Is 1 1/2 to young to use Pulmozyne?

[anonymous]

Hello,

I am 38 year old female with CF. I have a nephew who is 1 1/2 who mustly suffers with the digestive problems and is taking enzymes. At first diagnosis, my brother and his wife took the baby to my cf doctor at 3 months. He felt that the baby shouldn't have pt til he was about 2 years old. My brother and his wife didn't care much for my doctor and took him to another CF clinic. That doctor has the baby taking albuterol with a mask twice a day, getting pounded, and now they have started taking pulmozyne. Though I get the impression that the baby doesn't really have any breathing problems. In my mind, it it aint broke don't fix it. I think the breathing therapies should be started when the baby is having problems breathing. I was late diagnosed at 18 so I have a different perspective on CF treatments than most. I am interested in knowing from parents of other CFers what they do, if they do treatments, what they do, etc....

Thank you,
Michelle

 

[DEES4]

I think most on here are going to tell you that it is important to start albuterol and chest pt BEFORE lung issues are a problem. My son was started on the treatments (albuterol and chest pt) as a newborn and just recently (at 2 1/2) started pulmozyme. I think your nephews current doctors are on the right track.
Carrie

 

[Ratatosk]

Ditto -- ds was diagnosed when he was less than a week old. We've been beating him, using albuterol & atrovent 3-4 times a day since he was a newborn. Important to practice good lung care -- keep the lungs healthy, get stuff moving up and out.

For ds CPT is soothing, he'd fall asleep during it. Friend of mine's granddaughter was diagnosed at 18 months and when the first started CPT, she'd scream, struggle and fight -- would talke well over an hour+ do do a treatment. She didn't understand why her parents were suddenly hitting her.

DS started pulmozyme last Fall, when he was almost 2 1/2 years old.

 

[anonymous]

Hi! My son who just turned 1 yr on 8/2 has been on Pulmozyme and albuterol off and on since he was 7 weeks old. He was diagnosed at 3 weeks with newborn screening. He has had CPT at least 2x per day since he was dx. Hope that helps.

Melissa
Caleb, CF, 13 months old

 

[Nicole]

Danny was diagnosed at 2 days old and has been doing CPT, Albuterol, and Pulmozyme ever since. He has been to 3 different clinics and none of them have ever said not to do CPT or meds. (not that we would stop anyway) He has not had any respiratory issues so far.

 

[anonymous]

My daughter started Pulmozyme when she was 12 months. My son started it at one month old. Both were for preventative measures.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[Augustmom0003]

My son started Xopenex at 3 1/2 months (at diagnosis), Pulmozyme around 7 or 8 months and Pulmicort around 9 months. CPT started right at diagnosis. I think most doctors now are doing preventitve treatments/cpt. HTH?

 

[anonymous]

Thank you to all of you were replying to my post and letting me know what the usual treatments are. I will pass this on to my brother.

Thanks again,
Michelle

 

[debs2girls]

I am glad to hear your nephew is on Pulmozyme. My daughter has major lung problems and I have been driving her doctor up the wall about Pulmozyme, still he will not put her on it.
Tell your brother to stick with this doc....lol...jmo

 

[JRPandTJP]

I feel it is important to take each case individually.

Our son didn't hasn't had any lung involvement (in terms of cough/mucus) and suffered with reflux early on (dx at 3 1/2 months) so CPT was not recommended until age 2 (this is when his acidity changed; he now does the vest daily). It is not considered safe to do CPT on small infants that have reflux due to lung damage concerns. He only recently started showing signs of excess mucus and we currently do inhaled GSH and oral GSH for this...makes a huge difference. We do however treat aggressively for PA if/when cultured.

I have questions about this approach:

How do you know your little one needs it in the first place if they have always been on it?

Isn't albuterol used to open airways that are constricted? If they aren't constricted why use it?

I get why Pulmozyme is used under the assumption "all" CFers have thick mucus...but it is a drug and it actually causes broncial irritation...maybe why the albuterol is needed?

I am just not sure blanket treatment is the way to longevity since all people are biochemically different and will go through CF differently. I feel careful watch, changes in treatment if/when the unique induvidual changes, and learning about the unique biochemistry of the child before treatments are recommended is something I would like to see (along with natural therapies as first line of defense). Currently the only way to do this is to go to both a naturopathic care physician and a CF clinic and make choices based on a fuller picture. I would really love to see more individualized care...one can dream.

Jody

 

[anonymous]

I just wanted to let you know that my son is 1 1/2 also and does pulmozyme every day once a day. He started it a couple months ago when he got sick. He has since been on IVs and is better, but the dr. has kept him on it. He said especially with the respiratory cold season coming up.