Have any of you noticed?
Natalie's Mom
disorder.. Our dr has us on zinc sulfate not gluconate.Every time
Natalie get's sick her body reject's her zinc depending on what kind
of illness/virus and how long it last's determine's if she lose's her
hair or her skin start's rashing and bleeding.It take's Natalie a long
time to heal from any injury,even a bug bite and a bruise will last a
month or so.... She is allergic to sunscreen because of the metal's
they contain they make her feel like her skin is on fire...i just
found one this past year made with just zincoxide, so she can play
outside at the lake or beach now:) We have been confined out of
public for 10 day's recently because she was picking up everything
viral over and over again. The dr.s have never checked her alkaline
level's or copper..In parent term's can you exsplain that part to
me???
*Also i noticed where someone noted they went 2 month's without zinc,
in my exp. with Natalie that would more then hospitalize her..she did
have the reflux as a baby, she also take's breathing treatment's
everytime the seasons change..I am so feed up with people reading web
md and reasearch that i have already done its like they recite it to
me.. No one here at the Medical college of georgia has ever seen any
onw with a.e. I was also told she is the only patient with ae they
know of in this state... GO figure! So it's up to our group to help
each other with our own research!
PLease reply!
~Beth~
April
My daughter is doing well. It sounds like Natalie is having a rough
time. I think everyone else has had the situation where their
children were pretty sick and then once zinc supplementation started,
they were like brand new. I know it was that way for us and now
Claire is the healthiest one when sickness goes around. She either
doesn't get sick or when she does (which is rare), she gets over it
quickly. She does still have flair-ups for whatever reason (growth
mainly) and will get rashes around her mouth and bottom but when she
does, I weigh her, calculate her requirements and up her zinc and she
levels out again. I do know that for some children the zinc sulfate
can cause diarrhea and then of course if that is happening, then
whatever zinc was in the dose just goes right back out. For some on
this forum zinc sulfate is better tolerated and for some, like Claire,
zinc gluconate is better. She could never go 2 months without zinc
but perhaps as an adult it would take longer to notice symptoms and
two months wouldn't be a biggie.
I really just don't know why Natalie could still be so ill. I can
only say what I would do in that case and I guess I would maybe stick
with giving her the needed dosage, possibly switching to gluconate to
see if that helps, maybe adding some vitamin c with each dose, make
sure she gets the dose every morning and every evening and try to get
her to eat more red meat (lots of zinc in there) and/or oysters (I
know, kids think they're yuck but they are LOADED with zinc).
I don't remember reading, how old is Natalie and how much does she
weigh? I really feel like you're giving her more zinc than necessary
and theoretically it shouldn't matter but maybe by some small chance
it's making a difference in absorption. ?? Please don't take offense
at that. You're probably just fine but it's an explorable option
right now. I'd have to do more research on that but let's start with
her weight and age and while I'm waiting for you to respond, I'll look
into some things. I'm a cytogeneticist currently studying to become a
nurse (nurse practitioner eventually) so I'll look at my textbooks and
resources to better understand the mechanism of the absorption when
the ligand is absent (as is the case with our AE kids). The only
thing I know right off hand is that with some things, too much of it
in the body makes the body think it's just fine and it shuts off it's
absorption mechanism. I don't think this is the case with zinc, but
it doesn't hurt to look into it. More than likely with zinc, since
the actual ligand (enzyme) is missing, then absorption occurs via leak
channels into the cell. It's sloppy and inefficient but it's more
than likely how children with AE can survive as long as they are given
large doses of zinc.
The only other things I can think of would be 1.)That the zinc sulfate
is not being compounded properly at the pharmacy. 2.)That there is
something else going on not related to zinc. Hopefully #2 is not the
case.
-April
p.s. Please also give me the zinc Rx from your dr. How did he/she
order it? Mg/L or whatever, that sort of info would be helpful.
Thanks! And hang in there. It's seems like you are having a very
frustrating time of things. We'll try to help as much as we can.
