Son just diagnosed

[Char]

Hi, my 11 year old has just been diagnosed with CF. It was a total shock to us all to say the least. He did two sweat tests (both around 100) and we just got the genetic confirmaion (delta F508). I was very confused about all this since he has never been hospitalized with lung problems although he does have allergies and at times gets lung infections in which his allergists has always immediately started him on medications. He doesn't gain weight like his younger sister and his height isn't compared to most boys his age. I always accounted the weight and height to be just genetics from both sides (tall and thin on one side and short on the other). What brought us to all this was a constant cough (he has always said in the back of his throat) and finally I convinced them to do a CAT Scan of his sinuses and it came back to total blockage (he has never had pain or fever). This all started in July and being military it is a hurry up and wait to be approved to see specialists type of thing. He is seeing a pediatric pulmonary/CF Certified Specialist and we have an appointment next month to see a Pediatric Gasto and Pediatric Ear, Nose and Throat specialist (all in the same children's clinic as his CF doc). He is scheduled for a lung probe, CAT Scan, full blood work up and pulmonary function tests next month as well and they have already ordered him a vest to wear twice a day for his lungs. He did do a breathing compacity test last week and it was perfect. He just came off of 7 weeks of antibiotics with no change to his sinuses. I am glad about that because they were tearing his stomache up.

I suppose my question would be, since he has been in good health (the only signs would be the weight gain and possibly the once or twice a year lung infections) is this a good sign for his future? I understand that progression varies from person to person, but I am scared for his future. Neither side of the family has ever had anyone diagnosed with CF and both sides of the family have long life spans with no pulmonary problems.

Now we have to go thru this whole process over again with my 8 year old. They are doing the genetic and bypassing the sweat test on her. My nerves are about shot, to say the least.

I have been reading but the only thing about that is it is always so gloomy and always come to death. I can't get past that part of it and it bothers me tremedously, I feel like my son was just given a death sentence and it breaks my heart. I know they are looking into cures and new drug treatments and tomorrow or next month could be the breakthru but how do I get past the heartache? The only thing I have told him was that this was the reason why he wasn't gaining weight, had probelems sometimes with his lungs and why his sinuses are so infected and that once the doctor is finished with all the tests, he would give him medications to help him with all those things and keep him healthy. I don't think he needs to know any more than that right now.

I am so sorry that this is so long, if anyone can give me inspiration for his future and words for me to hold on to other than what the text books are telling me, I would really appreciate it. I think another thing that breaks my heart is that he is the last male on each side of the family and he won't be able to carry that on.

 

[anonymous]

hey this is mike and i have poeple in my family who have cf and i am a carrier of it als. a little about how ifeel and what has worked for us is that its a kid. love him like he is normal like someone with out cf.i am not saying dont be worried or anthing but let him do things of his intrest as a kid like we did. sports are ok my brother does it just drink lots o water. things like that. love your child but dont baby him. dont be worried about his cf alot because it will take away some of the speacil times with your kid or the meaning. i am 17 and we do this for my 2 brothers who have it and a sister. i dont have it. this worked for us so give it a shot. mike from iowa

 

[Emily65Roses]

If he wasn't diagnosed until 11 because he's been generally healthy, then he's doing damn well. You never know how each CFer is going to live. We're all, each and every one of us, so different. Make sure he does his meds and he has a better chance at living longer. But even some of us who do our meds don't end up so well (referring to Coll's statements about this on a previous thread). Either way, he sounds like he must be doing pretty well. I don't know what to tell you except that you'll get used to all of it. I imagine it's scary for now, but he has not been handed a death sentence. When I was born in 1984, my parents were told I'd never live to see 18. Here I am 21. And now the average is 32. Your son is only 11 now as the average is 32. Maybe by the time he reaches 21 the average will be in the 40s or 50s. And at least for now, he seems to be on the better end of the CF gradient.

