New Diagnosis

[whatthewhat]

Hey Trazz,

I'm the mom of a pediatric-onset Wegeners patient, and I know a couple ped WG kids who are seen in Denver. I will private message you, so check your inbox. And to quickly answer your question: pulmonary hemorrhaging is fairly common in pediatric Wegs. Kids do heal remarkably well, but the disease does move faster and flare more easily in general in the peds world also.

[SophiasMom]

Hi Teri,
So sorry to read that your daughter is dealing with this. Yes, both of my lungs filled with blood and I was intubated twice during my 31 day hospital stay. I was dx'd in Aug 16. I also received plasmapharesis, six units of blood and four of plasma. I was on high doses of prednisone and Ritiximab. I left the hospital in a wheelchair due to the muscle atrophy that happens when you are in bed for so long. I certainly hope your daughter is doing better now and off the vent. Please reply if you have any more questions about the process! Hugs to you Momma.

My name is Teri Raspanti. My family lives near Denver, Colorado. My 14 year old daughter was admitted to Children's Hospital on 3/16/17 with what we thought was pneumonia. For this being a rare disease and even more rare in children, the doctors diagnosed it fairly quickly. She developed pulmonary hemorrhage and was intubated. She was started on high dose IV steroids and Rituximab. She's had 2 rounds of 3 day plasmapheresis and her first Cytoxan. Those treatments and meds were not able to control the inflammation and she was put on VV ECMO to rest her lungs. Today is 3 weeks since she was admitted. We are finally seeing slow progress. We are hoping to wean her form the ventilator soon. I still can't believe all this is happening! Has anyone had a pulmonary hemorrhage?[/QUOTE]

[trazz02]

Hi Teri,
So sorry to read that your daughter is dealing with this. Yes, both of my lungs filled with blood and I was intubated twice during my 31 day hospital stay. I was dx'd in Aug 16. I also received plasmapharesis, six units of blood and four of plasma. I was on high doses of prednisone and Ritiximab. I left the hospital in a wheelchair due to the muscle atrophy that happens when you are in bed for so long. I certainly hope your daughter is doing better now and off the vent. Please reply if you have any more questions about the process! Hugs to you Momma.

My name is Teri Raspanti. My family lives near Denver, Colorado. My 14 year old daughter was admitted to Children's Hospital on 3/16/17 with what we thought was pneumonia. For this being a rare disease and even more rare in children, the doctors diagnosed it fairly quickly. She developed pulmonary hemorrhage and was intubated. She was started on high dose IV steroids and Rituximab. She's had 2 rounds of 3 day plasmapheresis and her first Cytoxan. Those treatments and meds were not able to control the inflammation and she was put on VV ECMO to rest her lungs. Today is 3 weeks since she was admitted. We are finally seeing slow progress. We are hoping to wean her form the ventilator soon. I still can't believe all this is happening! Has anyone had a pulmonary hemorrhage?

[/QUOTE

Thank you for sharing. How are you feeling now? Are you still taking steroids? I'm worried about what they do to a 14 year old girl. Sara is off the vent and making good progress. She's been here for a month. Definitely has muscle atrophy. She's finally able to eat puree meals.

[Alysia]

Thanks God that Sara is off the vent and started to eat. Sending more prayers ❤ thank you for the update.

[SophiasMom]

Hi Teri, I am doing really well now. Thanks for asking. How is your daughter this week? My heart goes out to you...hospitals are brutal and so hard on the family. I am still on Prednisone. I got down to 2.5 but it seems like we tapered too fast. (Probably a result of my constant and consistent whining about it to my rheumatologist) I hated the stuff and still do. But, have learned that I have to live with the side effects to get through this first year. Keep us updated! I think this forum will be a lifesaver for both of us. Hang in there. Hugs.