Conference moira::parenting

    Dear Joyce,
    
    I am sorry to hear that Cameron has such health problems.  I pray that
    he will turn the corner and that your family finances will improve. 
    The lack of security is terribly draining.
    
    Laura
    

Brad was diagnosed as failure to thrive, but it turned out to be due to the
high location of his ostomy relative to his intestines, so he wasn't able
to get enough nutrients out of his food before dumping it into the bag.
They tried lots of things including beefing up his Pregestimil with MCT oil
(it just adds calories), but since he also had reflux, he wasn't always able
to keep enough down to gain any weight.  He finally reached 7 pounds right
after they did the surgery to reconnect his intestines.  He was 6 months old
at the time.  He also has multiple health problems, but the failure to thrive
is the only one in common with your son, though he does take the Preventil
from time to time for a wheezing he gets in his lungs due to the severity of
his premature lung disease.

Might it be possible for you to add calories to his food similar to what I
did with the MCT oil?  And if you can MCT oil, I've got a quart of the stuff
with maybe a half-cup used that seems a shame to let go to waste (the jug 
cost $60, and that was after my medical insurance).  As far as not being 
able to afford the other formula, many companies have special programs where
you can either get free formula or pay a reduced rate and buy direct.  There
are forms you need to fill out and you must meet some income guidelines, but
I would expect you may meet those given your husband's unemployment status.
Start by asking the doctor or calling the formula manufacturer.  

Best of luck.
Cathy

    First of all, failure to thrive is too complex a syndrome for you to be
    taking on blame. If you keep it up, I'm going to tell you that you are
    egocentric. OK ?
    
    As I understand it, the syndrome is sometimes accompanied by
    developmental delay. If that is the case, have you tapped in to an
    Early Intervention Program (I'm hoping you live in Massachusetts)? The
    director of the local EIP recently alluded to a case of a child (older
    than yours) who isn't growing...no medical explanation but, at least,
    the knowledge that someone else is dealing with it. The EIP's offer
    support to parents as well as services to children.
    
    Also, it seems the state has a program called Common Health. It is a
    supplemental health insurance program designed for families whose share
    of medical costs is prohibitive. I know there is a premium; I may be
    able to get more details.
    
    I know that when I get really stressed out I begin to deny some of my
    problems, especially when the solutions require action and energy on my
    part. If that $11 a day habit was helping your son, take 3 deep breaths
    and get up the energy to go back to it. You have no choice for now and
    it is not going to be forever. If you really can't make ends meet, take
    your case to the local food pantry, parish priest, welfare office (food
    stamps) or whatever. You've got to take it one step at a time.
    
    I know that in some cases Medicaid covers children with health problems
    even if other members of the family do not qualify. You may want to
    check on that.
    
    Tap in to some support group. I find that talking to other parents who
    are grappling with the medical establishment, their children's
    developmental delays, and life in general helps. You really aren't
    alone and you will find the courage it takes to keep going.
    
    Good luck.
                      

If you are in MA, there is also a program to help parents who have children
with complex medical problems and is called the Caileigh Mulligan Program 
(not sure of the spelling).  They pay for services for people who make too
much money to qualify for the standard programs, but not enough to pay for
what the child needs.  My Brad would have qualified for that, but fortunately
his extended hospitalization was able to fix the big problems.  To qualify,
you have to apply for Medicare for the child at the nearest Social Security
Office, get rejected, and then apply for Caileigh Mulligan.  You can request
that Social Security pushes the paperwork through if you tell them you
know you will be rejected based on too much income (assuming you will be)
and that you need the rejection to get started on the Caileigh Mulligan
forms.

Then again, you may find that he does qualify for Medicare.  The hospital
should know about all these programs.  That's how we found out.  You may 
want to ask to speak to the hospital's social worker, or ask your pedi for
a referral to get some of this information.  They should have it.  There 
are a lot of things out there to help in situations such as this, but you've
got to look for them.

And don't think the failure to thrive is something you are doing or not doing.
Sometimes the doctors will try to treat it like it's your fault, but I think
that's when they can't figure out what the problem was.  We used to bring
Brad's twin to the hospital and say, see, we do know how to grow a baby.
And I have to admit it was kind of funny when one of Brad's doctors came
in, saw Jessica, and asked how old that one was.  

