Child blood clotting conditions

[Krg2k11]

Hello, going through a very stressful time right now and was needing a bit of advice. My DD has been poorly on and off for a few months now and after some strange brusing appeared and a brisk trip to doctors for some bloods, they have found that her blood is not clotting effectively. Our local hospital is still doing test to find out why but were still unsure of what's causing it. Thankfully they've ruled out my major worry but im still very worried about what it could be? Had anyones child ever had this happen and found out what caused it? Just being a worried mummy and looking for a little bit of solid ground thank you x

We're just giving this a bump for you, OP. We're so sorry to hear that you're going through a difficult time - we hope someone is able to come and offer some advice and support soon.

Hello

Have they tested for Von Willenbrands ? In our experience the generalist practitioners are not as aware of this but once diagnosed they are fantastic. Some general tests won't show it there are specific ones for VW

Oh it wouldn't make you poorly (unless maybe you became anaemic)

Ive had a little research and this popped up a couple of times, may give it a mention at her doctors appointment next week. Forgot to mention DD is 4 and never had an issue before if thats any help. Shes not unwell just seems to get every bug and cold im existence very easily x

Get it ruled out - its is inherited so if you or her dad have any history of bleeding or bruising it's more likely

Ds used to get sent to the hospital regularly from 10 weeks old with strange bruise like rashes (and more!). They did throw up some abnormalities in blood clotting, but normally put down to a "viral rash". He's11yo now and rarely gets them and I don't worry unless it's extensive.

Thanks everyone! Just horrible not knowing where you stand no one in our families have had any issues with blood related conditions that we know off but you never know hoping it is something as simple as viral x

I have VwB's so I know its possible for females to have clotting disorders. VwB's can present in different ways depnding on if you have type1, type2, type 3 or acquired [i.e from lupus or as a result of a drug used to treat another condition affected the VwB's factor].

It is worth having any unexplained bruising checked out. If it does turn out to be a clotting disorder the Heamophilla Society offer lots of support and infomration on management and living with to complement the care you get from your heamotology team.

Hello triballeader, thanks for the advice can i just ask how it affects you? Ive never really heard of these clotting disorders and most of the information i pull from Google talks more about what it is, not how it impacts a person life . Thanks x

Are they sure they’re bruises and not varicose veins? Venous insufficiency can be an autoimmune condition - I know many kids in my family who have gotten varicose veins at similar ages. Clotting disorders can often make them worse

They look like regular bruises to me, nothings been mentioned about varicose veins. But at this point could be anything so ill suggest to doctors anyway, thank you

@Krg2k11 as I posted I have VW and for us:

Easy bruising from things like holding a cardboard box against my hip
Unexplained small bruising in areas like shins upper thigh arms
Bad bruises which for others would be less dramatic
Lengthy bleeding for nose bleeds/periods/cuts
Some dramatic bleeding following operations

In my case the initial clues :
Wider family history of some newborn boys bleeding out of umblicus [pre SCBU's sadly some died]
I used to have the occasional spectacular nosebleeds at school.
I heamoraghed after having four teeth removed to make room for my adult teeth.
Splitting my lip - not badly but it would not stop.
Always had bruises. Sometimes the bruises looked worse than others. Often in strange places to get bruises. What should leave a small bruise on someone else leaves me looking like I have been beaten up. Sometinmes I bruise without knowing why but that often goes hand in hand with nose bleeds.
Periods to the point I was getting through a pack of nighttime pads per day.
Cuts, even small paper-nicks, that could take 10 mins or more to stop bleeding.
Had an APH followed by a life threatening PPH during a preterm emc/sec then another severe PPH after a VBAC. It was the head of ob's who was the consultant for my third who suspected it was VwB's
Most of the time I describe it as having a VwB's factor that likes extended tea-breaks before it begins to get up and act. Occasionally its on utter strike, sometimes it behaves like its near normal.
The most recent was after a trip to A&E when I had to have a cannula sited [got a fish bone wedge in my throat- ouch]. It behaved itself for the first 30 minutes of the cannula being removed so they let me head home. It was half way across the hospital car park I realised the wet feeling down my arm was not rain but blood. Boy did I get seen ever so fast when I returned to A&E. Nurses did a brill pressure bandage.
When I first diaognosed I was scared to open my knife drawer to get a knife out. I did have to to give up contact sports. Nowadays I just reach for a decent first aid kit, I keep ice packs in the freezer for bruises and have tranexamic acid before any planned op's or dental work. The Heamophilla Society were very supportive in the initial days of getting used to having 'the label'. My VwBs is type 1 that just occasionally has some scary moments.

Gosh! Sounds like you've been through alot! Still waiting on results but i think they are testing for traits of hemophilia and vwd now. Bruising improved a little so hopefully start getting answers soon! Thanks everyone for your advice x