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Betty
May 28, 2008, 7:42:14 AM5/28/08
to Acrodermatitis Enteropathica Circle
Hello,
my name is Betty. I'm from NorthGermany and my youngest daughter Mia
got the diagnosis AE.
I'm verry happy to find this little group, 'cause I need every little
information oder knowledge I can find.
Mia is 2 years and 4 month old. She stopped breastfeeding a few days
after her second birthday.
Her skin was very bad, her hair was "funny", she got Candida in her
mouth, she stopped eating, had obstipation.... Our Doc was very fast
with his Diagnosis. But now i'm looking, looking,
looking....
Theres's a lot more to tell about her.....
Greetings, Betty
my name is Betty. I'm from NorthGermany and my youngest daughter Mia
got the diagnosis AE.
I'm verry happy to find this little group, 'cause I need every little
information oder knowledge I can find.
Mia is 2 years and 4 month old. She stopped breastfeeding a few days
after her second birthday.
Her skin was very bad, her hair was "funny", she got Candida in her
mouth, she stopped eating, had obstipation.... Our Doc was very fast
with his Diagnosis. But now i'm looking, looking,
looking....
Theres's a lot more to tell about her.....
Greetings, Betty
grape...@gmail.com
May 28, 2008, 2:04:28 PM5/28/08
to Acrodermatitis Enteropathica Circle
Hi Betty!
Welcome to this little group. I hope that it grows and more people
tell their stories, offer insight, and support each other. I'm glad
you joined. If you haven't already, take a look at some of the links
for info on AE.
Is Mia taking zinc supplements? That is really the only treatment I
know of plus the occasional ointments for stubborn dermatitis. Claire
takes 30mg zinc gluconate twice a day and we use Aveeno hydrocortosone
often, as well as a simple zinc ointment. For the really stubborn
stuff we have to get Rx. I hate to use a lot of chemicals and harsh
ingredients so I make a lavender lip balm for her and try to keep the
ointments to a minimum if I can.
It's funny because she is a huge beef eater and has been since weaned
at 2 years. She naturally craves it and it happens to contain a lot
of zinc. Thought that was interesting. Guess the body knows what it
needs.
Please feel free to tell more.
April
Welcome to this little group. I hope that it grows and more people
tell their stories, offer insight, and support each other. I'm glad
you joined. If you haven't already, take a look at some of the links
for info on AE.
Is Mia taking zinc supplements? That is really the only treatment I
know of plus the occasional ointments for stubborn dermatitis. Claire
takes 30mg zinc gluconate twice a day and we use Aveeno hydrocortosone
often, as well as a simple zinc ointment. For the really stubborn
stuff we have to get Rx. I hate to use a lot of chemicals and harsh
ingredients so I make a lavender lip balm for her and try to keep the
ointments to a minimum if I can.
It's funny because she is a huge beef eater and has been since weaned
at 2 years. She naturally craves it and it happens to contain a lot
of zinc. Thought that was interesting. Guess the body knows what it
needs.
Please feel free to tell more.
April
BettyB...@aol.com
May 28, 2008, 2:34:57 PM5/28/08
to aeci...@googlegroups.com
Hello,
first, I'm so sorry about my bad english! I trained too little the last
years!
Mia has also Neurodermitis. If her skin is very bad, we use a lotion with
omega12.
The skinsigns of AE healed very fast after the zincsupplement. She gets 6mg
per day. After stopping fullbreastfeeding she was addicted to eggs. She loved to
have three eggs for breakfast. After starting with zinc, she stopped eggeating!
;-))
Mia has something like convulsions / dizzy spells. The EEG last year was
"normal". Do you know something about a possible connection to AE?
In the next few weeks she needs a operation for her ears because of the
chronic liquid in her ear. Do you know something about possible risks under
anesthesia?
I read the few information about AE. Is it real, that there are no more
problems after starting with zinc?
I'm so glad to find you! Where do you come from?
Greetings, Betty
grape...@gmail.com
May 28, 2008, 3:25:08 PM5/28/08
to Acrodermatitis Enteropathica Circle
Betty,
Don't apologize for your English, it's just fine!
I looked up Neurodermatitis. Is that severe itching that causes skin
to get thick and dark? Maybe oatmeal baths with a couple drops of
lavender oil or tea tree oil would help sooth the itch. I don't know
if you have it there, but Aveeno Eczema Care lotion is great for
soothing and healing badly irritated and itchy skin. The Omega12
lotion sounds promising too. I'll have to look that up.
The AE symptoms went away for Claire too about 2 weeks after starting
zinc. She was 4 years old and had suffered for 2 years since weaning
so it took a while for things to level out. Claire was addicted to
eggs in the morning too! She hates them now and has ever since
starting zinc. Pretty strange and coincidental, huh?
