Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Marilyn, Goodness gracious!! This sounds scary for you and obviously, your daughter. Did they take blood? Poor girl!!! Is she sleeping normally? I have one thought and it was triggered by your discussion about OCD/Tourette's/Tic disorder and the upcoming appt. for possible diagnosis: do you think that is pulling her own hair out and has no idea she is doing it? This condition, trichotillomania (I think that is how it is spelled) is related to OCD and if she is under any stress,perhaps this is how it is manifesting. (is is only on her head? how do her eyebrows/eyelashes look?) I am not sure this 2 cents is worth anything and I don't want to add one more thing for you to have to worry/think about, but as you go through the upcoming appts. it might be something to think about (in addition to the possible nutrition connection). And, another 2 cents, endocrinology is always a good place to start, I think, given the multiple connections with these kiddos. good luck and let us know!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Marilyn, Goodness gracious!! This sounds scary for you and obviously, your daughter. Did they take blood? Poor girl!!! Is she sleeping normally? I have one thought and it was triggered by your discussion about OCD/Tourette's/Tic disorder and the upcoming appt. for possible diagnosis: do you think that is pulling her own hair out and has no idea she is doing it? This condition, trichotillomania (I think that is how it is spelled) is related to OCD and if she is under any stress,perhaps this is how it is manifesting. (is is only on her head? how do her eyebrows/eyelashes look?) I am not sure this 2 cents is worth anything and I don't want to add one more thing for you to have to worry/think about, but as you go through the upcoming appts. it might be something to think about (in addition to the possible nutrition connection). And, another 2 cents, endocrinology is always a good place to start, I think, given the multiple connections with these kiddos. good luck and let us know!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Argh! I don't know anything about your questions -- but I sure do feel frustration for you! Hang in there. I look forward to hearing how this turns out. Michele W Aubrie's mom Any help? I have a few new items to ask help with now: hair loss and skeletal issues. When came home from the dorm this Friday (she is a residential student at the Indiana School for the Deaf)she had a bald patch on top of her head. This is a child who has sooooo much hair that normally you can't even see her scalp where the hair is parted! The scalp is not red or irritated looking, and would have definitely told us if she or another student had pulled it out (again...and again...and again we'd have known it!) I just saw her for dinner at the cafeteria on Thursday and did not even notice it - but she was very cranky also, so my attention was more to trying to make her mood improve. She was also very tired, had little appetite, and has been complaining of a stiff/sore neck. When she got ready for bed I had to help her because she didn't want to bend over to remove her pants. She also walked like an old woman - all hunched over and round shouldered. We also noted that her right leg bowed in really badly at the knee toward the left leg. Looked kinda like this: ]( On speaking with my parents, they said I needed to get her checked right away - Friday night - because they live in a county that has lost 2 kids to meningitis very quickly, and there is a student in the dorm who comes from Wabash County! Sooo...off to the ER and I went at 11:00 P.M. and stayed until 3:15 A.M. The doc examined her neck and said if it was meningitis she would be stiff/sore at the back of her neck and she was indicating a specific muscle area that was hurting, not around the spinal column. Also, she had very god range of motion. So the meningitis is ruled out and muscle strain indicated. The doc wanted an x-ray of the knee and it appeared OK. He had asked her to walk for him but she had her pants on and you couldn't see the bowing. Since she was walking OK, he wasn't concerned any more. Said if the radiologist saw anything when checked Saturday, they'd call. It was a bit frustrating because he was real concerned about getting a chest x-ray because sounded " raspy " . I said, " That's normal sounds for her, especially during allergy season " , and he totally ignored me, wasting another 1 1/2 hours to get the chest x-ray, says there looks to be " fuzzies " in one spot, but it looked like " residual chronic stuff " . DUH!!!! They ran pulse-ox for another 40 minutes and finally let us go with that oh-so-specific-warning: If there is an increase in symptoms, or decline in function to please contact them again. No answers to anything. ER doc said the hair loss is probably alopecia, and we'd need to see a dermatologist for that one. One of our church members, who is a nurse, gave me info on alopecia. One thing noted in the alopecia areata (hair loss) information is that most experts think that a person's immune system attacks their own hair folicles for some unknown reason. We've not had real immune issues with , so I'm wondering whether we should see a dermatologist - as recommended for possible topical treatment(s) - or if we need to see an immunologist. Other reasons for hair loss are medication (no changes in 2 months after dc'd the OCD meds), poor nutrition (she eats orally but is supplemented daily with 2 cans Boost w/Protein). I have seen doctors' names/titles noted as specializing in diabetology/immunology, and know that is a sub-specialty of endocrinology. Do you think our Endo who handles 's growth issues would be the one to approach about this? His title is " Pediatric Endocrinologist " and supposedly all the best Indiana ped. endos are at Riley Children's Hospital where we go. We haven't even finished (or really started)to address the OCD/possible Tourettes issues yet, and now this crops up. We have a sleep study coming up April 28th before they send us to anyone to test for Tourettes/tic disorders, in the hopes that maybe a sleep disorder will help with her being so tired then acting out at school. Her teacher says he can handle the OCD with modified activity in the classroom, until she appears overly tired - says by Thursday he can tell if she's slept good during the week in the dorm. We'll be seeing our family doc next week - soon as possible! - but would love to get any input from you all. And can you obtain gammaglobulin (sp?) treatments from a family physician (GP)? As always, looking to the real experts. Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Argh! I don't know anything about your questions -- but I sure do feel frustration for you! Hang in there. I look forward to hearing how this turns out. Michele W Aubrie's mom Any help? I have a few new items to ask help with now: hair loss and skeletal issues. When came home from the dorm this Friday (she is a residential student at the Indiana School for the Deaf)she had a bald patch on top of her head. This is a child who has sooooo much hair that normally you can't even see her scalp where the hair is parted! The scalp is not red or irritated looking, and would have definitely told us if she or another student had pulled it out (again...and again...and again we'd have known it!) I just saw her for dinner at the cafeteria on Thursday and did not even notice it - but she was very cranky also, so my attention was more to trying to make her mood improve. She was also very tired, had little appetite, and has been complaining of a stiff/sore neck. When she got ready for bed I had to help her because she didn't want to bend over to remove her pants. She also walked like an old woman - all hunched over and round shouldered. We also noted that her right leg bowed in really badly at the knee toward the left leg. Looked kinda like this: ]( On speaking with my parents, they said I needed to get her checked right away - Friday night - because they live in a county that has lost 2 kids to meningitis very quickly, and there is a student in the dorm who comes from Wabash County! Sooo...off to the ER and I went at 11:00 P.M. and stayed until 3:15 A.M. The doc examined her neck and said if it was meningitis she would be stiff/sore at the back of her neck and she was indicating a specific muscle area that was hurting, not around the spinal column. Also, she had very god range of motion. So the meningitis is ruled out and muscle strain indicated. The doc wanted an x-ray of the knee and it appeared OK. He had asked her to walk for him but she had her pants on and you couldn't see the bowing. Since she was walking OK, he wasn't concerned any more. Said if the radiologist saw anything when checked Saturday, they'd call. It was a bit frustrating because he was real concerned about getting a chest x-ray because sounded " raspy " . I said, " That's normal sounds for her, especially during allergy season " , and he totally ignored me, wasting another 1 1/2 hours to get the chest x-ray, says there looks to be " fuzzies " in one spot, but it looked like " residual chronic stuff " . DUH!!!! They ran pulse-ox for another 40 minutes and finally let us go with that oh-so-specific-warning: If there is an increase in symptoms, or decline in function to please contact them again. No answers to anything. ER doc said the hair loss is probably alopecia, and we'd need to see a dermatologist for that one. One of our church members, who is a nurse, gave me info on alopecia. One thing noted in the alopecia areata (hair loss) information is that most experts think that a person's immune system attacks their own hair folicles for some unknown reason. We've not had real immune issues with , so I'm wondering whether we should see a dermatologist - as recommended for possible topical treatment(s) - or if we need to see an immunologist. Other reasons for hair loss are medication (no changes in 2 months after dc'd the OCD meds), poor nutrition (she eats orally but is supplemented daily with 2 cans Boost w/Protein). I have seen doctors' names/titles noted as specializing in diabetology/immunology, and know that is a sub-specialty of endocrinology. Do you think our Endo who handles 's growth issues would be the one to approach about this? His title is " Pediatric Endocrinologist " and supposedly all the best Indiana ped. endos are at Riley Children's Hospital where we go. We haven't even finished (or really started)to address the OCD/possible Tourettes issues yet, and now this crops up. We have a sleep study coming up April 28th before they send us to anyone to test for Tourettes/tic disorders, in the hopes that maybe a sleep disorder will help with her being so tired then acting out at school. Her teacher says he can handle the OCD with modified activity in the classroom, until she appears overly tired - says by Thursday he can tell if she's slept good during the week in the dorm. We'll be seeing our family doc next week - soon as possible! - but would love to get any input from you all. And can you obtain gammaglobulin (sp?) treatments from a family physician (GP)? As always, looking to the real experts. Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 RE: Any help? Marilyn, Goodness gracious!! This sounds scary for you and obviously, your daughter. Did they take blood? Poor girl!!! Is she sleeping normally? I have one thought and it was triggered by your discussion about OCD/Tourette's/Tic disorder and the upcoming appt. for possible diagnosis: do you think that is pulling her own hair out and has no idea she is doing it? This condition, trichotillomania (I think that is how it is spelled) is related to OCD and if she is under any stress,perhaps this is how it is manifesting. (is is only on her head? how do her eyebrows/eyelashes look?) Pam: Surprised me they didn't at least do a blood draw. Another thing in the alopecia literature was about iron deficiency. Blood test would have shown that. One time we had a febrile seizure scare (it's been a long time - was around 4 yrs. old) and they did a spinal tap to check for meningitis. Really surprised me there were no labs done this time around. I was expecting to have to try to explain to about a spinal tap. Wasn't looking forward to that, since I'd have had to sign it to her, and no idea how. She slept pretty hard Friday night/Sat. morning - so did I after so long in ER! She sleeps pretty well mosst of the time, but I think she could have some apnea occurring again, thus the sleep study. Also, her teacher asked if we could make the dorm staff adhere to a sleep requirement for her. When there have been events in the dorm during the evening, sometimes she is so wound up she might not go to sleep for a few hours after the event is over and they have all gone to bed. For example: For Valentine's Day they had a party that ended at 9:30 p.m. They were in bed by 10:00 - too late for elementary aged kiddos that are awakened at 6:30 a.m. - but was up until at least 11:45, and probably up and down all night after that. No one has actually seen her pulling hair out. But...she has been into putting her hair in a ponytail lately and I find elastic bands with lots of hair in them. Maybe that is the problem. The alopecia info stated that as a possibility - hairstyling products or pulling hair into tight styles - and called it traction alopecia. Can't tell if it just comes out on it's own with the bands, or if the bands might be actualy pulling it out. I will keep the other OCD-related issue in mind, though. We've been back out of the acute care problems so long now, it does get a bit scary. Thanks for the input. Knew I could count on the list and you for information/issues to check out! Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Marilyn, This reminds me in some ways of when Dylan was losing his hair for about a year and a half. It started with one spot that looked like the hair had come out by the roots. A nice round circle with no hair and I could feel a lump underneath it. The hair loss spread along the suture lines of his scalp. He had thick beautiful hair and it was very worrisome to me as to why he was losing it. What was it a symptom of? He saw dermatology numerous times, had biopsies, was diagnosed with another syndrome where the hair falls out easily. Dylan had also had a very bad torticollis from birth. By circumstance we started Dylan's cranial sacral work then for the neck. Within 3 days his hair started to grow back. With the age of and the OCD stuff, the compulsive hair pulling is a strong possibility, but because you mention the other skeletal issues, it may not hurt to see a DO or other provider to see if cranial sacral work makes a difference. I hope you find the answers you need soon. Kim > I have a few new items to ask help with now: hair loss and skeletal issues. > > When came home from the dorm this Friday (she is a residential > student at the Indiana School for the Deaf)she had a bald patch on top of > her head. This is a child who has sooooo much hair that normally you can't > even see her scalp where the hair is parted! The scalp is not red or > irritated looking, and would have definitely told us if she or > another student had pulled it out (again...and again...and again we'd have > known it!) I just saw her for dinner at the cafeteria on Thursday and did > not even notice it - but she was very cranky also, so my attention was more > to trying to make her mood improve. > > She was also very tired, had little appetite, and has been complaining of a > stiff/sore neck. When she got ready for bed I had to help her because she > didn't want to bend over to remove her pants. She also walked like an old > woman - all hunched over and round shouldered. We also noted that her