    
    I have info on Mass Common Health at home. I'll try and remember to
    bring it in on Monday.
    
    Chris
    

    I really can relate and sympathize on this one.  It seems that just as
    you get to understand and cope with one condition (medically or
    financially) something else seems to sneak up and kick you in the butt!
    
    There have been numerous times when I've wanted to throw up my hands
    and scream "I've had enough!"  and you definitely deserve to do that.
    
    The way I see it, if you have no insurance, and between the two of you
    there's not an awful lot of income you should qualify for some sort of
    either free or reduced cost medical care.  I know Umass Medical in
    Worcester has guidlines according to income and the number in the
    family.  I think I remember a family of 3 being something like $20-24K
    peryear receives free medical care.  It is something like double the
    national average.  You may also qualify for MassHealth for the children
    under 18 if you have no insurance.  Have you done any research for
    clinics in your town?  Start with a call to the Health Department, or
    Department of Public Health in the State.  Quite often they can at
    least do the routine innoculations, and some medical care.  Don't know
    where you live, but have you explored the WIC program for nutrition? 
    Where you and the children receive high protein food at the
    supermarket.  This is not food stamps, but a separate program, and you
    still can make a modest income and still receive the food.  Also
    contact your town hall and see if and when they distribute food like
    cheese, peanut butter (I know Cameron is allergic to it, but you still
    have to eat).
    
    As for the older children wanting college, there would seem to be many
    options.  Enlisting in the millitary services, they can go to college
    while on duty, or get college credits (GI Bill type thing) to go to
    college after discharge.  There are scholarships available through
    innumerable organizations, or colleges with coop programs where you
    attend class one semester and work the alternate one, and so on. 
    Northeastern University in Boston has one of the best coop programs,
    from what I've heard.  Perhaps working a day of two a week, and
    attendng classes the other two or three.  I have one neighbor who
    attends classes days, and demos for some home product party at night,
    she also works weekends at the donut shop downtown.  (parents divorced
    in her first year of college)  Another one of my sitters lives on
    campus, and works in the college bookstore nights and weekends, summers
    she comes home and work as a nanny Mon-Fri, and at the local
    supermarket both weekend days.  It can be done, and it shouldn't have
    to be your burden.
    
    Something very important is to give yourself a break!  Get someone to
    take the children, preferably a relative or someone you won't have to
    pay outright, or exchange your night of sitting with the one who takes
    your kids.  Then even if all you do is go to McDonalds, or just take a
    walk in the Mall or a local lake or river, at least you two have had
    some time to yourselves, to act and talk as adults.
    
    Depending on where you are, you may qualify for for Respite care.  This
    is sort of like free babysitting for parents of chronically ill
    children.  (I can give you the contact in my area (MA) if you're
    interested)  
    
    I do relate to the roller coaster that asthma presents, along with the
    hassle of keeping the neb machine constantly at hand.  We went through
    a particularly nasty asthma attack a few weeks ago.  As murphy's law
    goes, his dad had left early to take an exam in Boston, and the attack
    started after he'd left.  I spent the day between the pedi's office, on
    the phone with the doctor later, the asthma specialist, and eventually
    in the hospital ER, getting more neb treatments every 15 minutes.  All
    this and all by  myself, I was ready to scream by the time that weekend
    was over.  And of course you just *have* to arrive at work Monday
    morning looking chipper and rested and ready to tackle the world! right?
    
    Sorry to ramble, I've been there too, and thought some of my survival
    techniques might lend a little encouragement to you.
    
    Take care, and lots of hugs to all of you!
    Lyn

First, I would like to thank everyone who responded, both here and to me
directly.  You have given me some very valuable information and support. 
The day that I wrote this note I was feeling very down.  In general,
Cameron is doing well.  My main concern is his weight, but with what I have 
seen here in this note and the one on Failure to Thrive, I'm a little less
concerned.  We'll see how well he's doing tonight ... weigh in day.

Re:  .1
Laura, thank you so much for your prayers.  They are greatly appreciated!