AE can cause neurological damage if left untreated but it doesn't
sound like Mia went very long untreated so I'm not sure if it explains
the convulsions. Sometimes rapid growth can cause some weird
behaviors. I'd ask your dr about that. Maybe it will go away in
time.
As for anesthesia, I know of no additional risks. Claire recently had
surgery (to repair a broken finger) and did just fine so I'm sure Mia
will do fine with her ear surgery too.
After starting zinc, there should be no further problems except mild
rashes or relapses here and there. People with AE go on to lead
perfectly normal lives and there is no shortening of life span.
Puberty, sickness, pregnancy, etc. may cause the body to need more
zinc so dosage may need to be increased during those times. We
haven't gotten there yet so we'll cross that bridge later.
I'm in the U.S. in Indiana.
April
Don't apologize for your English, it's just fine!
I looked up Neurodermatitis. Is that severe itching that causes skin
to get thick and dark? Maybe oatmeal baths with a couple drops of
lavender oil or tea tree oil would help sooth the itch. I don't know
if you have it there, but Aveeno Eczema Care lotion is great for
soothing and healing badly irritated and itchy skin. The Omega12
lotion sounds promising too. I'll have to look that up.
The AE symptoms went away for Claire too about 2 weeks after starting
zinc. She was 4 years old and had suffered for 2 years since weaning
so it took a while for things to level out. Claire was addicted to
eggs in the morning too! She hates them now and has ever since
starting zinc. Pretty strange and coincidental, huh?
AE can cause neurological damage if left untreated but it doesn't
sound like Mia went very long untreated so I'm not sure if it explains
the convulsions. Sometimes rapid growth can cause some weird
behaviors. I'd ask your dr about that. Maybe it will go away in
time.
As for anesthesia, I know of no additional risks. Claire recently had
surgery (to repair a broken finger) and did just fine so I'm sure Mia
will do fine with her ear surgery too.
After starting zinc, there should be no further problems except mild
rashes or relapses here and there. People with AE go on to lead
perfectly normal lives and there is no shortening of life span.
Puberty, sickness, pregnancy, etc. may cause the body to need more
zinc so dosage may need to be increased during those times. We
haven't gotten there yet so we'll cross that bridge later.
I'm in the U.S. in Indiana.
April
BettyB...@aol.com
May 28, 2008, 3:49:27 PM5/28/08
to aeci...@googlegroups.com
In einer eMail vom 28.05.2008 21:25:42 Westeuropäische Normalzeit schreibt
grape...@gmail.com:
Hello again,
thanks for your answer.
Neurodermitis is a atopic eczema. Some pictures are here: http://de.wikipedia.org/wiki/Neurodermitis
Info in englisch: http://www.patient.co.uk/showdoc/23068730/
Sounds wonderful, that there'll be no further problems of AE. One Doc told
me, that we should prevent diarrhoea (no journeys in countrys with
high-diarrhoea-risk a.s.o).
How often do your daughter need blood-checkups? Mia gets checked after
three month.
Greetings, Betty
grape...@gmail.com
May 28, 2008, 4:11:30 PM5/28/08
to Acrodermatitis Enteropathica Circle
I see. I've never heard the term neurodermatitis until now, but I do
know what atopic eczema is. Hopefully some, if not all, of that will
go away with the zinc supplementation. ??
Claire's levels are checked once a year. They check zinc, copper and
alkaline phosphatase. She is almost 6 years old and doesn't have the
rapid growth that toddlers/preschoolers have so her doc said she'll
get checked once a year for the rest of her life, unless she goes
through a period of rapid weight gain.
> Info in englisch: _http://www.patient.co.uk/showdoc/23068730/_
> (http://www.patient.co.uk/showdoc/23068730/)
know what atopic eczema is. Hopefully some, if not all, of that will
go away with the zinc supplementation. ??
Claire's levels are checked once a year. They check zinc, copper and
alkaline phosphatase. She is almost 6 years old and doesn't have the
rapid growth that toddlers/preschoolers have so her doc said she'll
get checked once a year for the rest of her life, unless she goes
through a period of rapid weight gain.
April
>
> Hello again,
> thanks for your answer.
> Neurodermitis is a atopic eczema. Some pictures are here:
> _http://de.wikipedia.org/wiki/Neurodermitis_(http://de.wikipedia.org/wiki/Neurodermitis)
>
> Hello again,
> thanks for your answer.