The only other thing I would say is... Tell your son what you deem is important to tell him, but don't lie about it either. The best way to go about it is answer his questions directly. If a short answer makes him feel like you've answered his question, then you needn't go into any deep explanation. Just make sure to tell him at somepoint, because otherwise, at the age of 11, you can assume he'll stumble upon the information somehow. And if he realizes it's CF and doesn't hear the information from you, he's liable to come across the same "heartbreaking" (your words) information that you have come across. Much CF info out there is outdated and we're often portrayed (The 6th Day, for example) like we're going to drop dead any minute. It's simply not true anymore. Anyway I guess my point is, I'm sure he'd rather hear accurate more optimistic information from his parents... than outdated gloomy worst case scenario information from a webpage or book.

I want want to reiterate, if he hasn't been diagnosed until now because he's never really had health problems, he's probably doing pretty damn well. You can never tell which way it'll go... but being almost totally healthy up through 11 is a damn good way to start. Keep coming back here for any further questions, comments, worries, or whatever. We're always around. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Your sons story is similar to mine, I was always a small kid could never put weight on and every I got brhonchitis. When I was in grade 8 I was told that I had allergie related asthma. I didn't getting the constant coughing until I was 19-20 and was diagnosed at 22.

Dave 30 w/cf

 

[anonymous]

To use a good Aussie term, on the day after Australia Day, She'll be right, mate.

I ws diagnosed at birth and always reasonable healthy. I am 15kg overweight and no cough, fit as a fiddle. Once every year or so I will have an exacerbation of a lung infection, and digestive enzymes daily. But so what? I can walk, talk, eat, laugh etc, and it seems your son does the same. treat him equally, don't call him 'special' and teach all of your children to eat and live healthily - To me, being a 'healthy' CFer, life is pretty much the same as everyone else, I just take more tablets and have to look after myself more than others. If he gets ill, worry then. Don't make his childhood one of worrying, just to be careful.
Sorry to preach to you, but my life is positive and fun. So will his - just differently to how you expected.

 

[anonymous]

Thank you all for answering back. My son hasn't asked any questions and I just told him that meds will keep him healthy although he hasn't been started on anything as of yet. He is going in for a lung probe in the morning and he sees Ear, Nose and Throat about the sinus infection this week as well and then he sees a Gastro specialist next week.

He does sports, baseball, basketball, soccer and Tae Kwon Do and is on a bowling league. I haven't treated him any different, he seems to be healthy and full of energy. I suppose the rush with tests and the vest for his lungs put me in a panic and those darn books they sent home with me didn't help at all.

We will take it one day at a time.

Thank you all again,

Char

 

[anonymous]

Keep him in those sports as long as he can tolerate them. It helps keep the lung function at a good level as it is a natural form of chest PT.

Julie (wife to Mark 24 w/cf)

 

[vickysmommy]

I can say from my expeience of having CF all my life that you learn to except it. He'll probably except it more then you do eventually because hes the one who has it. You both just need time to adjust. Just do what the doctors say, and dont treat him any more different then you have to. There were times that I was feeling so healthy I was beginning to think I wasnt sick at all, thats because I learned to be on a schedule with my meds and I took really good care of myself. As a kid I played softball, and loved to run. One big word of advise I can give you.

Dont tell him things like "your going to die", Or "your too sick to do that". Let him set his own limits. I tell you this cause Im 22 and just had a baby, my dad has been telling me for months now "well you only have about 2 years to live," and he used to tell me things like "you cant do that your too sick." It bothered me then and it still does.

 

[IrishEddie85]

Hi I was diagnosed at about 2 the best thing that happened was my mam was completly open about it with me try and do the same for your son.
Im 19 now and you cant tell the difference between me and most of my friends health wise. Let him do everything hes able to and youll probably be surprised. the most important thing I think is to keep up ther sports and in 30 years he'll be a normal lawyer doctor or who knows

 

[anonymous]

Char -

I'm 23 years old, diagnosed at 6 months old. MY CF doctor told my mom this right when I was diagnosed and it's still true 22 years later.....

The one thing you can do to impact your son's CF prognosis is COMPLIANCE - get him to do meds every day.


