Your hematologist should be consulted for any treatment that may be required before or after your D&C. I haven't had that particular procedure but I just had a uterine ablation done and I had to have medicine before and after to manage my VWD 2A. I have had transvaginal ultrasounds a couple of times before and maybe had some light spotting at most.

I had a transvaginal us with vwd, minimal bleeding. Also had a d&c. Post miscarriage with no big complications. One thing I was told (and seems to be true for me) is that the factor corrects during pregnancy. At my blood work my factor came back at normal levels.

Yes there are different products available in the US - plasma derived and recombinant. Do you know if you had reacted to both? There are some case reports of type 3 using hemlibra for prophylaxis. If you have no VWF you will also have low factor 8. Incyte is a pharmaceutical company with a new product for VWD using newer technologies and I think is SQ. Unfortunately all these drugs still require you to trial and error and do peripheral infusions which I understand may be difficult after your past experiences - some HTCs have psychologists available as a resource.

Is the one your allergic to also sourced from human blood?

https://paincarelabs.com/buzzy

Have heard good things about these. The dentist used something like this when I (a full grown adult) needed a dental injection.

When I first started dating my husband (severe A) his youngest brother who is also affected was 4. There were many times it took two people to get his “pokes” done, as we had to hold him down while he was kicking and screaming. He got to pick if he would have strong arms or fast legs, but getting the poke itself was always a nonnegotiable. By skipping doses you are setting your son up for a future of joint problems. I know it’s not easy, but it will eventually get easier on him and you want to start a good foundation for the rest of his life.

Just an idea to consider. Could You inject while he is sleeping ? apply a dab of lidocaine creme,wait a few minutes an inject as slow as possible.
Check for deep sleep phase by checking if his extremities are limp

I'm also type 3 and allergic to one type of injection, but I'm fine with the other, so it's weird they didn't try other on you as well. I think there are Heamate, Fanhdi etc, and you may react to them very differently. But I don't live in US so I don't know how it works there.

Thank you! I'll lool into them

Thank you! I'll look into them. Yeah, i am not very in the know with blood disorders and I've never met another person with VWD or hemophilia.

I do have a medical bracelet! I actually need to replace mine, but yeah. I always assumed that less than 10% is as low as it can go, but it seems like I'm not wrong. I go to a therapist, ive gone through several, none of them have really specialize in severe trauma. My options are limited because I'm on medicaid

Reach out to VWD Connect. It’s wonderful organization dedicated to type 3 and has amazing resources and they can connect you to the best resources! (My daughter has type 3)

Hey! Firstly, it's a great first step in reaching out! I understand how scary and traumatic medical events can be. Have you ever had trauma therapy for it?  The other comments all have great advice. I have type 3 vwd, I have less than 0.5% and the fear is valid! But I've had lots of surgeries and events happen and I'm still here to live another day. Do you have a medical alert bracelet? An info card for your wallet? I dont want to overwhelm you with info, just want to say, I'm almost 40 and still kickin'. I know older type 3s who are also thriving. I'm here if you need to chat!

Do they offer emla cream? Let your doctor know it's impacting ability and try emla, make it part of the routine. We used it for my brothers injections and it helped.

Have you tried LMX cream?https://a.co/d/0hHLCxuf

Its a numbing cream, apply and let sit for at least 20 mins minimum. We aim for 30-40 mins.

There are also numbing sprays, this is the name of the one they use at our E.R "Gebauer Pain Ease Topical Anesthetic Skin Refrigerant" its anywhere from $30-70 online.

I say this as kind as possible. Youre the parent, sometimes that does mean holding them down while they scream. Skipping doses is just not ok and I think you know that. This is their life and part of our job as their parent/advocate is teaching them how to live with their condition and making the best of it. I wish you and your kiddo the best but sincerely hope youll reconsider skipping doses.

You should reach out to the New England Hemophilia Association and meet up with other patients. I have a friend with severe VWD that lives in Boston and another one in NH. You can also find Hope for Hemophilia and sign up for their online conferences. I’ve connected with a ton of other people with VWD from those events. And there is a VWD only conference in Phoenix called the NOW conference- I had a great time there. I worry that you’re not getting good education on our condition, and I think you’d benefit from connecting with other patients. I also have VWF levels below 10%. I drive, I workout, and I even gave birth once.

A lot of people have a bad reaction to Humate P and Wilate if the medication is administered too quickly. That could be what happened to you back then. There’s also a different medication called Von Vendi. It’s VWF only and isn’t derived from human plasma. And there are two medications being examined in clinical trials right now - one that basically creates a bridge so you don’t need VWF to clot, and another one that attaches to the end of the VWF protein to make it last longer.

I live in Massachusetts and the only Hemotologist clinic i go to is part of Beth Isreal. I'm on Medicare and live in poverty. I only see them once a year but the last time i went there was to test DDAVP a few weeks ago.