> Neurodermitis is a atopic eczema. Some pictures are here:
> Info in englisch: _http://www.patient.co.uk/showdoc/23068730/_
> (http://www.patient.co.uk/showdoc/23068730/)
Kai DeRousie
May 28, 2008, 4:19:09 PM5/28/08
to aeci...@googlegroups.com
Hello,
My name is Kai and I was diagnosed with AE when i was around 3 months old although it did take a while to diagnose. I am now 21 years old and have lead a relatively normal life up to know including being an active athlete. As far as I know I was treated with supplements and ointments as a baby but haven't taken anything as long as I can remember. I have also had cravings for zinc rich foods, especially meat and milk, but nothing abnormal. I have been interested in finding out more about AE and possibly starting to take zinc supplement.
My mom also had an uncle who was mentally retarded who was thought to have AE but it was never diagnosed, there was also no treatment at the time.
Kai
My name is Kai and I was diagnosed with AE when i was around 3 months old although it did take a while to diagnose. I am now 21 years old and have lead a relatively normal life up to know including being an active athlete. As far as I know I was treated with supplements and ointments as a baby but haven't taken anything as long as I can remember. I have also had cravings for zinc rich foods, especially meat and milk, but nothing abnormal. I have been interested in finding out more about AE and possibly starting to take zinc supplement.
My mom also had an uncle who was mentally retarded who was thought to have AE but it was never diagnosed, there was also no treatment at the time.
Kai
grape...@gmail.com
May 28, 2008, 4:42:30 PM5/28/08
to Acrodermatitis Enteropathica Circle
Hi Kai,
That is interesting. What kind of problems do you have now? Have you
had any skin problems in the past? I was told by my daughter's doctor
that AE gets easier to deal with as one gets older so perhaps the body
gets what it needs through food. ??
If you take the supplements, the usual formula (for the heredity form
of AE) is 1-3 mg zinc/kg body weight. Check with your doctor first.
That is interesting about your mom's uncle. There was no treatment
before 1973 or 74 and often times AE was fatal. I suppose since it
causes damage to the brain and wasting away of tissues and organs, it
might explain his mental handicap. Again, it's hard to tell. This is
a poorly understood disorder because it's so rare.
Where are you located?
April
On May 28, 4:19 pm, "Kai DeRousie" <kderou...@gmail.com> wrote:
> Hello,
> My name is Kai and I was diagnosed with AE when i was around 3 months old
> although it did take a while to diagnose. I am now 21 years old and have
> lead a relatively normal life up to know including being an active athlete.
> As far as I know I was treated with supplements and ointments as a baby but
> haven't taken anything as long as I can remember. I have also had cravings
> for zinc rich foods, especially meat and milk, but nothing abnormal. I have
> been interested in finding out more about AE and possibly starting to take
> zinc supplement.
>
> My mom also had an uncle who was mentally retarded who was thought to have
> AE but it was never diagnosed, there was also no treatment at the time.
>
> Kai
>
That is interesting. What kind of problems do you have now? Have you
had any skin problems in the past? I was told by my daughter's doctor
that AE gets easier to deal with as one gets older so perhaps the body
gets what it needs through food. ??
If you take the supplements, the usual formula (for the heredity form
of AE) is 1-3 mg zinc/kg body weight. Check with your doctor first.
That is interesting about your mom's uncle. There was no treatment
before 1973 or 74 and often times AE was fatal. I suppose since it
causes damage to the brain and wasting away of tissues and organs, it
might explain his mental handicap. Again, it's hard to tell. This is
a poorly understood disorder because it's so rare.
Where are you located?
April
On May 28, 4:19 pm, "Kai DeRousie" <kderou...@gmail.com> wrote:
> Hello,
> My name is Kai and I was diagnosed with AE when i was around 3 months old
> although it did take a while to diagnose. I am now 21 years old and have
> lead a relatively normal life up to know including being an active athlete.
> As far as I know I was treated with supplements and ointments as a baby but
> haven't taken anything as long as I can remember. I have also had cravings
> for zinc rich foods, especially meat and milk, but nothing abnormal. I have
> been interested in finding out more about AE and possibly starting to take
> zinc supplement.
>
> My mom also had an uncle who was mentally retarded who was thought to have
> AE but it was never diagnosed, there was also no treatment at the time.
>
> Kai
>
> On Wed, May 28, 2008 at 12:49 PM, <BettyBlue...@aol.com> wrote:
> > In einer eMail vom 28.05.2008 21:25:42 Westeuropäische Normalzeit
> > schreibt grapeap...@gmail.com:
> > In einer eMail vom 28.05.2008 21:25:42 Westeuropäische Normalzeit
Kai DeRousie
May 28, 2008, 5:16:46 PM5/28/08
to aeci...@googlegroups.com
I am in the Portland, OR area. As far as any complications, I don't know of any, my skin is fine. when it comes to my bodies development, especially during puberty I was slightly behind the curve but still within the norm. I am now 6'3 and around 165 pounds, which is pretty normal considering I am a swimmer and used to be a distance runner.