Re:  .2 and .4
Cathy, several of your suggestions are already being done.  I do everything
I can to add calories to his diet.  We have spoken to several
Nutritionists, including one at UMASS Medical.  They told me to reduce his
liquid intake, unless it contains Vivonex TEN, and increase the amount/
variety and timing of food given.  Many small meals may be better than
three meals a day.  They also suggested adding a teaspoon or two of corn
oil to each and every meal.  This can be substitued with margerine (with no
milk of course).  UMASS Medical was suppose to be looking into getting this
stuff direct from the Company for me ... but the Nutritionist I was dealing
with has since moved down to Virginia ... I don't feel her mind was on the
task.  I am in the process of making contact with a new Nutritionist at
UMASS now.  Also my family doctor is checking into sources for the VIVONEX
as well as insurance options for us.

I called the social security office, they gave me the number for medicare. 
When I called that number they said that me son was too young to qualify
for medicare.  When I asked about the Caileigh Mulligan program she didn't
know what I was talking about.  Did you possibly mean Medicaid?  I'm
waiting for a call from them.  I will ask again when I talk to them.

Re:  .3 
I know in my heart that failure to thrive is not my fault.  But ... some 
times it feels that way!  I just try to do the best within our means.  I
had not heard of Common Health ... I will check this out.  We are currently
getting support from the Local Pantry ... but not for long.  We won't meet
the guidelines much longer ... but they have been a tremendous help.  We
were also receiving aid from WIC (they would not pick up the VIVONEX) but
again we make too much money now.  I also have a call in to check about
Medicaid.  As for a support group ... you people are wonderful!  That is
the only support I am plugged into so far.  I am looking into a support
group for children with asthma.

RE:  .5
Chris, please send me the info you have on Mass Common Health.  It will be
greatly appreciated.  My mail stop is:  MSO1-1/J50 or  Node:  ICS::SIMMONS
or just give me a call.  My DTN is 223-6109.


RE:  .6 

Lyn, I will definitely check into the income guidelines for UMASS Medical,
because that's where my family doctor has referred us.  I already owe them
money that my insurance company rejected.  As for WIC, as previously
mentioned, we were receiving help from them, but we make too much money
now.  What's hard is that once you are disqualified for one you seem to be
disqualified for all.  The guidelines seem to be all the same.  They do not
seem to allow for the fact that once you have been unemployed for any
length of time, that it takes you time to get back on your feet.  The only
group that does is our local pantry.  They even told me that once we did
exceed the income guidelines, to continue to come for a month or two,
whatever it took to get back on our feet.  They have been wonderfully
supportive.  In turn I have been volunteering for them, 4 hours a month, on
distribution day.  As for the my step-kids going to college ... we told
them they would have to apply for as much aid as possible.  That
unfortuantely we were just not in any position to help them.  The oldest
one got a wonderful scholarship/aid/loan for Springfield college, whatever
the scholarship doesn't pay, will be picked up in a loan repayable after
graduation.  So he is all set.  The younger one is going to a private
Prep/High School and is getting financial aid and the remainder is being
picked up my his mother (yeah!).  So he is all set.  So things are falling
into place.  

As for the asthma.  I also know what a roller coaster the asthma can be. 
Sorry to here you had to go through this all alone.  How old is your son? 
Cameron's second hospitalization for asthma was a similar situation ... dad
gone and a five year old to deal with too.  Thank god for neighbors.  I
hope your son is over the worst of it.  Is he on medication all the time
for his asthma?  I'm always curious to learn about the different
medications.

Thanks for the hugs!  I need lots of them lately.

RE:  the responses I got off-line
Thank you one and all.  Especially you Mike for sharing Stephans history
with me.  It has been greatly appreciated to know that I am not alone.  And
that there is life after your child reaches 23 pounds!

Thanks again!

Joyce

    
    I sent this to Joyce, and am posting this here for general info on
    Mass CommonHealth
    
    
    Mass CommonHealth (CH)
    Full or supplemental coverage
    for adults or children meeting Title XVI (SSI) disabilities
    adults must work a minimum of 30 hrs/mo, residents of MA, not eligible
    for
       Medicaid or SSI
    children under age of 18, residfents, no Medicaid or SSI
    enrollment periods July 1 Oct 1 Jan 1 April 1
    
    Benefits
    Health Care Professionals
     physicians
     physical, occupational, speech therapists
     etc
    Home Services
     home health aide and skilled nursing services
    Inpatient and outpatient hospital services
    Clinics and health centers
    Prescription drugs
    Evaluation of children with special needs
    Early intervention services
    Transportation
    Dental
    Vision care
    Medical Equipment and supplies
    
    there's a lot more than this listed
    
    Now what everyone wants to know...COST
    
    Premiums are listed as MONTHLY PREMIUMS
    
    Family size							Full	Suppl.
    