Beth Roswech
| Hi April! Thank you so much for understanding and letting me know your situation and input! I have kind of been left out in left field where the zinc comes in.Natalie is 4 almost 5:) 4-9-05:) anyhow since i read your last post about 150mg being way out there i changed to 50mg a day she weighs about 40 pounds.. Zinc is not covered by our insurance in liquid form so i have been buying over the counter zinc for a while{ they want 100.00 for a month's worth of zinc}.However i just found chelated zinc witch is gluconate zinc with no preservatives at cvs.I read you saying 1mg per kg and im not that great in math but I'm sure 50mg would be enough.She hasn't had a rash since i switched, other then Roseolla {Sp} witch she has now! so were on a weird combo ATM. We are doing benedryl 1tsp every 6 hours for itching, 2tsp rotate Motrin and Tylenol every 4 hours for temp. and breathing treatments twice daily{albuterol}. I know my spelling is awful in the last 4 years i feel as if my brain has been sucked out of my head lol! It really has been kind of left up to me the Dr just asks how much I'm giving now since every time Natalie gains weight the pharmacy wants 30.00 extra dollar's for the zinc in simple syrup. her hair is thin, but very fine and sleek, she has been complaining of muscle cramp's and the Dr is sending us to allergist but we have to be off of antihistamines and all meds but zinc 7-10 day's before so i had to reschedule. We started the vitamin's also and she chew's the zinc tablet as long as i give her a yummy chaser:} I have given myself General anxiety disorder between Natalie and my aspie child I just can't control my nerve's if that makes since..Your a mom so I'm sure you understand, 2 diagnosis that i cant heal just make them comfortable. I recently applied for ssi for Natalie because she is picking up so much illness's that we are having to take her out of school for 10 day's at a time. What is weird is that Natalie never gets a rash around her mouth since birth just mainly on her but cheeks but when it happens it's drastic, one min she is fine the next she is bleeding and Vaseline would roll off . I use Flanders's butt ointment when this happens as the zinc level is very high..The responce is quicker and sooth's faster. I am very lucky that this child will eat about anything and she eats a lot of red meat on a regular basis she also loves salad...However when hidden valley changed something in their ranch about a year ago it broke her mouth out immediately the label was the same but I know something there was different so now we use a store brand.. I also used to be in the medical field about 10 years ago as a Dr assistant but never certified in anything,I normally go on instinct and what my oldest 2 children have been through.I try to not take her in to the Dr.office much because while there she always pick's up something. --- On Sat, 2/20/10, April <grape...@gmail.com> wrote: |
|
April
not well understood (even in a normal person), it's just very
difficult to know anything for sure but here's a theory. Some
background: (you may know this but people reading or someone new may
not) --- People with AE lack a very important enzyme, ZIP4. In a
normal person, during periods of low dietary zinc intake, the ZIP4
enzyme accumulates in the plasma membrane of the cells in the body
(particularly in the intestines). During high dietary zinc there
would be higher levels of zinc in the body and as a response (not well
understood but assumed to be some sort of sensing mechanism-probably a
safety mechanism of some sort to reduce toxicity) there are fewer ZIP4
proteins present at the cell membrane. So...the higher the zinc level
in the body, the fewer proteins (aka ligand/enzyme) on the cell, and
the less zinc allowed to flow into the cell at any given time. This
keeps the rate steady in the presence of plenty of zinc. The body
would be in Homeostasis (at least for zinc anyway). When the body is
deficient, the cell increases the number of ligands on the surface
because it really needs zinc to get into that cell. That's in a
normal person. There are several more proteins I think, like ZIP1, 2
and possibly 3 but they either are also absent in someone with AE or
are present but just are a very clunky and inefficient mechanism for
getting zinc into the cells. I'm going to take a guess and say that
there might be some eensie weensie chance that by increasing serum
levels of zinc to really really high levels, shuts down those 'other'
membrane proteins that transport zinc into the cell. This is just a
very big guess but I suppose it's worth considering.
