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chronic lung disease and pulmonary hypertension

reneekaf
3 Recommendations

Back on 10/5/08 I had emergancy c section1 i had a 23 weeker 1lb 4oz 11in at birth. about a month ago se got diagnosed with pulmonary hypertension. she has been on viagra and now NO which just got news today that her echo has not changed and that the meds are not working. the father and i need some advice we dont know where to turn we have a care conference on 03/18 to see what the next plan of action is for our little angel.she has been a fighter all this time and i am not willing to give up that easy everything that a preemie is expected to get we got it and this was the hardest to find out because being no cure. if any one has any advice i would love to hear about. we are in indianapolis indiana at riley hospital for children and i know this is the best place but they are not fam. with some of the other drugs i have heard and read about.

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Flolan Surgery Bosentan Hypertension Iloprost Revatio Pulmonary hypertension Viagra

23 replies

Yolonda

Hello,

I had a 23 weeker 1lb 5oz back in 2005. She was diagnosed with Pulmonary Hypertension in December, 2007 and died of a pulmonary hypertension episode in September, 2008. I didnt tell you that to scare, but to let you know that my daughter actually lived with it for 3 1/2 years before it became accute. Had it been caught as early as your daughter's, she may be here today. There are definately other meds out there besides viagra, and Nitric Oxide to try. Please you and your husband stay positive and do not give up hope. As long as your little one is fighting, you keep fighting for her.

I follow the blog a little girl named Kaleighanne Freeman http://kayleighannefreeman.blogspot.com/. This little girl suffers with pulmonary hypertension, she is still in the NICU, and was on the verge of death several times and now they are talking discharge in a month or so.

I encourage to read her blog. Her parents document everything. The treatments, the medicine everything. I, personally, do not have any advice on anything other than the current meds your girl is on, but if you do a search of pulmonary hypertension here, you should find some posts regarding it. There are a couple of moms here who have little ones with the disease.

Good luck to you and I am sending much positive energy your way.

Yolonda

jojosmom

Oh my goodness! This brings back so many memories from when my Jojo was diagnosed with pulmonary hypertension! It was heartwrenching to me when the doctors told me he had to go back on the ventilator! Oh i cried and cried and cried! I felt for him so much but I knew it was for the best they put him on the vent for nitrous oxide and it saved his life! Pulmonary Hypertension is pretty serious and definitely the earlier they find it the better. I would advise you to get a 2nd opinion or search for other alternatives but you must do it quickly! It's scary I know, but trust your instincts you know what's right for your little one even if you don't consciously know it. The doctors advise but ultimately only you know your child. We are praying for you guys! By the way Jojo was 23 weeks 1lb 4.9oz!

ReneesGma

Yes, she has already had the viagra treatment and after they did the ECHO, it came back worse... so viagra wasn't helping.

Now, they've been doing the Nitric Oxide, and they did the ECHO yesterday and still no improvement.

Now, it may be wishful thinking, but I keep thinking the from what I have read, that the inhaled iloprost is going the miracle fix... and I keep looking for something that is going to back up my hopes and dreams.

Her Mom and Dad have a consult with the Dr's today (Wednesday), I have faxed over ALL kinds of documentation supporting the use of the iloprost... but for some reason, I don't know if it is because the Docs aren't familiar with it, but are reluctant to try it.

Anybody that has had this used on their preemie with successful results??? Please PM me as soon as possible, and if possible with Doc name and hospital affiliation, even Doc phone number so maybe they can do a phone conference/consult... would be FANTASTIC.

My email is Sharrii @ gmail . com

We are getting desperate !!

Yolonda

Are they still giving her the viagra along with the NO? I know some docs are hesitant to do this as well as going up on the recommended amount of NO because they think it have no benefit pass a certain dosage.

My daughter was on Flolan, Revatio (viagra), Oxygen and Nitric Oxide and while this treatment did not save her life, I have spoken with many parents where it has. You want to treat the PH before it become fixed. If it does, no amount of medicine is going to lower the pressure. The thing is finding the right drugs while her pressure is still reactive and responsive to treatment.

