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Post by jmmcgraw on Feb 15, 2011 9:40:34 GMT -6
Hello,
My daughter now 2 was diagnosed with IPH at Mary Bridge Children's hospital at 3 weeks old. I was working and my husband was home getting his bags ready for his upcomming deployment when he went in to feed her. He noticed she had blood around her mouth and a clot of blot on the bassinet sheet, he called me and we rushed her to madigan a hospital here onpost. They told us she was very ill and that Mary Bridge was better equipped. They flew her there and she was on Cpap and then they moved her to a less evasisve machine, she was in the hospital for a month. Noone could figure out what was wrong and finally a doctor from europe was in doing trials and asked to see her and he then made the diagnosis after looking everything over for a couple days. After this incident she has had colds left and right and recently she has had a cold since halloween and we finally got her better. My question is how come very little doctors know about this illness and is it normal for a child to not have any symptoms besides getting colds alot? I have taken her to doc and doc and they stare at me like I am making this up and it's getting frustrating.
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Post by miriam on Feb 15, 2011 14:42:52 GMT -6
Dear Jmmcgraw,
Welcome to the site. It must have been terrible for you to have gone through so much when you're little one was so young.
I expect that we've all had similar experiences but it can be really upsetting and worrying. The thing that we found helped us most was that we've an A4 page summary of my daughter's symptoms and of the signs to watch out for and it includes the management plan. It's been very useful and made things less stressful. Please feel free to send me a message if you wish.
There is much more info out there especially recently.
Regards,
Miriam
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Post by riccardo on Feb 17, 2011 14:58:42 GMT -6
Buongiorno , ho letto con sincera preoccupazione la vostra esperienza penso sia stata molto preoccupante. Nostra figlia Arianna non ha mai avuto episodi simili anche se due volte ha sputato saliva con tracce di sangue. Sono oramai 5 anni che sappiamo della malattia anche se probabilmente gia' da molto piccola aveva il problema , ora ha 14 anni ed e' in cura con Deltacortene e Azatioprina. Bisogna stare attenti ai piu' piccoli segnali e prevenire. Attenzione anche ai raffreddori ed influenze che possono scatenare la malattia. Noi abbiamo anche un piccolo saturimetro portatile per poter leggere sempre il valore di ossigeno nel sangue. Purtroppo nessuno sa' bene di questa malattia ma la miglior cura sembra l'uso di cortisone ed immunosoppressori. E' un ottima cosa il mantenere contatti e scambiarci le proprie esperienze. Un caro saluto a tutti Riccardo
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Post by miriam on Feb 17, 2011 16:38:39 GMT -6
Dear All,
Riccardo- apologise that this translation is a bit off.
From Riccardo -Hello, I read your experience with sincere concern, I think it was very worrying. Our daughter Arianna has never had similar episodes although twice spat saliva with traces of blood. They are now 5 years we know about the disease even though they probably already 'had a very small problem, and it now has 14 years' Deltacortene and treated with azathioprine. We must be attentive to the 'small signs and prevention. Attention also to colds and flu can trigger the disease. We also have a small portable oximeter to always read the value of oxygen in the blood. Unfortunately, nobody knows' the good of this disease but the best treatment seems to be the use of steroids and immunosuppressants. It 's a good thing to keep in touch and exchange their experiences. Greetings to all
Thanks Riccardo -what immunosuppressant agents is your daughter getting? Have you noticed any particular pattern of response? Quello che gli agenti immunosoppressori è tua figlia ottenendo? Avete notato alcun particolare modello di risposta?
Regards,
Miriam
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Post by riccardo on Feb 18, 2011 14:50:11 GMT -6
Dear Miriam, I hope I have understood the question. my daughter, as an immunosuppressant, took 50mg of Azathioprine days, along with cortisone (Deltacortene), honestly do not see immediate effects like cortisone, but since it is an autoimmune disease and the doctors think that having to use medication. I recommend everyone to purchase a portable oximeter to keep under control the saturation values, doctors have also advised us to take home a bottle of oxygen to treat the crisis promptly. Currently this therapy (azathioprine and Deltacortene) seems to work fine even if sometimes the same crises occur. I'm 'using the translator I hope you can understand. Best regards Richard Ascolta Trascrizione fonetica Dizionario - Visualizza dizionario dettagliatointeriezione0.good evening
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Post by cooper on Feb 18, 2011 17:09:27 GMT -6
Hi Riccardo, My son had the same problem with taking steroids (prednisolone) and still having bleeds. Our Dr's took him off them about 3 years ago because the long term effects were greater than the short term benefits. He is now on tranexemic acid and mercaptopurine (6MP) and has been in remission now for 18 months. We too have a portable stats monitor and home oxygen for emergencies. We also have a concentrator for to keep him from hospital when having a self limiting bleeds.