As for dosage for Natalie, I think you're fine with 50 mg but you
could easily do 60. 30mg 2x/day. You can crush the tablets between
two spoons and stir it into a teaspoonful of honey or grape jelly.
Much better tasting. :) In order to convert pounds to kg, I just
type "40 lbs in kg" in my google search bar and it gives me the
answer. I'm terrible with conversions so this is way easier. Once I
get my answer, 18.14 kg, I just multiply by 3 to get the mg zinc per
day, 54.42. I think you're perfectly fine with the 50 plus a
multivitamin but you could safely do more.
To answer your earlier question, Alkaline phosphatase is low when zinc
is low. I don't know much else about it except that it's needed and
uses zinc and maybe magnesium for whatever action it has in the body.
Copper absorption is inhibited by high zinc levels but normally in
someone with AE, copper won't be affected by supplementation because
most of the high levels of zinc ingested aren't actually being
absorbed. But they still check it anyway, just to be safe.
My daughter has terrible allergies, but they are seasonal. A bit of
asthma but again, allergy season related. I think it's probably two
different problems and not related to the zinc.
Also, yes I understand how a person's brain can go right to mush.
Mine was for years. Still is most days really. I'll spare this forum
examples and anyway, I only ever tell my husband or my sister the
stupid things I do because they still love me regardless!
Keep us updated... :)
-April
On Feb 20, 5:24 pm, Beth Roswech <bethrosw...@yahoo.com> wrote:
> Hi April!
>
> Thank you so much for understanding and letting me know your situation and input!
> I have kind of been left out in left field where the zinc comes in.Natalie is 4 almost 5:)
> 4-9-05:) anyhow since i read your last post about 150mg being way out there i changed to 50mg a day she weighs about 40 pounds.. Zinc is not covered by our insurance in liquid form so i have been buying over the counter zinc for a while{ they want 100.00 for a month's worth of zinc}.However i just found chelated zinc witch is gluconate zinc with no preservatives at cvs.I read you saying 1mg per kg and im not that great in math but I'm sure 50mg would be enough.She hasn't had a rash since i switched, other then Roseolla {Sp} witch she has now! so were on a weird combo ATM. We are doing benedryl 1tsp every 6 hours for itching, 2tsp rotate Motrin and Tylenol every 4 hours for temp. and breathing treatments twice daily{albuterol}. I know my spelling is awful in the last 4 years i feel as if my brain has been sucked out of my head lol! It really has been kind of left up to me the Dr just asks how much I'm giving now since every time Natalie gains weight the
> pharmacy wants 30.00 extra dollar's for the zinc in simple syrup. her hair is thin, but very fine and sleek, she has been complaining of muscle cramp's and the Dr is sending us to allergist but we have to be off of antihistamines and all meds but zinc 7-10 day's before so i had to reschedule. We started the vitamin's also and she chew's the zinc tablet as long as i give her a yummy chaser:} I have given myself General anxiety disorder between Natalie and my aspie child I just can't control my nerve's if that makes since..Your a mom so I'm sure you understand, 2 diagnosis that i cant heal just make them comfortable. I recently applied for ssi for Natalie because she is picking up so much illness's that we are having to take her out of school for 10 day's at a time. What is weird is that Natalie never gets a rash around her mouth since birth just mainly on her but cheeks but when it happens it's drastic, one min she is fine the next she is bleeding
> and Vaseline would roll off . I use Flanders's butt ointment when this happens as the zinc level is very high..The responce is quicker and sooth's faster. I am very lucky that this child will eat about anything and she eats a lot of red meat on a regular basis she also loves salad...However when hidden valley changed something in their ranch about a year ago it broke her mouth out immediately the label was the same but I know something there was different so now we use a store brand..
>
> I also used to be in the medical field about 10 years ago as a Dr assistant but never certified in anything,I normally go on instinct and what my oldest 2 children have been through.I try to not take her in to the Dr.office much because while there she always pick's up something.
>
>
>
> --- On Sat, 2/20/10, April <grapeap...@gmail.com> wrote:
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