I have an email out to all of my preemie parent friends that have childrent with PH. I will forward you any replies I receive.

Yolonda

3preemiemama

Is she on any steriods inhalers?, Chloe was 25wker @ 15oz, on top of the viagra, shes been on dexamethesone on and off, and getting pulmocort and xoponex every 4-6hrs.. also, they didnt want to rush her either with a lot of med cause she would just get sick and took a while to get better, but she got better, now she's 10mths and 16lbs...

LilyMaesmommy

My preemie was 23wks and 6 days and she has sever BPD and Hypertension and its was not horribly severe and then got worse so now shes on all kinds of medicine for it and lords knows how much stuff they did! I'm sure that she is on some sort of ventilator; what kind? Lily got Viagra and they wound up having to increase her dose twice before it starting doing anything! Plus on top of that they were doing NO and now that she's off that she get 3 breathing treatments every 3 hours. I'm very interested as to what the doctors decide. Not meaning that to be rude or nosey, but I've been where you are and we understand what your going through. We were at Dayton Childrens in Ohio and also at Nationwide Childrens in Columbus Ohio(THEY WERE VERY VERY VERY GOOD WITH HER LUNG PROBLEMS!!!!) If you need anything or just need to vent feel free to email me jahgl21@yahoo.com

Good Luck and your in our prayers!!!!

reneekaf

this afternoon we had our meeting. they told us there is nothing else they can do so basically it is up to us to find a drug that will work for Renee. she has secondary pulmonary hypertension due to chronic lung disease. any advice any where and anyone we need all support and help out there

M-and-D-Mommy

Can't offer any advise, but I just wanted to offer my thoughts and prayers for your little one! Please keep us updated! GOOD LUCK!!!

Yolonda

My daughter had secondary pulmonary hypertension as well. Dont give up your search and dont give up hope.

Its a hard position because the bpd will get better as she grows healthy lung tiusse, but time is a factor. I dont understand why they are so reluctant to try something else. If there backs are up against the wall and they tried all that they know, now is the time for them to get on the net, talk with other doctors and try new things. They never know what combination of meds may do the trick for her. Although there arent many options to treat PH, there are more than just viagra and N.O.

beckhamsmom

How long was she on NO? We were on for about 4 weeks - starting with 20 ppm, then 10ppm, then 5, then 2ppm. Our little one has CLD, but no pulmonary hypertension.

Good luck to you all.

SEngel

My little girl had the same problems. She was given a heart cath to determine the real pressure. Then she had surgery for a trach. Then the hooked her back to the vent. She has been on the vent 3 months, and her pulmonary hypertension is gone. Her heart is back to normal pressure and size. We hope to start weening the vent this summer, and get her back to normal. It's a huge step to get a trach, but it saved her life. Her heart would have given out without it. Get to a children's hospital where the specialize in PH.
Steve
nebsre2@yahoo.com

reneekaf

we are at riley childrens hospital in indianapolis indiana but willing to moveher but dont no where and if there is anything to do for her. she was on NO for 2 weeks she is on viagra 4 mg.they dont think she can survive surgery for trache. the last surgery she had is what is belived to do this to her.

Yolonda

Has anyone said she is a candidate for ECMO? They can only stay on the bypass machine I think for 14 days, but it does give the heart and lungs a break. Who knows what a 2 week break, plus the viagra, and may NO again would do for her.

