Melatonin and Down Syndrome?????
Marc Halverson
Hello again from Heather in British Columbia, Canada!
My specialist recommended I try melatonin to help me with my Fibromyalgia
and I have been doing a considerable amount of reading on this hormone. In
two of the most recent books I have read, there is some information about
giving melatonin to our children with Down Syndrome, and I wanted to ask
everyone here, especially the Drs. what they feel about this??????????????????
In "THE MELATONIN MIRACLE" by Walter Pierpaoli, M.D. Ph.D and William
Regelson, M.D. woth Carol Colman. Simon and Schuster Publ. 1995....on pages
149-151, I quote:
"Down Syndrome: Although we do not usually recommend the use of melatonin
for children, there is one exception to our rule. We believe that melatonin
may be beneficial to children with Down Syndrome in several important ways.
Down Syndrome is the most common form of mental retardation and is caused
by a chromosomal abnormality. The risk of having a Down sundrome child
increases exponentially with the age of the mother. Down Syndrome can cause
many physical problems that result in shortened lifespan. Our interest in
Down Syndrome is twofold. Firts, one of us (Walter) has a nephew with Down
Syndrome, and while watching him grow, he has been able to see firsthand,
the physical and emotional difficulties with which he and his parents have
had to deal. Secondly, from a clinically viewpoint, we think that many of
the symptoms of Down Syndrome strongly resemble those of aging. For example,
children with Down Syndrome often have a weakened immune system, and as a
result are especially vulnerable to infection. By middle age, they appear to
be years older than their chronological age, and they are prone to develop
some of the diseases associated with aging, such as osteoporosis and
premature senile dementia. Similar to many older people. Down children offer
suffer from sleep disturbances. This is not only hard on the Down child, but
it can be extremely draining on the parents, who are sleep-deprived becuase
of the need to tend to a wakeful child......We believe that melatonin may
enable children with Down Syndrome to sleep better, which in turn would
reduce some of the stress experienced by their parents. In particular,
melatonin helps to restore normal REM (rapid eye movement) sleeping
patterns, which these children so desperately need. It is during REM sleep
that we dream, and if we are regularily deprived of this sleep cycle we
never feel rested, and irritability and even more emotional disturbances may
result. Second, melatonin may rpovide a boost to Down children's weakened
immune systems, which can help make them less prone to infection. As we have
said (previously in the book), melatonin specifically stimulates the thyroid
gland and the thymus gland, both of which are involved in the production of
T cells, which is crucial for maintaining a stronmg immune system.
Children with D.S. have a subtle but significant deficiency in the mineral
zinc. Like melatonin, zinc is crucial for the normal function of the immune
system, and a zinc deficiency can lead to a corresponding deficiency in
disease-fighting T cells. For some time, our friend and colleague, Dr.
Nicola Fabris of the Italian National Research Centers on Aging has been
suggesting that zinc supplements could be of grear benefit to Down children,
by giving a boost to their suppressed immune systems. In fact, according to
his studies, zinc can stimulate T cell production and correct many of the
immune problems found in Down children. Zinc deficiency, however, is not
always caused by an inadequate intake of this mineral. In addition, it may
be caused by the inability of the body to utilize the zinc it has.. In this
case, supplements may not always be useful. thus it is important to repeat
that melatonin supplements, themselves have been known to normalize zinc
levels. We suspect that melatonin is involved in how zinc is absorbed and
utilized in the bozy. Consequently, taking melatonin may help Down Syndrome
children to better utilize this essential mineral, and thereby strenthen the
immune system."
In "STAYING YOUNG THE MELATONIN WAY" by Steven J. Bock, M.D. and Michael
Boyette (both books are at the library) Dutton Publ. 1995, I quote from
thier book......
"In may ways, people with Down's Syndrome seem like children who never grow
up. And yet physically they grow up all too quickly, exhibiting
characteristic signs of aging by the time they reach their twenties:
thinning hair, wrinkles, deteriorations in mental and physical faculties. It
now appears that this physical deterioration may be at least partially
caused by a poorly functioning pineal gland. The eveidence for this includes
the following:
1.) Those with the disorder often have abnormally low or high levels of
thyroid hormones. In the laboratory, similar effects have been seen in mice
who have had theor pineal glands removed.
2.) Sleep patterns in patients with D.S. are often abnormal. In fact,
these patterns look similar to the sleep patterns that occur in old age,
with reduced amonuts of REM sleep.....
3.)As D.S. patients get older, they're often more prone to infection
because of deficiencies in their immune system. This propensity to infection
probably occurs because of low levels of melatonin.
