New Diagnosis

[trazz02]

Hello everyone!
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?

[mishb]

Hi Teri and welcome to the forum.

It saddens me to hear that your daughter has been diagnosed. I hate when the kids are involved :crying:

I'm sorry that I cannot help with your question, but I will pray for your daughter, so that the ventilator can be removed soon.

It will be a bit tough on her for a little while, but with the proper medication, and your support, she will be doing well very soon.

There are many members in here, who are parents of children diagnosed with WG, and I hope they come along shortly to give you some advice.

[drz]

Hello everyone!
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?

Did she cough up a lot of blood? Need transfusions for blood loss?
Several of us have had similar treatments for similar symptoms but recovery tends to be much quicker for the younger than us seniors.

[MikeG-2012]

I did, but mine was VERY MINOR. I was coughing up very small felcks of blood when I was first diagnosed. Doctors did tell me that I should be glad I didn't wait any longer.

Fortunately, I was only in the hospital for 10 days. Three weeks, WOW!

Give her our best and tell her that there is an entire on-line community thinking of her and we hope she starts feeling better soon!

[im so blessed]

My heart aches for your little girl! I was diagnosed at age 16, and i am now 32 and i have 2 children....they may tell you alot of scary stuff as they did me, but i will agree that the kiddos are better fighters for some reason. Hang in there, she can get better again! Make sure shes drinking lots of water while doing the cytoxan! something the dr really stressed to me and i didnt realize how important that was. Praying for you all!

[trazz02]

Thank you, Michelle, for the prayers! I definitely believe support from others who understand is so important!
I think tomorrow is the big day! Keeping our fingers crossed...she will be so happy to be extubated!
Tak care,
Teri

[trazz02]

She was coughing up blood and had a very low hemoglobin on admission. She's had several blood transfusions. I guess she does have age on her side! She's always been very healthy and athletic...
Thank you!
Teri

[trazz02]

Thanks, Mike! One day at a time...we're getting there!

[trazz02]

Ok, since I'm new at this---how do I reply directly to a person's response? I'm getting lost in the thread!
Teri

[Alysia]

Ok, since I'm new at this---how do I reply directly to a person's response? I'm getting lost in the thread!
Teri

You press on "reply with quote" on the right side of the bar under the post that you want to quote.

My heart is going out to you and your daughter. We know few kids who have being in similar situations and have recovered. I am praying for your daughter. Please update us.

[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.