right > leg bowed in really badly at the knee toward the left leg. Looked kinda like > this: ]( > > On speaking with my parents, they said I needed to get her checked right > away - Friday night - because they live in a county that has lost 2 kids to > meningitis very quickly, and there is a student in the dorm who comes from > Wabash County! > > Sooo...off to the ER and I went at 11:00 P.M. and stayed until 3:15 > A.M. The doc examined her neck and said if it was meningitis she would be > stiff/sore at the back of her neck and she was indicating a specific muscle > area that was hurting, not around the spinal column. Also, she had very god > range of motion. So the meningitis is ruled out and muscle strain > indicated. The doc wanted an x-ray of the knee and it appeared OK. He had > asked her to walk for him but she had her pants on and you couldn't see the > bowing. Since she was walking OK, he wasn't concerned any more. Said if > the radiologist saw anything when checked Saturday, they'd call. It was a > bit frustrating because he was real concerned about getting a chest x-ray > because sounded " raspy " . I said, " That's normal sounds for her, > especially during allergy season " , and he totally ignored me, wasting > another 1 1/2 hours to get the chest x-ray, says there looks to be " fuzzies " > in one spot, but it looked like " residual chronic stuff " . DUH!!!! They ran > pulse-ox for another 40 minutes and finally let us go with that > oh-so-specific-warning: If there is an increase in symptoms, or decline in > function to please contact them again. No answers to anything. > > ER doc said the hair loss is probably alopecia, and we'd need to see a > dermatologist for that one. > > One of our church members, who is a nurse, gave me info on alopecia. One > thing noted in the alopecia areata (hair loss) information is that most > experts think that a person's immune system attacks their own hair folicles > for some unknown reason. We've not had real immune issues with , so > I'm wondering whether we should see a dermatologist - as recommended for > possible topical treatment(s) - or if we need to see an immunologist. Other > reasons for hair loss are medication (no changes in 2 months after dc'd the > OCD meds), poor nutrition (she eats orally but is supplemented daily with 2 > cans Boost w/Protein). > > I have seen doctors' names/titles noted as specializing in > diabetology/immunology, and know that is a sub-specialty of endocrinology. > Do you think our Endo who handles 's growth issues would be the one > to approach about this? His title is " Pediatric Endocrinologist " and > supposedly all the best Indiana ped. endos are at Riley Children's Hospital > where we go. > > We haven't even finished (or really started)to address the OCD/possible > Tourettes issues yet, and now this crops up. We have a sleep study coming > up April 28th before they send us to anyone to test for Tourettes/tic > disorders, in the hopes that maybe a sleep disorder will help with her being > so tired then acting out at school. Her teacher says he can handle the OCD > with modified activity in the classroom, until she appears overly tired - > says by Thursday he can tell if she's slept good during the week in the > dorm. > > We'll be seeing our family doc next week - soon as possible! - but would > love to get any input from you all. And can you obtain gammaglobulin (sp?) > treatments from a family physician (GP)? As always, looking to the real > experts. > > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Alopecia areata is actually not too uncommon. It can be identified by many small hairs called exclaimation point hairs at the periphery of the patch. It is an immune response to the hair follicle causing them to stop growing hair. Normally, after several weeks to months, the hairs will resume their growth. Over the counter minoxidil (Rogaine) can help. Presciption medications include topical or injected steroids. In a few situations, the hair loss can occur in other areas but this is not as common. The hair growth can take several weeks to months to return. It probably would be a good idea to have a dermatologist evalute the area as there can be some other causes of this type of hair loss such as a skin limited fungal infection. Generally, alopecia areata is not associated with any nutritional deficiencies and doesnt have systemic implications to my knowledge. > I have a few new items to ask help with now: hair loss and skeletal issues. > > When came home from the dorm this Friday (she is a residential > student at the Indiana School for the Deaf)she had a bald patch on top of > her head. This is a child who has sooooo much hair that normally you can't > even see her scalp where the hair is parted! The scalp is not red or > irritated looking, and would have definitely told us if she or > another student had pulled it out (again...and again...and again we'd have > known it!) I just saw her for dinner at the cafeteria on Thursday and did > not even notice it - but she was very cranky also, so my attention was more > to trying to make her mood improve. > > She was also very tired, had little appetite, and has been complaining of a > stiff/sore neck. When she got ready for bed I had to help her because she > didn't want