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Post by miriam on Sept 3, 2010 16:17:13 GMT -6
Dear All,
Welcome to Miracle mom and Ann. IPH NET- it's very frustrating to have to go through that. I hope your daughter's well on the mend now.
To Ann and Miraclemom - we've put a few physicians in contact with one another so that hopefully their shared learning will benefit all with IPH. My own daughter is much better now on oral cyclophosphamide. Best she's been in ages once we got her pain (chronic post thoracotomy pain after her open lung biopsy and chest drain). She's had oral steroids (now 2.5mgs daily equivalent her lowest in over 2 years) , hydroxychloroquine, acetylcysteine and of course cyclophosphamide.
Please feel free to send me a message through the messaging system so that I can give you my email.
miraclemom- are there many others in the Madison Foundation?
sorry for being quiet so long - we were moving house and were in France on hols.
She now plays outside on her flicker (2 legged scooter). I can't remember when she last played an energetic game like that. A very good development.
Regards,
Miriam
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Post by miriam on Oct 6, 2010 15:57:30 GMT -6
My daughter's just started azithromycin (zithromax) an oral antibiotic which is used in cystic fibrosis to dampen the overactivity in the lungs. It's experimental but I'll let you know how it goes. M
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Post by jabalcuza on Oct 17, 2010 11:54:19 GMT -6
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Post by miriam on Oct 22, 2010 10:21:24 GMT -6
Thanks - that's really good to hear. I know another mother whose son's taking it also. Fingers crossed.
I hope you're keeping well.
M
Gracias - que es realmente bueno para escuchar. Sé que otra madre cuyo hijo se lo está tomando también. Crucemos los dedos.
Espero que estés manteniendo así.
M
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Post by miriam on Oct 31, 2010 17:32:07 GMT -6
Cooper,
I was wondering if your son's still taking steroids and if so, how much? I'm glad the 6 MP's working.
It may be helpful to share what steroid doses our loved ones are on? It's Autumn rolling into Winter here and my little one's feeling it. Her steroids have been going up the last while and every time they're cut. Currently she's on 15mgs oral prednisolone.
Best wishes,
Miriam
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Post by cooper on Nov 1, 2010 16:25:46 GMT -6
Hi Miriam,
No my son hasn't taken steroids for about 16 months as they weren't helping him at all. He is still on the 6MP, tranexemic acid and hydroxychloroquine which seems to be working well. He hasn't been hospitalised with anything actue for 15 months but has only had a few weeks over winter that has required oxygen. All in all going well. He has also started playing sports and we are moving into summer so things should only get better....touch wood!!
He was also granted a wish through Make-A-Wish and recently flew to Queensland to the theme parks and Australia Zoo.
Hope everybody is going okay and would love to hear updates.
Keep well Cooper
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Post by miriam on Nov 2, 2010 17:12:26 GMT -6
Hi Cooper,
Delighted to hear that things are going so much better for you and your little one.
I was wondering if anyone has been given retuximab or similar for IPH and if so, how did things go? I haven't been able to find relevant articles- they are medications used for autoimmune disorders and cancer.
Best wishes to everyone,
Miriam
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Post by alexamariel11 on Mar 3, 2012 18:41:50 GMT -6
Hi Everyone,
Thank God i finally found this site. It gives me hope for my daughter. Shes a 4year old who has just been diagnosed with IPH. She already had 2 big episodes of which a blood transfusion was done. We live in the Philippines unfortunately no doctor here who handles such case. We decided to go to the US in the next 10 days. Since we will be going to Dallas, Texas anyone who knows a specialist over there? That will be of great help.
Thank you and God Bless
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Post by cooper on Mar 4, 2012 20:35:07 GMT -6
Hi Alexamariel11,
Sorry to hear that your daughter has IPH. Unfortunately I can't help you out with a specialist in Dallas, we are in Perth, Western Australia and have had wonderful success with my son. If you can find a good respiratory team you will find that you don't need to actually be in the US as there is a great network of shared information. My son was 3 when he was diagnosed and has been very sick. He is now 7 and going great. We attend Princess Margaret Hospital who are fantastic. If would suggest you read the "This is your chance" section as there is great information on medications and general questions. If you have something specific you would like to ask, feel free to put any questions up or email me directly. I am happy to help where I can.
The most important thing is to remain positive, reading this site you will be able to see that we have all been where you are now and you can get through, and things do get better. It's okay to be scared and there are other who can help and understanding what you are going through.
Keep in touch. Cooper xx
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Post by miriam on Apr 11, 2012 16:13:40 GMT -6
Dear Alexamariel11,
Sorry to hear that your daughter has IPH. I've sent you a message with the name of a wonderful doctor in the States. I agree with Cooper that there's a good network of shared information so that one doesn't have to live in the US.
Keep in touch,
Miriam
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Post by lynda Trow on Jun 21, 2012 8:22:17 GMT -6
Hi everyone, I was diagnosed in May of this year. Having had three bouts of pneumonia in two years, my consultant was not happy that it was the correct diagnosis. He referred me to another consultant at the hallamshire hospital in Sheffield UK. I had a lung biopsy and had a major episode, but it was conclusive and I have recovered well. Currently I am on prednisilone, reducing hopefully to 5mg.
I am 46 years old and have had asthma for most of my life. I was diagnosed with coeliac disease just over a year before my IPH diagnosis. The doctors have connected the two but ass of yet they do not know how. If anyone can help with the connection it would be appreciated. very little information is available, and what is, is quite frightening to someone who is newly diagnosed.
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