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Post by miriam on Apr 6, 2011 15:21:53 GMT -6
Hi Cooper,
Many thanks. My daughter's also on hydroxychloroquine and azithromycin. It's very helpful to hear that your little one had had imuran too.
Thanks again. Enjoy the good weather.
Miriam
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Post by dionne on Apr 19, 2011 8:26:52 GMT -6
This is a blog entry that I wrote in tribute to my little Sister who died from IPH 22 years ago.
I was 6 years old when my little sister Kristina was born. (We called her Sissy since the day she was born!) She was a beautiful, chubby cheeked, happy baby. Having been the baby for 6 years you can imagine that I was none too happy about her arrival. I remember telling my Mom one day that I was going to run away because nobody loved me anymore! Yes...I was THAT kid! Lol!
My Mom packed me a lunch and helped me to pack up a small suitcase, she walked me to the door and told me that she loved me and that she'd miss me and then told me goodbye. I sat out on the porch for what seemed like hours...but was probably no longer than 30 minutes! I couldn't believe that she helped me run away. Finally I got tired and went back inside to watch cartoons. After a while I decided that I liked her enought that we could keep her lol.
When Sissy was two and a half (I was 8) I remember my Mom having to rush her to the hospital. I don't remember what all was going on with her other than the fact her head was hurting her so bad that all she did was scream and that she was having trouble breathing. She was in the hospital for a couple of weeks...they couldn't figure out what was wrong with her, all they knew was that her lungs were hemorrhaging and she was drowning in her own blood (for the lack of a better way to explain it.)
Her Dad (my step dad) was stationed in Korea at the time and was immediately flown home...they weren't sure if she was going to survive this or not. I can't remember how long it took them before they finally had a definitive diagnosis but I know that by the time they did figure out what it was she'd had several "episodes" and had been hospitalized several times. She was finally diagnosed with IPH. I remember my Mom trying to explain this disease to us, I can't say that we understood it. All we knew was that it was bad. We were all devastated. And scared.
She was a guinea pig, none of the doctors knew what to do with her. Momma always tried to bring her to the same hospital, because if she brought her to one that she hadn't been to before they would poke and prod at her, it was awful. They really had no idea how to handle her case.
She was on Prednisone her entire life (starting at 2 1/2), they stunted her growth and puffed her cheeks up so much that they looked like if you touched them they'd bust. She was about 4'0" (if that) when she passed away. She was also on iron supplements off and on all her life.
They figured out when she was 5 or 6 that milk and milk based products were one of the main things that would cause her lungs to start hemorrhaging. Once they cut anything and everything with milk in it out of her diet it seemed to lessen the occurrences of hemorrhaging. Even with that she was still hospitalized at least 9 or 10 times a year. I couldn't begin to tell you how many times she was hospitalized in her lifetime, but I know it was a lot.
I can't imagine what it must have been like for her. Knowing that she was terminally ill. Going through all she had to go through on a daily basis. Having to miss out on all the things that "normal" kids got to do. She couldn't go outside and ride a bike (for very long), she couldn't run, she couldn't eat ice cream, eventually she couldn't even go to school. She had to give up so much because of this damn disease.
She had a slumber party for her 13th birthday and sometime in the the middle of the night she woke my Mom up to tell her that she needed to go to the hospital, "it" was happening again. She wasn't feeling well and was having trouble breathing. By the next morning she was on life support and had to be resuscitated twice. The doctors sat my family down in this little room and gave us two choices, we could either pull the plug or we could send her to Children's Hospital in New Orleans where there was a Dr who specialized in the disease she had. On a side note, my Mom was never told of a specialist anywhere...let alone right there in New Orleans, 3 hours away from where we'd lived almost her entire life.
