Baby- High Platelets

Gosh - this must be a very worrying time for you all.
I would suggest the same as @Erica. Give PALS a ring and see what advice they can give. Remember, you are always entitled to a second opinion if that’s what you want.
Please keep us updated on how you get on x

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Hello. im back. so i booked a private paediatrician haematoĺogist to help check the results…and now we are more confused as she said

  1. the iron is actually only just outside normal range so not a cause for the high platelets
  2. As she was seeminly well on the last test and het the platelets had gone up, and given how long now since she first got covid and how long since the november sickness and diarreah she doesnt believe its really a reaction to anything (as she has ni symptoms of being ill).
  3. she wasnt keen to suggest anything as the cause which is why we are confused…because from what we googled if its not an infection, iron or any other illness then it really only leaves a blood disorder/ cancer.

She could see we were concerned by the total lack of explanation and suggested running some genetic tests to offer us reassurance if nothing else. she said the results will take 4 mo ths and we have to wait til after easter as she is going on holiday now. now i had thought the genetic tests would look for a mutation/Myeloproliferative neoplasms (MPN) type issue…but someone on a facebook Myeloproliferative neoplasms (MPN) forum has said no thats not the right test amd i need to ask for ‘extensive blood tests’…is this right. i feel a bit silly because i am now not understanding the tests.

we are also disappointed because no dr seems to agree. one will say her iron is low thats why and then the specialist is saying its barely even below normal limits.

we had the earlier paediatrician suggest kawasaki like disease but now 2 drs have totally dismissed that as she never had a fever.

she is being used a bit like a pin cushion onmy to keep seeing high platelets and no cause. what test do i need to ask for to start getting MPNs ruled in or out? We want some actual answers at this point and this round of tests to actually help us, nit leave things just unanswered again.

Any thoughts??

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Hi @LoisMum I am so sorry that you are even more confused and with no answers.
How is Lois doing herself?
I am sorry I certainly cannot help you medically, but the main things is that you both look after yourself and it must be horrible being left in limbo and not knowing.
Please do keep posting

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Hi @LoisMum.
I’m no sorry you still don’t have any answers. It must be very difficult. How is Lois? X

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Hello erica and nicola, thanks for the replies.

Lois herself is now quite happy and content. She has some eczema which comes and goes but only bothers her occasionally. She goes a bit random when tired which we are keeping an eye on…but yeah just a bit stumped by these mystery platelets. I dont like the not knowing and long delay. We seem to have ruled out most of the reactive causes so i guess i thought there would be a bit more urgency in ruling out /finding out the more serious things like potential blood disorders/cancers. some days are better than others for me in terms of how i feel about it but mostly id just like some certainty. i am really stuggling to find anyone in the same boat and with this kind of platelet count in a child.

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As long as Lois is happy and content @LoisMum that is the most important thing in life.
I really do appreciate that the not knowing and uncertainty is a horrible place to be for you.
Please do let us know if you find anything out.
In the meantime just enjoy your time with Lois.

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I’m glad Lois is good in herself. Are you back at work now?

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Hello thanks again for the replies. Yes i had to return to work in early feb as they were making redundancies so i got put into a new team and so i had to start back a little bit earlier than i thought so its been a bit difficult as i had been feeling guilty for returning while no cleaer on her health issues…but now they are dragging on i feel a bit less guilty because we are still in the dark. I did arrange with my husband we’d each take a day off work until we knew what was going on with her, to help minimise her time at nursery (to 3 days) so shed have a good amount of rest days and we also both get a special day with her and her sister each week while we navigate this uncertainty.

In a twist of luck i got the private drs letter today and somehow managed to get a last minute appointment to do the blood test so that is all done. She is due her 1yr vacciines next week and id been worried that might skew her results so im relieved we got in before it! But a little nervous as imnot sure if high platelets are a risk for vaccines or not… i cant get any answers about anything from anyone which is very frustrating. i feel like no one has ever come across high platelets before and dont know what to do with us. im also now a bit scared about the results. it seems kost will come back within a week and just 1 will take 4 mo nths. so now im fretting about what we might find out. i hope we get reassurance that nothing is wrong…but im also scared because if something is wrong it feels like no one is going to know anything about what to do. im quite an anxious person anyway and i hate when things are out of my control…like this is. shes so lovely i just want everything to be ok for her. i feel a bit clueless about what it will mean if they find something…id like to be more prepared but im just hitting dead ends. wish us luck!

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Oh @LoisMum glad to hear about you and your husbands work arrangements and also that Lois is at nursery 3 days a week, it also gives everyone a more balanced lifestyle.
You were also lucky to get her blood test done in good time.
Perhaps you might consider asking for the one year vaccinations to be delayed until you and Lois gets some answers.
Look after yourselves, wishing you loads of luck and please do keep posting.

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Hello. the saga continues … so i was expecting to get some of the results tomorrow as at the appointment last week they saidnit would take about 5 days. So iemailed the secretary for the private dr and…she is on study leave until he 18th! but worse than that she is not free for a call to discuss results until either the 3rd or 6th May (apparently she had said friday 6th May but uis date doesnt exist so im now also waiting on clarity…so that will be a month from us doing the test. i have not slept all week fretting and now i have weeks left to wait so feeling a bit glum.

The vaccine nurse suggested splitting the vaccinesnin two as a precaution and so that if there was an unexpected result wed more easily know which was behind it…so now we have to return for the second part of that on Monday…and then next friday the gp is kicking us out because we moved and we are 1 mile or so out of their catchment area and they are insisting i find another practice even though i asked to wait for these tests for some continuity of care…but they have said no. which i feel is quite harsh as not like ive asked for ages extra…just didnt want results getting lost or going to wrong place but seems they dont care. might it signal bad news that we have to wait so long? surely if all was well theyd have it by now and would be saying all ok tomorrow…not waiting a month for further results?
it will take us to about 1 year since she was hospitalised with covid? surely thats more than enough time to have figured out why her platelets are high?? i just dont get it.

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Oh @LoisMum the waiting, not knowing must be so hard
Yes, I had to move surgeries when we moved too.
Perhaps it might give you fresh eyes.
Please do keep us posted.
Be kind to yourselves.

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More waiting - we all know how tough that can be. Keep us updated :blush:

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