Kai
Kai
BettyB...@aol.com
May 29, 2008, 3:14:29 PM5/29/08
to aeci...@googlegroups.com
In einer eMail vom 28.05.2008 23:17:29 Westeuropäische Normalzeit schreibt
kder...@gmail.com:
I am in the Portland, OR area. As far as any complications, I don't know of any, my skin is fine. when it comes to my bodies development, especially during puberty I was slightly behind the curve but still within the norm. I am now 6'3 and around 165 pounds, which is pretty normal considering I am a swimmer and used to be a distance runner.
Kai
Hello Kai,
if you have no skinproblems or something else, why do you want
zinc-supplement?
I learned in the last weeks, that children with AE will die without zinc.
Greetings from Germany (next to Hamburg), Betty
BettyB...@aol.com
May 29, 2008, 3:23:09 PM5/29/08
to aeci...@googlegroups.com
In einer eMail vom 28.05.2008 22:11:44 Westeuropäische Normalzeit schreibt
grape...@gmail.com:
I see. I've never heard the term neurodermatitis until now, but I do
know what atopic eczema is. Hopefully some, if not all, of that will
go away with the zinc supplementation. ??
Claire's levels are checked once a year. They check zinc, copper and
alkaline phosphatase. She is almost 6 years old and doesn't have the
rapid growth that toddlers/preschoolers have so her doc said she'll
get checked once a year for the rest of her life, unless she goes
through a period of rapid weight gain.
April
Hello,
sounds good. Mia doesn't like the "blood-donation" a lot! ;-))
Mia was very tired and weak before starting with zinc. How long will it
take until she's strong and tireless again?
Sometimes I worry, that she has additional an other Illness, because
of her strange convulsions and problems with digestion.
This is my little Mia:
Greetings, Betty
April Snyder
May 29, 2008, 3:47:38 PM5/29/08
to aeci...@googlegroups.com
Betty,
How long has Mia been on zinc? She should start doing better very soon. Claire's hair grew thicker and stronger over the course of a year but her other problems went away immediately (2-6 weeks). She was very depressed, tired, sick, and anxious before but all that went away. She is left with some stuttering and some rather quirky behaviors but that just might have happened anyway. ;)
You said Mia is taking 6mg zinc/day. Is that enough? Have you seen a geneticist? If her blood zinc levels are ok on tests then she's probably ok, but if they are low or even on the low side of normal, then she may need additional zinc. The basic formula is 1-3 mg/kg of body weight. Claire is on the high end of that.
As for the convulsions, perhaps seeing a neurologist would be a good idea. ?? Lack of zinc can cause neurological symptoms but it may be unrelated to her disorder.
Mia is super cute!! I'll try and post a picture of Claire...
How long has Mia been on zinc? She should start doing better very soon. Claire's hair grew thicker and stronger over the course of a year but her other problems went away immediately (2-6 weeks). She was very depressed, tired, sick, and anxious before but all that went away. She is left with some stuttering and some rather quirky behaviors but that just might have happened anyway. ;)
You said Mia is taking 6mg zinc/day. Is that enough? Have you seen a geneticist? If her blood zinc levels are ok on tests then she's probably ok, but if they are low or even on the low side of normal, then she may need additional zinc. The basic formula is 1-3 mg/kg of body weight. Claire is on the high end of that.
As for the convulsions, perhaps seeing a neurologist would be a good idea. ?? Lack of zinc can cause neurological symptoms but it may be unrelated to her disorder.
Mia is super cute!! I'll try and post a picture of Claire...
BettyB...@aol.com
May 29, 2008, 4:05:48 PM5/29/08
to aeci...@googlegroups.com
In einer eMail vom 29.05.2008 21:48:16 Westeuropäische Normalzeit schreibt
grape...@gmail.com:
Betty,
How long has Mia been on zinc? She should start doing better very soon. Claire's hair grew thicker and stronger over the course of a year but her other problems went away immediately (2-6 weeks). She was very depressed, tired, sick, and anxious before but all that went away. She is left with some stuttering and some rather quirky behaviors but that just might have happened anyway. ;)
You said Mia is taking 6mg zinc/day. Is that enough? Have you seen a geneticist? If her blood zinc levels are ok on tests then she's probably ok, but if they are low or even on the low side of normal, then she may need additional zinc. The basic formula is 1-3 mg/kg of body weight. Claire is on the high end of that.
