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Post by IPH NET on Dec 10, 2009 19:35:15 GMT -6
Share your experiences here, how you got to this point, anything you want.
IPH-NET
Just a thought. Since this is the internet, remember privacy on your behalf. So you might redact your real name, email address or anything else that you do not the world to know. If you want to contact another person on this board, use the PM feature. Just for your safety and not to get you loaded with junk mail.
Regards
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Post by cooper on Jan 14, 2010 20:26:42 GMT -6
Mu son has IPH and was diagnosed when he was 2.5 and he is now turning 5. He has had a pretty rough time over the past 2 years but has now been out of hospital for 4 months (which has been his longest period symptom free since diagnosis). Most of the medications that he has taken haven't worked but now has started a new trial and is going well. He is also taking a medication that is used by haemopheliacs to control thee blood loss and this has definitely had a marked effect on the severity of his bleeds. It is not recognized in the treatment of IPH but it has certainly worked for us. If anybody wants more information on the medications and treatments that my son has had, I am happy to answer any questions.
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Post by IPH NET on Jan 15, 2010 5:06:49 GMT -6
Mu son has IPH and was diagnosed when he was 2.5 and he is now turning 5. He has had a pretty rough time over the past 2 years but has now been out of hospital for 4 months (which has been his longest period symptom free since diagnosis). Most of the medications that he has taken haven't worked but now has started a new trial and is going well. He is also taking a medication that is used by haemopheliacs to control thee blood loss and this has definitely had a marked effect on the severity of his bleeds. It is not recognized in the treatment of IPH but it has certainly worked for us. If anybody wants more information on the medications and treatments that my son has had, I am happy to answer any questions. Thank you for joining our discussion. Our roughest time was also when our daughter was between 3-5 years of age. She is now 28, and the mother of two healthy sons. She still has issues, some new, some leftover from her earlier episodes. As you already know, there is a modality of treatments for IPH that has not changed over the past few years. For a brave doctor to try something new is what we need, and for medical professionals willing to take that step outside the standard treatment is what will make a difference. If you have any contact information that you would like to share, if your physician is willing to share their information with others, please let me know. Regards, IPH NET
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Rick
New Member
Posts: 2
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Post by Rick on Jan 24, 2010 6:52:18 GMT -6
My son was diagnosed at age 4, he is now 10. We almost lost him to a major bleed at age 5 (we were at the hospital when this happen or he would not be here today) that sent him to the hospital for 28 days, 17 were in ICU on a ventilator. At that point they brought in the head of Pulmonary, Hematology and Immunology and Rhuematology.
That started a long road, monthly hospital visits ect.. We tried numerous medicines like immuron, methatrexate, chloriquine and cytoxin to name a few. At one point they wondered if something else was occuring because of how resilient the disease is. After an open lung biopsy it was confirmed it is IPH. That started a 6 month time of shotgun medicine, oral steroids daily, weekly steroids through IV, monthly IVIG and Cytoxine.
Fast forward and today my son is 10, and the only thing he takes is steroids through IV every 6 weeks!!!! Last month he had a bronch and ct scan and the results are looking good. By looking at him you would not know there was a thing wrong with him.
The other crazy thing about this disease is everyone’s treatment can be different. One thing might work well with one child may not for another. I feel blessed that we have a great group of doctors without an ego.
Cooper I am going to send you my phone number, I would love to chat.
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Post by Miriam on Jan 25, 2010 15:07:07 GMT -6
Hi, My daughter was diagnosed with IPH in 2006 but had presented some time earlier. She has been on regular IV steroids but is on continuous oral steroids now, azathioprine (imuran, stopped), hydroxychloroquine (still on), acetylcysteine (still on, experimental), monthly IV cyclophosphamide (stopped) and is on oral cyclophosphamide. She's on septrin prophylactically for her cyclophosphamide. I'm interested to hear other people's experience. Are many using tranexamic acid to decrease the blood loss? Miriam
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Post by miriam on Jan 26, 2010 13:56:15 GMT -6
To Cooper,
I am emailing to enquire about how your child responded to IVIg please. I haven't heard of that being tried before. Did he get a response to it even transiently? I find to helpful to know what other possible options there are.
