Hello, its been a while since I posted… sadly Lois’s platelets are still high and unexplained. She’s still not had a ‘normal’ result and testing every 3 months. Since last June she has also been ‘passing out’ - this has happened 7 times with a cluster close together between November and December, this lead to and EEG - normal, a holter heart test (detected pauses and fast and slow heart rate) and a heart echo - normal. She’s been on iron since last July for the high platelets. We are still stumped as to what is going on - the drs dont think the passing out is related to the high platelets but they thought the iron would help the passing out - but seems inconculsive so far. The iron was normal at the last test. Just wondering what we do next… they said they will re do the Myeloproliferative neoplasms (MPN) mutations testing in March but Im at a loss as to if they should be testing for anything else, or if they should have tested family yet, or when they would do a bone marrow biopsy for a child? She had episodes of passing out with the Chicken pox vaccine in August - but this happened 3 hours after, and then she was exposed to Chicken Pox at nursery in November and had 2 more episodes of passing out, the drs were puzzled by this - wanting only to put it down to cooincidence… ? Still feeling very lonely and in limbo! Wondering what else I should be doing to get help for her? It’s quite frustrating to have been told for nearly a year that it would go back to normal - only for it not to and now drs still have no idea what is going on… its not reactive because her other results are all normal and have been several times.
Oh @LoisMum I am so sorry that you are still living with this uncertainty, it must be so hard for you with your love, caring and maternal feelings for Lois.
It really does seem that the medical people are trying as hard as the can trying to work out what is going on for Lois.
Thanks so much for updating us but really look after and be very kind to yourselves
I think you are doing all that you can. The good thing is that the hospital are checking regularly. However, I know how hard it must be not knowing X
Dear @LoisMum
Really sorry to hear that Lois has had some episodes were she has passed out. It sounds like she has had quite a lot of investigations around this. How she generally, day to day? May I ask how often you are seeing the Paediatricians?
I don’t think there is anything else you should be doing as you are escalating any issues and asking questions which is excellent.
You asked a question around a bone marrow test, this would only be undertaken if there was significant indications that the bone marrow function was failing. It is a procedure for a child that is done under general anaesthetic so the medical team would need a clear need to undertake this.
In terms of your family, are they all well and do they have any history that you see as significant? You can always speak to your GP about this if it is something that concerns you or you can talk this through with the paediatricians.
As I mentioned, you are doing a great job in advocating for you daughter. If you do need to talk please know we are here: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hello.
I am back again.
Today my daughter had her latest set of bloodwork and it was still high 500s. for the past 12m it has been pretty stable at around 575. (Prior it was much higher).
She has been on Iron for a year as she tracked borderline low last summer. That has been steadily rising and now excellent.
We had the blood test at 8.30 and then were booked to see haematologist at 9 but it ran slightly late. we knew in advance we wouldnt get the results for that appointment.
We got them later this afternoon.
And im feeling pretty overwhelmed at this point.
In the appointment he was very hopeful that we might finally see them return to normal.. .something hes said on the phone each time prior to a test for a year now.
Well we decided to be a bit firmwr this time and point out the uear of being on iron amd said if this time iron is still normal but platelets are high and everything else is normal what will it mean…?
He did his usual, 'lets not assume the worst, but i knew you would ask this so IF this happens then i will have to rule out iron being the cause." So then we were ready with our next questions " and what will that mean? to be clear, is there anything else this could be at this point"
again " lets not think the worst…but no, at this point there would be nothing else i can put it down to" so again as he would say the Myeloproliferative neoplasms (MPN) words we had to push and say “so its not iron, or reactive would anything else cause high platelets?”
Im really hoping for a normal result because everything else has been good for a while".
Well, of couse the result came back the bloody same high numbers for platelets didnt it?!?!?!
And when he rang to tell me he was clearly disappointed but again failed to specifiy what this means…he just said lets stick to the plan on re testing the mutations in September and I will also review with a more fine tooth comb the genetic tests you did a year ago (with someone else) in case indicators can be found that may have seemed irrelevant then but which might be more useful now…
Yes having a plan is helpful. But its also now on my mind…if this really is Myeloproliferative neoplasms (MPN) at this point dont we actually need to discuss that? or is it that he wants to do the tests again to be more certain on which form given she was triple negative a year ago?