As for the convulsions, perhaps seeing a neurologist would be a good idea. ?? Lack of zinc can cause neurological symptoms but it may be unrelated to her disorder.
Mia is super cute!! I'll try and post a picture of Claire...
April
She is on zinc since december. She is much stronger than before, but not so
as fullbreastfeeding.
Mia had an EEG last year, which was o.k.
I'll contact my ChildrensDoc on Monday again. I'll aks him a lot of
questions and for more Diagnostic.
Do you have covered on the diagnosis by an geneticist?
Hoping for foto, Betty
Kai DeRousie
May 29, 2008, 5:13:52 PM5/29/08
to aeci...@googlegroups.com
i was thinking about taking zinc as a preventative measures to keep healthy. maybe not the full dose you guys are talking about, but possibly some vitamin supplement.
Kai
Kai
BettyB...@aol.com
Aug 4, 2008, 3:32:15 PM8/4/08
to aeci...@googlegroups.com
Hello,
your daughter is very beautyful!
We've been in hospital for a new EEG and heart-examinations. Mia has little
heartproblems.
But she feels very well! Her skin looks so fine and her hair looks like
hair!!
Greetings, Betty
April Snyder
Aug 4, 2008, 3:55:50 PM8/4/08
to aeci...@googlegroups.com
Thank you!
Sorry to hear Mia has heart problems. Is this possibly the reason for her dizzy spells? I hope it's nothing serious. Let us know how the tests turn out. I'm so glad she feels good and that her skin and hair are repairing. That's great news!
April
Sorry to hear Mia has heart problems. Is this possibly the reason for her dizzy spells? I hope it's nothing serious. Let us know how the tests turn out. I'm so glad she feels good and that her skin and hair are repairing. That's great news!
April
bisfo...@gmail.com
Aug 13, 2008, 4:17:54 AM8/13/08
to Acrodermatitis Enteropathica Circle
Hello, all. My name is Ben and I have AE. I am 24 years old and I
live in Washington. for those of you with kids, I strongly recommend
using the zinc gluconate supplements rather than zinc sulfate ones.
Learned that one the hard way. I've lived a pretty normal life, even
served in the Army, but unlike Kai I CANNOT go without supplements.
Without regular supplements I display symptoms within two weeks. I'm
not a doctor, although unless they have experience with AE I dont
usually listen to them, as I've gotten LOADS of bad advice from
doctors just shooting ideas off the top of their heads, but i've found
that a higher dosage of zinc is better safe than sorry. at 285 pounds
i have to take 128mg a day so i take 150 (until they make a 128mg
tablet that is). I dont know how Kai goes without supplements as the
only food that could really make a difference zinc wise is oysters,
everything else has too low a zinc content to help. well, to help me
anyway. ha ha ive got a good 120 pounds on Kai. Anyway, if any of you
parents have any questions, i've dealt with this for 24 years now.
cheers!
live in Washington. for those of you with kids, I strongly recommend
using the zinc gluconate supplements rather than zinc sulfate ones.
Learned that one the hard way. I've lived a pretty normal life, even
served in the Army, but unlike Kai I CANNOT go without supplements.
Without regular supplements I display symptoms within two weeks. I'm
not a doctor, although unless they have experience with AE I dont
usually listen to them, as I've gotten LOADS of bad advice from
doctors just shooting ideas off the top of their heads, but i've found
that a higher dosage of zinc is better safe than sorry. at 285 pounds
i have to take 128mg a day so i take 150 (until they make a 128mg
tablet that is). I dont know how Kai goes without supplements as the
only food that could really make a difference zinc wise is oysters,
everything else has too low a zinc content to help. well, to help me
anyway. ha ha ive got a good 120 pounds on Kai. Anyway, if any of you
parents have any questions, i've dealt with this for 24 years now.
cheers!
BettyB...@aol.com
Aug 13, 2008, 9:04:01 AM8/13/08
to aeci...@googlegroups.com
In einer eMail vom 13.08.2008 14:46:03 Westeuropäische Normalzeit schreibt
bisfo...@gmail.com:
Hello Ben,
my name is Betty. I live in germany, my little daughter Mia (2) has AE.
What symptoms do you display without zinc? And what's the difference for
you between zinc gluconate and zinc sulfate?
How often do you have blood-controllings?Did you ever have problems with
copper?