Also I am interested to see that he was on azathioprine before (it's a precursor drug of 6MP) but is now on 6MP. I don't work in paediatric medicine but I do understand that in a cancer care setting, patients can respond to 6MP even though they may previously have had azathioprine. Good to hear that this is holding true for IPH in your case. What type of regime are ye using for 6MP?
Regards,
Miriam
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Post by cooper on Jan 26, 2010 16:45:36 GMT -6
Hi Miriam, my son receives IVIg's every 4 weeks and this seems to hold off anything major happening when he has a cold, cough etc. He started having it only when he was actively bleeding and this was to lower his white cell levels and seemed to work well. I don't know how widely the tranexamic acid is being used for IPH but for us it has made a huge difference.
In regards to the medications that my son has tried, we have been through them all: prednisolone, hydroxycholoquine, azathioprine, cychlophosphamide, methyltrexate, infliximab and none seemed to make any huge difference to the frequency or severity of the bleeds. Now he is only on the 6MP, bactrum (which is an antibiotic) and the tran. acid. He is no longer on steroids of any form. We are still trying to exact the dose for the 6mp but currently he is on 1 tablet (50mg) 5 days a week and 1.5 tabs (75mg) 2 days a week.
Currently he has been out of hospital for 5 months and is 3 days from his 5th birthday. :-)
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Post by miriam on Jan 27, 2010 13:41:14 GMT -6
Hi Cooper,
Many thanks for that. I'm interested to hear your comments about lowering your son's white cell count, there was an article last year about 6MP in haemosiderosis in 15 kids and they found lower bleeds with a lower white cell count. I'm a doctor but not in paediatrics. I'll try to find the article and list the reference. Great to hear that tranexamic acid's helping so much. Miriam
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Post by cooper on Jan 27, 2010 17:06:21 GMT -6
morning Miriam,
I would assume that the article you are referring to is the one that we are working from..our doctors are trying to get his cell could to sit around 6 but at on his last bloods they were 8 so his dose was increased slightly. All seems to be going okay so far....fingers crossed
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Post by miriam on Jan 29, 2010 16:17:10 GMT -6
Hi Cooper,
Actually it's a different article but I hadn't heard about the use of IVIG until your posting on the page but I've found a few references now. Very impressive medical management. Good stuff and thanks.
Miriam
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Post by miriam on Jan 30, 2010 19:04:06 GMT -6
Hi Cooper,
I meant to say thanks for sharing all of that and it's great to hear that it's having such a positive effect on your son's health.
Miriam
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Post by Dorte on Feb 1, 2010 4:24:49 GMT -6
Hej Jeg har en datter omkring 3 år, som vi netop har fået at vide, at IPH vi lever i Danmark, og at der er 1 mere i Danmark, der har sygdommen, hvor i verden kommer i fra? Jeg har en enkelt mange spørgsmål om sygdommen, men ved ikke, hvordan jeg snart vil begynde, men kender alt for godt :-) så hvis der er nogle, der har noget at fortælle, som kunne hjælpe mig med Lone fremad. Håber, at jeg kan læse dette er ikke så gå til engelsk. gerne høre fra dig. hvordan Biver men "medlem"? Hils Dorte
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Post by Dorte on Feb 1, 2010 4:26:45 GMT -6
Hi I have a daughter about 3 years as we have just been told the IPH we live in Denmark and that there is 1 more in Denmark who have the disease, where in the world come in from? I have a single lot of questions about the disease but do not know how soon I will start but know all to well :-) so if there are some who have something to tell who could help me with the lone forward. Hope that i may read this is not so go to English. like to hear from you. how Biver but "member"? Greet Dorte
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Post by miriam on Feb 1, 2010 17:04:10 GMT -6
The time around the diagnosis is a tough time. There's a very helpful summary of IPH on uptodate.com also there's the website of BPOLD (British Paediatric Orphan Lung Diseases) that has a section on Haemosiderosis.
It may sound strange but everything takes time and you and your family could be one of the lucky ones especially when your little girl starts treatment. Haemosiderosis is a spectrum and not all kids are affected to the same degree. Mind yourselves.
Keep in touch,
Miriam
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Post by miriam on Feb 8, 2010 16:53:30 GMT -6
To Cooper,
Should have said- hope you little one's birthday went well
Miriam
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