When/What treatments?

[meteoras69]

Hello,
Our 3-year-old son was diagnosed with CF through newborn screening. He has DF508/DF508 mutations. He has been doing chest CPT since diagnosis (recently switched to the vest, twice a day for 30 minutes each day) and pulmozyme since 1 year of age. At our clinic they mentioned beginning hypertonic saline, but said it would be up to us if we did it or how often we did it. I guess I am confused.......I don't feel like I know when/if he should start it. Is there somewhere I can go to get more information? We want to be proactive. Our clinic seems to just say it's up to us, but I'm not a medical professional and don't really know what we need to do to be preventive. I'm curious what types of treamtents your kids do and when they began the treatments, and if there are places I can go to get more information. Thanks!

 

[patpatstoo]

Did you ask why the clinic is leaving it up to YOU to make a medical decision? We have always been proactive with our daughters treatments. She is 17y/o and doing great. She goes in the hospital every summer for a 10 IV day treatment even if she was doing ok. She never missed a day of school. She uses Albuteral, Pulmozyme, and Saline for her breathing treatments. She was older, maybe 7,than your son when she started saline and at first we had to insist she do the treatments with breaks because she said it burned her nose and throat. I guess that may be a problem for a 3y/o. She said that it doesn't bother her at all now. She is very compliant but like all teenagers she sometimes gets busy and "FORGETS" to do her treatments. UGH!We are trying to let her be responsible for her equipment(nebbies) etc. It is hard letting it all go but she wants to gp away to college and will have to be responsible for them there.

 

[Aboveallislove]

Dear Ginger,

Our son was diagnosed as a new born a week after yours (also ddf508) and I had all the same questions. Our first CF doctor recommended against hyper-tonic saline b/c our son was very sensitive to things and she thought he'd have a hard time. She moved to another city/hospital and we asked the new CF doctor about starting him, with various questions. That new doctor was also running the study on hyper-sal on young ones. That was before results--she said every parent who thought their child was getting hyper-sal WANTED to keep using it and that there were no real adverse events. She confirmed we could do hyper-sal in same nebulizer cup as Xopenex (so that didn't add to daily up keep) and explain process to "test" was to start him up slow. We decided about age 2 to start him--doing 10 seconds at a time, building up. (Some clinics do in house first time; I prefer our clinics approach which is to do a very little at a time, building up to full treatment about a month later.) We love it. His coughes went from random throughout the day to mostly during treatment. The test study results now show no benefit for younger kids BUT it is only one study; I don't know how it can't help since it does with 6 and old; who would know at what age it would help; its mechanism is hydration, so that has to help; and finally dear son is use to it now and doesn't fight it. From our perspective it is one more arrow in the quiver to keep his lungs in the best shape possible until the correctors are out there. The biggest negative--it takes at least 20 minutes to do, so a total of 40 minutes per day. Please let me know if there is anything else I can tell you to help with your decision. Obviously, this is just my take and others might have different views.

 

[HD]

Our son was diagnosed at 6 mo of age with double D508. He just turned 12 a few days ago. We do both pulmozyme and hypertonic saline. His morning schedule is Vest-30 minutes along with Xopenex inhaler, pulmozyme, Cayston, Advair Inhaler. His pm is the same except hypertonic saline instead of pumozyme. Then he does a solo cayston before bed. We are hoping to be off the cayston after this round.

 

[MargaritaChic]

I think your doctor is leaving the decision up to you because you need to weigh the cost/benefit for your child since the current data did not support putting a child under 6 on the drug.
My daughter started CPT at 8 days old and nebs at 1 month old. She nebs Mucomyst and Albuterol. She now has a Vest and does the neb/vest 2X a day for 30 minutes each time.
My daughter was in the ISIS study (Study of HTS in children under 6) and she was one of the participants that recieved HTS. The results of the study showed no benefit to the children that took HTS. My personal thought on that is because the majority of CF children in that age group do not have significant lung damage yet.
My daughter is no longer taking HTS at this point. She was on it last month when she had pnemonia/influenza.Does your child have significan lung issues at this point?
I am torn. My daughter's baseline is no cough and no significant lung issues. I think HTS is beneficial and my daughter will be on it again. We take a very proactive approach to her CF care. At this point, we are have decided not to have her on HTS. For us we are weighing the cost/benefit for her. An additional 40 minutes of treaments a day for a 4 year old is difficult. If we saw substantial benefits from doing it, we would. During the study theonly benefits we noticed was a less stuffed up nose. So at this time we are not taking it, but that could change in the future.

