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Help me! I feel so helpless
My 7 year old son began to lose his right eyelashes several months ago. We thought he was pulling them out until the whole upper lash was gone and no re growth. Took him to our pcp. The day before we noticed a quarter size bald spot on his head. My father has AU when he was 30. Pcp did no testing, just referred me to an immunologist for allergies. A long wait to finally get near the appt, they called to tell me they only do allergy testing and he should seea derm. Or rhumitolost. Since waiting for the initial appt more hair has come out and also his left brow. I have been on the phone non stop and no one sees the urgency of this. Finally got a referral to a great derm center. I begged and pleaded the situation and that the hairlossis rapid. No apps til August. As of this morning he has a weird rash. Red spots on forehead, neck, back or ear and on his hand. Just red marks. Took him to er this morning. They diagnosed alopecia and are making personal call to dip shit pcp asking her to personally call the derm center to get him in sooner. We don't even know if it is alopecia yet. I need to know now! No one cares. We haven't discussed this yet with my son. He can't see the bald spots on his head. I don't know what to tell him. He will be devestastated. I am so afraid of bullies. My son is so sweet and comes home upset if the kids don't want to play with him.i know it's up to me to be positive for him. I'm just so broken. He thinks his grandpa looks funny with no hair, which is not condoned but he is still 7. How will he take this. I am against all of the drug treatments that are out there due to the side effects. Are my feelings selfish? I am so afraid for him.
Replies to This Discussion
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Permalink Reply by carebear42 on
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Sorry about your son, it has to be hard on both of you. My father also has alopecia and when he was in elementary school his hair on his head fell out, it did however grow back in. My sister got it when she was in high school and I now have it at the age of 42. I am knew to this disease and can't offer much advice except to get him into a specialist and hope they can help your son and ease your worries.
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Thanks...after much pleading, crying, begging for an appt has finally ended. I see a specialist on Friday. He is president of maines derm. Society and specializes in hair loss. I went from no appt. til August to this Friday. I went up every dr. And nurses ass to get this. After 3 weeks of initially taking him to the dr. They never mentioned a blood test. Hello! Thyroid? I begged them to get a lab done for everything under the sun today. He was a brave boy too with the blood test. He still doesn't understand what is happening other than us trying to find out why he is losing his lashes. He can not see the back of his head. More bald spots every day.not until I get a diagnosis will my husband and I talk with him....I lost a clump of hair right in the same spot twice on the right side of my widows peak. Once 3 months after my first child and the next was about 2 years after my second child. My son right now is my priority but curious if there is a connection with me. Other than that my hair grows very very slow
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Happy to hear you have an appt. and will be praying for you all.
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I am so sorry to hear about your son. My 5 year old son was diagnosed with Alopecia in early February. His Pediatrician seemed so passive about everything and just referred us to a Dermatologist who just by looking diagnosed him. I found a children's specialist that I am taking my son to in order to get blood work and food intolerance testing. Their earliest appointment was early June but I pleaded with the receptionist that if ANYTHING opens up sooner to call me ASAP. Right now the hair on top of his head all fell out but the sides and back are still there and it looks to me as though the hair loss has stopped since it has been this way for about a month now. We tried the steroid cream but it has done nothing in my opinion. My son also has had weird red marks.....like out of no where he has one on each eye brow....and a few on his legs and arms. I am not sure if it is related or not. We go back to the Dermatologist in a week so I will ask then and we will also decide what we do next. I think I am too scared to try anything more aggressive in terms of treatment and may just see if it grows back on its own. I am really looking forward to the appointment with the specialist to see if there are any underlying causes or food intolerance issues that he may have. I don't think your feelings are selfish at all. I am very afraid too. All of this is so new and sudden as no one in our family that we know of has had Alopecia.
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I am curious to know what they find out as far as the red marks on your son. We go to the derm for the first time tomorrow. His blood was checked and they say he is fine across the board but I am still picking up a copy of the results to do my own research. I guess what is within normal levels is for general health but sometimes a certain level of something seems ok for general health may not spefically be ok for hair follicles. I am not planning on any type of steroid creams. I just don't trust them for a child. Good luck.
