Immune system disorder anyone else??????HELP!!!
researchermom
I am a mom of 3 wonderful children my youngest Natalie was diagnosed
at 6 week's of age with A.E.
Since then i have noticed everytime she get's sick no matter how much
zinc i give her, her body reject's it and she get's the rash and so
on. When we did her original blood work for zinc it showed little to
no zinc whatsoever.
as she grow's of course the ammount goes up but here recently, if
anyone sneeze's in her direction she has an infection of some sort
that wont go away for a week or so! I have read and read and realized
my child is the 1%
they dont speak about. A.E. is her only diagnosis at this point
however at 150mg of zinc a day her blood level show's the perfect zinc
level{1.6}. we are on zinc made by the nature company. The dr.
diagnosed her right away and he talk's to the genetic's dr at the
medical college of georgia { were in augusta georgia} and he realy is
no help at all,
I have been emailing dr kury in france but at the moment i do not
have the 500.00 they want to test her blood. She is growing normally
but constantly get's sick.its normally virus's as she is in preschool.
there is no problem with growth other then complaints of her muscle's
witch is recent{last 3 mponth's}... In the last month she has had the
flu , a stomache virus twice, strep throat, and before strep a 103.0
degree fever with lethargy and no other systems yet when they check
her blood they cant find any bacteria's so they keep saying virus they
checked for lukemia and it was negative,mono was negative cystic
fibrosis negative, Im at my whit's end all and i need your help. There
are only a few of us but our research and our voice one day will make
history.. On 2005 I stated a support group on myspace, hoping to find
some answer's after i finally gave up without hope i found this group!
You can join my myspace group also its in public groups my email addy
on there is one i no longer use but you can look me up as beth
roswech...
Make sure in your friend request it says ae as i am set to private!
Anyhow untill then thank you all for your support and i will be
checking my yahoo and myspace mail hourly for your input!!!!
Thank you all so much!
Natalie's mom!
Beth
April
Welcome to the group. I am sorry Natalie is sick with so many viruses
lately. If her zinc levels are good it could be a number of things.
It's possible it's just the normal preschool sicknesses. They all
seem to gang up at once and I feel like, with strep, it sets the stage
for a decreased immunity. Plus, children with AE aren't going to
absorb zinc as well while they're sick so it sometimes turns into a
vicious cycle for a while. It's also possible that she could be
lacking in other vitamins/minerals/nutrients. If you don't give her
one already, maybe a multivitamin would help. My youngest is super
picky and basically lives on carbs and dairy. I try to get her to
take a multivit daily. Luckily she doesn't have AE.
I noticed you have her on 150 mg zinc. Is that per your dr or what
you've figured up? It seems a little much for a preschooler.
Somewhere between 30 and 60 might be more like it. 1-3mg/kg of body
weight. It's not going to hurt her but it might cause some
gastrointestinal upset. What she can't absorb (which will be the
majority of that) will just get spilled out of the body as waste. My
7 year old takes OTC tablets. They are nature made (30mg) and sundown
(50mg), for a total of 80 mg/day. The mg listed on the bottle is the
actual mg of zinc, no figuring needed. It's a relatively new change
pharm companies made a few years back.
If she continues to get infections, then keep at the drs to check her
blood levels again for anything that may be out of the ordinary. Let
us know how things are going and please don't hesitate to ask anything
or just rant.
-April (Claire's Mom)
Also, I'm not sure if you've been told this (several people on here do
this already so I'm sure you know) but Natalie should have her blood
drawn and zinc, copper and alkaline phosphatase levels checked every
year at least. 6 months is better while she's rapidly growing. After
about 5 years, 1x/year is fine.
Beth Roswech
| Hi April, Its great to hear from you! I figured out the zinc level myself.. I have tried to get the dose just right to where her rash is gone but her depression is still there and at 4 i am amazed i even say that.She has been sick for a month now and today i am putting my foot down and having them do more test's.. The dr said try multivitamens and i tried them and to no avail she threw it up along with her diner and zinc and antibodies for strep. When tested as a newborn she had no zinc present after breast feeding stopped. or it was in the negatives or something i cant remeber.. she just seems to be that 1% that the supplement's dont alway's work for! Anyhow we are off to either the dr or emergency room depending insurance and ill give you a update as to what we find when i find out! Thanks so much! Beth --- On Tue, 1/26/10, April <grape...@gmail.com> wrote: |
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