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
- the iron is actually only just outside normal range so not a cause for the high platelets
- 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).
- 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 
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hello me again
and feeling very deflated.
How can i find out what the diagnostic process should be for Essential Thrombocytosis?
We had the ‘results’ call yesterday from pur private tests and it was totally unclear and disappointing.
She first suggested that it looked positive implying no Myeloproliferative neoplasms (MPN) mutstion. But she hen said not all tests were done as she didnt think our insurance would cover it.
This seemed odd because we had heretter listing the tests and sentnit to the insurance who had 100% written back to say they okayed all of them. This letter was forwarded to the dr!
So we tried asking which were not done and she would not give a clear answer.
She had obviously not expected us to question this
She then did a huge u turn and said it must be low iron as the cause despite a month ago her being so adament low iron could not cause platelets this high that she actually told us not to bother with it. Now she wantsbus to do it for 3 months and see if anything improves? i challenged this and she just laughed and said well we need to try.
I said and what happens if in 3 months nothi g has improved
Oh well then we do more testing
What tests?
More genetic tests
but what tests, oh to rule out anything rare but i dont think it will be that
But what is it?
Oh well shes mostly had high platelets when ill so i think its reactive.
But dr yes the first two tests she was ill. 900 with covid and wveryone ignored it didnt even tell us
Second time it was because she fell unconsious and it was 1.2m. They wanted a fast track referal to rule out cancer, yet we no one seems to be doing this test??
The retest was 748. everyone agreed the other cells were all normal, no sign of fighting anything.
Dhe was retested in feb and it was 885. All cells were normal apart from Reticulocytes being high too but no one answered. We asked for this extensive testing to help us rule things out. yet now youve said they werent all done?
Your own retest has now com back as 904 with nothing else raised so not only is this still high but its also gone up. twice.
Oh well her curve may just be higher than normal.
ok but she fell unconscious in november when it was 1.2m. thats not normal. shes not that far away from that figure and shes well. and its going up. so do u think she had a clotnor stroke and what is the risk now?
Oh well unfortunately no one seemes to have tested her for microclots in november or did a scan so we will never kknow what happened there.
ok but we thought these tests would hekp shed light on what condition she has causing this
oh but look at her, nothing is wrong
???
umm ok. but the vaccine nurse was very worried because she knew it would make the platelets spike and anything over 1m is a worry?
oh we dont worry unless over 1.5m
ok but our daughter was unconsious at 1
2 andbwe got fast tracked to rule out cancer yet we are still none the clearer 5 months on?
oh it would be very unusual to have this cancer at her age
so what is causing the high platelet
oh well iron or an inherited condition
what inherited condition?
A faulty gene of some kind
but werrnt these tests going to rulenout faulty genes
yes, but not all have been done. lets do the iron first.
ok but if the iron doesnt work then what
oh well probably further tests
what tests
well a biopsy
so why not do this now?
but look she os so well why put her throigh that?
Umm so we can rule out cancer, or know if she needs medicine to prevent strokes or blood clots?
but look shes so well there
but she was grey and floppy and unresponsive in november!
hmm yes. but we dont know the two are related.
at this point we just gave up.
“but come and see me again. not privately because to be honest im not really set up for that…”
in pur heads
so why did you take this on? ane no we arent driving an hour to your hospital when we cant get any straight answer out of you.
im pretty mad.
i now have no idea what tests were done
or whzt any normal next step should be.
i can only hamf conclude that perhaps some of the common mutations were not found but that is not the same as an all clear. her platelets are high and never been normal and going up. wed prefer to know what is going on and what to call it.
i dont feel like seeing this dr again ever.
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Oh @LoisMum I just do not know what to say, it get’s more and more confusing, doesn’t it for you all.
Hang in there and really look after yourselves
I’m with @Erica. All you can do a keep a check on things. Thinking of you. Take care x
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Hello me again. So im an starting to struggle with the time passing to getting a diagnosis. Its over a year now. last week pur daughter picked uo a tummy bug but after 5 days seemed to deteriorate with a fever that calpol wpuldnt bring down by much (stayed at 38.6 to 39.9) so too kher to hospital. they said her CRP was 190 and they needed to start testing for sepsis and antibiotics. This seems to be pretty high?! Oddly her platelets plummeted from 904k in her april test when all pther rputine bloods were normal, to now with this illness dropping to 500k which is still high but nearly half what they had been - noone knew why. none of the childrens ward drs had heard of high platelets they left it off all her handnover notes which was frustrating as we dont know hownit impacts her being ill with other thjngs. we have pushed go hard for a specialist referal and now going to see a paediatric specialist at evelina hospital next week. im strigglingyself at this point and how to jugglenall this timenoff worknand so long with no improved answers on her platelets.
a sad loismum
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Oh sad @LoisMum what a difficult time for you all and then you have to juggle work as well.
Sorry to hear that Lois has been so unwell, going to nursery/school picking up tummy bugs and other things is inevitable I am afraid.
The hospital seem to be looking after her well.
Please do let us know how your appointment at the Evalina children’s hospital goes and how Lois is after her bug.
It must be a worrying time for you all, especially you, really look after yourselves
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hello thank you well things stil seem odd.
Ladt friday while in the supermarket she did a silent cry, held her breath and then passed out which was yet another scare. i had to call tor help and an ambulance came. again told just one of those things.
today she has had a small nose bleed which is her 4th now
her whole head gets sweaty every nap and leaves a wet patch…
just seems a lot for a little one.
My first never had anything like this. yummy bugs yes but never went to hospital. high fevers yes but shed still play and dr would just check her and sendus home as she was still behaving normally… so yeah im finding this quite hard to understand. even our new go called it bizarre and said she hadnt known a little one go through all this.
we still have a month until we speak to the evelina childrens hospital.
the nursery have asked for a GP letter as they are worried about all the health issues. i feel like they are considering asking her to leave as they seem scared something will happen during their watch. the gp has said they just have to call an ambulance and the nursery was a bit disappointed.
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Hi @LoisMum sorry to hear you are still living with such uncertainty.
Please do let us know how you get on with the Evelina Childrens hospital.
Perhaps have a concise diary of events you can tell them or give them.
Be kind to yourselves
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As @Erica said. Keep a note of everything for your appointment. It will be important that they have all off the information. Keep us updated on how things are going
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