Orkambi Journey with 19 y/o Allan Diagnosed at 4 months

[Allansarmy]

I might start to add the days in the thread, or perhaps copy and paste them at the very top to make it easily readable, but some may have missed some good news with Allan just reading throughout the thread. Allan's appetite has indeed comeback a bit. He is more hungry and has gained 4 pound in just a few short days. I literally can't wait for his next CF appointment in October. I am willing to bet that he will have gained up to 10 pounds by then, seriously something is working for him here. He is more motivated as well. His appetite in the morning is not 100% yet, but in the afternoon he is getting hungry and definitely in the evening. I told him if he keeps this up and gains more and more weight and can prove to the doctor that he can do this on his own, the doctor may very well consider pulling his feeding tube. This will be the first time in almost a decade that I have seen my son get excited about the prospect of being free from this device that is poking out of his body. Its a nice feeling to see that. I know it weighs on him (no pun intended). It keeps him from wanting to on dates with girls, he feels that no girl would ever want a young man that coughs all the time and has to do a feeding tube in his stomach. I know their are young women out there that will look past this, but with my son no wanting to go outside the house to meet new people because he is very self conscious about this tube and the possibility of going into a coughing fit, it makes me sad for him, so I say nothing.

Question to anyone of you whether you have CF or a parent of a CF that is over the age of 15. How did you handle the delicate nature of either dating the opposite sex, or showing support while they are transitioning into a young man/lady into adulthood of wanting to go on dates. I am in a quandary. I can either take the path of do nothing and let nature take its course, give advise to my son or just show support. Any ideas?

 

[imported_Momto2]

Allansarmy, my parents mostly just supported me, which at the time, was more than sufficient. Of course I got the whole birth control/safe sex talk when I was a young teen. I didnt start dating until I was 17 (I was very shy), but then asked a young man out, a guy I really admired for sticking up for some kids who were being bullied and his academic prowess. Didnt tell him I had CF then though. After we had dated for about 3 months (he was 15 at the time but very mature for his age), I chose a time when we were both in a good state and told him. He didnt make a big deal out of it (to me) but apparently went home and did as much research as he could. Came back and asked me questions and we had some more discussions. That was pretty much that. We dated for 3.5 years, then separated for 3 years during college/grad school to date other people. Although this guy at the time was very accepting and supporting of my CF (at age 15 he would help run my IV's and do PT on me), but he didnt quite understand what it was like to live with it. But during his senior year in college, he contracted Lymes disease and gulliam/barre, and was paralyzed from the diaphram down for a while. He finally understood what poor health was like. (he was also very sick and weak from the whole experience) Anyhow, he did a lot of thinking about the whole health thing, contacted me, and less than a year later we were married. We're coming up on our 20th wedding anneversary soon. Two daughters, 14 and 10. Life is good. There are plenty of good people out there who will see past your sons symptoms, to the person he is. However, he has to feel he is worth a good woman, and project that in his attitude and demeanor. Help him learn to use his CF to be a stronger, more upbeat person who loves life and cares about others. THats what draws the chicks.

 

[ethan508]

Question to anyone of you whether you have CF or a parent of a CF that is over the age of 15. How did you handle the delicate nature of either dating the opposite sex, or showing support while they are transitioning into a young man/lady into adulthood of wanting to go on dates. I am in a quandary. I can either take the path of do nothing and let nature take its course, give advise to my son or just show support. Any ideas?

How active is your son's general social life? What are his major roadblocks that keep him from going out? I think if he can find a good batch of peers to hang out with, the dating and paring off will come naturally eventually. Help sponsor and support him in doing hobbies and activities that are social in nature. Offer discouragement/disincentives from just hanging out with Mom/Dad or the computer on the weekends. Make your house boring (cancel the cable/netflix, sell the video games consoles, and restrict internet access) so that he'll be more motivate to get out. Model your own positive social behaviors by getting out and meeting new people.