Researchers believe that these changes in patients with D.S. may reflect
an acceleration of the aging process in the brain and body, and they suggest
that oral melatonin may help establish more normal patterns of sleep and
activity, thereby improving the quality of life...."
Well....what do we all think about this?????? Opinions please???? Are there
any adults out there, like myself who are taking it to help them sleep?????
Are there any parents out there, who are giving it to their child with
D.S.?????? Drs. on the panel - what do you think about this???????? Would it
benefit our children with D.S.???????????
Heather Halverson in B.C. Canada (Please excuse all typo errors! I am a 2
finger typist! :-()
Betty and Gary Schmidt
>Well....what do we all think about this?????? Opinions please???? Are there
>any adults out there, like myself who are taking it to help them sleep?????
>Are there any parents out there, who are giving it to their child with
>D.S.?????? Drs. on the panel - what do you think about this???????? Would it
>benefit our children with D.S.???????????
>
Heather, my husband and I take it to help us sleep on occasion. And it
really works. We have never considered giving it to our child with ds
because he has so many other medical issues going on at present. I'm really
interested, though, about the research articles you quote, and if anyone
replies to you privately about them, please post them to the list or send me
the info, if you don't mind.
The only think about the melatonin that we can see is that if you take it
when you are not absolutely ready to close your eyes and go to sleep, it
doesn't seem to work. I took it once about an hour before I planned on
going to sleep, and wanted to read for a while. It never worked. The next
time I got up in middle of the night because I couldn't sleep and took one,
went back to bed, and I don't even remember closing my eyes. Next thing I
knew it was morning. We don't take it very often, however.
Interesting subject. Betty
Len Leshin
At 09:02 AM 5/21/96 -0700, Marc Halverson wrote:
>My specialist recommended I try melatonin to help me with my Fibromyalgia
>and I have been doing a considerable amount of reading on this hormone. In
>two of the most recent books I have read, there is some information about
>giving melatonin to our children with Down Syndrome, and I wanted to ask
>everyone here, especially the Drs. what they feel about this??????????????????
OK, I'm game. Here goes:
>In "THE MELATONIN MIRACLE" by Walter Pierpaoli, M.D. Ph.D and William
>Regelson, M.D. woth Carol Colman. Simon and Schuster Publ. 1995....on pages
>149-151, I quote:
>
> "Down Syndrome: Although we do not usually recommend the use of melatonin
>for children, there is one exception to our rule. We believe that melatonin
>may be beneficial to children with Down Syndrome in several important ways.
> Down Syndrome is the most common form of mental retardation and is caused
>by a chromosomal abnormality. The risk of having a Down sundrome child
>increases exponentially with the age of the mother. Down Syndrome can cause
>many physical problems that result in shortened lifespan. Our interest in
>Down Syndrome is twofold. Firts, one of us (Walter) has a nephew with Down
>Syndrome, and while watching him grow, he has been able to see firsthand,
>the physical and emotional difficulties with which he and his parents have
>had to deal. Secondly, from a clinically viewpoint, we think that many of
>the symptoms of Down Syndrome strongly resemble those of aging. For example,
Here's the problem. There is premature aging in DS, but not all the
problems of DS are due to premature aging. It's a symptom, not the cause.
The cause of the premature aging is unknown as of yet, but the
overproduction of SOD is the main culprit suspected at this time.
>children with Down Syndrome often have a weakened immune system, and as a
>result are especially vulnerable to infection. By middle age, they appear to
>be years older than their chronological age, and they are prone to develop
>some of the diseases associated with aging, such as osteoporosis and
>premature senile dementia.
Again, these disease are not caused by the "premature aging."
> Down children often
>suffer from sleep disturbances. This is not only hard on the Down child, but
>it can be extremely draining on the parents, who are sleep-deprived becuase
>of the need to tend to a wakeful child......
I'm curious about this. How many parents out there have this problem? Avi
gets up still in the middle of the night half the time but I've always
ascribed that to his special diet. And of those children who have sleep
problems, how many of those children snore (since adenoid hypertrophy can
cause sleep apnea which causes restless sleep) ?
>Second, melatonin may rpovide a boost to Down children's weakened
>immune systems, which can help make them less prone to infection. As we have
>said (previously in the book), melatonin specifically stimulates the thyroid
>gland and the thymus gland, both of which are involved in the production of
>T cells, which is crucial for maintaining a strong immune system.
