Pulmozyme in infant

[harrabell]

My daughter is 2 months old, and is not presenting with any symptoms as of yet. She has a little cold and a very infrequent tight cough. I took here to her CF Specialist, who had talked about putting her on pulmozyme and HTS (is that right?!) after discussing it for awhile, we decided not to do either yet. I am so new at this, but my general feeling is that I would like to keep medication to a minimum, but obviously the only thing I care about is keeping my baby healthy.
Are there other parents out there who's babies are on pulmozyme? What does your doc say about it? What do you think about it? I really don't want to make a mistake!!
Thanks.

 

[Aboveallislove]

Our son started Pulmozyme at around 2 - 3 months and knowing what I know now I would have insisted on that. We did not start hts (hyper-tonic saline) until he was nearly 2. I would wait until about 1.5 for that b/c it is a little harsh. Our philosophy is very pro-active with the hope to keep lungs damage-free until the combo meds are ready.

I'm sure there are other views on it as well, and look forward to hearing those.

 

[Havoc]

There was a recent study that suggests that HTS is not effective in young children. You can find it a few posts back.

 

[Linda2012]

Hi Jessica, my son is now 10 months old. He was diagnosed at 5 days and we started treatment immediately. Initially he was just put on enzymes, albuterol (sp?) (with chest pt 2 times per day), salt and reflux meds. We just started pulmozyme at 8 months. His doctor said that there are studies that suggest that lung disease can exist for quite some time before there are actually symptoms, so this is a preventative measure. In the beginning I was resistant...questioning doctors about each medication and wanting the dosages to be as low as possible. Overtime, I have learned that the medications really are necessary. I can now tell when something is up with Nicholas and a medication needs to be increased. They are helping him live comfortably, so even though I was resistant initially, now I am the first one to call our cf center and ask if his enzymes or reflux meds can be increased. As you continue on with your little one, I think that you'll see the same. As far as the pulmozyme...he may be just fine without it, but the way that I see it is that it doesn't hurt him and if something is going on that I don't know about at least we'll be treating it or giving him a better chance of beating it.

 

[Aboveallislove]

Thanks Havoc on the reminder re the study. I've meaning to ask folks what they were planning on doing re hts for their under 6 year olds. Love your take. I'll start a new string shortly.

 

[imagine04]

My son, Parker, has been on Pulmozyme since he was just 3wks old. The day he got his dx is the day he started all meds. I questioned everything, especially if the medications were safe for such a young child as studies are not geared towards children as young as he was but I left it in the hands of his medical team who deal daily with this disease and had far more knowledge about things then I did at the time. It was a preventative measure and my son is now 19 months old and has had a minor cold and a minor pneumonia (walking pneumonia) since February of this year -- so essentially we went 15 months with no illness what-so-ever and I contribute that to early preventative measures like pulmozyme.

We will however hold off as long as we can on HTS. We have heard that it can be harsh for even adult patients and until my son can voice clearly what he is feeling I am not comfortable enough giving him anything like that unless it's proven medically necessary. Some parents may have a different opinion on HTS and I do hope they'll weigh in for you!

 

[Mommafirst]

Pulmozyme is an amazingly good medicine. . . and CF symptoms are just too vague and invisible to know for sure that your baby doesn't have any. I highly recommend getting a nebulizer treatment schedule established now, when baby won't remember what life is like without it.

I know you are new to this and I know its overwhelming, but please keep in mind that the ONLY reason the mean age of survival keeps increasing is the availability to treat with these great new meds/treatments from a young age. Passing them up to wait for visible symptoms means potentially passing up the gains that have been found.


Its very hard in the early years as you are coming to terms with diagnosis to make these decisions. And NOT all babies are put on these meds from the beginning, so if your CF team feels that it is beneficial to be aggressive and start these meds, I would highly consider doing so....and be thankful you have an aggressive team.

Oh and FWIW, my daughter LOVE LOVE LOVES HTS -- licks the mask everytime (she's SIX) and it is not harsh for her nor does it make her cough.