We decided to send her to New Orleans. But by the time they got her there she was in multiple organ failure. She lived for 6 weeks before her little body couldn't take it anymore. As a family we all decided that we needed to tell her that it was ok for her to let go, that she'd fought hard and long enough. It was time for her to finally rest. When the Dr came out to tell us that she had passed away my Mom didn't shed a tear, she looked at the doctor and told him (in the calmest voice that I've ever heard) that she wanted to thank him for everything he did to try to save her. I was hysterical. But Momma never cried.... until we drove away from the hospital and the only thing she said was "my baby!" And then this scream came out of her...it's one of the most heart wrenching things I've ever heard! I could tell that it came from a dark place deep inside her heart. It seemed like she cried for two weeks straight. Momma was never the same after she died, a part of her died that day too!
When we got back to our house Sissy's three best friends were at our house and they didn't leave my Mom's side...not once for over a month. Those three girls were so good to Momma, I really don't know how she would have survived without them. They gave her a sense of peace. I'll never forget how there were there for her, how they comforted her in those days after we lost Sissy. They sat with her. They held her hands. They wiped her tears. They held her.
Her's was the saddest funeral that I've ever been to, not just because she was my sister but because the entire Jr high school was there. It was amazing because Sissy hadn't been to school in two years, walking up and down the stairs and walking from class to class was too much on her lungs. Teachers from the school volunteered to come to our house and home school her. So to see all these kids show up for her funeral even though most of them hadn't seen her in a year or two, it was touching.
The preacher was a close friend of my Mom's and he asked everyone there if they would write down one thing that they loved about Sissy. During the service, he would pull a slip of paper out of the bowl and read it. It was so comforting to hear what everyone had to say. He gave all of them to my Mom at the end of the funeral.
About 6 months after she passed away on Arbor day, the school dedicated a tree in front of the new school they were building to Sissy and invited my family to the dedication ceremony. Her friends and classmates got to tell us about her, there wasn't a dry eye in the house. One by one these poor kids got up and spoke about her, half of them would have to stop because they were crying so hard. It was heart wrenching and touching at the same time. After the ceremony they had a balloon launch in her honor.
Years (probably 10 years or more) later my Mom was watching a program on TLC and they were talking about this cluster of 10 babies in Cincinnati that were sick and they couldn't figure out what was wrong with them. In one of the instances there was a set of infant twins...one was sick, the other wasn't.
When they said the name of the disease that these kids had, my Mom almost fell out of her chair! Yup! They all had Idiopathic Pulmonary Hemociderosis. (Remember, when she was diagnosed there were only 5 known cases in the U.S. according to her doctors.)
Every one of these kids lived in a house that had black spore mold in it. In the twins case, one twins crib was by the ac vent and the other twins crib was clear across the room from it. The one who's crib was closest to the ac vent was the one who was sick. The mold spores were flowing through the air coming out of the vents.
The reason that the infants/babies got sick and the older kids in the homes (like my two older sisters and I) didn't was because the babies lungs were weaker and more susceptible to the mold. The older kids lungs were stronger, more developed.
We lived in TN when Sissy was born and lived in a house with a basement which was full of mold. But back in 1975 no one knew the dangers of mold. (I totally freak the minute I see mold on something now!) In short, (according to the TLC progam) it is thought that Stachybotrys chartarum (black spore mold) is what caused these kids to get this awful disease. Officially, there's still no "known" cause.
After hurricanes Katrina and Rita I found out that our local TV station was going to be doing a story about mold in all of the homes because of the flooding. I emailed the reporter and told her about Sissy in the hopes that she wouldn't just talk about the insurance companies dragging their feet and yada yada yada, I wanted to make sure that she talked about the toxic effects of mold!
The reporter emailed me back and asked me if I would be willing to appear in the report and talk about Sissy's life, and death. I can't begin to tell you how much I didn't want to do it. I am so not the public speaking kind of person but I figured if by doing the interview it could help save one life...I had to do it. That's why I decided to write a blog entry about her life, and her death. (Well, that and because I miss her.) Maybe it can help save one life.
There's still no (known) cure for this awful disease. Though when I was looking it up to do that interview I did read about a couple of instances where they "caught" the disease early enough that they gave the babies (there were two of them that I read about if I'm not mistaken!) steroids and in one of the cases the baby never had another "episode" of hemorrhaging again! The other baby went a couple of years before hemorrhaging again. There were also a couple of adults who'd had double lung transplants and seemed to be doing fine.