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Hi again. I read your update. I know it is very difficult to receive a diagnosis but it seems like you are handling everything very well. It took me a few weeks to finally be at peace with everything. I know it takes time. Explaining it to my son was tough but we also kept it very light. He seems okay with everything. I tell him every day just like I have always done how much I love him and how amazing he is. I will continue to do that every day. Our son also wears a hat (he is obsessed with Star Wars so it is a Storm Trooper hat) when he wants and usually just when he goes outside to play. The red marks I was told are allergic dermatitis. I am seeing a different dermatologist tomorrow to get a second opinion. If it is allergy related then hopefully when we meet with the specialist we can figure out what he is allergic to. We stopped the steroid cream as it doesn't appear to have helped in any way. For now, I want to focus on trying to determine if there is a root cause so until we meet with the specialist in June, I don't plan to try any other treatments. I will keep you updated on anything new that I find out. Good luck!
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Hi, his red spots went away , thinking allergies too. I'm so pissed it seems so up in the air as far as not knowing how this is happening. Why is it more let's treat the symptoms and not enough let's find the root of this? Oh yeah, if we find the root then we won't make money on all the pharmaceuticals.
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Mama I feel compelled to write you something. I am a 46 year old man with Alopecia Universalis; but my full body loss of hair only happened 6 years ago. Up until then you would not have known I had alopecia. But I did and it started in grade 2; I think I was 8 years old. So I know something about having this disorder.
First off, you are not alone. Now there are forums like this to gain information and vent your frustration; unlike while I was growing up. The best and first thing you should do is not panic...please take a deep breath and try to relax yourself. Showing panic and frustration in the eyes of your child will cause him to become even more insecure than he might be already. By all means get your son tested for all the disorders and diseases that would cause hair loss like a thyroid problem and other significant diseases. the diagnoses of Alopecia Areata is made when there are no other problems with his health. The way most of us look at is "ahh, it's only hair. At least there are no other issues like leukemia or something that will kill us" and the best way to help your child is to try and adopt that same feeling. It's hard, I know but you are the parent and must remain strong for your child. Sure, cry, sometimes it feels good; but not in front of him. Be strong. I know that some kids will make fun or taunt him but even more kids will come to his aid and help him and accept him for who he is if you help him come to some kind of understanding, even though non exists. The best way to look at Alopecia is that it is an "autoimmune disorder" which means your body is attacking itself - but don't tell him that. Tell him it's his body is allergic to his own hair...not to other peoples hair.... just his own. So his body is trying to get rid of what it thinks is harming him, namely his own hair. So he's allergic to his own hair - that's it. That simple answer will help him understand it better and help him deal with it a little better and explain it to others. All kids know about allergies like to peanuts or eggs or bees or dust; so your son is allergic to his own hair.
Alopecia goes through stages. Sometimes there is even complete remission. For about four or five years through my late teens I was fine but during my early teens I lost three quarters of my scalp hair. I quite high school for a year to "get away" then it all grew back so I went back to school. when I was 16 I stared intra-dermal injections of Kenelog(a cortisone steriod) it helped grow back the spots but who the hell knows the long term affects. I had those injections off and on for 16 years. At 32 years old I thought about all the cortisone my body had to absorb and what the hell that was doing to me so I stopped and just started shaving my head bald. To my surprise I looked really good with a bald head and I kicked myself because I should have just done that through my teens instead of all that cortisone. Bald heads are in fashion now unlike the 80s when I was a teen - back then it was the Hair Generation. I can tell you one thing though that I had no problem with the girls at all. Attraction is mostly about attitude. If you help him become confident then he'll be just that and people are attracted to confidence. Help him grow up well rounded. You may not be able to help him grow his hair but you sure as hell can help him become an intelligent person. Help him learn an instrument, help him with mathematics and language and you know maybe he'll grow up to become whatever he likes and makes him happy.
One other thing, the medical establishment is slow to deal with Alopecia. Yes you'll get frustrated by some doctors but they know very little about it. It's only now that research is increasing but it will take a long time to figure this out. Autoimmune disorders are really hard to figure out; some other autoimmune disorders are diabetes, arthritis, vitiligo and the list goes on and all are hard to figure out. I personally think the best way to information and advice is through forums like this. There are a lot of knowledgeable people here and caring too. I hope this helps you a little and by all means reach out when you need. Alopeciaworld.com is amazing and the founders of this forum are a God send to many, many people and there are many people here that will help you get through whatever happens.
