Remission?

[Momofsix]

Ok I have a question.. I am very new to CF... I am researching it
due to the fact that I will be adopting  a son with CF  I
asked a case worker how he was doing and they said very well he is
in remission.. can this be?   <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[JazzysMom]

I would never use the word remission regarding CF. Stable, no exacerbation etc=Yes. Remission=No.....CF always exists even if there are no active infections, no exacerbations & no real fluctuation in the level of health. The sticky mucous, CFRD (as applicable), Malabsorbtion etc still exists. That never ceases so remission is an inappropriate term. Not to mention that in order for the no active infections, no exacerbations & no real fluctuation in the level of health to exist requires meds, diligent care & a bit of luck which makes remission a totally unrealistic term IMHO! I hope you understand that I am sure they meant that he is stable, holding his own at the moment etc. If this is what they meant to say then they need to either learn better terms or more about CF....was the caseworker familiar enough with CF to even give you a summary of his health?

 

[NoExcuses]

Ya remission is definitely not a word I would use. Stable, perhaps. But not remission.

 

[EnergyGal]

Dear Laura

To adopt a child with a health contion makes you a Star Mom in my eyes. I wish you all the best with your happy family. I am so happy for your new child with CF who will have a happy family. Cf is not an easy illness but when you have lots of love it makes the disease much more tolerable in my opinion. God Bless You and your Beautiful Family.

Keep in touch with us
All the best to you
Risa

 

[Momofsix]

Thank You all so much... I thought <i><span>Remission</i>
sounded like a word not to be used dealing with CF. When I
 spoke to Brandon he said the breathing  treatments he
was able to stop... I guess we will have to see what  is going
on when he gets here hopefully by the end of the month..  No
the caseworker had no idea about CF at all.   <br>
Also any tips on food I can get him to eat.. he is 13 and just now
ways 80 pounds. his birth mom didn't care for him right  he
didn't see any doctors for a year before he was taken into the
custody of child services.  1 1/2 years ago <br>
<br>
I posted before title.. NEw here need info..... I already have one
son nonverbal on autistic spectrum His name is Michael, <i><b><span
style=" text-decoration: underline;">very</b></i>
challenging at times but more rewarding    this
child keeps my feet planted on the ground and reminds me of what is
really important in life  he struggles just to do simple
things.<br>
 Christopher (adhd), Brandon's brother   will be
joining our family also hopefully by the end of the month I am so
excited  lots of challenges but I am ready!<img src="i/expressions/heart.gif" border="0">

 

[anonymous]

When our son was diagnosed shortly after birth, my dad said he'd heard of someone who had a mild case of CF and maybe that's what our child would have. When we asked out doctor about it he said there's no such thing as mild CF, CF is a progressive disease and progresses differently from person to person. And CF affects people differently.

DS was born with normal lungs; however, with increases in age and infections, eventually his lungs will be affected. So our doctor stresses proper lung care as the most important aspect of his care. Yes, nutrition, vitamins, medications are all important, but keeping the lungs healthy is our number one priority. You can regain weight, but if lung tissue is lost -- it cannot be regained.

I cringe every time I read a story or comment about a cfer who did CPT and nebs early on, but stopped because "the lungs weren't effected".

Liza aka ratatosk mom to a 3 year old wcf

 

[NoExcuses]

Liza, I used to think the same way you did.

But I have discovered over the years that nutrition and weight gain are just as important as keeping lungs healthy.

Nutrition provides the vitamins and minerals needed for the body to repair lung tissue. Nutrition also provides anti-oxidents that can keep lung inflammation down and prevent exacerbations.

In fact, those CFers who have higher weight (indicative that they are getting proper nutrition.... although now-a-days with people being so fat that's not necessarily the case but with a CF it most likely is) have higher lung function.

So now I treat the complete body. I do my CPT, nebs, azithro, etc. But I also eat probiotics in the means of yogurt, and antioxidents in super foods like cherries, stawberries and blueberries. I avoid sugar which can supress the immune system.

Trust me, I used to think the above nutritional info was a load of crap. But there is no question that proper nutrition and weight gain will help the lungs stay healthy.

 

[anonymous]

Dear Mom of Six

If I were you, I would look into a Cystic Fibrosis center near you. I hope you have one that is not to far away from your house. I would ask about THE VEST and all breathing treatments that he needs. I would ask about exercise and if he is diabetic.

I think he can gain weight by eating some home cooked meals and lots of snacks. A person with CF can eat a lot of food. I gained about thirty pounds this year. I ate three meals each day with lots of mini meals and snacks. Now I just gain weight by looking at food lol. Exercise helps weight gain too.