    	1		2		3		4	
    
    below $13K	     below $17K	   below $21.5K	  below $25.5K	$0	$0
    13K-15K	     17K-20K       21.5K-23K	  25.5K-27K	10	6
    15K-18K	     20K-23K	   23K-28K	  27K-32K	28	17
    18K-21K	     23K-27K       28K-33K	  32K-37K	48      29
    21K-24K	     27K-31K       33K-37K	  37K-43K	68	41
    24K-27K	     31K-35K	   37K-41K	  43K-48K	90	54
    27K-30K	     35K-39K	   41K-47K	  48K-53K	112	67
    30K-33K	     39K-43K	   47K-51K	  53K-59K	132	79
    33K-36K	     43K-47K	   51K-56K	  59K-64K	154	92
    36K-39K	     47K-50K	   56K-60K	  64K-70K	174	104
    39K-42K	     50K-55K	   60K-65K	  70K-75K	196	118
    42K-45K	     55K-58K	   65K-70K	  75K-80K	216	130
    45K-48K	     58K-62K       70K-74K	  80K-86K	238	143
    48K-51K	     62K-66K	   74K-79K	  86K-91K	258	155
    over 51K	over 66K	over 79K	over 91K	300	180
    
    1-800-662-9996 for more info on covered services
    
    
    Good luck
    
    Chris
    
    P.S. I have a few copies of the complete CommonHealth package in my
    office, if you'd like one send me mail.
    
    

    
    Regarding Mass CommonHealth.  I called them today.  In short, we as a
    family to not qualify.  We are not disabled.  However, they said that 
    Cameron may qualify and they are sending me an applicaton.  If they 
    just pick up some of the expense that would be great!
    
    Regarding Calee Mulligan:  The welfare office told me that this program
    was designed for chronic debilitating illnesses that require 24 hour 7
    day a week medical care (i.e., rest home type environment) and that she
    felt that Cameron did not qualify.  If those are the guidelines I agree
    with her.  She did say that I felt he did qualify that we could apply.
    
    Regarding UMASS Medical.  I finally got a hold of the new Nutritionist
    and had quite a nice talk with her.  She felt that as long as Cameron
    is eating a well balanced diet (minus milk products) getting a vitamin
    and calcium supplement.  That there was no reason to keep Cameron on
    the Vivonex.  We have already proved that he can gain with additional
    calories.  What we need to do is just boost the calories.  There is a
    product called Polycose (over the counter) that is made for just that
    purpose.  I just happen to have three cases of powdered polycose on
    hand!  This can be added to just about anything he eats.  Each
    tablespoon contains 23 calories.  So ... every bottle of juice will 
    have three tablespoons added.  I tried it tonight and he seems to take
    it readily (slight sweet taste).  It can also be added to cereals,
    baked goods, mashed potatoes, just about anything.  
    
    She also mentioned something that I read here in this note somewhere.
    That children with breathing problems require almost double the 
    calories to add weight normally.  I've somehow known all along that
    these illnesses (allergies, asthma and failure to thrive) were somehow 
    all related or at least that one is triggering the other.  I don't know
    why, but somehow that is reassuring to know.  I guess because it at
    least tells me why he not gaining.
    
    So, in general, I feel things are looking up.  We have found a new
    source of calories at a much more affordable price, we may have found
    at least one source of health insurance , and we are taking a 
    much needed vacation next week, that luckily was paid for last year 
    before things got so tough.  We'll spend lots of time with both kids 
    and try to fatten them up ... 
    
    Aren't we all suppose to gain weight on vacation?
    
    Joyce
    
    
    

    >Aren't we all suppose to gain weight on vacation?
    
    Go on a cruise...I gained ten pounds in 7 days :^|
    
    Glad to hear things are looking up.
    
    Jodi-

    Well, vacation must be the answer.  Cameron gained 10 ounces since his
    last visit.  Does anyone know what the average weight gain/month should
    be?  I meant to ask the doctor last night but forgot.
    
    Joyce