It sounds so silly, but as my fellow CFers will tell you - just cuz there are meds out there to treat CF, doesn't mean we do them. There are so many CF patients that end up sick and wonder why and it's because they're not doing their chest PT like they're supposed to, or they're not taking their enzymes when they're supposed to, or they're not taking their antibiotics (Cipro, TOBI or otherwise) like they're supposed to, etc.

I have FEV's of 90% (near normal lung function) and have only been hospitalized three times in my life because I do my meds twice a day, ever day, just like I'm supposed to. It's hard sometimes, and it's not fun, but the dividends pay off greatly.

My physician at USC Internal Med in Los Angeles agrees - there's really no predictor of prognosis like compliance with medications.

Sure, other things matter - go to your clinic, sleep enough, get allergies under control (something I've noticed a lot of CF docs neglect.... once I got my allergies under control with allergy shots and allergy avoidance in my house my sinus infections stopped and broncho-spasm was drastically reduce), etc. But the utmost importance is compliance with meds.

Getting in a routine when your son is young is key too. Some of the adults that are diagnosed with CF have a tougher time because they're not in a routine since childhood. Your son will have this advantage.

-Amy 23/cf

 

[Beowulf]

I am approaching my 33rd birthday and was diagnosed at birth. I have a double-deltaF508, which, as I am told, is a very bad mutation. However, the fact that I am still around tells me a couple of things... They don't know everything. They can be wrong. Despite that I have CF genes, I apparently have some other genes that are working pretty well to counter my CF mutations. And lastly, it also tells me that my environment is dictating half my story.

The only manifestation of CF I had growing up was a distended stomach and slow growth up until the age of 8 or 9. At that age, my mother passed away, and 16 months later my father passed away. As soon as this level of stress hit me I had pneumonia all the time. My health didn't stabilize until I was 15-16, when I found myself in a stable and nurturing environment.

I have always known I've had CF and that I would die prematurely from this condition. It wasn't until my mother became ill and died that I understood fully what that meant for my future. I have fought tooth and nail to define my life according to my will and not some genetic text book or aloof physicians. This battle has given me demons but has ultimately made me stronger. I suggest you tell you son what he has as soon as you think he is mature enough to understand, but that might come earlier than you expect or realize. I guarantee you though, as soon as he gets a chance he will pick up a dictionary or encyclopedia, or perform an internet search and look up the meaning of CF himself, I did. Whether or not he learns it from you, I don't think matters. I do think it is important that you help guide his comprehension of CF as he learns more about it.

As for his care, everyone is different, though I strongly believe if he doesn’t need medication (antibiotics, pulmozyme, albuterol, etc.) don’t give it to him (when he is sick he needs it, if he is not sick he doesn’t -children don’t need prophylactic antibiotics like CF adults tend to. You don’t want him/his bugs to develop immunity to what antibiotics currently exist, so don’t abuse their use). Too many doctors use these meds to cover up their inadequacies and their lack of understanding of what your son may be going through. He most definitely needs his digestive enzymes. The digestive enzymes are the most important med to a CF child. As he ages the pulmonary meds will become more significant. Get him to develop healthy eating habits. Watch the garbage food. Garbage in, garbage out. Drink tons of water. I drink between 4 and 8 liters of quality water a day. And vitamins and nutritional supplements can be useful, particularly during maladies. Good luck and if you have any questions you are welcome to ask me anything, though this forum seems to be a good source for advise as well. Good luck. -LBS

 

[Beowulf]

Also, your son isn't necessarily infertile. He just is likely to not have a vas deferens. When he is older and wants to have kids, he might be able to consider a MESA or a PESA, two slightly different fertility procedures. It is where they aspirate the testicle and retrieve what they need for him to father a child. So stay hopeful.

 

[erindanakmp]

I just wanted to say, hang in there. I know it is all very scarey right now, but you will do just fine.
Erin
Mom to Paige 5 wcf, and KM 10 wocf, and owner of The Little Acorn Health Journals for CF and others
www.thelittleacorn.net