I suggest Granola Bars for snacks, cliff bars, yogurt shakes or just plain ole yogurt. Peanut butter, cashew butter all kinds of nut butter if he is not allergic.

Sometimes when I am hungry and low on snack food, I take a slice of bread and add cheese and melt it. Makes for excellent weight gain if you do this several times a day. Just keep have him nibbling after his meals. I feel that once you can stimulate someones appetite and keep on feeding them little by little taking breaks, the weight just comes on.

Let us know how he is doing and Mommy of Six WOW
Take care
Risa

 

[JazzysMom]

The eating might be difficult for him. If you cant get him to eat large quantities then what he does eat needs to be as high in calories as possible. There are a few things you can do depending on how receptive he is to things. Use cream instead of milk when having hot chocolate. Add cheese (melted or otherwise) to sandwhiches & veggies, peanut is a big one that is great for sandwhiches or on fruit, crackers etc. Carnation Instant Breakfast drink is an alterntive to the high calorie shakes (that some people cant stand) like Ensure, Boost etc. Truthfully it can get expensive to meet the caloric demands for a CFer especially once his health &/or eating are stable! Good Luck!

 

[JRPandTJP]

Depending on his past eating habits you may have to experiement for a while. Good nutrition is the hands-down the most important thing we all can do, but especially in special needs kids like those with autism and CF. In fact, there are some similarities in the autist and CF bodies in terms of some nutritional needs (tendency toward high acidity, digestive difficulties, in some trouble with dariy and wheat gluten as an irritant to the gut). Both seem to benefit from a probiotic (acidophilus like Culterelle) and even some supplements like GSH.

Many clinics will tell you just get calories in them in whatever way you can, fat, twinkies, french fries, whatever they want just add the calories. I think this is hog wash and the worst thing one could do. There are lots of creative ways to add calories that don't require tons of dairy or saturated, omega 6 fats. Here's some of our tricks:

Smoothies: buy the best blender you can we love Vitamix. You can make all kinds of smoothies. Here are 2 favorites: banana/strwberry/orange (1-2 bananas, cup or so frozen berries, 1-2 orange juice, protein poweder [soy, egg white powder, rice protein we aim for 8-12 grams], flax seed powder, and even a little walnut/canola/olive oil. Blend and enjoy. You can also add greens in a powder form and they won't even know it.

Chocolate peanut butter shakes (3 scoops chocolate ice cream[soy or rice dream as alternatives to milk] 3 heaping scoops of peanut or other nut butter and milk [rice or soy alternative]. Blend and enjoy

Also we make sure each meal has a good amount of protein. I hard boil lots of eggs to have as snacks and make dips using mayo and sour cream (soy version is possible). I focus on snacks as a way to get lots of extra calories. We buy Clif bars (power bar) and make sure he eats yogurt/cheese/lunch meat at every snack in addition to lots of fruits and as many veggies as you can. Dips seem to help the veggie thing.

Other than that he eats what I make for the family and this seems to be working well. I only cook with olive, canola, walnut and add flax where I can. These are the oils rich in Omega 3 which is helpful in keeping the body in an anit-inflammatory state. Too much fat from sources rich in saturated fat and omega 6 increase inflammation and a generally less healthy for all of us.

We also make sure he gets good vitamins and supplements to support him further.

I love nutrition and hope this helps. He is older and will have to be a part of the choices so make it fun and maybe he will be open to adding calories in different ways then he is use to. Good luck and let us know how things go as you get settled in.

Your already doing a great job!

Warmly,
Jody
jody@meta4tech.com

 

[Momofsix]

<b>WOW</b> You all are so GREAT!!!!! I am a bit overwhelmed with
the load of info but I will be ok, once Brandon and I get together
and in a routine. He is a  picky eater but because his birth
mom didn't cook and I have  been told that most of his food
was gross or spoiled he is afraid of food  (mental thoughts
makes it gross)    I know we will be fine.I LOVE to
cook and experiment with food. My husband I adopted Michael 9
years ago at age 18 months  we were told he would never walk,
( he was just trying to sit up)  He would never eat
anything but pureed food....  well Michael is 10years old
, walking, actually really healthy. On meds for extreme
abusive behaviors and nebulizer for Asthma   but who
wouldn't be frustrated if you can't  talk??!!  He loves
fried chicken  and Mcdonalds, pizza  ect...  A
stable loving home will do wonders for a person  and I am not
bragging on us but it  is better than where these kids came
from... I could vent  all day. Having 3 bio kids I cannot
understand how a <b><i><span style=
" text-decoration: underline;">mom</i></b> can turn away.
  ok enough. Thanks for all of your help. OH by the way
 Brandon and Christopher, we are praying will be here
 before the end of the month, first week of July at the
latest.. Final stages of all the red tape  then 6 moths from
now  we can actual officially adopt them  but they are my
sons now.  thanks again<img src="i/expressions/rose.gif" border="0">

 

[NoExcuses]

wow you are an amazing person. thank you for doing so much for these kids - you are truely and angel on earth.

