Daughter 16 just diagnose

[sue100]

Can anyone help?  My Daughter us 16 and has just been diagnosed with ET.  She is now taking aspirin daily which seems to be helping with her headaches.  She gets a lot of leg pain and is always very fatigued.  The Consultant dismissed these problems and said they are not part of the condition and I'm very confused.  She also seems to have a near constant  high temperature.  No obvious signs of anything ie cold or sore throat but her temp spikes and she is constantly hot. If anyone can shed any light on this I'd be very grateful x

[rubyrubyruby]

 I am sorry to hear about your daughter, I understand some of what you are feeling as I am currently awaiting blood test results for my 11 year old daughter as she has above normal platelets! I was diagnosed with ET 4 years ago at age of 37, although it is has now changed to PV. 

I would suggest you look for a consultant who understands more about MPN's! The symptoms you describe are exactly what I, and many of us with an MPN, suffer from. It is really important that your daughters symptoms are taken seriously , and anyone who knows the condition, knows that these are the textbook descriptions of symptoms. I don't know how far from London you are, but if you are able to travel to Guys Hospital I would recommend you try to see Professor Clare Harrison. I moved to her after my consultant in my nearest hospital couldn't really answer my questions and I didn't feel very supported by what was said.

[sue100 in reply to rubyrubyruby]

Hi Rubyrubyruby,  thank you so much for your reply.  It's so difficult as a mum.  I need to know I am doing everything I can for her.  I completely understand that the condition is rare in children and there is so much to understand.  I will try and find out if we can see Prof Harrison as we are desperate to find out all we can and to try and understand the condition. Thank you x

[katiewalsh]

I agree with Ruby. Get an appointment ASAP with a specialist. That way you can be sure of the diagnosis and the necessary and appropriate medications. I'm very sorry for both you and your daughter, it's very difficult. But you've come to the right place by being on this forum. People are knowledgable and very supportive. Maybe Maz can give you names of specialists closest to you. Good luck.  Katie

[sue100 in reply to katiewalsh]

Thank you Katie x

[kentuckyrain]

hiya, i'm probably no help to you. Just wanted to say my daughter suffers from fatigue and leg pains too. Her Haem says its not connected, i know it is and find it very frustrating! she doesnt suffer with the high temp's but she is always 'hot', never feels the cold. Its so hard when its a child as there is no info out there to help us!

[sue100 in reply to kentuckyrain]

Hi Kentuckyrain, I replied to one of your posts yesterday.  It's so frustrating, could you get to London too?  It seems the most sensible option to me! x

[Mazcd Partner MPNVoice]

Hi Sue, yes we can help, welcome to our forum.  It does come as a shock when you are diagnosed so I can fully understand how you and your daughter are feeling.  The symptoms you are describing are experienced by many people with ET, and PV as well. If you would like me to send you an information booklet on ET and aspirin then please email me at [e-mail] with your name and address.  One study carried out asked 709 patients about their symptoms, 72% had fatigue, 40% night sweats, 40% bone pain, 40% itching, 10% fevers, 10% spleen pain and 8% undesired weight loss.  Best wishes Maz 

[sue100 in reply to Mazcd]

Thank you for your reply Maz - I'd like to get the information booklets you have mentioned so I will email you shortly. It is so nice to be in touch with people who understand xx

[Rochyne]

I'm 24 and was diagnosed with et a few years ago. The fatigue is very much part of it. One thing that helps me (strangely enough) is a good amount of exercise, it seems to keep everything kind of tick over right.  But , and this is the hardest bit, she can't be too hard on herself if she can't do something because of tiredness.  I'm still struggling with this one. 

I also go to an acupuncturist for the headaches and fatigue and that's helped me lots. 

Do you go to a specialist or a regular gp? 

Hope things get easier. 

Rochyne 

[sue100]

Hi Rochyne, thank you for your reply.  It must be hard to get a good balance.  We have a Consultant which we won't see again until August but in the meantime we have a good GP.  She is really great with us but it seems that as it is an uncommon problem no-one really knows a lot about it.  I'm sorry you are suffering, hopefully research will bring some new and exciting developments very soon xxx

[Florence-Smith]

Hello  

I'm 20 years old and now have PV, but was first diagnosed with ET when I was 18 years old. 

My main symptoms are also extreme fatigue and also leg pains which have been ongoing for the last two years, plus extreme varying degrees of body temperature (whether I be freezing cold or boiling hot) and I would say they are down to my condition. Like everyone else I would say try and get an appointment with a specialist as in my experience they are a lot less dismissive. 

As well it is very rare to find young people with any sort of MPN, so if you or your daughter have any sorts of questions/worries or simply wish to just find out more about young people with this condition, please get in touch and I will be happy to help in any way I can. 

Good luck and best wishes, 

Flo 

[sue100 in reply to Florence-Smith]

Hi Flo,  thank you for your post.  I'm sorry to hear that you are also suffering the same symptoms. Thank you for your kind offer of support, I will let my Daughter know, she has been so much happier since Maz sent us the booklets as there were so many answers to our questions.

We are going try and get an appointment with a specialist as everyone seems to be saying it is so much more helpful.

Thank you again, take care xx