I am the Grandma to ReneeKAF.... Can we get some people to respond who have had preemies with Chronic Lung Disease and Pulmonary Hypertension that have been treated with Iloprost.
Dr's telling Mom and Dad not familiar with this med. From other posting I have read on this site, it appears to have terrific results. Let's familarize these Docs with this med and help Baby Renee and many other preemies that will continue to come through the doors.
Riley Hospital in Indianapolis is rated to have one of the best NICU units... how can they NOT be familiar with it??? I am looking to change that.
Whether you're a preemie parent, family/friend of a preemie family... a nurse at a NICU unit, a resident Dr or even Chief of Staff at a Hospital... we are in need of all persons that have had iloprost treatments for their preemies.
If this posting is sounding a little desperate, that is because we are. This is a beautiful little girl has fought to be here every little step of the way. She has defied other odds against her. She came a long way from being so tiny... not once has she EVER gave up.
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Calling all preemie parents/staff that have familiarity with Iloprost
- By ReneesGma
- Posted March 18, 2009 at 7:31 am · 16 replies
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- By ReneesGma
- Posted March 18, 2009 at 11:53 am
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Sorry, desperate Grandma... just bumping this back up towards the top
- By Yolonda
- Posted March 18, 2009 at 12:10 pm
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No need to apologize. I want to keep this at the top as well. I know you said the hospital doesnt know about Illopost, but have they ever heard of Flolan? Its not inhaled like NO or Illoprost, it is given via IV. Actually, had my daughter pulled out her hypertension episode, she probably would have been going home with an IV, and a Flolan pump. Maybe you can mention it to the neos there.
- By llcbc
- Posted March 18, 2009 at 1:11 pm
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cannot offer helpful information but I CAN keep it on the forefront of discussion...Your in my prayers..HUGS Lorrie
- By Yolonda
- Posted March 18, 2009 at 5:18 pm
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Bump...Anyone with info or know of anyone with info please respond to this post.
- By stushrn
- Posted March 19, 2009 at 8:05 am
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My daughter was born at 30 weeks with severe pulmonary hypertension. She was on inhaled Iloprost for two weeks and her pulmonary hypertension is resolved. Now, 19 months later, she remains pulmonary hypertension free. She was treated at Children's Hospital in Pittsburgh. Please contact me at stushrn2@yahoo.com for any further questions. There is much more info to give to you.
- By stushrn
- Posted March 19, 2009 at 8:11 am
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I'll just give you the main info, so not to waste any time in getting this treatment started. There is a pulmonary hypertension specialist at New York Columbia Children's Hospital. Her name is Dr. Erika Berman Rosenzweig, office phone number 212-305-4436. Her practice guided the team at CHP in treating my daughter. She is supposed to be the best in the world. Again, please email me for any further questions. We, too, were at our wits end and were told that our daughter would not survive. We really pushed for this treatment and the results were miraculous. I am definitely here for you to provide any more info.
- By reneekaf
- Posted March 19, 2009 at 2:28 pm
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hello i am the mother of renee, she has severe secondary hypertension due to severe chronic lung disease. the docs said the lloprost is for primary pulmonary hypertension. but since hers is secondary to the chronic lung disease that medication will not work. I did call you and leave a message I honestly don’t know where to turn. my baby is my world and now its crashing down
- By stushrn
- Posted March 19, 2009 at 4:06 pm
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I honestly don't know whether the iloprost is for primary or secondary. When we started the Iloprost, the docs thought that my daughter didn't even have a left lung. I still think it would be worth calling Dr. Berman Rosenzweig. Call her yourself and see what she has to offer. They gave my daughter the Iloprost along with respiratory treatments for her lungs as well. She was receiving some kind of inhalation agent just about every hour. Do they feel that the Iloprost would hurt her if they tried it? If not, then what would be the harm in trying it? If they are using NO and viagra, what would be the harm in adding the Iloprost. They shouldn't just be saying, " OH it won't work." I have to tell you that the first neonatologist did not want to try this on my daughter. Thankfully, they switched neonatologists the second week and the new one was all on board. You really have to fight for your child. It is a shame, but the doctor does not always know what is best. Do not just stop with them. You must exhaust every option. You really, unfortunately, have to be the number one advocate for your child. Keep pushing. And, please, try calling me again if there is anything else that you need to know. Please keep in touch with me. I pray that what we had to endure could save the life of another baby.