Im also concerened because she has passed out 6 times since 8 months old. They eventually suggested reflex anoixic seizures (with proven heart pauses) but they also said she was atypical as she didnt have usual triggers, theyd only happen around times of being ill. Mostly we have seen her heart and breathing stop and turn either deathly grey or totally white and rigid. We have also witnesses nose bleeds in hot weather, painful feet and intense tum
my pains …all these symptoms actually appear in medical journals ad Myeloproliferative neoplasms (MPN) symptoms For Essential thrombocythemia (ET)! the passing out is called syncope. Yet for 18m ive been told this is not related. now i feel like an idiot…because maybe it is related (as i had always felt in my gut). Will any of this be taken any more seriously? what do i do between now and september? who is going to help me and my husband learn what Myeloproliferative neoplasms (MPN) might mean for our daughter? i have had to read medical journals but that is not day to day advice. i do feel a bit lost. we have been travelling to Evelina to see this haematologist as there was noone at pur original london hospital. oddly it seems we are closer though to royal marsden which is another specialist should i ask to be transfered there??? trying to find a leaflet on paediatric Myeloproliferative neoplasms (MPN) seems impossible! i have no idea what to expect and feel lost. i feel my husband will bury his head until the dr actually spells it out and says. Right so it Ias Myeloproliferative neoplasms (MPN) heres a leaflet. all we learnt today is they dont plan to change anything just watch and wait…but where does this leave me if she faints again or needs hospital. do i say its high platelets or RAS or do i even mention Myeloproliferative neoplasms (MPN), how do i explain what shes even got. will i get a letter or do u think they will wait for the next tests?? like we normally get a letter a few weeks later and they just love to write, still potentially reactive due to patients age or low iron count. this time will it say all reactive causes now ruled out? Or suspected Myeloproliferative neoplasms (MPN)? if hes admitted it cant be anything else at this point? i am just struggling to process this after 18m of being told thisbis all in my head and im a negative paranoid woman…it seems i was actually right on this. naturally i am gutted for my daughter. i wanted that normal result more than anything and just couldnt understand why month after mknth they kept saying nothing to worry about. i am just really confused and sad that she seems to actually have this one in a million thing. amd now questioning how all her symptoms got palmed off too. i just had to vent because its been such a rollercoaster! i am also scared without a letter confirming this that no other dr will believe me and if we have to go to a and e i just wont even know what to say about her medical history at this point because what they say in the appointment vs the letters always seem worlds apart.
Hi @LoisMum.
I’m sorry you find yourself back here and still have the same concerns and worries. It must be a very difficult time.
I am glad that Lois is being checked regularly which is reassuring. However, it feels like you are not reassured by the medical team.
Have you told the doctor what you think it could be? I wondered what his response was?
Nichola
Hi Nicola. thanks for your reply. I did reach out to the Haematologist after to raise my query and im still confused… he said he believes it is no longer reactive. but hes not able to say what it is yet. I find this odd, because there aren’t that many causes for this… there is familial/inherited things but I felt a private test a year ago ruled that out. He is saying he will get that reviewed (but no timeline) and go through with a fine tooth comb in case there are indicators that had not seemed so relevant a year ago that might be more so now… and I being told nonsense?? He said we can repeat the mutations test this september - though he now tried to say we move that back again, which I have declined. I already moved it from June to Sept, not really sure what delay has as a benefit? At this point I really want to know what we are dealing with and especially to be sure we are not meanwhile missing something important, or that the more serious (though slim) risks of an Myeloproliferative neoplasms (MPN) are not missed either - because it feels like we cant even ask about those risks or what to look out for while there is no formal diagnosis. I feel we only have this haematologist because GP has no clue and not at all interested. I had imagined at the start of this, the more serious things would be easier to rule out, but I feel thats actually what they seem least interested in looking at.
