Hi there. My son who has type 2 vwd just recently diagnosed has been complaining of a sore ankle for months now on and off and now is complaining of shoulder pain too. He says sometimes it’s unbearable and then other days nothing. And he has also been very tired to the point today that around his eyes were black! The peadiatrics have not got back to me about about a physio looking at him because they said they thought his ankle needed looking at when he was there for his ddavp test. That was 3 weeks ago and still haven’t had the results of that. I’ve tried calling and leaving messages but not heard back. What I’m wondering is, could there be a link to him feeling so rotten and tired and sore to his vwd? I’m so clueless.
Dear Ashmac,
So sorry that this was not noticed and featured sooner for you. The mods are all volunteer patients, and it seems we all invariably fall ill at the same time.
I do not have VW, am just a helping hand stretched across the various groups, but featured and sent out emails to the group for their expert replies.
I hope that they can be of help, as well as your Doctors.
Sending my very best to you and your son,
SK
From my experience, feeling always tired, sore, sleepy, fatigue, weak, etc…all those symptoms are probably because his iron or B12 are low. I have type 1. Most of the time, I feel this way. About your son eyes being black. I never heard of VWD causing that. But everyone is different. It can be VWD or something else. If the doctor is not responding just show up and explain to them that no one is calling you back. I have done that in the past when I called my doctor to schedule an appt due to excessively bleeding for three months.
VWB can have cause fatigue that becomes unbearable. Once he adaps to feeling tired all of the time, it will get easier. When my bleeding is controlled and I take all my iron and b12 I can usually participate in normal daily activities without my fatigue weighing me down too much. However, his fatigue level will most likely always be hire than the average person. As for the doctors- say you’re returning a phone call for one of them. This usually gets them to pickup.
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Hi I would think he was having a bleed in his ankle that happens to.my son but he is vwd type 3 I infuse him every other day but if he complains of pain in ankle knees etc I infuse . Sounds like he is not on any meds for vwd... in my son fatigue is an issue and like the others have stated I do give him extra iron.
Hi,
I just saw Maya's post, and that is what I was going to write you about. It sounds like joint bleeds to me, probably in his ankle and shoulder and you need to see a doctor asap, I like the idea of just showing up at the doctor's office. If they won't see you then, time to find a new doctor. Also, make sure you are seeing a hematologist, and not a general practitioner. I'm so sorry you are going through this, I know how it feels. I have a daughter with more serious VWD. Mine and my other daughter's is not as bad, but the shock of finding out and feeling so helpless is a very familiar feeling. :(
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Yes, VWD can make you tired due to related anemia and low B12. Yes, your eyes can look black for the same reason (even more pronounced if you are Caucasian because you actually look paler making the darkness around your eyes look even worse). Like AStrongWarrior I, too, have had to just show up at the haemotologist’s office when things weren’t moving fast enough. When I was young I had to give up sports that involved getting hit or hitting anything like a soccer ball because the repetitive force on my joints caused problems. I started competitive swimming but even then I got bruising on my forearms from hitting the water and petechia on my chest from diving into to pool. I would still keep your appointment with a physiotherapist/orthopedist and not assume the ankle pain is from the VWD. I don’t know how old your son is but there is a very common condition called tarsal coalition that may not present any symptoms of ankle pain until preadolescent years or during a growth spurt. 1/100 people are born with it, my niece included. She complained of ankle pain starting around 8 years old. I hope you get some answers and your son gets to feeling better soon.
If your son has type 2 VWD, DDAVP or Stimate is not indicated for his type of VWD. Type 2 means the VWD molecules in his blood are misformed....therefore, using Stimate or DDAVP to release more VWF molecules won't help your son at all. He should be evaluated at a hemophilia treatment center and then placed on a factor product.
If you have problems finding a hemophilia treatment center in your area, please feel free to e-mail me at findjill@aol.com. I was a VWD educator nationwide for ten years, and have lots of resources to help you. In the meantime, check out http://www.allaboutbleeding.com. You may find that information helpful.
Jill Williams a.k.a. "Bleeder Girl" :-)
Thank you so much for your replies. He had his blood sugar levels tested as 8 took him to the doctors and explained everything. But not his iron or b12?
I have since spoken to his pediatric nurse and she called to say that he did not respond to the ddavp. She said they would go back to hematology and discuss what to do next so we are still waiting to hear anything.
I feel quite anxious as the weeks go on and we still have nothing in place.
My son is 13 and his school have called me saying that they have noticed it is all having an affect on him even in school.
When you say factor. What does that kean and entail? X