- By Yolonda
- Posted March 19, 2009 at 7:11 pm
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Why wont they just try it. When your back is up against the wall pull out not only the big guns but all of the ammunition. Primary, Secondary, try it,it just might work.
I just want you to know that Renee is in my prayers.
Yolonda
- By reneekaf
- Posted March 19, 2009 at 7:24 pm
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they are saying the lloprost could cause more damage than what is there. the docs also told dad that her PH is fixed. we will get in touch with that Dr Berman hopefully our prayers will be answered with something. thank you all for ur help and support we need this miracle baby to stay a miraclebaby and fulfill her life to the fullest. God Bless All
- By stushrn
- Posted March 19, 2009 at 8:20 pm
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Yolanda, I totally agree with you. If you are telling me that there is nothing to lose then try it. If they are saying that your baby may not survive, then why not try it. The first doc we dealt with was the same way, and I lost one of my twins because of his reluctance. Do you know how many times I have been asked, "What if they would have started the treatment sooner on Michaela? Do you think she would still be here?" I will never know the answer... until my dying day and I have to live with that. So, my message to everyone, is be an advocate for your preemie... go with your gut... if you have nothing to lose than you must push for the opprtunity. Reneekaf, I have an email out to the nurse practitioner at CHP that cared for my daughter. I will ask him about the primary and secondary PH and see if it matters with the Iloprost. Please call me if there is anything else I can do. Praying as hard as I did for my own for you. I remember the hopelessness and emptiness... Keep your head up. God is good and he performs miracles everyday. I have living proof.
- By jojosmom
- Posted March 20, 2009 at 1:43 am
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I did some research on this drug, seems very promising! check it out for yourself, some of it is hard to understand but i recognized alot of the terms that pertained to Jojo. 4ventavis.com
- By stushrn
- Posted March 20, 2009 at 7:33 am
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CHP is Children's Hospital of PIttsburgh. It is in Pittsburgh, Pennsylvania. I emailed the Nurse Practitioner from the NICU there last night. I have not heard back from him yet. Brandi, please do not hesitate to call me.
- By stushrn
- Posted March 20, 2009 at 8:00 am
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ARTCLES:
http://www.ventavis.com/html/pdf/iloprost_case_report/iloprost_case_report_ en_01.pdf
Close attention to case #2 in above article
http://www.ncbi.nlm.nih.gov/pubmed/11157720
http://www.ncbi.nlm.nih.gov/pubmed/11760674
http://journals.cambridge.org/action/displayAbstract;jsessionid=B1F54D1790E BB606557F138D9B0C3711.tomcat1?fromPage=online&aid=306927
The above full article the neonatologist should be able to obtain if you take them the abstract
www.lungenhochdruck.at/forschung/?download=RobynBarst-Studie.pdf
http://meeting.chestjournal.org/cgi/reprint/130/4/156S-a.pdf
In above article, it mentions bronchospasm as a side effect of Iloprost. My daughter received racemic epinephrine prophylactically to prevent this. It was never a problem for her.
linkinghub.elsevier.com/retrieve/pii/S0022347604010947
Above is another article that you will not be able to obtain but that the physicians should have access to.
Just google "BPD, pulmonary hypertension, iloprost, infant" Tons of scholarly articles will pop up. If your neonatologist just did this, he would see that it can work in cases of severe BPD. Again, please do not hesitate to call me. I can even provide you with the contact info of the neonatologist here in Pittsburgh that cared for my daughter. Also, if you are thinking about transferring your daughter, I know that Cincinnati, Ohio has a wonderful children's hospital where they do lots of research. Try contacting them. Indianoplois is not far from there.
- By stushrn
- Posted March 20, 2009 at 8:08 am
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Website for Children's Hospital in Cincinnati. They have a pulmonary hypertension clinic and they have conducted studies on prenatal and postnatal lung development.
http://www.cincinnatichildrens.org/
the website for their NICU:
http://www.cincinnatichildrens.org/svc/alpha/n/neonatology/default.htm
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