I just used table salt. 1/8 tsp of salt in each bottle (8 oz) - my first
son with CAH. The sodium chloride is used for breast fed babies. And it is
harder to give and the right amount. I breast fed my second son with CAH,
and the doctor was not prescribing the right amount of sodium chloride.
That cause weight lost and it was terrible. He had to go on an IV for a
week.

Make sure the doctors check her sodium, plasma renin and 17OHP to make sure
that the blood levels are fine. I had the blood checked every month
(sometime every two weeks if it was off).
Roberta Preston
preston@...
----- Original Message -----
From: <CAHsupport@yahoogroups.com>
To: <CAHsupport@yahoogroups.com>
Sent: Friday, March 30, 2001 3:05 AM
Subject: [CAHsupport] Digest Number 70


>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. Giving salt supplements
> From: "Jim & Debbi Watson" <jrwatson@...>
> 2. Re: Digest Number 68
> From: "preston" <preston@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Thu, 29 Mar 2001 11:43:07 -0600
> From: "Jim & Debbi Watson" <jrwatson@...>
> Subject: Giving salt supplements
>
> Since you mentioned that you give your daughter a bottle, why not give her
> the amount she needs in the formula? That is what we did. You will find
as
> she gets older that she really will prefer the taste of salty things...and
> even eat things if you just add the salt! When my son was a baby, I
nursed
> him two of his feedings and bottle fed the other 4. In those 4 I gave him
> the salt in the bottle...knowing how much he was likely to eat. As for
the
> other meds, another hint would be to dissolve the pills in some formula or
> breast milk...put a bottle nipple and ring in her mouth, once she starts
> sucking, squirt in the meds and they will suck it down. This will also
work
> when they are sleeping and you have to get the meds in at odd hours.
>
> Hope this will work for you!
> -Debbi
> -----Original Message-----
> From: Jenny Humphrey <JHmphr3@...>
> To: CAHsupport@yahoogroups.com <CAHsupport@yahoogroups.com>
> Date: Saturday, March 24, 2001 8:24 AM
> Subject: [CAHsupport] any tips on giving salt supplement?
>
>
> >Hello. This is Jenny H. I just wondered if any of you had any tips on
> >getting your baby to take the sodium chloride supplement. Hunter
> >takes both her steriod and florinef with no problems but hates the
> >salt stuff and of course that is the one she has to take tid. Right
> >now when it comes to med time we give her the first two by having her
> >suck on my finger and squeezing them in the corner of her mouth. We
> >tried this with the salt with no luck. So we tried squeezing it in
> >while she is drinking her bottle. Which works ok, she takes it all,
> >but right afterwards she gets the taste in her mouth and refuses to
> >eat any more. I've been trying to wait until I think she is close to
> >being done then give it to her but I really think there has to be an
> >easier way to do this one. At least she won't have to be on this one
> >forever they think only a year or so when she starts eating other
> >food. I had to get title 19 insursance and I am so glad I did. I
> >picked up her meds at the hospital after she was born and this sodium
> >chloride which they said is basically salt water, cost $255 for a
> >month supply!!!! And I suppose they just get more expense as they get
> >older and take larger doses. I appreciate any advice you guys have.
> > Thanks,
> > Jenny H.
> >
> >
> >
> >
> >
> >Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
> >
> >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
> Date: Thu, 29 Mar 2001 21:53:11 -0500
> From: "preston" <preston@...>
> Subject: Re: Digest Number 68
>
> I recommend this manual (the chapters on CAH, adrenal insufficiency)from
The
> Pediatric Endocrinology
> Nursing Society (PENS) is a
> voluntary non-profit specialty
> nursing organization founded in
> 1986. http://www.pens.org/
> http://www.pens.org/orderfrm.htm
>
> PENS EDUCATIONAL MATERIALS ORDER FORM
>
> All prices below include postage and handling.
>
> PENS Nursing Resource Manual: 3-ring "in progress"
> resource binder with 1 chapter (Overview of Endocrine
> System).
>
> _____ @ $20.00/each
>
> Additional Manual Chapters: Each chapter contains the
> pathophysiology, treatment, nursing indications and parent
> instructions for the subject endocrine disorder.
>
> NOTE: There is a 10% discount for an order of all
> chapters with the binder.
