Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hello Everyone and Welcome to all the new comers. I have been mostly lurking, just not enough time in a day for me. , Vinnie has Alopecia. He is totally bald, no hair brows and now losing his eye lashes. I took him to a dermatogolist last year when he only had some spots missing. I pretty much knew what it was before we went. We tried the topical steriods, but it burns and irrates him. So, I didn't see any point in putting him through that anymore. Hope everyone is well and loved all the pictures! ~, moma to (DS) & Sloan {3 1/2 years old} --- Rusty and Medrano <rmedrano@...> wrote: > Hey... I am looking for any info on the hair loss > thing.. can't remember what it is called... > something apleico? something in that nature.. > > I need so web-site.... anyone out there.. please > help me.. > > thanks.. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 Hi , Alopecia Areata (AA) is hair loss seen in DS children. There are two different kinds. It is an autoimmune disease. Our kids are more likely to have these autoimmune diseases. AA can cause bald spots on the scalp or complete loss of scalp and facial hair. In some cases even body hair is lost. Some children may also have pitting in their nails. It is hard to treat in DS children because steroids are just about the only way to treat it and has aggrivating side effects. Our kids can't tolerate them. Are you seeing bald spots? I would start treating now if you can. Also. if I remember right, you have a child with eczema. My has it, well I think that's what it is. How do you keep it under control? I have been bathing her in mild cleanser and soaking her down in Cetaphil lotion.. I guess I need to take her to the doctor and get some meds. Take care, Mom to Hannah and DS age 6 Rusty and Medrano <rmedrano@...> wrote: Hey... I am looking for any info on the hair loss thing.. can't remember what it is called... something apleico? something in that nature.. I need so web-site.... anyone out there.. please help me.. thanks.. http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 Cyn, Do you suspect one of your kids has AA? Here is a cut and paste of one of my old posts somewhere else: " Alopecia Areata (AA), which is more common in children with DS than the " regular " population. It is a specific type of hair loss characterized by sudden appearing well-defined bald spots, without a rash or bumps. In a matter of fact, 10% of all people with DS will develop AA at some point throughout their lives. Thinning of the hair maybe present, as well as are short stubby hairs called " exlamation point hairs. " The hair around the bald spots are probably easy to pull out as well. Total loss of the hair on the face and scalp is called " Alopecia totalis " and hair loss on the body and scalp is called " Alopecia universalis. " The reason why a person develops AA is unknown. The cause is unknown. However, some MDs think it maybe an immune response to the hair follicles. It can usually be diagnosised by a physical exam. If there is any doubt, a scalp biopsy will confirm the diagnosis. Treatment is usually cream. Topical steroids, or anthralin are often used in children with DS and AA. Anthralin may stain the scalp brown. But be careful ! It also stains sheets, toys, clothing, etc !! Steroids can also be injected at 1 to 2 month intervals, but this is too painful for most children. " The way one can usually tell the difference between AA and other hair loss (and there are tons of reasons for hair loss... some more common in kids with DS!!!) is that AA is one of the very few hair losses without a rash, redness, or bumps. If bumps or a rash is present it maybe just a yeast or bacterial skin infection (which is more common in kids with eczema, which I believe Dayton has, right?). Hope this helps some. Let me know if you need more info. Also, is is listening... her handsome lil' Vinnie has AA and she can help! Cheers! Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 In a message dated 5/19/2003 4:09:07 AM Pacific Daylight Time, s4052475@... writes: > P.S The pain in my back has stopped. I did get my labs back though. Low on > iron and B12, VERY low on Vit D, and high parathyroid. Doc prescribed > liquid iron, B12, Vits A, D, E and calcium. Hi Kristy! Were you taking ADEKs before your labs? I am just curious because NOW you will be taking something of that sort! If you are not familiar with ADEKs, they are a water miscible? (I think that is the word) vitamin A, D, E and K that is chewable and some doctors recommend them from after the first month for DS patients. Hugs and blessings, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 Ann No I wasnt really taking anything let alone ADEKs. So I guess I will see if they help.. Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 > ya know what? my hair is still all attached to my head. im 4 months > out. doesnt it usually start about now?/ > > vicki > who bought some really cute hats to prepare for baldness LOL! You asked for it, now you will get it! marta I only lost hair for six weeks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 > > ya know what? my hair is still all attached to my head. im 4 > months > > out. doesnt it usually start about now?/ > > > > vicki > > who bought some really cute hats to prepare for baldness > > LOL! You asked for it, now you will get it! > > marta > I only lost hair for six weeks. ********************************** i jinxed myself huh......lol. i dont know anyone who hasnt lost their hair so im expecting it. you lost for 6 weeks?? how far out were you when it started?? vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 > i jinxed myself huh......lol. i dont know anyone who hasnt lost > their hair so im expecting it. you lost for 6 weeks?? how far out > were you when it started?? > > vicki I think four months sounds about right. I didnt' keep a diary and don't remember very well, but that sounds right. I was just getting nervous when it stopped. It got mighty thin, I could see my head through my hair easily. You know how short I wear my hair so you know it didnt' take long for all the short hairs to catch up. marta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 > i jinxed myself huh......lol. i dont know anyone who hasnt lost > their hair so im expecting it. you lost for 6 weeks?? how far out > were you when it started?? > > vicki =============== Vicki i didn't lose a hair on my head the first 4 months...I was beginning to think I had dodged that bullet....then boing, boing they started popping out of my head...I thought my bathroom floor was a made of hair...I lost hair from just past 4 months to 8 months post-op....I lost at least 1/2 the volume of hair on my head..lucky me I had really thick hair and no body but me could tell the difference. I've regained about 80% of what I lost back. I seem to recall your hair being real thick....you should be fine. It becomes more of a pain in the butt always having loose hair flying into everything.... Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Shucky, If you are looking for something to help with hair loss, I have read in several places that Polysorbate 80 massaged into the scalp for 10 mins before washing the hair, is supposed to help with hair loss, and actually help some hair to regrow.... If you are interested in the info.....email me offlist, and I will find all the links, and pass them on to you! HTH a bit! Candy in AL cdlucas@... Hair Loss > > > There's a discussion at another site on hair loss. One of the participants > says she got a book on hair loss written by a physician which tells you > how > to prepare herbal tinctures to add to shampoos, and which says sodium > lauryl > sulphate is one of the big environmental contributors (all the old-timers > know how I feel about that, anyway). > > Does anyone have this book, or know what the tinctures are made from? > > Also, I haven't been able to find over-the-counter progesterone cream in > Ontario. I'm assuming it is not available, but if any of the good > herbalists > out there know how much wild yam to use to approach standardized dosages, > I > d sure love to hear about it. > > Shucky 8-) + > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Candy - why don't you post those links here, I bet there are alot of people intersted. My husband is loosing hair quickly! Sagescript Institute, LLC > > If you are looking for something to help with hair loss, I have read in > several places that Polysorbate 80 massaged into the scalp for 10 mins > before washing the hair, is supposed to help with hair loss, and actually > help some hair to regrow.... > > If you are interested in the info.....email me offlist, and I will find all > the links, and pass them on to you! > > HTH a bit! > Candy in AL > cdlucas@f... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 It would be important to check her daily total protein intake to see if it even comes close to 60g daily. She may work, but she still needs to work needed foods and beverages in. My patients start their work days by drinking their 1 c. of high-protein supplement, then waiting about 1/2 hour, then eating a Breakfast that contains a high-protein food. If nothing else, she could nibble a slice of cheese or some peanut butter as she dashed out the door. Each one cup of milk has at least 8 g of protein. She needs liquids daily, and some of those liquids can be milk or soy milk. My patients also tolerate "high-protein" milk, our familiar 1 c. NFDM added to 1 qt of skim or 1% milk. It boosts the protein to about 14 g/cup. It boosts