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Thread: 12 year old just diagnosed

  1. #11
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    Your son's story is identical to my son's story, so I'll give you run down of how things will go for you both (I say with tongue in cheek, because as parents, we want to KNOW what will happen, but every child is different and encounters different things). Logan was diagnosed at 12 also. Always had a cough, doctors said asthma, asthma, asthma...bowel movements were always huge. Large at birth (almost 10 pounds), high percentile in height and weight which declined steadily over time. For the most part, he was really healthy. In elementary school one year, he even got a perfect attendance award. When updating his "asthma" medication, we were walking out the door when the doctor noticed his large fingers- the clubbing, and sent us for a test. Eureka! An answer (with 10,000 additional questions)! He was never hospitalized until he was 16, but had a few rounds of heavy antibiotics each year. Fast forward....he is 20 now, in college making great grades, having a blast in a fraternity, just got back from Spring Break where he was buff and tan and taking care of himself like he should. The trick? He learned he could control his health to a certain extent: he FEELS it when he doesn't do his treatments, so he DOES THEM (yeah, all teenagers skip because there are things they'd rather be doing. But eventually they realize that feeling good allows them to do more). Second tip- he exercises ALOT. Like, he's almost a gym rat. If it's basketball, track, soccer, Ultimate Frisbee, whatever- cardio is king, and keeps them healthy. So if your story falls in line with ours, then yes, I would take it as a good sign that he hasn't been SO sick that he needed more intense treatment until now. I think you're probably safe believing his condition isn't as bad as some others. I know- things can always change for anyone at any time, including my own son, but I just want to give you another mother's stamp of approval that it's okay not to assume the worst. Treatments have improved so much just since Logan was diagnosed (8 years). They are continuing to improve. My problem now is convincing Logan that he's going to live long enough that it wouldn't be a waste to start a retirement fund. Best wishes to you- let him know he has a LOT of control over this, but he has to choose it.

  2. #12
    First thing I suggest is lose the pill paranoia. CF is ALL pills and treatments. I was of the same thinking as you, as soon as I accepted that my grandson NEEDED all the pills and treatments to stay healthy I was able to be more supportive. You sound panicked and that only leads to us not taking everything in. It's a one step at a time thing, you'll find shortcuts (for lack of a better word) to suit your lifestyle as you go. Right now you need to breathe, start writing it all down and get a routine in order that suits you both. It's going to be ok I promise. You just do it, every day, so it's a new lifestyle. My grandson was diagnosed at birth but I remember how I felt when everything became real ... we do our best to keep the kids healthy. You are going to be very proud of your son when he starts owning his care routine, but he needs your help now. My grandson is 7, he knows more about CF than most of the nurses we meet and that's not that they are bad nurses, many just don't come across CF often, if ever. It's going to be ok, don't panic, don't let it all overwhelm you. It's not a pill a day or antibiotic dose passing bug, it's a constantly changing, no two alike, day to day routine. You've got this!

  3. #13
    Quote Originally Posted by Sunny9432 View Post
    My son started coughing up blood today. He's done a good bit of coughing in his life, and he's never coughed up blood before today. It about gave me a heart attack. It wasn't just pink mucus either. It was almost completely bright red blood. I took him to the ER and they all seemed surprised that he had just been diagnosed. The nurse even asked if he had a sweat test like she didn't believe it. None of them seemed all that concerned about the coughing up blood either. The doctor said his lungs sounded clear, but ordered a chest X-ray and came back saying he had early pneumonia. He started him on two antibiotics. He hasn't had pneumonia since he was two, so this has me really worried that he's getting worse all of the sudden or that the disease is progressing. The doctor said his lungs looks grainy on the X-ray and that that is typical for cf, but I'm not sure what that means. He started taking his enzymes and it's a little confusing how often he should take them. He takes 3 with meals and 1 with snacks. I think if he's eating more than an hour apart he's supposed to take them again. I just don't want him to take more than he needs. I really wish there was a cure for this or at least something to make him healthy and not need all these treatments and pills. He's suddenly going from no pills a day to like 16 with the antibiotics.
    The amount of enzyme is based on each patient. My daughter takes 36,000 creon. She takes 3 with meals depending on the amount of fat and 2 with snack. IF very fatty the meal she takes 4. My daughter has Severe Pancreatic insufficiency.