Encourage him to go out to dances or clubs so he can meet people. Volunteering with Special Olympics or other charities is a great way to meet good hearted people. A church group might be beneficial. My church sponsors young single adult activities for 18-30 yr olds which provides a place to make friends that have similar moral values. Personally, I like outdoorsy social activities (golf, hiking, water sports, etc) so that when I have a coughing bout or am gassy it seems far less noticeable/disruptive. Just anything so will do as long as he is getting out and about and being social.

Again as long as he makes some effort at being social and meeting new people, the dating thing should figure itself out. If he can't manage to be social at all, he might need some social skill building via professional counseling. Also if he struggles with depression that will weaken his social courage and he'll need to work on managing his depression so that it isn't too disruptive in his social life.

 

[Allansarmy]

How active is your son's general social life? What are his major roadblocks that keep him from going out? I think if he can find a good batch of peers to hang out with, the dating and paring off will come naturally eventually. Help sponsor and support him in doing hobbies and activities that are social in nature. Offer discouragement/disincentives from just hanging out with Mom/Dad or the computer on the weekends. Make your house boring (cancel the cable/netflix, sell the video games consoles, and restrict internet access) so that he'll be more motivate to get out. Model your own positive social behaviors by getting out and meeting new people.

Encourage him to go out to dances or clubs so he can meet people. Volunteering with Special Olympics or other charities is a great way to meet good hearted people. A church group might be beneficial. My church sponsors young single adult activities for 18-30 yr olds which provides a place to make friends that have similar moral values. Personally, I like outdoorsy social activities (golf, hiking, water sports, etc) so that when I have a coughing bout or am gassy it seems far less noticeable/disruptive. Just anything so will do as long as he is getting out and about and being social.

Again as long as he makes some effort at being social and meeting new people, the dating thing should figure itself out. If he can't manage to be social at all, he might need some social skill building via professional counseling. Also if he struggles with depression that will weaken his social courage and he'll need to work on managing his depression so that it isn't too disruptive in his social life.

Thanks for the reply Ethan. Well the biggest problem is that he is very non social. We take him out with us every chance we get. Like out to events, sports, mall, grocery shopping, park etc. But he is very anti-social. I think some of this stemmed from us taking him out of High School in the 10th grade. He was never really social before that either, but this made his socializing even worse. We had to take him out for very obvious reasons and that was that for the first 3 periods, Allan would cough non stop. The teachers would put him in the hall, not let him use the rest room when needed. Believe me it got to a point where I almost sued the school, but at his request he really wanted away from everyone and the school. He hated school period. He hated the mocking, the laughing, the ridicule. I didn't let the school just 'get away' with anything either. I let em have it in more ways than one. Only thing I did not do, is actually go forward and sue the school district as he falls under the disability act, and once again at his request he did not want me to do it.

With this new drug helping him, I think he is wanting a job now, which is great. The only way for him to meet new people and to socialize and do things with friends is interaction. So a job will be good for him. He does not want to go to college, at least right now. I pick my battles and with him having this disease, I am not going to waste it, arguing about getting a degree that takes years to get. So he wants to get a job at least part time. So we will start from there. If he meets someone then great, but he will have to show some motivation here. I can give him support, but if he is unmotivated..... I really feel that friends are the answer. They tend to help in more ways than a parent cannot.

 

[nmw0615]

I just want to add a little note about your son's social life.

It sounds like he's an introvert to me. I notice this because I'm also an introvert, and leaving the house can be difficult for me. Being around people drains me of energy and it can take me days to recover. I got back on Saturday after flying to Missouri to watch my sister play volleyball. I was surrounded by people for almost 3 days. Since getting home, I haven't left the house because just the thought of seeing people makes me want to crawl in a hole. In a few days, I'll have recovered, but if I were to be forced to be around people right now, I wouldn't be doing well at the end of it.

I do agree friends are important, and having a job will certainly help. But keep in mind that forcing an introverted individual to be around people when they don't feel like they can cope isn't helpful to that person. It would be like trapping an extroverted person in solitary confinement.