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Post by miraclemom on Mar 3, 2011 15:29:07 GMT -6
Today we took our daughter for her follow up visit after a ctscan and bloodwork. The news was very discouraging. The scan showed a progression in scarring on the lungs, and several cysts. The team of specialists said that if she does not stop bleeding, the lungs may not last another year. She has been on steroids only for 6 years now. I am willing to try anything that would help. Are any of you from the Atlanta area or neighboring states, and have success stories. Please let me know. You could email me if necessary.
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Post by miriam on Mar 3, 2011 22:38:35 GMT -6
Dear Miraclemom,
Very sorry to hear your sad news. There are other options for management of this disease as well as steroids. We are based just outside Dublin in Ireland. My daughter's disease has gone down from 9 bleeds in 2009 to last year just having a minor episode. For us multiple types of immunosuppressants used concomitantly has been the key and it's helped us try to reduce her steroid dose.
I know our paediatrician has liaised with a colleague who has a special interest in interstitial lung diseases in Texas I think. I'll send you a message with my contact details.
Wishing you strength and endurance at this difficult time.
Miriam
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Post by miriam on Mar 3, 2011 23:02:22 GMT -6
To Ann,
Hoping things have settled down a bit for you.
M
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Post by riccardo on Mar 9, 2011 14:40:16 GMT -6
Miraclemon dear, we were very saddened to read your letter.
There are about 5 years that we know our daughter's illness but already 'since 2001 there had been serious incidents and then the disease began 10 years ago'.
For now, the current treatment for our daughter and 'cortisone (Deltacortene) and immunosuppressant (azathioprine), currently in Italy seems the only way forward, we tried to contact several doctors but all agree in care.
When there are acute episodes also include it in therapy and antibiotics seem to work well.
It seems that with this therapy are bleeding slowed.
Unfortunately, we must always remain on guard for any more 'little thing, especially when the bad weather arrives.
We have a portable oximeter to continuously monitor the situation we have also proposed a portable oxygen tank to stem the crisis.
We always hope for the best.
A warm hug
Riccardo e Giuliana
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Post by miraclemom on Mar 21, 2011 8:42:25 GMT -6
My 7 year was admitted itted in hospital this morning with new bleeds. The doctors want to biopsy the lungs. I would like to from hear from anyone who had biopsy done on their chiild's lungs. I am hesitant so any input is appreciated.
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Post by riccardo on Mar 21, 2011 15:02:21 GMT -6
Miraclemom dear, even our daughter did the lung biopsy and 'the only way to get more information' reliable.
After surgery and that 'lasted very little, there were no complications, and he and' resumed immediately and there were no complications.
Do not give up.
Best regards Riccardo
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Post by miriam on Mar 21, 2011 16:09:15 GMT -6
Dear Miraclemom,
Unfortunately my daughter bled quite badly after her open lung biopsy. She had an open lung biopsy and bronchoscopy together. She was not on treatment at the time.
Sent you a message.
Keep in touch.
Miriam
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Post by IPH NET on Mar 22, 2011 2:24:20 GMT -6
My daughter had her lung biopsy in 1984 (3 yrs old) They are concerned of bleeding from that particular site in the last year or so. They want to cauterize the spot (which may cause more bleeding at the site of the scar tissue) Remember she is almost 30 yrs old, but looking at another course of treatment. Her main course of treatment is corticosteroids.
Regards,
IPH NET
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Post by miraclemom on Mar 23, 2011 19:44:24 GMT -6
Update, as I previously shared my daughter was admitted Monday and placed in ICU. The doctors stated that she was critically ill etc. They immediately give her a huge dose of the steroids, and albuteral, with the intention of continous treatment every 4 hours. Amazingly, she did not need any further breathing treatments, and although her lungs showed new bleeds, her other labs came back great. Within about 4 hours her oxygen was already reading 100 on room air. Well, she was discharged today, and we are going to start the new treatment where she goes in for 3 days IV steroid monthly to see how it works.  |
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Post by miraclemom on Mar 23, 2011 19:52:34 GMT -6
I must say thanks for all your most valuable insights. We deccided against the biopsy.
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Post by riccardo on Mar 24, 2011 15:14:45 GMT -6
Miraclemom dear, we very happy for your notice. we hope always good. Don't give up. Riccardo Giuliana   |
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Post by IPH NET on Mar 24, 2011 17:59:16 GMT -6
Update, as I previously shared my daughter was admitted Monday and placed in ICU. The doctors stated that she was critically ill etc. They immediately give her a huge dose of the steroids, and albuteral, with the intention of continous treatment every 4 hours. Amazingly, she did not need any further breathing treatments, and although her lungs showed new bleeds, her other labs came back great. Within about 4 hours her oxygen was already reading 100 on room air. Well, she was discharged today, and we are going to start the new treatment where she goes in for 3 days IV steroid monthly to see how it works. miraclemom, We went through a similar situation with our daughter, at about 4 years old. She was in ICU on a ventilator, and at that time the steroids were the treatment of choice and she was on continuous treatment. After weaning her from the ventilator, she showed signs of cessation of bleeding, and her O2 sats were back to normal. At the end of the week she was able to walk out of the hospital. She recieved steroids for a few months and after marked improvement they were stopped and only used to treat an accute bleed. That is what makes IPH so difficult to manage. We found that the X-Rays were a few days off in predicting bleeding or progress. There may have been the start of a bleed with a relatively clean slide, but the bleed may have stopped and the next one looked bad. Your daughter is in everyone's thoughts. IPH NET |
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Post by miriam on Mar 24, 2011 22:59:24 GMT -6
Dear Miraclemom,
Great news. Thanks for telling us. Hope the weather's good and that you little one enjoys her freedom again.
Miriam
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Post by miriam on Apr 5, 2011 15:14:25 GMT -6
Dear Cooper,
Looks like my little one's changing from oral cyclophosphamide to oral 6MP. She's well it's just the duration that she's on the cyclophosphaimde that's the issue. I was wondering if your little one is on 6MP orally or IV. Also was he on azathioprine in the past? My daughter was before her cyclo started.
Would you send me an internal message with your consultant's name and hospital please? Forwarded it one before but it would help to have it again please.
Thanks
Miriam
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Post by cooper on Apr 6, 2011 2:30:49 GMT -6
Hi Miriam, as requested I have messaged you our consultant and hospital details incase you would like to speak to her about the 6MP.
My son is on 75mg daily oral 6MP. He started on a much lower dose but his white cell count didn't continually remain in the 3-6 level which is needed (as indicated in the research) so was gradually increased and it now stable at around 4. He has monthly bloods to check his levels.
I do believe that he was on azathioprine when first diagnosed but he hasn't been on that for quite some time (prob 2 year). He is now back on hydroxychloroquine and the tranexemic acid. Also monthly IVIG infusions. For our winter he is now on azithromycin to clear out the colds and he hasn't been hospitalised for over 18 months. Hopefully heading into winter this will continue.
Please let me know if you need any further information and keep well.
Best wishes,
Cooper
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