Hello. me again. so i took the plunge and booked in her blood test for the end of this month. I am definitely feeling overwhelmed and cant stop thinking about it. I feel on a permanent countdown. Can I ask at what point would it be reasonable for her to have a BMB? shes never had a normal platelets count and we are almost 2 years in to doing regular testing. is this normal to still have no answers?this is feeling pretty lonely at this point. and impacting my sleep a lot as im just in a rut of feeling like I need to accept now that this isn’t going to get better for her? yet without a diagnosis i also feel like im stuck in this horrible limbo, that i cant even offload how im feeling to anyone because I feel everyone wants to try and say oh she’ll be ok…but what if she isn’t? I mean this is almost 2 years of abnormal results, how do others deal with constantly getting bad results and the dismissive remarks? I feel like i want a diagnosis in order to move forward from thisnlkmbo state but I am also terrified of the reality of her having a chronic condition… if she were to be diagnosed with Essential thrombocythemia (ET) or something what sort of support might we/should we expect or will it continue as it has been of figure it out for oneself? feeling pretty down with my thoughts on this. how can I get my head out of this constant countdown and result anxiety? I am a worrier anyway but it is exhausting feeling in this high alert state which is compounded by some other difficult events going on simultaneously. are there any other mums on this forum going through this?
Hi @LoisMum ,
Very sorry to read that there still isn’t a diagnosis.
It may be reassuring to read that I had high platelet counts for many years and was fine. It was only years later that I got it looked into after I started getting night sweats. After a few months an Myeloproliferative neoplasms (MPN), Polycythaemia Vera (Polycythaemia vera (PV)) was diagnosed. For me it was quite a relief; I was delighted it wasn’t worse. I have a friend with Essential Thrombocythaemia (Essential thrombocythemia (ET)). She also has high platelet counts but needs no treatment. The doctors simply keep an eye on her and will start treatment if it becomes necessary.
What I’m saying is that one can live a normal life with high platelet counts. My hope is that this will help to lessen your stress. Of course you should still push to get a diagnosis.
Lucky
Hi Lucky, thank you. Yes I have seen that it can be quite a normal life, but I also see a lot less is known about this in kids, so I wonder about things like could she have a family and what lifespan she might have… all ifs of course because we are in limbo in knowing what she has… which is also half the pain because whereas many others seem to be able to get a diagnosis like you in a matter of months, we are almost 2 years in, with a lot of tests and still no clear answers and now even starting to redo some! At this point I wonder is of the two evils - to keep having bloods every 3 months or when they might do a BMB and get a more conclusive answer? ie if she has nothing then we could stop the blood tests, but if it is an Myeloproliferative neoplasms (MPN) at least we have the chance to open up support routes for that and people to ask questions to? Does this make sense?
@LoisMum ,
Yes that makes sense. I’m fortunate in living near a very good hospital so was probably diagnosed more quickly than many. Two years does seem rather a long time to wait for a diagnosis though. Could you ask for a second opinion?
I was told I had the JAK2 mutation before I had a BMB so presumably the genetic test can be performed using a blood sample. I’m not medically trained, simply relating my own experience.
Lucky
Hello. I am back again. We still have no answers and due to see her paediatrician this week who the last 2 times had just wanted to dismiss us, being another dr who just kept assuming her results would normalise. Im not sure how to approach this appointment and feeling very down about this whole situation because I feel prior to each blood test its like they are on a mission to persuade me it will just improve. but then it doesnt! I am pretty exhausted from that false hope, disappointment of unwanted results and still no answers. This time, the tests in September showed 3 elevated liver test results. the haematologist said this was out of his remit and to contact the paediatrician (who ignored me) or the GP - who suggested repeating the tests a month on. We did that and 2 came down but one - the ALP has gone higher. the GP surgery wont call me back for 2 weeks (which falls this friday) whereas on Thursday its the 6m review with the pediatrician. I am not sure what to ask or what to expect. She was slightly ill with a cough at t he time the bloods were due so I delayed it to try and ensure healthy testing but I dont know if I didnt allow enough time or if there is some other reason for her liver tests becoming abnormal, but I feel like I will just again be told its nothing. and what to do then? the platelets have come.e down this time to 449. so just within normal by 1 point but given we have seen this happen once before when ill and then it bounce back up, I am not exactly feeling g any rush of relief because we have experienced them go up before and with the liver being high this is still a set of results with abnormal findings. typically when goggling high alp in a child this through up bone growth OR bone disorders of which Myeloproliferative neoplasms (MPN) is listed. what are the odds? so how does one know of this is normal or a further indication of a more extreme thing going on? I am really struggling g with this pretty opposing set of options for what is going on with her. as she doesnt seem to be reacting to anything (ie a perfect CRP, perfect esr, perfect red white and other cell markers) and all tests to find something reactive being negative, I am just feeling g very anxious for if the ped dr decides to just label this reactive again when there is nothing g at this point to support that. it is