    My daughter was diagnosed at 18. Due to nonclassical presentation. The doctors would dismiss symptoms instead of accept it. They spent more time disproving it. She has to take pills for deficiency in fat soluble vitamins. She also takes stool softener. I know there are many questions. It just takes time to learn. There are many that can help.

  4. #14
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    I'm sorry for what you're going through. You must have many emotions.....and to have him coughing blood for the 1st time shortly after his diagnosis. Not easing you in at all. Thinking of you.

  5. #15
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    The large amount of blood he's been coughing up are very likely hemoptysis. My first incident of hemoptysis was a surprise. I can't remember if I caught the first one or maybe the next couple of blood clots, but I was in my fifties and not easily terrified. They are huge in terms of blood clots, enormous for coughing it up. Mine were 4cc and 11cc respectively the first time. If it's not your blood, especially when it is your son's blood, that's a lot!

    Your son may have bronchiectasis, common in CF and often the source of big bright red blood clots. Another source is pleural effusion. It seems similar to pleurisy, it's an infection between the pleural membranes, but they are often painless themselves. There's a correlation between bronchiectasis and pleural effusion when it comes to hemoptysis. The fact that the ED doctor didn't get excited about the huge blood clot, possibly with fresh arterial blood spraying for a while afterwards, almost guarantees​ it was a hemoptysis. I'm not saying that they can't be serious, but serious would be a bleed that isn't stopping. Excepting CF athletes who are accustomed to a blood mist during exercise, a bleed that doesn't stop soon is reason to call your CF specialist NOW, or get to the ER/ED.

    His grainy Xray was likely reference to "ground glass" scarring. The term has nothing to do with ground glass, it's a description of how the lungs look on Xray. Because of the many lung infections​ at a young age, we often develop a grainy or sort of a grey patina image of the lungs.

    You know that your son didn't just suddenly show symptoms of CF. The disbelieving nurse is one you should be able to relate to. Many years ago I was at the Milwaukee Circus Parade. It was a bright sunny July day, I was wearing my SPF 90 sunscreen and sunglasses with red tinted Polaroid lenses. I prefer the color and it gives me the super power of seeing skin capillaries and the early onset of sunburn. A lady next to me had a newborn baby without any sun protection. I was alarmed by the extent of the infant's sunburn, lowered my glasses so I could have an unbiased look at the baby and her sunburn, she was obviously sunburned, I could see the difference between her skin directly in the sun and the areas​ protected​ by some shade. I told her that she needed to apply some sunscreen, cover the baby or something like that. She retorted "oh, she doesn't burn, she tans!"

    My expression must have spoken volumes because she moved back from the curb, prime viewing real estate and a few minutes later the newborn, who's tan must have washed away at birth, was slathered in sunscreen. I unwittingly embarrassed her. "Bad mom" fear is invisible to all except other moms. I'm not a neonatal expert, by a long shot but I knew her baby's first sun tan/burn was probably just happening. The nurse may have not believed you and was offering you another run at it. I wouldn't take offense, people who have been dealing with CF for a long time know that most medical professionals have very little knowledge of CF, the general public knows even less. The fact you knew what a sweat chloride test was, and he had already tested positive is frankly very impressive.

    Please, do whatever you need to balance the guilt associated with the hereditary nature of your son's CF. He has no clue what life would be like without CF and you can only imagine what he's going through. A good balance of guilt would be zero or no guilt, IMHO. At the same time, my best friend is the mother of four children and the two boys have autism, one with an added dose of Asperger's. Chris is still suffering personal​ recriminations over 'something she didn't do, did do or should have done'. Her grief is hard to reconcile and occasionally it breaks through her shell. It angers me. Not because she is being overly dramatic or irrational but because my knowledge of genetics eliminates any chance that something you or even Chris did, didn't, or should have done would make an iota of difference. See a counselor, someone who should be part of your CF team for you and when it's appropriate, for him. Your seeing a counselor will help you help him and he will accept counseling easier if he sees that you are benefiting from it.