Sincerely,
James X.
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Wow, thanks James! We went to the derm. Yesterday and he was diagnosed with AA. The dr. Was very honest and didn't leave me with so much of the unknown. He answered my questions well. Even though he did not provide a cure my feeling of panick subsided and gave me ease to focus now on what is and will be. It's a waiting game now. Could all fall out quickly, might come back now and fall out in months. No one knows. We are still going to see a rhumatologist to cover the bases. Before this had happened my husband and I do everything we can to help boost confidence. He is already a lady killer so I don't think he will have problems there. As a woman, I have always loved bald men. I never know why grown men struggle with the comb over, the wrap around, plugs, creams...bald is beautiful. I've shaved my head before once as a teen and about 5 years ago. We got my son a drum set last year and really want him to excel with it. If you are a musician than you know how much demand there is for a badass drummer as a teen. I feel he has a lot of pressure in his 1st grade class. He has problems being distracted and gets frustrated. There is so much work and homework. This will also be a big focus on helping him with stress as I think that this could have caused the out brake this year.
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How do you deal with the sun and also loss of lashes? My dad has AA but he is very distant from me and not much help for chatting. Do you find that your eyes are less protected from sun and particles?
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Please don't fuss with him too much about stress. kids absorb it like water. I remember my parents going on about stress when I was young and I can tell you it really irritated me and that gave me stress....Being so young I didn't understand the concept of stress. Also this is an autoimmune disorder that is genetic! It really has nothing to do with stress. We have a problem with our genetic structure whereby the autoimmune system attacks the hair folicles. It might be the case that something triggered it but we don't know that for sure. But one thing we do know for sure is that once it has been "triggered", if you want to look at it that way, it will do what it will do. Yes reducing stress is a good thing but that can be said for everyone in every situation. So yes help reduce stress but don't fuss over it. Outside stress like school work and peer pressure are normal and in some sense are good for development. The biggest thing for you is to help him, as you are already doing, deal with internal strife. It sounds like you have a handle on that....good job!
As for the lashes and eye brows....wow you don't really realize how important they are until you don't have them. Lashes help keep out dust and eye brows help channel sweat away from your eyes. I sure wish I had them back for those purposes. But having said that I wear sun glasses as much as possible and just wipe the sweat away from my forehead and just deal with it.
If you haven't done so in a while, maybe you should approach your dad and tell him you love him and it doesn't matter at all what he looks like, and most people think the same way also. You want your dad back and never mind about the AA. Besides you might need his help to help your son and how is his grandson supposed to feel or act seeing his grandfather moping about the small stuff. We are only here once and there is no second chance in life so we must make the best of it while were here. I know it's hard for you but maybe you have to help him out of his shell too...I know it's hard but that is what life has thrown your way also.
With all strength and love,
James X.
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We explained it to him today in the most "un concerned way" if that makes sense. I took your advice on saying it's like an allergy. He understands allergies well since he suffers from pollen bad. We showed him the back of his head. He didn't seem to care about any of it and didn't have questions. We went to the mall and spotted a cool Mario bros. baseball hat and brought it up that he can wear one if he wants..if he ever feels shy about it. He said he wasn't allowed in school but we said he can if he chooses. We already talked with his teachers. He thinks it's cool to be the only one in school to wear a hat. We plan not to even bring this up anymore now that we have talked with him and let him come to us. We won't even mention the hat. It's up to him now. He normally doesn't wear a hat so this might help us take ques if he is feeling insecure. Plus, being the only cool kid with a hat might create conversation for him to better understand for himself what is happening as it happens. We will get sunglasses ....again...my boys love wearing shades but end up breaking them soon after somehow. I'll have to buy aviators in bulk. Thanks so much for your advise. Do you find that the sun is harsher on your scalp with no hair growth...is it any different then your back or arms of someone with hair? I'm curious if his hat band will irritate the bald spot skin since there is no follicle left. I supose there are a lot of balding men in the world that wear hats all the time with no complaints.
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