 

[Tisha]

Excuse me, do you spend 40 minutes a day on the saline??? Why don't you use the Pari eFlow?? It takes just five minutes for 5 ml of solution! (and using the easyCare device to deep-clean it weekly, it stays nebulizing at 5 minutes - otherwise its pores get clogged with the salt). Really, using the eFlow has implied a major benefit in life quality for me (by reducing the time spent nebulizing).
For me, the saline solution is harmless and powerful, so I don't see any issue of "cost/benefit" because it's also cheap! What I personally have my doubts with is the Pulmozyme (we don't pay for it in Spain, but I still feel it's an expensive product that I personally don't see results with).

 

[Aboveallislove]

We do--it takes 20 minutes in the am and 20 in the pm. Our CF nurse had said 'around 10" when we started it but it takes that long. We use Pari LC Plus for all the nebs. I'll ask at next appointment re eFlow. What compressor do you use for that? Do you think it makes the salt particles "harsher"? Our son is 3 and has no problem with it but I thought I had read that the ones that are faster also affect the particle size and make it harsher. Thanks!

 

[JennyCoulon]

I am the mother of two CFer's. Our oldest is 12 and he was born with MI, 6 weeks early and after surgery 4 hours after birth to leave the ruptured bowel, a reconnection surgery for a total of 2 1/2 months in the hospital including his first Christmas we have come a long ways. Mason is a healthy CFer. He does albuterol in nebulizer in the am and 30 mins of vest. After vest he does Advair puffer and he is currently doing Tobi to shake the cough he has when he is active (which is new and we believe to be asthma related but trying all options) He does the same thing at night but he does Pulmozyme also and he actually does a sinus rinse to help with drainage. My youngest does all of the same except he doesn't do Advair. They both are pretty much zero cough kids and have been. I am not sure if and when they decide on the hypo-saline and the extra things that some CFer's are on. He has a G-button so he also does night feeds 6-7 nights a week but he is still a very active child. I think I would maybe ask them what are some of the reasons other CFer's are prescribed hypo, etc? This might help you in making the decision but I find it odd that they are leaving it up to you and not really giving an opinion. Good luck

 

[Havoc]

Marla is correct, they are leaving the decision to you because HTS is not clinically indicated for young children.

 

[mikos25]

i have a 3 year old on HTS and are cf DR told us that he will put hem on it and he is doing great he just hates doing his treamint one right after the other as it sits he is on for neb treamint but only 2 at night plus the vest twice a day so much stuff to do for my little man but nothing will hold hem back

 

[CJPsMom]

Our little one has been on HTS since he was about 10 weeks old. He does it once a day, the 7% solution at (I think) 4 mL. It should take no more than 15 minutes with Pari machine - if it takes longer, get your machine checked. We had this problem and our compressor was bad. I was amazed at what a difference the new machine made.

On the benefits, I can't say definitively, but our son is now 19 months old and has not had any lung issues. He didn't even get a cold this past winter, so we'll continue to do the HTS until or unless he stops.

 

[Printer]

Ginger:

The real issue here is a lack of communication between you and the CF Doctor. It is not your place to make such a medical determination without being completly informed. As in informed consent. It is your responsibility to communicate to the CF Team any questions that you may have. As in, what is the up side of HTS as well as the down side? What is any are the side effects?

Doctors are quick to assume that you/we know more than we do and it is our job to slow them down and get the right info.

I have my Doctors email and I'm very quick to email questions. Don't let them intimidate you.

Bill