Mi hijo tenía el mismo problema con la toma de esteroides (prednisona) y sigue teniendo las hemorragias. Nuestro doctor lo llevó fuera de ellos unos 3 años atrás, porque los efectos a largo plazo eran mayores que los beneficios a corto plazo. Ahora está en el ácido tranexemic y mercaptopurina (6MP) y ha estado en remisión durante 18 meses ahora. Nosotros también tenemos un monitor de estadísticas portátiles y oxígeno en el hogar en caso de emergencia. También disponemos de un concentrador para mantenerlo en el hospital cuando se tiene un sangrado autolimitado.
All the best Cooper
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Post by miriam on Feb 19, 2011 18:57:21 GMT -6
Dear Riccardo,
We too have a small handheld oximeter. It's very useful. And we've portable oxygen as well. My daughter's disease is steroid sensitive. However we're having a much better Winter than usual thanks to oral cyclophosphamide, increased hydroxychloroquine and perhaps helped by azithromycin (trial as antiinflammatory). And we're weaning her steroids slowly
Abbiamo anche un piccolo oximeter portatile. È molto utile. Ed abbiamo l'ossigeno portabile come bene. La malattia di mia figlia è lo steroide sensibile. Comunque abbiamo un molto Inverno migliore di usuale grazie al cyclophosphamide orale, l'hydroxychloroquine aumentato e forse aiutato dall'azithromycin (la prova come l'antiinflammatory). E svezziamo i suoi steroidi lentamente
Regards,
Miriam
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Post by miraclemom on Feb 24, 2011 19:39:24 GMT -6
Hi Everyone: My daughter who was diagnosed at age 1 is now 7. She has been hospitalized over 40 times, but was episode free for over 2 years age 4 to 6. What I have noticed is that stressful events seem to precede severe episodes. For example, she had surgery on both legs as the longterm use of steroids affected her bones. The surgery was done on an outpatient basis, and within 24 hours after the surgery, she had a massive bleed and had to be hospitalized for 10 days. In addition, in most cases, head cold seem to be present just before an episode. I read somewhere that in the UK doctors had successfully treated children with IPH by using antioxidant given through IV. (I lost that information). I decided to start giving my daughter antioxidant rich food and juices. I noticed the big difference as she went episode free for 2 years, and was down to the lowest dose of steroid she ever had. Has anyone come across the article from the UK doctors? I am even thinking of finding a way to take her to the UK if it would help as I want her off the steroids. Thanks everyone for sharing your experiences. I helps a lot.
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Post by miraclemom on Feb 24, 2011 19:46:39 GMT -6
Miriam: Thanks for all your inputs. I will follow your suggestion and get a oximeter. My daughter has been on orapred/prednisolone for the past 6 years. Only once did the doctors try another medication, and she had a massive bleed within 2 weeks, and we almost lost her. I believe that was because they withdrew her abruptly from the steroid. I am wondering if they had gradually weaned her while introducing the other medicine which apparently worked for other kids. I cannot remember the name. The steroids caused her to have cataracts in both eyes already, plus bone problems. She also has the height of a 3 or 4 year old. I would give anything to see her healed from this disease and off the steroids.
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Post by riccardo on Feb 25, 2011 15:26:10 GMT -6
Dear friends, for our daughter's violent episodes of stress seem to trigger the disease, but bleeding there have never been violent, but severely decreases the saturation. He is currently 'under treatment with cortisone and it seems, unfortunately, the only treatment available. Another problem, and 'the arrival of bad weather, we must always be careful not to make you sick. We are monitored very good hospital in Turin, but we have heard various opinions in various Italian regions and all doctors agree on the same treatment, I understand that for you is the same thing. We hope the keep in touch can be used to better understand the disease. Greetings to all Riccardo
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Post by cooper on Feb 25, 2011 17:44:17 GMT -6
Hi Miraclemom, just in response to your statements about your daughter and steroids, my son hasn't been on steroids for ages but when he was in ICU for acute bleeds he had pulses of IV methylpred. He ballooned 6kg overnight and had huge fluid retention. That was the last time he had steroids and was quite some time ago but they thought that because he had steroids previously when they took him off his body couldn't deal with stress which in turn caused another bleed.