reneekaf

WE WERE ON NO FOR TWO WEEKS 5PPM THEY SAID IF IT WAS GOING TO WORK IT WOULD WITH IN A FEW DAYS AND THEY RE BASICLY QUITING AND HAVE ALREADY STARTED TO WEEN HER O2 AND NO SHES IS A6 MONTH OLD 23 WEEKER WITH HOLES IN LUNGS AND WITH MONTHS OF HER HARD WORK WE WERE ALMOST ON ROOM AIR THEN THIS NOW WERE INTOBATED AND ON MAX SETTINGS SHE IS TALORATING THE WEEN SHES DOWN TO 70%ON HER O'S BUT THEY SAY BY HER LUNGS BEING SO DAMAGED THE BLOODVESSELS CANT BE TAMPERED WITH THE DOC GAVE US WEEKS TO MONTHS THEY DONT THINK THEY CAN KEEP HER STABLE ENOUGH TO TAKE HER HOME IM A LOST FATHER IN DESPERATE NEED OF OBVIOUSLY A MIRACLE BUT MAYBE EVEN A FEW SUCCESS STORIES

beckhamsmom

The NO regimen we were on was based on a clinical study out of Stanford University, I believe it was printed in JAMA. Our docs had us read this and believed it would benefit our son.

reneekaf

they told us that by the numbers they have seen in past it dont matter if it is 5ppm or 20ppm it should have made her pressures better but it didnt.

Yolonda

My daughter had RSV in December 07, she started off on 20ppm and it wasnt until she reached 40ppm that it started making a difference. She burned through those tanks quickly. I heard the same thing discussed between attendings, residents, students about how if 20ppm didnt do it 40 wasnt going to. However after day 3, they were able to wean and by day 10ppm and by day 5 she was down 1ppm but held onto that little bit for 2 days before she was able to wean off the NO all together.

I am so sorry they are unwilling to even try! I am praying for a miracle for your little girl.

reneekaf

ive brought other meds to ther attention bosentan ,dexamethesone ,pulmocort ,xoponex they say aw that wont work her lungs are so premature and her blood vessels in her lungs are too diformed thats why shes not responding to any treatments yet they ve only tried two they ve already started to wean her N O they keep saying nuthing will work her pressures are fixed but yet if we find anything let them know they say their hands are tied theres nuthing we can do but keep doing your research and let them know what we find no help they left it up to us i have to read this medical terminoligy 5 or 6 times to comprihend and as you can tell by my spelling i wasnt the best educated but no help from them im willing to go anywhere talk to any body transfer her anywhere to maybe a research facility that specializes in secondary pulmonary hypertension due from chronic lung disease shes stable enough to move all her issues due to her prematurity she has over come she fought her way the docs here have given up on her since the day she was born when they tried to give her back at birth said there was no chance she could make it shes to young out of the question of course but everyday there after we were being selfish and do more to her than for her she overcame all this i just walked with and told she would be okay i did tell when they'd say she couldnt do something but because of all of the issues they say she'll have as a reult of her premurity she not worth there time they look at it like oh they were right shes not gonna make it but i have layed her at gods feet so she is going to make it she has so many friends and family who are helping and supporting in any way they can and thankyou all and please if you have anymore suggestions, referals know of anybody any ideas or know of anyplace that specializes in the secondary pulmonary hypertention due from CLD i have to express that cause there so many types we need your help and your prayers and if u can second opinions on some of the things we all have suggested so i can know when im being played and know to be more persistant i dont know how much more persistant i can be without going to jail but in the end they make me think im wrong they know what their doing but thats noy what i feel in my gut but its easy to second guess yourself but thankyou to all especially you mom for your extreme detication
DAD

pre-memom

We found out our 24 weeker had pulmonary hypertension when he was 3 months old, just one week after we got him home from the NICU. We spent a month at our children's hospital and dealt with some of the same issues. He is now 7 1/2 months old and still on viagra/sildenafil and oxygen, but growing like a weed. I remember it took a while to tweek levels and doses of everything before he was stable. Because of protocol, the doctors were unable to ween him off the NO and were talking about the possibility of a trach. Of course there was lots of prayer behind this as well, but after talking with the doctors(and the rt's) they were able to wean the NO, but had to modify their protocol to get it done. I share this because our experience has been that the doctors will treat your child the same way they treat every other child with hypertension or bpd. We all know our children are special and individual, sometimes we have to convince(demand) that the doctors treat them as such. I hope you can convince your doctors to dig a little deeper and find the right treatment path that works for your daughter. She is in my prayers tonight.

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