Newly diagnosed 2 year old

[shannon28]

Our two year old son has received a diagnosis of CF based on his sweat test level being over 100. I'm trying to read and retain as much info as possible before we meet with his team next week. It feels strange to be happy to have a diagnosis and finally know what we're fighting. His former doctor was under the impression that CF was not a possibility since he passed the newborn screenings.
I'm hopeful the enzymes will make a big difference in his growth which has been abysmal. Everytime we get him to gain weight, he gets sick and we start all over. I'm worried about the damage we've caused by missing it for the last 2 years. His symptoms are almost entirely digestive. He was born with a blockage and has had a few since. He also suffered from chronic diarrhea which has greatly improved with removing gluten from his diet.
Has anyone else found a gluten free diet helps with GI symptoms? I will talk to his dietician about it also. I just like to hear real life stories too. Anyone else have a toddler that was diagnosed later?

 

[Rebjane]

I am sorry that your son does have CF. However, with the right enzymes and CF preventative care your child's health will likely improve. The enzymes do make a world of difference in getting the nutrition your child needs. Are you going to a CF clinic? The Cystic Fibrosis foundation at www.cff.org has a listing of care centers and up to date information on CF. It can be overwhelming. This message board is a good place to bounce ideas around and somewhere her has likely been there done that. Nutrition is very important. Most people with CF take pancreatic enzymes. My daughter has severe pancreatic insufficiency so she needs a high dose of enzymes for all meals and most snacks. Your CF doc or nutritionist will advice you on the right enzyme and dose according to your child's needs and weight. Also, people with CF need to take additional vitamins(the fat soluble ones) they just aren't well absorbed in CF. But that is usaully fairly easy as well. I know my daughter takes Source CF (it's a capsule) but they have chewables and liquids as well...You need a prescription for it. As far as the gluten free; I know some CF'ers do go gluten free for health reasons or for an intolerance. We try to eat as healthy as possible, with foods that are rich in the good fats and nutrient dense. For example salmon, almonds, you could do whole milk yogurt with a little flax oil mixed in. My daughter even takes fish oil every day. There are so many good food choices so we try to do that. Course last night my daughter was munching on Doritos and cake(son's graduation) so you know you have to have some fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Anyway, no question here is a stupid one..You will be your child's best advocate. Are you doing any preventative chest physical therapy? With little ones , the key is to keep those lungs as healthy as possible for as long as possible til we find a new treatment or cure for CF. My daughter is 9 with CF.

 

[shannon28]

We are going to an accredited CF center. I'm thankful we have one within driving distance. They have an active research center located there as well. Based on what the docs have to work with so far, they are planning on starting enzymes next week. They also mentioned a fecal elastase(sp) test to confirm. I haven't looked into that one yet. The diet you mentioned sounds a lot like what we eat now, his diagnosis gives us more reason to keep it up.
We haven't started any therapy yet, as he was just diagnosed. His nurse said we will cover all that at our first meeting. It seems everyone is super hopeful about finding cure, it certainly seems like they are making huge advances. Our pediatrician said every journal she reads has at least one article on advances in CF research.

 

[Printer]

With the proper amount of enzymes your son will be able to digest his food naturally and will take care of the diarrhea issue. I doubt that you will need to have him on a glten free diet.

Good luck,
Bill

 

[Mommafirst]

Welcome to the place you never imagined you would need. I'm so sorry that you were dealing with a less than knowledgeable doctor. . . to be born with an obstruction and just brush off CF because of the newborn testing being negative is really upsetting. Our CF team told me that the meconium illeus can totally throw off the IRT levels and give a false negative on the newborn screen, BUT the obstruction should cause further inquiry into CF since something like 90% of all meconium illeus are CF related. :/

Hopefully with proper care now, your kiddo will start to thrive and you will see and new and improved kiddo. CF is no fun, but knowing is better than not knowing.

 

[JENNYC]

Yes, welcome aboard! If there's one thing I've learned it is that this forum is so very full of knowledgable, caring people! So when you have questions just post and I'm sure you will get the support and help you need. Good luck with your sweet baby boy!!