Sorry, I know this is long winded but they weened him of the steroids over about 8 weeks and then performed a Synacthen test. The theory is because after long term steroid use sometimes the body stops making adrenalin (because it is getting it artificially from the steroids and doesn't need to make its own) that when the steroids are taken away they body just can't make adrenalin any more and therefore when there is stress the body can't produce anything to counteract that. It was a small injection and then a blood test (nothing to bad) and if they fail the test then they would need maintenance steroid for life. Worse than nothing but better than massive doses.
Sorry, you may already know this but if not, it might be worth looking into when you next try to ween. I think to do the test they need to be steroid free for about 4 weeks so the extreemly slow weening is super important.
Hope this helps, Cooper
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Post by miraclemom on Feb 25, 2011 20:42:40 GMT -6
Cooper, I really appreciate your input. I did read that the body may not produce adrenalin after longterm steroids. I mentioned it to the doctor after her massive bleed, and he then agreed. The only other drug they tried was hydroxychloroquine. However, they switched from prednisolone to hydroxychloroquine which did not work for her. Therefore they switched her right back to prednisolone. I never heard about the test you mentioned. From the time she was diagnosed, we were told by the doctors that she would have to use steroids the rest of her life. I printed whatever information I found, but the were not willing to do anything else. However, we recently switched her to a new pulmonary specialist who seem interested in finding the right treatment. In fact he said he is starting from scratch and doing all the test over. He is also avidly consulting with other doctors, so I will mention the test to him. Thanks again.
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Post by cathrb on Feb 26, 2011 5:20:49 GMT -6
Hi There,
Just found your site...I was diagnosed with IPH at age 3. I am now 35. I have been for all practicality symptom free for years. I was treated at Childrens Hospital in Chicago. I know my doctor there at the time had more patients with this disease and I remember hearing that he had the most patients diagnosed with this in the country. I was treated with Prednisone and Immuran for years....I was VERY slowly weaned off these drugs til something like age 13. My mother also had found a medical journal article that correlated this illlness potentially to a milk allergy. So I went on a milk free diet. It really helped and I would bleed in my lungs when I did eat something with milk. My doctor did find that I had milk proteins in my blood which I guess shouldn't be there. I am a mother to two healthy girls ages 6 and 3. I haven't had an episode in years, but this flu this year has been tough for me. I have been to my pulmonologist two times in the last few weeks as I have been coughing up a little blood in the morning for the last few days. It's a relatively new doc for me, so I'm still building my confidence in their ability to know anything about my illness, I really appreciate the new articles and information you have posted on here.
Will definitely be following.
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Post by miriam on Mar 2, 2011 18:55:32 GMT -6
Dear Miraclemom,
I think the antioxidant that you are referring to is acetylcysteine. There was a series of articles / letters in the New England Journal of Medicine about hemosiderosis a few years back. My daughter's on it orally- not sure if it's helped but as it's so easily tolerated we're keeping it going.
I agree entirely with Cooper - it's important to wean the steroids really slowly and that another immunosuppressant is really important. My daughter was on azathioprine but it was stopped when she went on IV cyclophosphamide. She was on it IV for almost 8 months. It was stopped because it's not continued indefinitely IV due to possible toxicity. Interestingly it seems to be better tolerated orally. She has been on it since Dec 09.
Regards,
Miriam
Regards,
Miriam
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evi
New Member
Posts: 10
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Post by evi on Mar 3, 2011 13:30:17 GMT -6
Hi there,
to avoid the side effects of prednisolone, we give our son every other day prednisolone (0.5 mg / kg) and have been doing this for about 2 years. The effect seems to be the same. Thus, the adrenal gland to produce corticosteroid remains themselves. Last summer we put out the therapy, the weaning took place gradually within 2 - 3 weeks and was straightforward.
Regards,
Evi and Hubert
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