The entire 6 weeks that Sissy was in the hospital in New Orleans my family and I stayed at the Ronald McDonald house. (Except my Mom, she never left the hospital.) If not for that amazing organization we wouldn't have been able to spend all the time with our Sister that we did. We were able to go to the hospital every morning and stay there until the late afternoon. Every day. She was in a drug induced coma, but I know that she knew we were there. Can you imagine what an amazing gift that was to us? I donate to them every chance I get. Please...if you can afford to make a donation to a worthy cause, please make a donation to the Ronald McDonald house. Or if you live near one you can donate your time by volunteering.
Thanks for listening and for allowing me to pay tribute to my little Sister. She's been gone for 22 years now and I still miss her just as much as I did the day we lost her! Her tombstone says "You are the sunshine of our lives" and that's exactly what she'll always be!!
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Post by miriam on Apr 19, 2011 15:39:12 GMT -6
Dear Dionne,
Many thanks for sharing your sister's memory with us. She sounds like an amazing little sister.
Kind Regards,
Miriam
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Post by miraclemom on Apr 22, 2011 23:55:30 GMT -6
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Post by miraclemom on Apr 22, 2011 23:58:46 GMT -6
Dionne,
Thanks so much for sharing and joining us.
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Post by IPH NET on Apr 23, 2011 11:53:21 GMT -6
Dionne,
Thank you for sharing your life with your sister. I know what it felt like, I know what it feels like now, as my daughter is almost 30 and is dealing with IPH every day. I went thru the ICU, the doctors not knowing, the going into the ER knowing more than the people there (God bless them because they didn't have the info I had) and having to say Idiopathic Pulmonary Hemosiderosis what seemed like millions of times like I knew it personally. Please share anything you wish to with us. We have all been thru the battles, either personally or a family member. I would love to leave a legacy that this insidious disease has a cure. I don't know if I can but we are growing a family of families that may make it happen. Thank you for your post. Please stay with us and know we are trying to make IPH no longer a rare disease but something that can be dealt with.
Regards,
IPH NET
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Post by miriam on Apr 26, 2011 1:00:00 GMT -6
Dear Miraclemom,
I expect that the pulse steroids are doing your little one a lot of good. My daughter got the same for about 6 months and it really helped at the time. She was also on low dose azathioprine but once they weaned her steroids down to stop she started having bleeds, her azathioprine got titrated up repeatedly. Eventually she changed to hydroxychloroquine which did suit her but she still had a lot of bleeds in the winters. Cyclophosphamide made a big difference for us. We are coming out of our first Winter since 2005 that we've had no hospital admission for haemorrhaging. Our lives are transformed thank God.
I'm not sure what "natural" remedy you're referring to. I have brought my little one to a practitioner that reminded me of reiki. As there was no taking of supplements involved I just felt like it was covering all options. A well meaning person brought my little one to an alternative practitioner who (having no knowledge of IPH) told her to come off all her meds (she was on a lot of immunosuppression at the time and had been into hospital a lot) and take a 'natural' remedy and that she'd be well. My kids were really excited to have heard this incorrect information. It took a lot of negotiation with them. It can be useful just to check with your doctor or the medical team's pharmacist that the herbal / alternative treatment doesn't interact with the formal medication given. Some supplements do and that would be unfortunate while if one was reassured that there was no interaction that would be a help.
I hope your experience is better.
Mind yourselves,
Miriam
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evi
New Member
Posts: 10
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Post by evi on Apr 28, 2011 12:29:11 GMT -6
Dear miraclemom
We have also tried several different alternative treatments. In addition to Reki, particularly homeopathy and osteopathy. We have invested much time and money. Again and again experienced a lot of promises and disappointments. At the same time our son was always treated with cortisone and he was examined by his doctor regularly. My son is today - after 3 years IPH - much better, although minor bleeding occur repeatedly, particularly at normal colds. Then we always raise the cortisone and he gets Reki. Normally we give our son every other day 10 mg Prednisolon, along with a stomach protection and other daily homeopathic globules and about 1 time per month, a treatment by an osteopath. The last laboratory values were very good, also the bone metabolism seems ok. What helps my son, of course we can not say, but I would caution against abandoning the medicine entirely, because our children have unfortunately a very serious disease. I would say: The most expensive "healers" are not always the best healers. Be careful with the selection. It is also advisable to get in touch with other patients. You will surely also experience disappointment. But we, as parents, at least have the feeling to do everything for our child!