    I mentioned a post I made under the title DIOS. I explained enzyme titration. If the doctor has him on say Creon 12's. The number of capsules taken with a meal is already approximated​ in the directions​, hopefully. Actually, if you don't mind, post the prescription directions​, enzyme supplement name and strength. Typically doctors try to make it such that 3-5 capsules are taken with a meal and 1-2 with a snack. I try to take mine right before I begin eating, so I don't forget and Creon takes 2 hours to become effective. They're enteric coated. From the initial dose, follow his poop. It's​ probably hard for lack of enzymes prior to diagnosis. From here, refer to my write up on DIOS to adjust his enzymes. Generally more fat, nut, milk, or meat fat, you might want to do 5 capsules assuming you are suggested to give him 3-5 with a meal.

    I hope this helps answer your questions, soon enough you'll be an accidental authority on CF.

    LL

    P.S. Like KatherineH's daughter, I am on Creon 36, and it is the highest single dosage made by Creon. I am on the same dose regiment.
    Last edited by LittleLab4CF; 03-21-2017 at 04:57 PM.
    66 yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism appears to be virulent.

  6. #16
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    I know he needs the treatments and the pills. I'm not being pill paranoid. I'm a nurse though, and I know that it's better to take the lowest dose of a medication that is effective. All medications come with some cost. It's all about weighing benefit vs risk. Even the pamphlets for the enzymes say to take the lowest effective dose, because higher doses can cause some serious issues. It is a big adjustment though for a 12 year old to go their whole life taking no medications except for the occasional allergy pill, Tylenol, or an antibiotic every few years to taking 16 or more pills in a day. Most of the elderly people I see don't even take that many medications. Thanks for the encouragement. It's been an overwhelming couple of weeks. I wish none of these kids or adults had to do all of this, but luckily he is being very compliant and knows that he has to do it to be healthy.

  7. #17
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    I looked it up as soon as he started coughing blood and saw that it usually means a person with cf is getting an infection. There wasn't any clots just bright red blood with a little mucus. My Mom said that's it's crazy for this to happen for the first time right after he is diagnosed, but I guess really his symptoms getting worse are why he got the diagnosis in the first place. I'm a hospice nurse, and even most of the eng stage COPD and Lung cancer patients I see don't cough up blood like that, so it was definitely concerning for me. I don't feel guilty about passing on my genes to him. I didn't even know that I was a carrier at that time or anything about CF. I've felt guilty about not putting it all together sooner so he could be diagnosed, especially after finding out that I am a carrier years ago. I don't know why I didn't, but I also don't remember the doctors office saying too much about it other than telling me that I am. Which seems strange to me. I guess at least I finally did figure it out, or he would be here just taking Miralax and probably losing more weight. Both of my younger sons should have been screened with newborn screen at birth, so I think they aren't even carriers. Although they have a different Dad than my oldest son with CF. They started him on Zenpep with 15000 Lipase. They said to take 3 with meals and 1 with snacks. It can be confusing because the last few years the kid has ate nonstop, so it's hard to know when to take the capsule again. None of us could figure out how he could possibly still be hungry or where all this food was even going. Now I know that his body was hungry, because he wasn't getting what he needed out of his food. We weighed him Saturday morning and he weighed 89 lbs. We weighed him again last night and he already weighed 92 lbs. That's just amazing 3 lbs in 3 days. He had set a goal for himself to gain 2 lbs by the end of the month, so he was happy that he already achieved that. I'm trying to learn all I can about CF. Ive always been interested and wanted to learn about anything to do with how the body works, but I want to know everything I can to help him. I think the nurse was surprised, because he doesn't look unhealthy and most people these days are diagnosed at birth. She made a comment about how he must have been doing well. Well yes and no. Probably better than some people with CF in childhood, but from what I've read its not that unusual for their symptoms to get worse as they become teenagers.