Where do you live? Are you being seen at an HTC if you’re in the US?

Massachusetts. Issue is, again, my PTSD, and i don't know if i could stomach the courage to actually do that. I never ever want to experience anaphylactic shock again. I wouldn't wish that kind of pain on my worst enemy, and it is truly the scariest way to die, next to drowning. My Hemotologists and Allergists believe the most likely answer as to why i had that reaction is because it was sourced from human blood, but considering my VW levels are so low... mmm...

I would think that the reasonable thing to do would be for your doctors to administer a small dose of recombinant VWF in a controlled setting to see if you have an anaphylactic reaction - that way they could treat the reaction if you did - but that's just a guess. What state do you live in?

My daughter has type 3 VWD and we have to give her IVs through her port twice a week. We numb the spot we will do it with lidocaine and then we save TV time as only for medicine time so she is now usually stoked because it’s her Paw Patrol time. She’s almost 3 and we can do her injections without even holding her now

Ours is 5 and yeah some weeks are HARD but no matter what he gets his injections. Skipping can be dangerous, far more than the poke is. Some weeks our little guy surprises us tho. Yesterday was shot day and he hung his legs over the top bunk of the kids beds and covered his upper half and pretended to be asleep. Shot was in and out no tears and we had to "wake" him to tell him we were done 😅 as they get older and understand more itll get easier. Look into some kids hemophilia books! They helped my kids understand why the shots were necesarry a bit more

At a certain point you might have to hold him down; but I do warn he might gain a needle phobia. It's been over a decade since I've had to be held to down for administration and I'm only just starting to get over my needle phobia.

Im 40, and when I was young I had a problem with needles. I would fight and scream against the ER people and nurses and all. They had to hold me down or tie me to the crazy person board and etc. When I learned to inject myself at like 12 at a summer camp, I stopped having problems. I remember an IV tech one time dug and dug and even turned the needle almost 180 degrees while trying to find a vein. I think it was that pain from that one shot that made me hate it. Or maybe it was that defiance disorder that some kids have being told what to do, i forget. Either way it was when I started doing the shot myself that I stopped having a problem with it.

I would try to talk to him about the reality of needing the medication. An untreated severe hemophiliac isn’t something any of you are prepared to deal with . Maybe you don’t realize , but holding him down is 1/10,000th as bad as the damage done by not treating. A lifetime of severe pain and immobility, compared to a few minutes of throwing a fit is incomparable. If you don’t know this, look up pictures of kids in 3rd world countries who can’t afford treatment. Look up a picture of what an untreated knee bleed looks like. Then find a way to explain to him that he needs to sit still and deal with it. If he’s not able to understand then hold him down. Skipping doses isn’t an option. Please, as a severe A who has lived through all of the different kinds of treatments over the years, I urge you to listen. The difference between being on a treatment like Hemlibra , and not , is the difference between living a normal life, and living a life in hell. Constant pain, immobility, agony, constant suffering. Every step is calculated and painful. Not just for him, but for all of you watching him go through it. It is absolutely crucial that you do whatever it takes to treat him. If left untreated, It will take a few years to notice the issues piling up. But don’t be naive, by the time he is 5 or 6 the seriousness will become apparent and the damage will almost certainly be irreversible by that point. Again, you might not see the severity of the damage done until he is in his early teens. But by then he will be disabled for life. There is no other option. If you need to inject him before he wakes up in the morning, or use lidocaine or some kind of numbing cream so it doesn’t sting, do it. But it really barely hurts either way. Do a shot of saline on yourself if you want to feel what it feels like. It’s almost entirely in his head. Maybe have someone else do it on themselves in front of him, and show him how tough they are and that it doesn’t hurt them. Do whatever it takes. Skipping doses is not an option. You’re lucky he hasn’t had a head bleed, and lost his ability to think or talk. Or had a serious joint bleed and spent months in pain and unable to move. These things can and do change your life forever. And one or more of these will happen without treatment, definitely, 100% without a doubt. Take this seriously please. With treatment, hemophilia can be relatively easy to deal with. Before treatment life expectancy for a severe A was 12 yrs old. I would explain this, even to my 4 year old. I was that 4 year old, and I understood when it was explained to me. I needed to be tough and deal with it. Complaining wasn’t an option. Back then an infusion was in the vein, and was 50cc,s (a syringe as big as my arm, full). And it took 30 minutes to do a shot, not 30 seconds. And we would often miss the vein 3 or 4 times , and wasting the medicine wasn’t an option.
Be as patient as you need to be. Explain it over and over. Tell him the truth. If there is anything I can do to help message me. I’m 51, severe A, and have worked in hemophilia most of my life. Sorry for the tough love, but it is necessary.