permalink Reply by Lillian (Tracy-mom) on May 26, 2009 at 10:15am
I was just trying to pass on hopefull news that I'd discovered. My daughter is a bit older and understands all this a little better. I told her some success story of people from this sight that have lived without hair just to prepare her for that possible event. It may be that nothing we try works.

Good luck with your daughter. And you are right. It's only hair. This is all probably harder on you and me than the kids.

Tracy
Permalink Reply by Alyssa (barbara-mom) on May 26, 2009 at 11:03pm
My 8 year old daughter was just diagnosed a week ago with alopecia. I cannot stop crying. She doesn't know it yet since she only has a small patch of hair missing in the back. I am very scared. She is a wonderful girl who has multiple food allergies as well as environmental allergies. She has been on inhaled steroids since she is very little for asthma. Recently her allergiest wanted to increase the medicine since her asthma seems worse. She also has been receiving allergy shots for 1 1/2 years which I thought had helped. Now I fear that all of these meds have contributed to her alopecia. Her allergists say the alopecia isn't related to allergies, but I don't believe it. I am praying that she doesn't lose more hair but I am fearful that she will. She has such a hard time being different from all her peers with her food allergies, I can't imagine how she would take losing her hair. I feel completely helpless.
Barbara

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