This is all interesting, but doesn't fit the current model of immune defects
in DS. The current theory is that overexpression of certain genes cause
abnormalities within the thymus, producing fewer mature T cells. The
deficiency of T cells in the spleen leads to "decreased education" of B
cells, leading to increased susceptibility to both bacteria and viruses. (1)
I don't see how stimulating a thymus that has abnormal architecture would help.
> Children with D.S. have a subtle but significant deficiency in the mineral
>zinc. Like melatonin, zinc is crucial for the normal function of the immune
>system, and a zinc deficiency can lead to a corresponding deficiency in
>disease-fighting T cells. For some time, our friend and colleague, Dr.
>Nicola Fabris of the Italian National Research Centers on Aging has been
>suggesting that zinc supplements could be of grear benefit to Down children,
>by giving a boost to their suppressed immune systems. In fact, according to
>his studies, zinc can stimulate T cell production and correct many of the
>immune problems found in Down children.
Zinc is normally required for DNA synthesis and production of mature
lymphocytes. A deficiency might further decrease the efficiency of T cells.
So far, so good. I have Avi on Zinc, but for his skin more than the immune
problem, and he still gets more than his share of respiratory infections.
>Zinc deficiency, however, is not
>always caused by an inadequate intake of this mineral. In addition, it may
>be caused by the inability of the body to utilize the zinc it has.. In this
>case, supplements may not always be useful.
The cause of zinc deficiency in children with DS is suspected to be the
increased needs of the body from the overproduction of SOD, which uses zinc.
Zinc supplementation has been shown to raise zinc serum levels.
> We suspect that melatonin is involved in how zinc is absorbed and
>utilized in the body. Consequently, taking melatonin may help Down Syndrome
>children to better utilize this essential mineral, and thereby strenthen the
>immune system."
Nice theory. It's a shame there are no studies to back this up.
>
>In "STAYING YOUNG THE MELATONIN WAY" by Steven J. Bock, M.D. and Michael
>Boyette (both books are at the library) Dutton Publ. 1995:
>"In many ways, people with Down's Syndrome seem like children who never grow
>up.
(Grump alert) What do they mean by that?
>And yet physically they grow up all too quickly, exhibiting
>characteristic signs of aging by the time they reach their twenties:
>thinning hair, wrinkles, deteriorations in mental and physical faculties. It
>now appears that this physical deterioration may be at least partially
>caused by a poorly functioning pineal gland. The evidence for this includes
>the following:
> 1.) Those with the disorder often have abnormally low or high levels of
>thyroid hormones. In the laboratory, similar effects have been seen in mice
>who have had their pineal glands removed.
> 2.) Sleep patterns in patients with D.S. are often abnormal. In fact,
>these patterns look similar to the sleep patterns that occur in old age,
>with reduced amonuts of REM sleep.....
Again, this is the first I've ever heard of this theory, and I'm not sure
how much credence to give it.
> 3.)As D.S. patients get older, they're often more prone to infection
>because of deficiencies in their immune system. This propensity to infection
>probably occurs because of low levels of melatonin.
See above.
> Researchers believe that these changes in patients with D.S. may reflect
>an acceleration of the aging process in the brain and body, and they suggest
>that oral melatonin may help establish more normal patterns of sleep and
>activity, thereby improving the quality of life...."
"Researchers"? There are NO published studies on melatonin and people with
DS. No studies on what the serum melatonin levels or 24-hour excretion
rates are in children or adults with DS. If there's no deficiency, I'd have
a hard time justifying giving children with DS melatonin.
My reference:
1. Murphy, M. et al. A hypothesis to explain the immune defects in Down
syndrome. _Etiology and Pathogenesis of Down Syndrome_, pages 147-167,
Wiley-Liss Inc.
Len Leshin, MD, FAAP
Father of Avi, 2 (DS) and Nathan, 4
lle...@davlin.net
DJone...@aol.com
In a message dated 96-05-21 13:44:33 EDT, you write:
>s
>because he has so many other medical issues going on at present. I'm really
>interested, though, about the research articles you quote, and if anyone
>replies to you privately about them, please post them to the list or send me
>the info, if you don't mind.
Me too! I take it from time to time myself. In fact, I have never been a
good sleeper, so when I discovered Melatonin I felt like a found a miracle!
My son Brian(DS) I don't think ever slept through the night once. There was
a night or two when I did give him a very small amount because at 3 am he was
still wide awake and wanting to watch videos!
Marcia
Pamela Cale
Len Leshin <lle...@DAVLIN.NET> wrote:
>I'm curious about this. How many parents out there have this problem? Avi
>gets up still in the middle of the night half the time but I've always
>ascribed that to his special diet. And of those children who have sleep
>problems, how many of those children snore (since adenoid hypertrophy can
>cause sleep apnea which causes restless sleep) ?
