On Monday, the Hemo was concerned about Kailey's nosebleeds. We had to go to the pedi's office to get an immediate result on platelet count. Thankfully it was 101. However the doctor is submitting the paperwork to insurance to have her approved for home health care if she should ever need IVIG again. Is this common practice?
Also we have to go to the ENT Thursday to have the left nostril cautherized. Not looking forward to that again. Was going to wait till school got out to make that appt but Tuesday she woke me up with a major bloody nose. It was everywhere. She got in the shower after it stopped and said "I look like I died". Lol
I am answering as it seems no one else has yet which I think supports what I thought that home health care doesn't seem to "fit" with IVIG therapy. I am not sure where you live but fie the infusion itself it would be pretty difficult to do in a home environment and there aren't many medical needs before/after that need home care. Perhaps it is outpatient care? Others may correct me if I am wrong though!
Hope the cautery goes well! The nosebleeds are rough! I have had normal platelets since September now and every time I get a nose bleed still I am sure the ITP is back! Hopefully cautery will help minimize them for your daughter!
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I've been on this Forum for many years, and I can only remember one person who had IVIG at her home. It is not common practice, but I guess it can be done. I'm not sure that I would feel safe doing it out of a hospital setting, especially the first time. Reactions can occur.
Thanks y'all. It just seemed really weird to me that home health care would even be considered for such a treatment. She had IVIg in the hospital in Feb with no reactions.
As far as the nose bleeds are concerned I am just frustrated. Last year in July her right side was cautherized twice and we had not had any problems till after the IVIg treatment was finished. Her left side bleed a little. Friday after the cauthery of the left side her right side bleed Friday.
For right now we don't want to do anymore cautherization. It just seems too much...
I have met one person who had IVIG at regular intervals, not for ITP, but for a different disorder. He had home-based infusion care by nurses who stayed for the duration of the infusion. (He also had a port because he had the infusions on a scheduled basis.) The problem, however, is not always during the infusion, but after. My child always spent a night in the hospital for the infusion, which was always treated as an emergency admission (twice for low counts and once for nonstop nosebleed with low count). The infusion usually started late afternoon or early evening, and was finished shortly after midnight, which allowed some hours of observation before discharge late morning. She was also on a monitor for the duration. (I learned to disconnect and reconnect the leads on her for the frequent pee trips.) I didn't like that she needed IVIG, but I liked the way it was handled, and I felt she was in the safest setting. She only had IVIG as a "rescue" treatment. I'm not sure there's any point to regular scheduled IVIG with ITP. I don't think I would have opted for home infusions unless that was the only way to get the insurance to assist. (Even when you want the best care for your child, you have to consider how to get it covered. The "sticker price" of a night in the hospital with IVIG was $20,000 seven years ago. I'm sure it's no cheaper now.)
Believe me I am not a fan of the idea of them doing IVIg at home for rescue. I have 4 people, a dog, and a cat in 900 square feet. My house is not the cleanest and it is cluttered. I guess back in the 50s they didn't need closets. Lol
I still haven't gotten the bill for the IVIg from insurance. Not looking forward to that co-payment.
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