>
> _____ @ $6.00/each
>
> _____ @ $88.20 for entire
> binder (Resource Manual + all
> additional manual chapters)
> PENS Educational Materials List: A 40 page
> comprehensive listing of patient, family, and nursing
> educational materials available through a variety of
> organizations, institutions, and web sites. Includes descriptions
> and ordering/contact information.
>
>
> _____ @ $6.00/each
> Cortisol Replacement Therapy Booklet: Describes
> rationale and practical application of cortisol replacement
> therapy for patients and families.
>
> _____ @ $6.00/each
> Partners in Education: A binder with informational sheets on
> 43 endocrine diagnoses, and 20 endocrine medications that
> the nurse can share with patients and families. Also includes
> section on 75 endocrine nursing tools (flowsheets, checklists,
> protocols, letters, and prescriptions) that can assist the nurse
> with his/her practice.
>
> _____ @ $65.00/each binder
> for PENS Members
>
> _____ @ $75.00/each binder for Non-members
>
> TOTAL
>
>
> MANUAL CHAPTERS:
> ___Adrenal Insufficiency
> ___Marfan Syndrome
> ___Congenital Adrenal Hyperplasia
> ___Oncology-Related Endocrine Disorders
> ___Cushing Syndrome
> ___Osteogenesis Imperfecta
> ___Diabetes Insipidus
> ___Overview of Endocrine System
> ___Graves' Disease
> ___Prader-Willi Syndrome
> ___Hypoglycemia
> ___Precocious Puberty
> ___Hypopituitarism
>
>
>
> PLEASE PRINT CLEARLY
>
>
> Member of PENS? _____Y _____N
>
> Name:
> ________________________________________________________________________
>
> Address:
> ______________________________________________________________________
>
> Phone: (_____)__________________
>
>
> Mail Completed Order Form to:
> PENS
> P.O. Box 2933
> Gaithersburg, MD 20886-2933
>
> Additional postage may be required for orders mailed outside the
continental
> U.S.
> A check payable to PENS must be included with your order.
> Prices subject to change without notice.
> Allow 6-8 weeks for delivery.
> If more than one type of material is ordered, you may receive materials in
> more than one mailing.
>
> If you have questions regarding your order, please contact us at
> manual@...
>
> NOTE: For orders outside the USA, use one of the following methods of
> payment:
> 1) A check imprinted with the name of a U.S. bank and made out in U.S.
> currency.
> 2) An international Money Order written in U.S. funds.
> 3) A U.S. postal money order written in U.S. funds.
> 4) Travelers check in U.S. dollars.
>
>
>
>
http://congenitaladrenalhyperplasia.org/cgi-bin/cahmb/cah.cgi?read=014376-00
> 0000.msg
>
>
>
>
> ----- Original Message -----
> From: <CAHsupport@yahoogroups.com>
> To: <CAHsupport@yahoogroups.com>
> Sent: Tuesday, March 27, 2001 3:03 AM
> Subject: [CAHsupport] Digest Number 68
>
>
> >
> > There are 2 messages in this issue.
> >
> > Topics in this digest:
> >
> > 1. Here's that site!
> > From: "Angi Strong" <jaade1@...>
> > 2. Re: Here's that site!
> > From: JHmphr3@...
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> > Date: Mon, 26 Mar 2001 14:56:11 -0000
> > From: "Angi Strong" <jaade1@...>
> > Subject: Here's that site!
> >
> > > The CAH Booklet " Your Child with Congenital Adrenal Hyperplasia"
> > > > > written by Assoc Professor Garry Warne from the Dept of
> > Endocrinology
> > > > > at the Royal Children's Hospital Melbourne Australia is now
> > available
> > > > > on the Net
> > > > > address is: www.rch.unimelb.edu.au/publications/
> >
> >
> > Found that address I was talking about. Several of us have this book
> > and it's really a good one!
> >
> > Angi
> >
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 2
> > Date: Mon, 26 Mar 2001 10:40:08 EST
> > From: JHmphr3@...
> > Subject: Re: Here's that site!
> >
> > Thank you very much for that site. I just read the book and it is a very
> good
> > one. I will probably give this to family members wanting to learn more.
> > Thanks again!
> >
> >
> > [This message contained attachments]
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>