feeling g very lonely because I also cant find anyone really with a similar experience. others seem to have either found a mutation or progressed to a bone marrow biopsy to give answers and yet for her age thisnis being denied. but at what point would it be considered to do a bone marrow biopsy? because this is now also a lot of blood tests with no answers, and now with high liver resukts this seems to mean more tests to check it could probably follow…but if all they report back is oh its probably nothing then why are we doing them? I am just losing hope and desperate for some clarity. how does a dr determine that thisnis not for example progression of some kind? would they be expecting to see something else off in the blood? I just cant make sense for why her platelets are the only thing that is high, is this odd? are others seeing other cells going outside of normal? I cant seem to learn anything g about why only the platelet cells would be high. he also wants us to stop her iron in december to see what impact that has on platelets when testing in Jan. again if I try to ask what will it mean if they go up I just get, let’s hope they stay down. or why assume the worst? Is this gaslighting or am I really just weird for wanting to know what happens if they go up? its just after so many years of them trying to push that they will come down and mostly not done so, (unless ill it seems) why cant I get answers o my question for why is it not actually coming down and what can this mean? sorry to waffle but this is really tying me up in knots and feels so the wrong way round… it keeps staying high so why are they at this point not trying to learn why? why are we still being so dismissed? if this is “normal in kids” why am I not finding mums on forums in my same position? Just feel so down and low about this now, not helped by other things in life going belly up too.
Hi @LoisMum.
You are obviously very worried and have lots of unanswered questions.
I would write all of those questions down ready for the appointment. Is somebody coming to the appointment with you? It may help so that they can help you ask those questions and share your concerns.
It’s really hard for us to comment on the medical side of things. How is Lois doing in herself?
Why don’t you give the helpline a call. They may be able to support you in organising your thoughts, the key concerns and questions you might want to ask. I have copied the link below.
Blood cancer information and support by phone and email | Blood Cancer UK .
Please keep Us updated on how the appointment goes x
Hi Nicola thanks.I went to the appointment, but it went downhill from the very beginning as my daughter on seeing the hospital had a totally meltdown which was very traumatic to manage. On finally calming her down we were immediately called in which set her off again. This sowed a seed in the drs head that she must have a behavioural issue and he wanted to spend much of the appointment trying to persuade me of that (rather than consider she just freaked out thinking she might have another needle, she is only 2.5 and just had a blood test there recently). He said the liver tests must be down to a growth spurt (not something I have seen myself ie no outgrowing of clothes) He was again not at all interested in the high platelets, refused to look at the 2 years of results and just said this was her normal and shes fine but proceeded to tell me she is fine other than him thinking she seems to have behavioural issues based on her 1 unusual meltdown despite her behaving normally once I had calmed her back down again… I left feeling totally broken. I did email PALS after to ask for the differential diagnosis and I emailed the haematologist because the paediatrician has discharged us (despite requesting a sleep study) and ignoring how I reported the haematologist wanted to see what would happen in Jan if we stopped her iron in december. Surely this leaves her with no one overseeing things? Not that he ever was anyway, the haematologist has led every test so far. I also emailed the haematologist outlining my concerns that she is becoming alarmed by hospitals now, (as am I) and that this testing without getting to a cause is taking a big toll on me too. he was very kind but essentially said well we can just not test again if you prefer? So I feel like we re just a lost cause now. if no one is interested in getting to the bottom of this, what is even the point? i feel like this isn’t normal, and yet im being made to feel abnormal for being worried about what are abnormal results. it is just bizarre. as I say its left me feeling pretty horribly depressed at this point and I dont feel like I could even step into another hospital ever again after this. confusingly I have reported her awful sleep for a long time. until today ive also had this brushed off anytime I mention it. but oddly the paediatrician today seemed to hone in on this to again say this was suggestive of a behavioural issue or some other concern that was not normal for a 2.t year old. he would not elaborate but has arranged a sleep study over at the children’s hospital that is quite hard for me to get to (two trains and a taxi across london) why it has to be there when we have other children’s hospitals closer to me I dont know. but now I am sad because I dont know what that will entail and found it odd he would not elaborate on this either. am I just being set up for another difficult situation where I have to explain a referral that has not even been explained to me? from my perspective I was trying to ask if the high platelets might be causing the bad sleep but of course none of her symptoms (night sweats, night tummy pain, passing out , nose bleeds in hot weather) are ever allowed to be caused by high platelets, but i remain left not knowing what is causing them all either. I am at my wits end and just want to crawl into a hole at this point. my own anxiety is off the chart
Hi @LoisMum
I can hear in your post how frustrated and worried you are. It’s sounds as though it was a stressful day for you both.