 

[anonymous]

I think you need to change your username to "SaintMom".....and I guess I'd better stop whining about the troubles raising one child w/CF.

 

[anonymous]

Dear Angel Mom of Six,

You are such a BEAUTIFUL person. Please get a blog on this site to keep us posted with pictures of before and after of Brandon. We will all rejoice with you.

Your story Touches my heart. Your Husband too sounds incredible. You both are a Match made in Glorious Heaven.

God Bless You All
Risa

 

[Momofsix]

Thanks for all the "compliments" however I am an ordinary
person with a big heart <img src="i/expressions/heart.gif" border="0"><br>
<br>
All of you are <i><b><span style=
" text-decoration: underline;">amazing</b></i>
!!!!!!!!!!!!!!!!!   <b>F</b>or those of you dealing with
CF  being strong and making the best of your lives... for all
the parents whose dreams of the "perfect white picket fence
family may at one time been shattered are now facing it everyday
 <b><span>with all you have</b> <b><span> 
   </b>These children are so blessed to have
those of us who Care and will go to the end of the earth for
them.  <b><span style=
" text-decoration: underline;">FAMILY</b> , (No matter
in what form you become one) is the most important thing in life in
my opinion   If  I can make  someone feel like
they matter and are important and have  a purpose then my job
is done. I guess I get frustrated in which the way our society just
throws kids away for what every reason... inconvenience?  So
give yourselves a big hug and pat on the back you all have
earned it!!! <img src="i/expressions/rose.gif" border="0"> <img src="i/expressions/rose.gif" border="0"><br>
<br>

 

[EnergyGal]

If your son to be is stable health wise just think how great he will do once you get him properly fed. I am Very optimistic and interested in hearing all the good news.

 

[anonymous]

I'm not saying nutrition isn't important -- just on a scale from 1 to 10 -- proper lung care is our top priority. We still push extra calories, wide variety of foods, vitamins, etc.

It's just that our local CF clinic doesn't stress lung care at all, which is why we go to an accreditted CF Clinic 250 miles away for our primary cf care. When we first started going to the local clinic they didn't think we should be doing cpt or using nebs yet. I recently read an article about a family who attends out local clinic, their 3 month old was just diagnosed and a quote was made "if (if? If?!!) the lungs are affected, they'll (the clinic) will know what to look for and will know how to treat it". Liza aka ratatosk

 

[julie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I'm not saying nutrition isn't important -- just on a scale from 1 to 10 -- proper lung care is our top priority. We still push extra calories, wide variety of foods, vitamins, etc. </end quote></div>


I would have to say that the CF priorities of care differs for every person. Mark doesn't have that many lung problems, but when he lets his weight slip below about 180-185lbs, then he starts having a lot of lung problems, infections and such.

I really think you are an amazing woman to be taking in these children and no doubt you will have your difficult times but it sounds like you are so encouraged to get all the information you can right now. I've read a number of the responses posted already and agree with all of them so there's no need for me to repeat what's already been mentioned.

I would just say, dtermine what his greatest problem with CF is, is it the lungs or digestive? Because sometimes getting the "worst" one under control can help control the other problem. And it's not always the lungs for every CF patient.

Good luck and keep us posted when he arrives!

 

[Momofsix]

From what I understand at this point Brandon is mostly digestion...
I spoke with the caseworker today she said he is doing wonderful
 and he is actually able to take physical education  at
school  now  so i am praying he continues doing well.
Please forgive me i am very new to CF and i am trying not to sound
stupid or ignorant<br>
<br>
Julie  if  I read your signature right  TRiplets on
board?  Congrats  and  I wish you the bast Twins
were a trip  I miss my little boys   18 on July 9th
 

 

[anonymous]

Again, my comment wasn't lungs vs. digestion. It has to do with cringing every time I hear that people stop doing CPT because they feel their lungs aren't affected.