DownSyn Forum

[momtologan]

Hi there,

It's been a while I know but we are going through our own kind of hell so I retreated into myself and became a bit of a recluse for quite a while.

I wonder if anyone can help me, as some of you know, Logan's doctors have been suspecting that she has PPH since last year. She is now on oxygen 24 hours per day and Viagra. This is the only drugs we have available in South Africa for her condition but her new Cardiologist mentioned Bosentan when we took her to Cape Town last week. It is not available here and unlikely it will come over due to the expense but I was wondering if anyone esle has used this drug for PPH and whether it stabalizes the condition?

We were basically told last week that Logan's condition is progressive and very rare. I'm not willing to accept defeat and just let her die. I am starting a charity for her so that we can raise funds to get medication imported so I need to gather as much information as possible from moms in similar situations who have used drugs for PPH, how it has helped, the cost and any other information you can share.

Would also like to know how your little one's cope with it, their symptoms and age. All indications we have been given is to prepare for a very short life expectancy. .... Looking for hope and some kind of miracle!

Thank you so much, I am in a bit of a desperate state at the moment.

Angela

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<img<a><img></a></img><p>Angela, wife to Cobus and mom to Jordan (7), Shannon (4) and Logan (Born July 2009</p>
- DS and ASD/Pulmonary Hypertention)

[Aidansmom25]

I really wish I could help more. My son had PPH as a newborn and came home on oxygen and viagra. He was treated in the hospital with three different blood pressure meds, morphine, nitric oxide and oxygen. His high pulmonary pressures persisted longer than normal and were up in th 120 range at one point, three times their normal. He was never given that one drug you mentioned though so not sure on how effective it is overall.

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Melissa mom to Aidan (9-2-04) and Kyler (3-8-07, DS)