I think contacting PALs was a good call and hopefully they can support you in navigating through this.
Remember, the support line is always there if you need it.
Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care of yourself and Lous and keep us updated.
Nichola X
Hello @LoisMum ,
Sorry to read about all the difficulties you are having, it’s completely understandable you’d be feeling overwhelmed and increasing anxiety. Your poor daughter (and you!) having a meltdown on arrival to the hospital, she was probably just expressing her fear in the only way she knows how. I’m so sorry for you both that this happened and then the appointment focussed on her behaviour.
I’m not quite sure what is best to suggest to you with regards to getting further tests or assessments to help find the answers to your to daughter’s symptoms and results. Contacting PALS is a good start to raising your questions, I hope you get a response from the.
You could possibly ask for your GP to request or refer you for a second opinion to a different paediatrician at a different hospital, and hopefully this won’t trigger your daughter into panic if it’s somewhere new.
My only other suggestion is contacting: The Patients Association they are an independent organisation that can support you with navigating NHS services and knowing your rights. They have a free support line you can call. They may be able to advocate for you and help with communicating your concerns to ‘the right people’.
Make sure to take time out for yourself, look after your own wellbeing too - which isn’t always easy to do when you’re busy being a Mum, so ask others for help and support.
As Nichola has mentioned, you’d be welcome to call our support line if you want to talk things through.
Take care, Heidi.
Thank you both. As it happens she broke out in a high fever on thursday night which worsened on friday and led me to take her to GP who diagnosed a chest infection, thus confirming my suspicion that something was bothering her even though she was not presenting any symptoms (ie no cough or anything) other than being off her food for a while (which again I was told was behavioural even though i felt it was only a recent thing and feeling she was ill with something but i didnt know what because she didnt have any visible symptoms)… so anyway I am feeling somewhat relieved that at least this chest infection and sore throat has been found (so I’m not mad!) but again disappointed because had the paediatrician done a physical example the day before, he may also have spotted this, rather than him not even bothering because in his view she just looked totally well and it was all behavioural… but now it seems likely she had the beginning of something, while also having had slight illnesses twice in the month prior too. anyway after a lot of cuddles and rest yesterday and some antibiotics, she already seems to have perked up today (after becoming increasingly drowsy as her temp reached 39.6 yesterday) so i am glad that we got help last night and that have not had to stress about an out of hours visit today or anything. The GP also commented on hr liver results and was disappointed the Paediatrican had discharged us - saying normally they would test again to check it returned to normal (while reassuring me it was not too high a result) so he suggested that would normally be after 3 months, so I said perhaps we could combine it with the next haematologist blood draw in Jan (so she is not having two needs, just one for everything) so he was happy with that. I think I will update the haematologist on this plan next week, and perhaps reach out to the GP to ask for an alternative paediatrician. I did email PALS on thursday so maybe I will hear from them at some point too. But mostly i feel able to breath a sigh of relief that my instincts were right that something was going on given she so quickly came out in this fever. Its horrible being made to feel you are ‘seeing things’ when you actually aren’t. I will keep you posted on the jan results (or if anything happens in the meantime). thanks for your help on all the ideas for what to try next - I will work through them in stages. I appreciate your help and did find the helpline so helpful when i rang this week too - thanks for that!
Hello. just here to report that we just redid her platelets at the end of December and all is perfect bar the platelets which are now 601,000. The haematologist has not rung yet.
I really wonder where we go from here… 2 years of it being high. the only 3 times its dipped below 500 she was ill (2 of those tests being done while admitted for sepsis protocol) the third was September the only time I took her shortly after she had been ill due to family circumstances meaning I couldnt change it… getting told oh look it’s normalised which my gut just didnt believe and here we are it back at 601,000.
We had stopped iron at the end of november as per the haematologist advice (she had been on it since July 2024) as we had asked how long would she need on it given her iron has been normal for a year … anyway would 601000 be considered stable or significant given she stayed between 575000 and 590000 on it?
just feeling hopeless as they keep saying it will go down and then it doesnt.
she also had another odd event in november whoch the nursery reported, she didnt fully pass out but slumped oddly to the left that is 9 odd episodes now in the same two years… still being told its not related, but hard to know what to believe at this point, does anyone on here have experience of fainting or funny turns with high platelets?