Kind Regards
Evi
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Post by miriam on May 16, 2011 15:16:34 GMT -6
My daughter started 6MP orally today. Will let ye know how it goes.
Has anyone had any experience of 'targeted therapies' being used- like happens in adult cancer care or arthritis?
Miriam
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Post by cooper on May 16, 2011 17:14:13 GMT -6
Good luck Miriam, we haven't looked back since starting the 6MP. 21 months hospital free. Hope you have the same experience. It took a while to get the dose right to have the white cells remain in the 3-6 range. FYI we are on 75 mg daily and this has kept us where we need to be.
Finger are crossed for you and you daughter.
Regards, Cooper
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Post by miriam on May 17, 2011 13:29:05 GMT -6
Many thanks Cooper for your wishes. She's started on 80mgs 6MP daily. They're working on ideal weight to start.
Fingers crossed. Will let ye know how we do.
Miriam
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Post by cooper on May 29, 2011 17:24:48 GMT -6
Well we are very nervous as our little man has surgery on Thursday. He is being admitted tomorrow for 2 days of IV antibiotics and then is having his infuser port repaired / replaced. Things don't ususally go well after surgery but last time he caught gastro in the waiting area so I suppose it wasn't the surgery but the surroundings. Just the thought of tubes being forced into his already fragile lungs gets my stomach turning.
Does anybody else have a port??? Great invention but just a bummer he has outgrown it.
Oh well, everybody keep your fingers crossed for us and hopefully we will be back next week.
Best wishes to all, Cooper
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Post by miriam on May 30, 2011 15:58:14 GMT -6
Dear Cooper,
Best of luck on Thurs, I hope it all goes well. my little one doesn't have a port. We're doing the'fingerprick' FBC's.
Will keep you all in our thoughts & prayers.
Regards,
Miriam
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Post by jabalcuza on May 31, 2011 2:40:06 GMT -6
Hola, Gracias por compartir la historia de tu hermana dionne, os voy a poner mi blog, para que sepais un poco más de mí. Yo también estoy con terapia de Reiki y tomando equinacia y propolis, para que mis defensas suban y no me resfrie. Creo que es la mejor alternativa. Los médicos deberian de estudiar un poco más sobre la prednisona. Yo noto que a mi no me va nada bien. empezé a tener mas problemas de sangrado cuando empezé a tomarla que cuando no la tomo. Reposo absoluto, oxigenotaria y el antibiotico para tratar la infección, es lo que mejor me está resultando. Eso si, en crisis es mejor estar ingresada. Siento no escribir en inglés, ni hacerlo a través del traductor. Pero creo que se entiende mejor cuando lo traduce google directame. Un beso a todos y mucho ánimo, yo llevo 46 años con ella y una vida "normal" mi blog es: hemosiderosispulmonar.wordpress.com/
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Post by jabalcuza on May 31, 2011 2:42:27 GMT -6
Hi, Thanks for sharing the story of your sister dionne, I'll put my blog, for you to know a bit more than me. I am also Reiki therapy and taking equinacia and propolis, so my defenses go up and I'm not cold. I think it's the best alternative. Physicians should study a bit more about the prednisone. I notice that my not going at all well. I started to have more problems with bleeding when I started taking it when I do not take. Absolute rest, oxigenotaria and the antibiotic to treat infection, is the best thing I'm finding. That if, in crisis is better to be entered. Sorry for not writing in English, or do it through the translator. But I think it is better understood when google translates it directly. A kiss to all and lots of encouragement, I took 46 years to her and a "normal" My blog is: hemosiderosispulmonar.wordpress.com/
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