 

[shannon28]

Thank you all for your responses. It's so much to take in, but the info I've found on this site has been a huge help. The dietician agreed that with enzymes we may be able to add more foods back in. We started enzymes this morning and his distention already looks a bit better.

 

[Ratatosk]

DS was diagnosed shortly after he was born due to a bowel obstruction caused by meconium illeus. He passed his sweat test with flying colors and two genetic blood tests were inconclusive. Fortunately, a test was ordered by the head of our local NICU, who suspected CF and we got those results a few days later. A friend of mine's daughter was diagnosed at 18 months -- constipation issues, as well as several bouts of bronciolitis. The doctor ordered a sweat test to "rule out CF" and it was off the charts. Currently she's a busy, active 9-year old. Mainly has issues with weight gain due to being such a picky eater. Pretty much lives off pediasure.

With the enzymes, your child should be able to eat more foods, gain some weight, have normal stools and probably not be dealing with obstructions as often, if at all.

 

[2cfkiddos]

My youngest son was diagnosed at 2.5 yrs old .... we had been thru many diet variations because his constant greasy stools were thought to be from allergies ~ and that would make sense seeing as he always had a cough. When his baby sister was born (my 4th child) we discovered she had CF via newborn screening ~ I hear what you are saying when it is a relief to just know what wrong.
Well that was about 4.5 yrs ago .... both kids are doing GREAT right now!!!! My boy has more scarring in his lungs and has been in for a 'tune up' twice ~ once just after being diagnosed and again about a year ago when we found out about his ABPA. My little girl .... is just that: LITTLE!!! We work at keeping her weight on .... She was in at about 3mths of age to getting some weight on her.
We all have had to learn how to live in the CF world ~ And it is very doable!!! (o:
God bless you and best of luck ...... This is a livable life style!

 

[shannon28]

Isn't it frustrating to think you've nailed what the allergy finally is, only to have the same symptoms reappear in a few weeks? I'm thankful we had the experiences prior to his diagnosis so we can find the good in it. We met with his team and they are fantastic. Everyone seems so helpful and hopeful. I love hearing about happy and healthy kids!

 

[LittleLab4CF]

To address your worry about potential damage two years w/o a CF dx. I was 52 when I was diagnosed. Although I have all the typical CF problems, malnutrition has taken its toll. Mostly I have arthritis and osteoporosis along with crappy teeth. Being born in 1950, medicine was worshipping the Pill god. Seemingly there was a pill for things a decade before, doctors gave you tea and sympathy. It is beyond my comprehension my doctor from birth to twenty never considered CF.

But those pills brought the supplimental vitamins into prominence and I was fed a liquid multivitamin. Not. I started taking a multvitamin and a couple suppliments. In short, I don't see anything, that now you know, can't be reversed. Maybe check the teeth?

 

[LittleLab4CF]

Sorry, I need to stop posting from my phone. I can't properly review my own posts. I was about two when my parents thought vitamins might help me. If there was any benefit, on average I got 4 times as much daily vitamin that was in my food. With about a month of mother's milk I went to formula. My guess is your baby has received much better.

 

[shannon28]

LittleLab4CF, I have an appt with the pediatric dentist in August. We brush and floss his teeth regularly, but it looks as though he may be starting to have demineralization already. We start fat soluble vitamins next week, plus some extra since he's low in basically everything. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Before finding this site I had never heard of anyone being diagnosed later in life. The more I learn about CF, the more I realize there are very few hard and fast rules to the disease. This may be a silly question: Do you happen to know off hand if there is an enzyme in breast milk that passes to your baby to help them digest? I'm curious as to why he had fairly normal growth patterns for a short time.

 

[Printer]

Shannon:

It sounds like you have found a good CF Center and a good team. Things will continue to improve with son.

Good luck,
Bill

 

[kitomd21]

Breast milk is extremely easy to digest...that may be why. In addition, he may have had greater pancreatic function when younger...