the carb, too, but they tolerate it when it is consumed slowly. They also tolerate the simple SF CIB well. Some of my patients who cannot tolerate the more potent high-protein liquid supplements do just fine with 3 c. of CIB daily in addition to about 4 oz. of soft-cooked meat, fish, or poultry. Discussion between pts has mentioned selenium supplementation, but I have not seen recommendations. Maybe others will share in this area. I have read suggestions for zinc supplementation, but not specific levels. If anyone has ever taken zinc supplements, they will be able to attest to the difficulty in tolerating them--they cause GI upset. I'd check the amount in any supplement she may be taking--it may be close to 25 mg. I'm not sure, from a clinical perspective, that I'd go much beyond that. I've seen 50mg daily cause distress in a large male outpatient that was not even a bariatric surgical patient. Cold-eeze lozengers also change taste perception. Sometimes it is so difficult to get pts to successfully eat what they need, that I'd hate to jeoporadize it w/zinc supplementation. Kim Knopp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Sure Debbie, unfortunately I have only had one response which was posted to the list-serve. I certainly will forward any information I find. Take care BethDebbie Pfeiffer <Debbie_Pfeiffer@...> wrote: Beth, I was going to ask the same question, regarding any recommendations for Biotin and dosage amount. I received information from a presentation given by a dietitian that did recommend megadoes daily of Biotin for the 1st y6 months post-op for hair loss but would like to know if there is a specific amount of biotin being recommended. If you do get replies that are not posted to the web site can you forward to me. Thank you. Debbie Pfeiffer Dkpfeiff40@... From: Beth Taschuk [mailto:bethhanne@...] Sent: Sunday, January 16, 2005 7:54 PM Subject: hair loss Good Evening.. I have a patient S/P revisional gastric bypass 10/04 who called me this weekend in tears because of excessive hair loss. She reports her hair is coming out in "clumps" leaving her scalp exposed. She is taking her MVI and eating her protein foods first. Numerous supplements have been trialed without success. She works full time and has difficulty getting her scheduled snacks in. Are your patients taking Biotin and if so, what is the recommended dosage? Thank you for your time and assistance. Beth Taschuk RD St. Luke Hospitals Do you ? - now with 250MB free storage. Learn more. --------------------------------------------------------------------------------------------------------------------This email and any files transmitted with it are confidential andintended solely for the use of the individual or entity to whomthey are addressed.If you have received this email in error please notify theoriginator of the message.Any views expressed in this message are those of the individualsender, except where the sender specifies and with authority,states them to be the views of Deaconess Health System.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Pretty much anyone who loses weight rapidly (with or without surgery) will experience hair loss. 99% of patients experience some type of loss. I tell our patients they can try add'l zinc & biotin and make sure they are getting their daily protein, but the hair loss still happens regardless. The add'l vitamins & adequate protein just keep it from being worse than it could be. They have to tough it out for a few months. Kristyn Lassek Omaha, NEmelissa miceli <melmiceli@...> wrote: this is great! thanks..the only thing i have read is that biotin helps but i cant remember at this time how much.. please post all responses thanks melissa"Laschkwitsch, :LPH Obes Inst" <KLaschke@...> wrote: I have had a million questions about hair loss and found some mixed messages in the limited research that I have done. I have one chapter from a text book titled Surgery for the morbidly obese which discusses vitamins after surgery ( The article was in a file of a previous employee so I don't know much about the book!) It suggest the following in addition to a daily multi-vitamin for hair loss: Zinc chelate 15 mg qd Copper chelate 1 mg qd Silica 20 mg qd Vitamin C 2000 mg qd Vitamin A 5000 IU qd Flaxseed oil 15 cc (1 Tbsp) qd (for essential fatty acids) I know traditionally hair loss can be caused by essential fatty acid deficiency but I wonder if my patients really have that as they do not have the dry flaky skin or infections, decreased wound healing etc. that would go along with that. I wonder what others thoughts are on the above vitamin regimen and what if anything you all tell patients about hair loss post-op. I appreciate any help with this matter! Laschkewitsch RD LDDietitian, Legacy Obesity Institute IMPORTANT NOTICE: This communication, including any attachment, contains information that may be confidential or privileged, and is intended solely for the entity or individual to whom it is addressed. If you are not the intended recipient, you should contact the sender and delete the message. Any unauthorized disclosure, copying, or distribution of this message is strictly prohibited. Nothing in this email, including any attachment, is intended to be a legally binding signature. Miceli MA, RD, LDCenter for Weight ManagementGalveston, TX 77554409-747-8962memiceli@... Do you ? Small Business - Try our new resources site! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 I found the following website: http://www.ahlc.org/female.htm which is from the American Hair Loss Council. They address some of the causes such as surgery, illness, anemia, rapid weight change which these individuals are going through. , " Laschkwitsch, :LPH Obes Inst " <KLaschke@L...> wrote: > I have had a million questions about hair loss and found some mixed messages > in the limited research that I have done. I have one chapter from a text > book titled Surgery for the morbidly obese which discusses vitamins after > surgery ( The article was in a file of a previous employee so I don't know > much about the book!) It suggest the following in addition to a daily > multi-vitamin for hair loss: > > Zinc chelate 15 mg qd > Copper chelate 1 mg qd > Silica 20 mg qd > Vitamin C 2000 mg qd > Vitamin A 5000 IU qd > Flaxseed oil 15 cc (1 Tbsp) qd (for essential fatty acids) > > I know traditionally hair loss can be caused by essential fatty acid > deficiency but I wonder if my patients really have that as they do not have > the dry flaky skin or infections, decreased wound healing etc. that would go > along with that. I wonder what others thoughts are on the above vitamin > regimen and what if anything you all tell patients about hair loss post-op. > I appreciate any help with this matter! > > Laschkewitsch RD LD > Dietitian, Legacy Obesity Institute > > > > > > IMPORTANT NOTICE: This communication, including any attachment, contains > information that may be confidential or privileged, and is intended solely > for the entity or individual to whom it is addressed. If you are not the > intended recipient, you should contact the sender and delete the message. > Any unauthorized disclosure, copying, or distribution of this message is > strictly prohibited. Nothing in this email, including any attachment, is > intended to be a legally binding signature. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 I found the following website: http://www.ahlc.org/female.htm which is from the American Hair Loss Council. They address some of the causes such as surgery, illness, anemia, rapid weight change which these individuals are going through. , " Laschkwitsch, :LPH Obes Inst " <KLaschke@L...> wrote: > I have had a million questions about hair loss and found some mixed messages > in the limited research that I have done. I have one chapter from a text > book titled Surgery for the morbidly obese which discusses vitamins after > surgery ( The article was in a file of a previous employee so I don't know > much about the book!) It suggest the following in addition to a daily > multi-vitamin for hair loss: > > Zinc chelate 15 mg qd > Copper chelate 1 mg qd > Silica 20 mg qd > Vitamin C 2000 mg qd > Vitamin A 5000 IU qd > Flaxseed oil 15 cc (1 Tbsp) qd (for essential fatty acids) > > I know traditionally hair loss can be caused by essential fatty acid > deficiency but I wonder if my patients really have that as they do not have > the dry flaky skin or infections, decreased wound healing etc. that would go > along with that. I wonder what others thoughts are on the above vitamin > regimen and what if anything you all tell patients about hair loss post-op. > I appreciate any help with this matter! > > Laschkewitsch RD LD > Dietitian, Legacy Obesity Institute > > > > > > IMPORTANT NOTICE: This communication, including any attachment, contains > information that may be confidential or privileged, and is intended solely > for the entity or individual to whom it is addressed. If you are not the > intended recipient, you should contact the sender and delete the message. > Any unauthorized disclosure, copying, or distribution of this message is > strictly prohibited. Nothing in this email, including any attachment, is > intended to be a legally binding signature. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Somebody else posted on this recently on another list - I forget which and Biotin Deficiency was suggested. There is info here which mentions the link with Alopecia http://www.anyvitamins.com/biotin-info.htm the other thing mentioned was Selenium toxicity Toxicity and symptoms of high intake As mentioned earlier - selenium is toxic and too large quantities may result in hair loss, tooth decay, brittle nails, white spots, poor appetite, sour taste in the mouth, loss of feeling in the hands and feet, change in skin pigmentation and the breath may have a garlic smell. from here http://www.anyvitamins.com/selenium-info.htm This says toxic doses of Vitamin A may cause it http://www.dermatologychannel.net/alopecia/causes.shtml http://www.afraidtoask.com/hair/causesofhairloss.html HTH MAndi in Dorset My 7yr old has developed bald circles in his hair, just like Alopecia, anyone know what might be causing this? Iv'e looked it up on the web but nothing seems to apply. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Thanks Mandi, lots to think about there, Vit A is interesting because recent tests done on NHS showed high Vit A and D, and gastro said she would not wish to see them any higher! Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Mine fell out in spots so I never went totally bald, I had some bald spots and some thin spots in the front & top (ears up). Most of the back stayed put except for a few spots that were covered pretty well. And it wasn’t all at once. One spot would be growing back in while another was still falling out. I think it was more noticeable to me than others – that’s what they told me at least. But when it grew back it came back pure white – you can see it in to photos. I gets lots of compliments now. Re: Good morning Can you give me an idea how much hair I would be likely to lose? I don't mind the baldy look, but I would HATE for it to be " clumpy " . Love, Di I'm not where I want to be, but I'm well on my way godsowndi@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Mine fell out in spots so I never went totally bald, I had some bald spots and some thin spots in the front & top (ears up). Most of the back stayed put except for a few spots that were covered pretty well. And it wasn’t all at once. One spot would be growing back in while another was still falling out. I think it was more noticeable to me than others – that’s what they told me at least. But when it grew back it came back pure white – you can see it in to photos. I gets lots of compliments now. Re: Good morning Can you give me an idea how much hair I would be likely to lose? I don't mind the baldy look, but I would HATE for it to be " clumpy " . Love, Di I'm not where I want to be, but I'm well on my way godsowndi@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Have you tried googling it? What supplements/treatments are you on? Natasa > > We are seeing some hair loss again, similar to male pattern baldness at > the crown, nowhere else, the rest of his hair is lovely, any thought > please. > TIA > Vicky > xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Thanks Natasa, Iv'e done a search and come up with 2 possibles, hypothyroidism and a fungal scalp condition, the second would tie in with his recent boil on his scalp, although nowhere near the bald patch. I will go and check out the other symptoms of hypothyroidism, seen it mentioned here before. He is on, Selenium, Probios, Colostrum. MB12, L Glutamine, Taurine, Vit C, Magnesium, Folinic Acid, Calcium, Zinc, Vit E and Enzymes. Vicky xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Just looked at hypothyroidism and have found short stature, is only on the 2nd percentile for height, late eruption of teeth, his teeth didn't come through until last Spring when he turned 8 yrs old, severe mental retardation, has severe LD, now I'm not saying he has this condition, but with all these symptoms am I half crazy of shouldn't his paed have ruled it out already. Where can I have him tested for this, I will assume his Doctors won't want to order a test. TIA Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 In a message dated 22/02/2006 07:01:24 GMT Standard Time, MaddiganV@... writes: Where can I have him tested for this, I will assume his Doctors won't want to order a test. >>>Ask your GP - you want full thyorid function tests - TSH, T4 and T3 - the results will come back normal but because they don't do children ranges but I have them saved somewhere. If I can;t find them then will know I am sure. worth a shot - take written details of why you want this Mandi in Dorset Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Thanks Ladies, I will make an appointment with G.P. and ask for the tests you mentioned, I don't know how many times I argued with 's Gastro about his tumbling down from 25th to 2nd percentile for height and his lack of teeth, always the same response he was healthy and wouldn't be as active if anything were seriously wrong! Vicky xx Quote Link to comment Share on other sites More sharing options...
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