I feel a bit sick with worry wondering what the haematologist will say to us once he returns to work and sees her results. still unable to find another parent reporting similar symptoms with their child… are we unlucky or dealing with something rare thats being overlooked? I am still losing my perspective.
Hello @LoisMum, thank you for the update. I’m so sorry to hear that Lois has had another one of these frightening episodes - I can only imagine how worrying and distressing this must be for you all.
I hope it’s helpful for you to be keeping a note of what’s going on here on the Forum thread. This kind of record can be really valuable information for Lois’s medical team, so if it feels manageable (and if you aren’t doing so already) it might also be helpful to keep a written record on your phone/paper of anything you notice in the lead-up to these episodes or any patterns you’re spotting, to then take along to any appointments. And if it’s possible to take a video recording when one of these episodes happens, that could give healthcare professionals even more insight into what’s going on.
Unfortunately, we can’t say what might be causing these episodes or whether they’re connected to her platelets - that’s something her medical team will need to assess with the full picture of her health. In the meantime, if this happens again, please do call 111, or 999 if it feels like a medical emergency.
I hope the appointment you’ve got coming up gives you some clearer answers, and you’re always very welcome to keep posting here. If you’d like to talk things through again in more detail, our support line is available on 0808 2080 888.
Thinking of you and Lois,
Ceri - Blood Cancer UK Support Services
hello me again.
So the haematologist was disappointed with the result. Said we should retest in 3/4 months.
He also shared she sleep study has been cancelled as paediatrician booked the wrong thing. Sigh.
Following the 9th '“episode” at nursery the GP wrote for an urgent paediatric neurology referral. Well the hospital intercepted that and cancelled it. (Seems they dont have that person either, honestly couldnt even make this up could you?!) They put me on a list to see paediatrician again in 6months! Well I did contact PALS (3 times as got ignored first two) and on escalating negotiated to be seen by a new epilepsy team. We shared our video and notes but they volunteered nothing about what could be going on. They offered to give nursery some training on how to hekp though so that was 1 positive outcome. We will have a sleep deprived EEG at the end of the month so a bit nervous about that and letter explained very little. I have booked the whole day off to take some pressure off though.
Off the back of that, they bought forward the paediatrician appointment to mid Feb. Quite anxious for that as he has been most unhelpful and made me feel im just paranoid. But given I can now account for her acting odd last time by knowing she went on to have a fever and chest infection (which he missed as he didnt even examin her) and given she went on to have 9th funny turn (at nursery so thankfully witnessed!) and given her platelets did what i told him they would and bounced right back up when well, I am curious how he will be, but as we dont seem to see eye to eye I will try to ask who else could give an opinion (so far pals said he is the lead and so no one else can give an opinion) i am wondering what the odds are of the eeg resukt being back by then? as there is only about 2 weeks between the eegbamd the paed. appointment.
I am struggling to even know what to ask for re the platelets. His answer last time was “they are resolved” which was preemptive and now clearly arent. Aside from the bone marrow biopsy We seem to have exhausted every reactive test. Im imagining he will say its fluke or she must have been ill …but I know she wasnt! How do I manage this?
I am seriously tempted to say I want her blood clotting checked but I dont know the name of these tests? If only to be certain that no clots are causing these passing out!
I have plotted out the entire timeline of tests and the 9 funny turns. its 5 pages. I have sent it to the haematologist and to the epilepsy team (because annoyingly they wrote on her notes she had low platelets that were now resolved, or thrombocytopenia so i have asked if they can correct that and remove the resolved given the latest result that i also attached) its actually quite sole destroying how many times we are seeing people write the wrong thing for the platelets!
I did show the epilepsy team 3 videos but as per usual it didnt help, they wouldnt say it was or wasnt epilepsy, just zero comment and “please take more and film the whole thing” while when i tried to show them a 6minute long video, guess how much they watched?? 1 minutes. jokes. I pointed out we’ve had times she has no pulse, no breathing and also times of palpitations, all of which we have had earlier advice to call 999 for, so its not easy to film! Nursery managed to delete the cctv. We have had to take quite extreme ensures to raise a safeguarding concern to get help there as their head office refused to share it even though there was a medical need and gp wrote asking for it even.
it actually feels like everything is just set up to fail us and make a diagnosis impossible.
we got the eeg letter a couple of days ago and while I am grateful its not too long to wait, my insomnia has reappeared immediately.