Greetings, Betty
grape...@gmail.com
Aug 13, 2008, 9:43:45 AM8/13/08
to Acrodermatitis Enteropathica Circle
Hi Ben! Thank you for posting. It's great to have your adult
expertise on here. I too have found that more zinc is better. My
thinking is that large doses of zinc in people with AE don't carry the
same risk of copper deficiency as 'normal' people because only small
amounts of zinc are being absorbed each dose anyway by whatever other
mechanism is working in the body. Let us know if you've ever had a
problem with copper levels. So far my daughter (6 yrs old) has never
had a low copper level. Her dr had her on zinc sulfate liquid
previously (40 mg/day) but as she got older and could swallow pills, I
started giving her zinc gluconate tablets (50 mg broken in half, twice
a day). This worked out much better and reduced the diarrhea. As she
grew, the 50 mg left her with a bit of rash still in the corners of
her mouth (our 'getting low on zinc' indicator), so I upped it to 60
mg/day. I currently have her on a high dose of zinc (gluconate), 60mg/
day plus multivitamin. She weighs 47 lbs (21 kg). Her pediatrician
is fine with that and admits that this isn't a very well understood
disorder and that he basically just goes on trial and error anyway.
He does order labs once a year and says that when/if she has a
dramatic increase in growth, we'll do labs then too. So far her
dermatologist and the geneticist knew the most, but we no longer see
them as it's not necessary. Our ped did consult them to get dosage
requirements, etc.
I agree with you. If you are someone with AE or have a child with AE,
you have to become an expert on the subject. It's essential to you or
your child's well being as most dr's treat for 'zinc deficiency' which
is an entirely different dosage than with AE and not nearly enough.
They look in their book to get a formula and come up way too short.
For those of you with infants or toddlers, I would ask your ped for a
referral to a geneticist and if your child is taking liquid
supplements, like Ben said, it might not be a bad idea to ask for
gluconate instead of sulfate.
Ben-tell us about your skin and physical and mental health as a child
and teenager. How about now? Before my daughter was diagnosed she
had painful rashes and so much anxiety and depression. She was a real
mess. Once supplements were started it was as if a dark cloud lifted
and there was this bright, happy child underneath. When were you
diagnosed? How does puberty affect zinc requirements? What are some
things we can expect as she gets older? I know you're a male and
girls have different requirements but in general how has life
been? :)
Are you a big meat eater? LOL! My 6 year old can beat an adult in a
burger eating contest! She eats more meat than the rest of us put
together sometimes. It's quite humorous. She doesn't like oysters
yet though.
expertise on here. I too have found that more zinc is better. My
thinking is that large doses of zinc in people with AE don't carry the
same risk of copper deficiency as 'normal' people because only small
amounts of zinc are being absorbed each dose anyway by whatever other
mechanism is working in the body. Let us know if you've ever had a
problem with copper levels. So far my daughter (6 yrs old) has never
had a low copper level. Her dr had her on zinc sulfate liquid
previously (40 mg/day) but as she got older and could swallow pills, I
started giving her zinc gluconate tablets (50 mg broken in half, twice
a day). This worked out much better and reduced the diarrhea. As she
grew, the 50 mg left her with a bit of rash still in the corners of
her mouth (our 'getting low on zinc' indicator), so I upped it to 60
mg/day. I currently have her on a high dose of zinc (gluconate), 60mg/
day plus multivitamin. She weighs 47 lbs (21 kg). Her pediatrician
is fine with that and admits that this isn't a very well understood
disorder and that he basically just goes on trial and error anyway.
He does order labs once a year and says that when/if she has a
dramatic increase in growth, we'll do labs then too. So far her
dermatologist and the geneticist knew the most, but we no longer see
them as it's not necessary. Our ped did consult them to get dosage
requirements, etc.
I agree with you. If you are someone with AE or have a child with AE,
you have to become an expert on the subject. It's essential to you or
your child's well being as most dr's treat for 'zinc deficiency' which
is an entirely different dosage than with AE and not nearly enough.
They look in their book to get a formula and come up way too short.
For those of you with infants or toddlers, I would ask your ped for a
referral to a geneticist and if your child is taking liquid
supplements, like Ben said, it might not be a bad idea to ask for
gluconate instead of sulfate.
Ben-tell us about your skin and physical and mental health as a child
and teenager. How about now? Before my daughter was diagnosed she
had painful rashes and so much anxiety and depression. She was a real
mess. Once supplements were started it was as if a dark cloud lifted
and there was this bright, happy child underneath. When were you
diagnosed? How does puberty affect zinc requirements? What are some
things we can expect as she gets older? I know you're a male and
girls have different requirements but in general how has life
been? :)
Are you a big meat eater? LOL! My 6 year old can beat an adult in a
burger eating contest! She eats more meat than the rest of us put
together sometimes. It's quite humorous. She doesn't like oysters
yet though.