  8. #18
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    It is overwhelming and just take it one step at a time, one day at a time. Get into a routine and eventually enzymes, treatments will become second nature. I have a friend who just had a baby w/out CF and she and her husband panicked the first few weeks because they kept thinking they forgot to give the baby enzymes. That whole mindset of being so used to giving the other child wcf enzymes.

    When DS was diagnosed, he was a baby, still in the NICU and the RT's taught us CPT (Chest physiotherapy) and how to use a nebulizer, dispense albuterol. We were taught how to give a newborn enzymes. Then we learned how to give him liquid vitamins twice a day. And the day we were released we got --- BTW, here's medication to help his liver to be given three times a day, here's a prophylactic antibiotic to be given 4 times a day, he'll need extra vitamin A & E.... And once again I was soooo overwhelmed. Any time a new medication is added, it throws me for a loop because I feel like I just got everything down, just got organized. It's not that he's necessarily progressing, but at age 2 1/2 he was put on azithromycin -- not as an abx, but it helps with lung function. Cultured a new bug --- prescribed another abx.... I wrote a lot of things down at first, have a table of medications on my computer. To figure out treatments, I calculated what time we needed to leave for school/work and how long it'll take to get ready, eat, etc. and work backwards. It's second nature, can do it in my sleep and probably have. My MIL is a retired nursing instructor and she takes copious notes, double/triple checks what she's given DS -- but she still has issues with the amount of pills. Enzymes in particular --- the bottle says 8-10 creon with meals; however, she doesn't want to give him too many although he can easily eat a TON of calories and fat with a snack and go on to eat steak and a double order of fries for supper and hour or so later, topped off with a bucket of popcorn before bed. It's mind boggling. Her mindset is not to give him too many pills, but he's so pancreatic insufficient that he needs more enzymes depending upon what he eats.

    The enzyme issue drove me nuts. Early on it was based on output and as a new parent, I didn't have a clue as to what normal poop looked like. I was told with a mysterious smile "you'll know". No, I don't know, that's why I'm asking. Throw in a predigested formula --- apparently grass green well formed poop is normal.
    Parent to a child wcf double delta f508

  9. #19
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    I so wish my son had been diagnosed at birth. Mostly because he would have been getting the proper care all this time, and because all of this would have been normal for him if he had done it all his life. That's crazy that they didn't tell you what normal poop would look like. I breast fed all three of my kids when they were newborns and normal is yellow and runny for breast fed babies, and they told me that even though none of them were sick. I know that at least through baby and toddler years, until he started going to the bathroom without any help, his poop was normal. We just got the fecal elastase results back and it was 23. So he is extremely severe pancreatic insufficient. I'm not sure how he didn't starve to death already. The np said they got his sputum culture back today, and we would talk about it on Thursday at his first appt with the doctor. She said they would be starting him on inhaled abt on top of the two oral abts he's already on for pneumonia. She had already said last week they were going to start him on azithromycin probably three times a week routine. I'm really scared about how sick he is or damage to his lungs from not getting treated properly from being diagnosed so late. It seems like everything is going wrong with him all at once. He's going to run out of his enzyme samples tomorrow. They were waiting for his test result to come back, but I got it online this evening. It hadn't come back today so they sent a rx to the pharmacy. The Zenpep copay with our insurance is almost 400 dollars. I signed up for a program they told me about live2thrive that does copay assistance. The pharmacist said the copay would be 40 dollars, but they will only cover if for 330 pills or less and his rx was for 400. I'm not sure what to do, because that's how many he is supposed to take. Has anyone else had this problem? I'm thinking maybe if the np sends in a new rx and ups the dosage from 15000 capsules to 25000, and he takes 2 with meals instead of 3 then they would cover it, because it would be less than 330 capsules, but I'm not sure. I have to try to get that fixed in the morning, because he only has enough left for breakfast.

  10. #20
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    Does your insurance cover any of the other enzymes? Our BCBS will only cover creon or Zenpep. Ds was on a different enzyme and we had to switch to creon or pay 50%. We also got a copay card and only had to pay a small amount until we reached our out of pocket maximum.
    Parent to a child wcf double delta f508

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