fatigue and headaches. Childhood ET related or not?

My daughter is almost 9yrs old, she was diagnosed at 4 with ET Jak+.  She's had an okay few years since diagnoses, she suffers with migraine which can be debilitating. We managed to get them under control with medication.  She attends her Hematologist  every 3 months for bloods, her platelets are staying 700-800 with out any medication.

Her general health is okay, she picks up the usual viruses and infections in school. Over the past six months or so i have really noticed a change in her energy levels. She gets tired very easily, she is getting headaches 2-4 times a week and has been complaining with pains in her legs.

Her Haem doesnt think its ET related! My husband keeps saying she has 'shin splints' because he did as a child, in the back of my head im thinking maybe bone pain.

I dont know what to do, all the info online say these are symptoms of ET but according to the Haem they are not necessarily symptoms of childhood ET.  I feel at my wits end as a mother, everybody keeps telling me she is 'fine'.  Yet i feel she is not, it was mothers instinct that got her diagnosed in the first place and i feel something is not right.  She has had 2 bmb since diagnosed,  it confirmed her diagnoses but also showed she had no disease progression or scaring. She is due another one this summer, im terrified the results will show disease progression.

Does anyone out there with a child/young person with ET or PV have these symptoms?

6 Replies

  • Hi. Sorry to hear your daughter is suffering with these symptoms. Yes, they could well be related to ET. My daughter is 11 and she will be having further blood tests next week, including jAK 2, to see if she might have ET. I have PV, although diagnosed initially with ET 3 years ago. 

    Unfortunately the symptoms could also be related to anything else too! I would describe my daughter as prone to headaches and she also mentions the odd leg pain too, but some children get more headaches than others, and also leg pain can be related to growing. So hard to say really. My local hospital werent interested in doing any further checks on my daughter because they said she didn't have any symptoms, even though platelets are out of normal range. Considering I had symptoms for 10 years and no one thought to question it, I have taken it upon myself to take it further now for my daughter rather than sit back and wait. 

    I hope you get some answers.

  • Hi Kentucky rain,

    I often think about you and your daughter since meeting you at the London MPD day 2 years ago.  I'm so sorry to hear of your concerns.  I can't offer you any advice but I just wanted you to know I am thinking of you and hope you get some help for your daughter soon.  We all know Prof Claire Harrison is the expert would it be possible for you to get to see her?  Expensive I know given that you are in Ireland, but just one appointment may be useful. There was also an Irish speaker at the forum, I'm sorry I can't remember her name, Mary someone, could you get to see her?

    I'm so sorry I can't offer more help, it must be so stressful for you.  We are all coping with this horrible thing and you have to watch your dear young daughter go through it.

    I hope you get some advice from someone.  Please let us know how you get on.

    Much love

    Judy xx

  • Hi there. Hope my reply helps in some way. Here's my (brief as possible) story.

    I was diagnosed with PV/ET (Haem says there is a crossover) with Jak2+ in Aug 2013. I'm a great believer in 'nature'. To my Haem's suprise, I refused treatment for the first few months (apart from Aspirin). I changed my diet, added exercise and saw a Medical Herbalist. My counts went down by themselves. I have proof and witnesses!  When the diet lapsed over Christmas and I got stressed, the counts went up!  I have since had the occasional venesection and seen my Haem every 3 months. She now thinks what I'm doing is having some effect. I'm 54 and have no symptoms apart from itchy legs in the morning (stress related) and can only bathe at night as itchiness is bad in the mornings for some reason! I am not tired but I pay special attention to good sleep.

    I've cut out all processed food at home. My diet is predominately vegetables, some good quality meat and fish and dairy. Less sugar, more water. Struggling with cutting down coffee. Dark chocolate allowed. Some red wine. I'm not so strict when I go out. I walk and cycle everywhere.

    On the advice of a Medical Herbalist I take: Curcumin (most potent part of Tumeric) My Haem knows papers written on this. Olive Leaf, Hawthorn, Elderberry. Vit D3, Cod liver oil, acidophilus, Slippery Elm (last 2 for gut health).  

    There is no 'proof' as there is only one of me and no 'control'. I'm OK for now. I have felt empowered as a patient. Hope this helps in some way for you or anybody else.

  • All sounds so very positive and do congratulate you on finding such a healthy diet and so many excellent vitamins, etc. Really inspired me! Best wishes, Tinkerbell 13 

  • Befor I was diagnosed with ET I had terrible migraine headaches, wants I started on asprin it disappeared,

    I am an adult so don't no about medication for children.

    I have had ET 14 years been on asprin 75 mg. & agidlide 

  • My Daughter is 16 and has just been given a diagnosis of "probable" ET as she is Jak 2 negative (as I understand it, if she was Jak2 positive it would be "definite" ET). She was suffering from debilitating headaches but once they started her on aspirin they seemed to have improved somewhat. I don't know what the protocol is for aspirin use in children, I know there is a risk of Reyes syndrome in under 16s.  She also gets a lot of leg pain which I asked the Consultant about, she told us that it was nothing to do with the ET.  When I researched it online it says that leg pain is a symptom.  It has been quite a bumpy ride to get to where we are, she has had this since she was born and although her blood results from 6 weeks old and onwards showed her platelet count was high no-one actually told us or did anything about it until last year when she was 15!!!  I believe that it is very rare for children to have an MPN and so it's really difficult to find specific information :( Not sure this will be of any help to you x

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