I reached out for counselling support on this a whole year ago, and still waiting!
I cant shake the worry that what if she has a seizure and just doesnt recover? and then they find it was a blood clot after all…all from the high platelets. whatever she has seems pretty unusual because I simply cant find any other mother posting this long platelet score anywhere. even on MPN (Myeloproliferative neoplasms) forums the kids have all had a bone marror biopsy by now. I dont get it. yes they are not in the millions now but they are clearly working to a high baseline! I worry that the iron may have bought it down, so wonder if it goes up at the next test what would that mean?? Surely if your body is making a lot of platelets that will use iron? and ifbyour body is consuming a lot of platelets when ill and then is making double the normal amount to return to a baseline that is double the norm, then perhaps we will see the platelets rise higher without the iron having a stabilising effect? I am putting this here as a prediction so if they rise I can know that I am not mad. and to ask this. because so far everything i have thought I know they will be high, I was actually right over all these specialists. I have read countless medical journals because when they say it will be normal next time and its not my mind has wanted answers. so I read on it
reactive is usually transient so resolves usually in 3 weeks to 3 months. for anything with heavy blood loss it could be 6m-12m or rarely could actually cause a high baseline thereafter that trauma… I have checked this specifically across kids and adults to look for differences. the only difference seems to be kids under 1 have far higher likelihood of platelets spiking to extreme levels for reactive and transient causes, so no doubt why drs didnt completely panic when they saw 956 and 1.2m originally. However I certainly cant find many examples of platelets persistently high in the journal without a cause being found. journals on iron as the reactive cause for adults and kids all said depending on the iron Deficiency 3m of supplements tends to resolve both the iron Deficiency and the platelets. if the Deficiency is extreme it may take a bit longer but the two usually correlate. I can see that when she started taking the iron the borderline Deficiency resolved by the next test 3 m later. And while iron stores crept slightly higher then stabilised at 6m the platelets did not improve and stayed flat at high 500s. curiously on stopping the iron, that also crept slightly up in December and more curiously the platelets tipped to 601,000. now for me 580 to 601 is not a big leave (given we have seen many bigger ones with her in year 1) but it takes us to the highest point since 2024. and when she was not on iron we saw them 956 and 1.2m in two ill tests. then the dip 2 weeks later when recovering to 758, and then it just rose next two times inexplicably to 885 and 904 and then she was vaccinated, then had a tummy bug and so before the 3rd test passed out again, and the platelets dipped. So I do wonder if the platelets will rise without the iron… and if this would then add any more weight to it behaving more like mon patterns? because certainly on MPN (Myeloproliferative neoplasms) forums adults and parents of kids report their platelets dip when ill, not rise. so to me this is the opposite of normal platelets counts. and I am curious that thisnis what I can see tracking my daughters out. im told this is all in my head but I do wonder. I have not told the haematologist that I have been reading journals or forums but I do feel like what he is telling me is not totally making sense and by reading I am also learning what should be happening (if reactive) and not seeing it. He also has never answered me on if he has ever treated a kid with an MPN (Myeloproliferative neoplasms) saying he cant talk about other patients but I did find that odd too. perhaps I do need to consider given this is rare, these drs have actually never encountered it themselves? if there thought is its simply too rare, but given it usually is quite lacking in symptoms, and with kids mostly being triple negative I am back to thinking is the obvious just staring us in the face? this is clearly not reactive to me because her other bloods are normal. shes not fighting anything! nothing else is raised. yeah my mind is really scrambled. While a diagnosis would bring new worries I would at least be comforted that I am not mad. mum instincts are real, and mine are just on overdrive about this because its infuriating that they predict it will resolve and then it doesnt, each time the bland notes get something wrong and yet the drs take other drs notes as more reliable than my own account, its not easy to have to say im sorry but that note is wrong… ! yet they believe it over me and that one note becomes two wrong notes and spirals. I dont even really want to see this paediatric dr in Feb because he has not been helpful and feel it will be another waste of time. but if I dont go and try it will be used to suggest im negative or unreasonable…I finding this very hard.really