to bend over to remove her pants. She also walked like an old > woman - all hunched over and round shouldered. We also noted that her right > leg bowed in really badly at the knee toward the left leg. Looked kinda like > this: ]( > > On speaking with my parents, they said I needed to get her checked right > away - Friday night - because they live in a county that has lost 2 kids to > meningitis very quickly, and there is a student in the dorm who comes from > Wabash County! > > Sooo...off to the ER and I went at 11:00 P.M. and stayed until 3:15 > A.M. The doc examined her neck and said if it was meningitis she would be > stiff/sore at the back of her neck and she was indicating a specific muscle > area that was hurting, not around the spinal column. Also, she had very god > range of motion. So the meningitis is ruled out and muscle strain > indicated. The doc wanted an x-ray of the knee and it appeared OK. He had > asked her to walk for him but she had her pants on and you couldn't see the > bowing. Since she was walking OK, he wasn't concerned any more. Said if > the radiologist saw anything when checked Saturday, they'd call. It was a > bit frustrating because he was real concerned about getting a chest x-ray > because sounded " raspy " . I said, " That's normal sounds for her, > especially during allergy season " , and he totally ignored me, wasting > another 1 1/2 hours to get the chest x-ray, says there looks to be " fuzzies " > in one spot, but it looked like " residual chronic stuff " . DUH!!!! They ran > pulse-ox for another 40 minutes and finally let us go with that > oh-so-specific-warning: If there is an increase in symptoms, or decline in > function to please contact them again. No answers to anything. > > ER doc said the hair loss is probably alopecia, and we'd need to see a > dermatologist for that one. > > One of our church members, who is a nurse, gave me info on alopecia. One > thing noted in the alopecia areata (hair loss) information is that most > experts think that a person's immune system attacks their own hair folicles > for some unknown reason. We've not had real immune issues with , so > I'm wondering whether we should see a dermatologist - as recommended for > possible topical treatment(s) - or if we need to see an immunologist. Other > reasons for hair loss are medication (no changes in 2 months after dc'd the > OCD meds), poor nutrition (she eats orally but is supplemented daily with 2 > cans Boost w/Protein). > > I have seen doctors' names/titles noted as specializing in > diabetology/immunology, and know that is a sub-specialty of endocrinology. > Do you think our Endo who handles 's growth issues would be the one > to approach about this? His title is " Pediatric Endocrinologist " and > supposedly all the best Indiana ped. endos are at Riley Children's Hospital > where we go. > > We haven't even finished (or really started)to address the OCD/possible > Tourettes issues yet, and now this crops up. We have a sleep study coming > up April 28th before they send us to anyone to test for Tourettes/tic > disorders, in the hopes that maybe a sleep disorder will help with her being > so tired then acting out at school. Her teacher says he can handle the OCD > with modified activity in the classroom, until she appears overly tired - > says by Thursday he can tell if she's slept good during the week in the > dorm. > > We'll be seeing our family doc next week - soon as possible! - but would > love to get any input from you all. And can you obtain gammaglobulin (sp?) > treatments from a family physician (GP)? As always, looking to the real > experts. > > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@i... > oganr@i... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Boy, Marilyn, Just when you think you are out of the woods, something else pops up--for everyone here. Let us know what happens--and if you push for the bloods--THAT would be an interesting story to see if anything turns up. And... good luck with the bedtime curfew at school--I'm with you--9:30 is too late, especially after a party! YIKES!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Oh, yeah...we have a case conference this week too. And I'm not even close to being ready! CAn you say " stressed " ?! Surprised MY hair isn't coming out!!! Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Just a quickie. In the past (knock on wood [there's my own OCD rearing its head]), , too has had bald patches. At times we saw her pulling hair; at others (at least at home, i.e., when not at Perkins), I'd find the hair in the tub or see her yanking in her sleep. If the latter is the case, your daughter could not report it to you. There's a name for this, but I just can't remember it now. The Perkins' solution was to make sure that got a cute but really short " do " whenever the problem appeared. I don't think we've seen it in over a year. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 hope all goes well--and you can " de-stress " soon! RE: Any help? > Oh, yeah...we have a case conference this week too. And I'm not even close > to being ready! > CAn you say " stressed " ?! Surprised MY hair isn't coming out!!! > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
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