Hello there my name is ashley and I’m new to the group. My son has been diagnosed with vwd. At his first appointment on Wednesday it was a fair bit to take in. They said he is borderline between type 1 and 2 so just waiting on the results of the repeated test to confirm. Is it common to be between two types? Also they said they will try him on des oppression to see how he reacts. What does that mean? Are there side effects? sorry for all the questions. Just wish I’d asked more on the day.
I can’t spell but the drug is ddavp should be no side affects and I am listed as a type 3 that occasionally bleeds like a type 1 so yah I think it is fairly normal for them to have some confusion
Yes IV DDAVP quite commonly causes headaches and facial flushing. The test is being performed in hospital so he can be monitored and just note a limit on fluid intake is necessary during treatment, it's not uncommon for there to be confusion initially from tests, but they should know what type he is before they do the DDAVP test in my opinion. Where are you?
Helen, Leeds, UK
With proper blood testing, they should be able to determine what type he is. I went to a local hematologist, but felt I wasn't getting enough answers. I then went to a Hematology Treatment Center...they determined I was type 2A. The DDAVP challenge is simple..Actually if your son is responsive to the DDAVP (seen often in a nasal spray called Stimate), that's wonderful. It is a disease that he can have a normal life with just few adjustments. It's great that you found the web site...there's lots of support here, especially for families with children recently diagnosed.
Thank you so much for your replies. We are at the paediatrics next Wednesday so the results should hopefully be back then I’m hoping. We went to haematology last week and that was after them cancelling the appointment last month only an hour before we were meant to be there. So when we got there they said that his name was down on their list but they weren’t going to see him because he was under 16. So feeling everything is up in the air at the mo x
Hi. Just to throw a wrench into to things, a Stimate challenge sometimes gives funky results. I have 1 kid who showed a good result to it in bloodwork but in real life not so much. I also have another one who showed NO result in bloodwork, but in real life it works great. Just make sure that if you get a Rx for Stimate, you get Stimate and not demopression. Stimate has no generic and the other stuff is for bedwetting.
Thank you. We’ve been told he had type 2. Hes had his ddavp test and just waiting for results but they dont know if it will work and said if not they will look into other options? And he is being referred to physio as she said she had concerns about certain joints? Is that normal?
I have Type 2A VWD and have failed 2 DDAVP challenges. I do take Amicar (oral drug) for simple bleeding issues an dental work, but for anything more major, including dental extractions, surgery, etc. I use IV Humate P. This site has been invaluable in helping me learn to manage my own disease. I now have a few doses of Humate P at home, and both my husband and I have learned to start an IV and administer the drug. I carry the drug for any travel where I won't be near a major medical center. You're lucky to find this site...don't be shy about asking questions, letting us all know how you're doing.
Thank you. He recieved his medical card today which says type 2 but doesnt say what type of 2? I asked them and they said they would only be able to find out through genetic tests so ive messaged his father who also has vwd and he wont co operate he isnt in his life and wont help. So how will we find out? Are there other ways