 

[Linda2012]

Oh, I missed the question about HTS. Nicholas was put on HTS when he was in the hospital. He was in for bowel related issues, not lung, but the doctor on rounds thought it was good to start him. He started on 7% and I did not like it at all. It made him cough a lot and made his nose constantly run. At first I thought it was it was getting out whatever was there...but it didn't stop. The whole time he is on HTS his nose runs. His regular doctor said that we could stop the HTS and just use pulmozyme and albuterol, which is working well for us.

 

[sweetninis]

7% saline given to 6 months old is very rare to me my daughter was 3 months old when she was admitted to hospital for lungs issues and she was given 3% saline 3 times a day with different nebulizer medicine.I sometimes give her 3%saline when the secretions r very thick

 

[Linda2012]

I thought that it was high as well, but my experience is limited since he is my first with cf. He is now 10 months, but was about 8 when it was prescribed.

 

[aleeahsyaya6436]

My grand daughter was diagnoised at 3 days. She began Albuterol immediately and clapping. She also began taking Creon and med for reflux. At a few months old she got a nasty bacteria and began some steroid treatments she does the Albuterol, Budnesoine (spelling) and just finished an antibiotic breathing treatment. I think its better to get ahead of it, then behind the 8 ball, when she got sick for the first time she got really sick, it was scary, I think it might have been worse if she were not already on treatments. I don't know

 

[SARAHSARH253]

My son started pulmozyme at six months of age. I give this drug so much credit for his awesome health. I also agree with Heather (Mommafirst) with the benefit of starting these routines early. My son didn't started Hypertonic Saline until his 4th birthday. It was a fight for the first couple months, but now is just part of his day. I find all his treatments to be a gift for keeping his lungs healthy<img src="i/expressions/face-icon-small-wink.gif" border="0"> Still no lung infections (knock on wood) Good Luck!!

Sarah

Mommy to Johnny almost 5 w/cf & bailey 2 no cf

 

[kitomd21]

My daughter started Pulmozyme at eight months old. Her first CF team didn't agree with it's use in children under two years old. DD was hospitalized for an exacerbation at two weeks old - seemed logical to me that we should do anything available to keep the next exacerbation at bay for as long as possible. Even with the initial hospitalization at such a young age, they were still hesitant to start her on it. We sought a second option (for other reasons as well) - they started her on Pulmozyme immediately. Her follow up xray after being on Pulmozyme for a number of months showed improvement compared to those without the use of Pulmozyme.

While my daughter was hospitalized at two weeks old, I do think it was related to aspiration during delivery and worsened by CF....but, I'm still 100% confident that Pulmozyme was the right choice regardless of hospitalization. The goal is to slow down the build up of thickened mucus. The formation of mucus is unavoidable - it just makes sense to attack it head on before you're playing a game of catch up.

DD also takes HTS but only at 3%. Regarding the study - if children aren't necessarily aided by the use of HTS, why is anyone using HTS? If it doesn't help children, why in the world would it help adults? Why did we start using HTS based upon the longevity of Australian surfers? Isn't that the origin of HTS usage? I think children are different in the sense that their disease hasn't progressed in the same manner as an adult and therefore the results may seem misleading. I firmly belief that HTS has a benefit. Just makes sense to me...

 

[Mommafirst]

Katie -- I agree about the HTS. ONE study has shown that it may not work as well in kids, that's all. But the theory is sound and its the most natural of all the medicines we have our kids ingest. As long as they don't find it irritating (and as I said earlier, my daughter does not -- she LOVES it) it still makes a lot of sense to me. Though I think I'd prefer buying a house at the beach and teaching my daughter to surf! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2mason]

Our son started HTS 7% at 6 months. He had been having symptoms of lung involvement - wheezing/congestion in the mornings or after a long nap. Within 2 weeks of being on HTS, the wheezing had completely stopped! He is now 14 months and other than a few "grumpy" days, he is totally fine with his neb treatments. The HTS does not seem to be too harsh for him. It only makes him really cough if he is congested. It will make him sneeze some, but sneezing has always been his norm.

I did read the article on the study, and discussed this with our doctor yesterday. She said there is still too little evidence to prove one way or the other the benefits for young kids. However, we are aggressive with treating his CF and feel that if anything the HTS is providing additional moisture for his lungs, etc.