bisfo...@gmail.com
Aug 14, 2008, 9:52:45 PM8/14/08
to Acrodermatitis Enteropathica Circle
betty-
symptoms are those nasty skin peelings around the sensitive parts of
the body, joints, orifices, places where sweat accumulates, etc. most
notably is the swollen throat. swallowing becomes more difficult and
taste buds on the tongue die off. sensitivity to light and depression
are common if i go for long periods without zinc. the main difference
between zinc sulfate and zinc gluconate are the effects on the
digestive system. sulfate makes you extremely nauseous. As a child, i
learned to hate taking my pills just because it made me feel like i
was going to throw up. throughout the teenage years i would take my
pills about once every two weeks just because i hated taking them so
much. gluconate is much softer on the digestive system and will help
your kids build the discipline required to take them EVERY DAY. as
for copper problems, people with AE are much different than people
with just a zinc deficiency. i have always taken high dosages of zinc
because i have always been a large person, and have never had problems
with my copper levels.
april-
when i was diagnosed in 1984, there were no zinc sulfate liquids.
just the pills (my mom broke them open and stirred them into pudding
to get me to take the medicine, because of the nausea.) AE wasnt even
recognized as a fixable problem until 1973, so for much of my early
life i was a case study whenever i went in to the doctor. it was a
little uncomfortable as a small child to have six or seven doctors
want to see you naked. but if it helped other kids, id do it all over
again. as far as dosage goes, if your daughter is anything like me,
she should up her dose every two years until she has stopped growing.
i had a terrible time between the ages of 10 and 15 because i had been
kept on 100mg a day, when by the age of 15 i should have been taking
220mg. (those are sulfate levels, not gluconate).
only once in my life have i ever got to speak with an actual AE
specialist and the way he described it to me was that people with AE
dont have to worry about poisoning their systems with zinc the way
'normal' people do, so if symptoms are ongoing, even slightly, never
hesitate to up the dosage. as an adult, i have to take 150mg of zinc
gluconate just to get the 11mg per day recommended dose. we are
already taking more than ten times the daily amount, so the next time
you are worried about upping it 10mg, remember that our bodies dont
look for zinc, we need it dumped on us.
as far as the mental health goes, as long as we get enough zinc we
dont need to worry about depression. i was diagnosed with clinical
depression when i was about 16, but no one thought it had anything to
do with AE. i find if i keep up with my pills i am a happier person
( and certainly healthier). as far as puberty goes, keep a weather
eye out for growth spurts and remember that every time one hits, UP
THE DOSAGE. there is more of the body to feed so it needs more zinc.
the most important thing, i think, is to take the pills every day.
help your child build the discipline as they grow older to take them
themselves every day. if i take my pills once a week, i can expect
symptoms within the week. if i take them every day, and suddenly find
myself in a position where i cannot take them, i can go a lot longer.
i took my pills just about every day before going into basic combat
training and went three whole months without supplements (although
towards the end i was sucking down throat lozenges with zinc every
day.)
i think i answered all the questions...if you have more dont hesitate
to ask!
symptoms are those nasty skin peelings around the sensitive parts of
the body, joints, orifices, places where sweat accumulates, etc. most
notably is the swollen throat. swallowing becomes more difficult and
taste buds on the tongue die off. sensitivity to light and depression
are common if i go for long periods without zinc. the main difference
between zinc sulfate and zinc gluconate are the effects on the
digestive system. sulfate makes you extremely nauseous. As a child, i
learned to hate taking my pills just because it made me feel like i
was going to throw up. throughout the teenage years i would take my
pills about once every two weeks just because i hated taking them so
much. gluconate is much softer on the digestive system and will help
your kids build the discipline required to take them EVERY DAY. as
for copper problems, people with AE are much different than people
with just a zinc deficiency. i have always taken high dosages of zinc
because i have always been a large person, and have never had problems
with my copper levels.
april-
when i was diagnosed in 1984, there were no zinc sulfate liquids.
just the pills (my mom broke them open and stirred them into pudding
to get me to take the medicine, because of the nausea.) AE wasnt even
recognized as a fixable problem until 1973, so for much of my early
life i was a case study whenever i went in to the doctor. it was a
little uncomfortable as a small child to have six or seven doctors
want to see you naked. but if it helped other kids, id do it all over
again. as far as dosage goes, if your daughter is anything like me,
she should up her dose every two years until she has stopped growing.
i had a terrible time between the ages of 10 and 15 because i had been
kept on 100mg a day, when by the age of 15 i should have been taking
220mg. (those are sulfate levels, not gluconate).
only once in my life have i ever got to speak with an actual AE
specialist and the way he described it to me was that people with AE
dont have to worry about poisoning their systems with zinc the way
'normal' people do, so if symptoms are ongoing, even slightly, never
hesitate to up the dosage. as an adult, i have to take 150mg of zinc
gluconate just to get the 11mg per day recommended dose. we are
already taking more than ten times the daily amount, so the next time
you are worried about upping it 10mg, remember that our bodies dont
look for zinc, we need it dumped on us.