I used to think my baby (now toddler) with DS was acting like a typical kid
with DS when he wouldn't slow down for naps and bedtime...NOPE! He was
just an intelligent, manipulative little sh*t like all my other kids. We started a
bedtime routine recommended by a behavioral psychologist last Friday - he
goes to naps and bedtime and sleeps in a BED (not crib) ALL NIGHT. He
was just spoiled because he was "special"...what a crock...and no - he has
no snoring, no special diet...he's finally grown up! Now onto to toilet training...
Pamela
San Diego, CA
Betty and Gary Schmidt
>Me too! I take it from time to time myself. In fact, I have never been a
>good sleeper, so when I discovered Melatonin I felt like a found a miracle!
> My son Brian(DS) I don't think ever slept through the night once. There was
>a night or two when I did give him a very small amount because at 3 am he was
>still wide awake and wanting to watch videos!
>
Marcia, oh yeah, we've had the videos going at 3:00 AM ourselves!!! I think
we have FINALLY got Jeff convinced, though, that the TV is not going to be
turned on until the sun is up in the morning. Now as soon as he wakes up he
wants to pop a video in, even before breakfast. Those videos are __so__
addictive to kids!! Betty
Len Leshin
At 03:54 PM 5/22/96 -0400, PMWi...@AOL.COM wrote:
>That being said, the suggestion that melatonin, like zinc, helping kids with
>DS is interesting. I have been reading in the public press that there is
>great diversity in the potency of melatonin supplements available in stores
>and wonder what the more reputable brands of supplements might be? Also,
>where does melatonin occur naturally in foods?
Melatonin is a hormone and does not occur naturally in foods.
From _The Medical Letter_, 11/24/95 (a biweekly newsletter for doctors and
pharmacists):
"Melatonin has not been approved by the US FDA, but is available in health
food stores and apparently is being used as self-medication to treat a wide
variety of disorders.
The pineal gland synthesizes melatonin from tryptophan and secretes it at
night. In normal people, endogenous (made by the body) melatonin levels are
highest during the normal hours of sleep, increasing rapidly in late
evening, peaking after midnight and decreasing toward morning. Older
people, who suffer from insomnia, have lower serum concentrations of
melatonin. Blind people, who often have irregular sleep-wake cycles, may
have free-running (not 24-hour) rhythms of melatonin production; a
double-blind trial in five blind men found that taking 5 mg of exogenous
(originating outside the body) melatonin at bedtime for three weeks tended
to normalize their endogenous production rhythms and relieve nocturnal
insomnia and daytime drowsiness.
Even though it is a hormone, melatonin is marketed as a dietary supplement.
As a result of the Dietary Supplement Health and Education Act passed by
Congress in 1994, products marked as dietary supplements are not reviewed by
the FDA for effectiveness or safety. Manufacturers are not required to
present evidence of purity or even to demonstrate that any melatonin is
present in their product....The bottles labeled as containing melatonin
identify a distributor, but not the manufacturer of the raw material. One
large distributor told the Medical Letter that the name of the manufacturer
is proprietary information. Some of the melatonin products sold in the US,
according to their labels, are made from bovine pineal glands, but most are
probably synthesized. One Medical Letter consultant found that four of six
melatonin products from health food stores contained impurities that he was
unable to characterize."
DEB JASTREBSKI
Doctor Leshin,
This is in reply to your comments on the melatonin email. I have a question.
You mention an overproduction of SOD. Could you explain what SOD is? I don't
know if I've heard that acronym.
Thank you.
Debbie Jastrebski
Len Leshin
At 09:52 PM 5/22/96 -0400, DEB JASTREBSKI wrote:
>Doctor Leshin,
>
>This is in reply to your comments on the melatonin email. I have a question.
>You mention an overproduction of SOD. Could you explain what SOD is? I don't
>know if I've heard that acronym.
My apologies. I've gotten a few Emails with this request, and I had
forgotten there are a number of new people on the list.
SOD stands for Superoxide Dismutase. SOD is the enzyme that is overproduced
due to an extra gene in DS. SOD normally works in the two-step process
cells have to rid themselves of metabolic byproducts. SOD is the first step
in that process, taking the superoxide anion (O2-) and turning it into
hydrogen peroxide and water. The second step is the elimination of the
hydrogen peroxide by the enzyme catalase. IN DS, the SOD is over produced,
leading to an increase in intracellular hydrogen peroxide since the enzyme
in the second step stays the same.
Len L
lle...@davlin.net
SWAd...@aol.com
In a message dated 96-05-21 14:17:08 EDT, lle...@davlin.net (Len Leshin)
writes:
>I'm curious about this. How many parents out there have this problem? Avi
>gets up still in the middle of the night half the time but I've always
>ascribed that to his special diet. And of those children who have sleep
>problems, how many of those children snore (since adenoid hypertrophy can
>cause sleep apnea which causes restless sleep) ?
I do. Warren gets up, sometimes several times a night, comes into my room
and wants to get into my bed. If I let him, he'll just go to sleep. But I
don't, I make him go back to his own bed. Sometimes he gets up and just sits
on the floor outside his door, making noises until I wake up and come and get
him. No matter what time he goes to bed, (or goes to SLEEP, there's a BIG
difference!), he always wakes up at or near 6 am.
He does not snore unless he has a cold, tonsils and Adenoids were removed
long ago.
And then sometimes he surprises me and sleeps all night.
Janet
DOUG n BRENDA
----------
From: SWAd...@AOL.COM[SMTP:SWAd...@AOL.COM]
Sent: Thursday, May 23, 1996 4:46 PM
To: Multiple recipients of list DOWN-SYN
Subject: Re: Melatonin and Down Syndrome?????
In a message dated 96-05-21 14:17:08 EDT, lle...@davlin.net (Len =
Leshin)
writes:
>I'm curious about this. How many parents out there have this problem? =
Avi
>gets up still in the middle of the night half the time but I've always
>ascribed that to his special diet. And of those children who have =
sleep
>problems, how many of those children snore (since adenoid hypertrophy =
can
>cause sleep apnea which causes restless sleep) ?
I do. Warren gets up, sometimes several times a night, comes into my =
room
and wants to get into my bed. If I let him, he'll just go to sleep. =
But I
don't, I make him go back to his own bed. Sometimes he gets up and just =
sits
on the floor outside his door, making noises until I wake up and come =
and get
him. No matter what time he goes to bed, (or goes to SLEEP, there's a =
BIG
difference!), he always wakes up at or near 6 am.
He does not snore unless he has a cold, tonsils and Adenoids were =
removed
long ago.
And then sometimes he surprises me and sleeps all night.
Janet
Essley (5) does pretty much the same thing. She is restless, tossing and =
turning a lot. Frequently wakes and starts out of her room into mine. =
Sometimes she makes it in my bed before falling back to sleep, sometimes =
not. We find her on the floor in front of the bedroom door or in the =
hallway. She sometimes sleeps in strange postions even after having a =
T&A. She no longer snores though. She will wake up early in the morning, =
(before 6am) no matter what time she goes to sleep at night and =
regardless of whether she takes a nap.
Brenda
Jennifer in Sydney
>In a message dated 96-05-21 14:17:08 EDT, lle...@davlin.net (Len Leshin)
>writes:
>
>>I'm curious about this. How many parents out there have this problem? Avi
>>gets up still in the middle of the night half the time but I've always
>>problems, how many of those children snore (since adenoid hypertrophy can
>>cause sleep apnea which causes restless sleep) ?
US TOO!!!!
Rachael always wakes the earliest in our house (somewhere between 5am -
6am). Quite regularly she will be awake in the wee hours of the morning for
no apparent reason. She just comes and stands quietly by our bed and Tony
or I tend to get a bit of a shock when we wake with the feeling of being
watched and find ourselves staring Rachael straight in the eye. We put her
back to bed (firmly) but she just gets out again. Usually takes about 4
trys at putting her back - we've tried taking her into bed with us but she
won't stay still and sleep there either.
Regards
Jennifer,wife of Tony, mom of Melissa (4NDA), Rachael (3DS), Greg (1NDA),
in Sydney, Australia
kiw...@s054.aone.net.au
Mary Wilt
Len:
If our kids got extra catalase, would that ameliorate the overproduction
of H2O2? Can you "take" catalase?
Just thinking...
Mary
Mary Wilt
donna...@googlemail.com
She awakes at 4am every morning without fail often comes in to bed sometimes goes back to sleep but other times will stay up chatting banging making noises, we're so tired we try and ignore her but both myself and my partner don't end up sleeping.
She's so tired during her school day by the afternoon she often with falls asleep (at school) or is irritable ( pulling other children's hair, kicking, screaming at the top of her lungs ect...
On the basis of this her Paedaitrician gave us this to try for a month. I'm reluctant to give it to her because I'm scared, I hate medicines at the best of times and this poor kid has had her full share from birth.