as far as the mental health goes, as long as we get enough zinc we
dont need to worry about depression. i was diagnosed with clinical
depression when i was about 16, but no one thought it had anything to
do with AE. i find if i keep up with my pills i am a happier person
( and certainly healthier). as far as puberty goes, keep a weather
eye out for growth spurts and remember that every time one hits, UP
THE DOSAGE. there is more of the body to feed so it needs more zinc.
the most important thing, i think, is to take the pills every day.
help your child build the discipline as they grow older to take them
themselves every day. if i take my pills once a week, i can expect
symptoms within the week. if i take them every day, and suddenly find
myself in a position where i cannot take them, i can go a lot longer.
i took my pills just about every day before going into basic combat
training and went three whole months without supplements (although
towards the end i was sucking down throat lozenges with zinc every
day.)
i think i answered all the questions...if you have more dont hesitate
to ask!
tony trousset
Aug 15, 2008, 11:31:26 AM8/15/08
to aeci...@googlegroups.com, Erin Kelley
This is very helpful. Thx for sharing.
Tony
grape...@gmail.com
Aug 15, 2008, 3:57:19 PM8/15/08
to Acrodermatitis Enteropathica Circle
Thanks Ben for sharing all that. Very helpful. It's good to have you
on here. I try educating my daughter on her condition and she is
getting old enough to understand the importance of taking her zinc.
We rarely miss a dose and I hope that as she gets older she will be
religious about taking it.
You differentiate mg sulfate vs. gluconate and I thought I would
mention that when I said my daughter was on 60 mg zinc in the form of
gluconate, it's 60 mg elemental I was talking about. Recently (in the
last couple of years) the pharmaceutical companies have revised
labeling. So when you see a bottle of zinc on the shelf and it says
30 mg tablets for example, it's 30 mg of elemental zinc. This
minimizes confusion I think. I found this out from our pharmacist
about a year ago when I was doing some calculating with him and we
though he had prepared a bottle of liquid zinc sulfate wrong. He
actually didn't but it was then that he told me that a change had
recently been implemented in labeling and it actually made calculating
easier. When I switched my daughter to over-the-counter tablets, I
called the vitamin company directly (Nature Made) to ask if the mg of
zinc printed on the bottle were elemental or compound and they said
it's elemental. I don't know if you or anyone else on here knew that
or not but I thought it might be an important note to bring up.
As for most drs (I can only speak for the ones in the U.S.), I have to
agree with Ben that most don't really understand this disorder. We
visited a dr a while back for a consult when we were thinking of
switching to a female dr and she was totally clueless as to the
amounts of zinc Claire would need. She calculated 10 mg when she was
already at the time taking 40mg. She told me she knew all about AE
because she learned about it in med school and then when it got right
down to it she was so wrong and didn't know what in the world she was
doing. There were other things but needless to say, we never switched
drs.
-April
on here. I try educating my daughter on her condition and she is
getting old enough to understand the importance of taking her zinc.
We rarely miss a dose and I hope that as she gets older she will be
religious about taking it.
You differentiate mg sulfate vs. gluconate and I thought I would
mention that when I said my daughter was on 60 mg zinc in the form of
gluconate, it's 60 mg elemental I was talking about. Recently (in the
last couple of years) the pharmaceutical companies have revised
labeling. So when you see a bottle of zinc on the shelf and it says
30 mg tablets for example, it's 30 mg of elemental zinc. This
minimizes confusion I think. I found this out from our pharmacist
about a year ago when I was doing some calculating with him and we
though he had prepared a bottle of liquid zinc sulfate wrong. He
actually didn't but it was then that he told me that a change had
recently been implemented in labeling and it actually made calculating
easier. When I switched my daughter to over-the-counter tablets, I
called the vitamin company directly (Nature Made) to ask if the mg of
zinc printed on the bottle were elemental or compound and they said
it's elemental. I don't know if you or anyone else on here knew that
or not but I thought it might be an important note to bring up.
As for most drs (I can only speak for the ones in the U.S.), I have to
agree with Ben that most don't really understand this disorder. We
visited a dr a while back for a consult when we were thinking of
switching to a female dr and she was totally clueless as to the
amounts of zinc Claire would need. She calculated 10 mg when she was
already at the time taking 40mg. She told me she knew all about AE
because she learned about it in med school and then when it got right
down to it she was so wrong and didn't know what in the world she was
doing. There were other things but needless to say, we never switched
drs.
-April
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