I am new here, i have a 7m old baby girl who qas admitted to A&E twice and got odd blood results.
In May she went in with Covid and suspected Sepsis after going pale and lethargic. Luckily no sepsis.
10 days ago she went in after 10 days of S&D and then an episolde of losing consiousness and floppy for several minute s which was terrifying. They have called this A BRUE brief resolved unexplained event.
On both visits her blood was taken. Only on the second visit did they reveal her platelet count was 900,000. Apparently high?
On the second visit her new count was 1.2M.
I was only told these were high and to come back to retest in 2 weeks (will now fall on 22nd). But Google says this is extreme. It also says it can be high when fighting infection. So is this high because she was ill or is it still unusually high even if ill?
Google has me worried! Any one have any experiences? She quite often goes very very pale. She has cows milk allergy and reflux but breast fed and i have gone dairy free
We see a consltant on 22nd to discuss the first 2 results is there anyhing i should ask?
Hi @LoisMum I am so sorry that you have had to join our forum.
Perhaps it is best not to consult Dr Google, there is a lot of dodgy information out there.
My experience is my mind goes into overdrive into all directions.
I cannot follow @GemmaBloodCancerUK brilliant response.
I am just as concerned about you as a mum.
I am wondering how you are you holding up as a mum so obviously worried about your very special baby.
Perhaps write down all your fears, questions and practicalities for your appointment with the consultant on the 22nd, be pleasantly assertive and ensure you have answers before you leave.
The most important thing you can do is to look after yourself as well as you look after your baby.
Please do post how you both get on and be very kind to yourselves
Hi @LoisMum.
I’m really glad you posted.!you have so much going on and of course you are going to worry.
I think we have all been guilty of googling. I know I have! What I learnt was that being part of forums like these was much healthier and the support line is there if you need to talk to somebody.
I can only imagine how difficult this is for you as a mum.
Please keep a updated when you can and keep posting X
It is a worrying time as she has just had so much go on in these first few months of her life with diagnosing these allergies, terrible reflux and then these two weird episodes of going odd while ill with other things.
I took the a&e team at face value so didnt originally google but then when i was told we would need to be seen in 2 weeks well your mind starts to wonder andnso it was then i googlwd and saw it should have been below 450, so it then wasnt just a casenof being like just outside normal, it seems to be a long way off normal which is disappointing as no one said it was thisnunusual. I also spotted some of her other blood results were either high ornlow but i dont know what that means either. The gp wouldnt comment on the results because they said they dont comment when the hospital do the tests so that was a total dead end. It feels like a long wait to the 22nd now.
On the one hand i know she was clearly fighting something off so im trying to think so of course thenplatelets would go up but this just seems very high i literally cannot find anything anywhere about a baby with these results so that has also left me very nervous. like i cant find anyhing that says oh it came down when they got better or even that it meant they got diagnosed with xyz…all i can find is older adults getting results like this but even then nothing quite this high. so yeah i feel very nervous. x
Hi @LoisMum
I remember the panic when my baby son he is now 25 was shallow breathing and looked like he couldn’t breathe and sleepy and we rushed him to A&E where they put him on a nebuliser and did test and found to be having an asthma attack
That panic and fear stays with you and I feel for you.
Im no doctor this is just my thoughts
They may well be seeing your daughter in two weeks as that will give any infection time to settle and they can re do bloods and check against the last bloods taken to see how the platelets are doing and all the other levels.
Dr Google you will need to find the reputable sources and that takes a lot of searching even when you know a diagnosis it has no idea about your daughter or me and cannot diagnose us only your medical team can do that
They have access to the whole picture and bloods and will need to access that picture with appointments.
It’s good to see that you are being called back in two weeks
Our forum is great for support
Don’t google and use that energy to write down anything that comes into your mind during your day
Bullet point it if that helps
Doesn’t matter if it seems silly
No question is silly when it concerns your baby
Hello, little update, she had a third test today in hospital, it has come down a bit to 748. sadly whereas i had been toldnid see a consultant today this didnt prove true and i have been told.i have to wait for a letter to come with a date for it. the nurse was pleased it was less today but jo insight for what this means…more waiting for us!
Oh @LoisMum yes, more waiting unfortunately, but since I was diagnosed I have found that there is an awful lot of waiting.
For a mum this must be even worse because your maternal feelings are in the mix as well.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting how you both are.
Look after yourself as well as you look after your baby
I’m glad that the nurse is pleased but really sorry you have more waiting ahead of you, it’s horrible for you.
Did the nurse give you any idea of how long you might have to wait?
hello, thanks both for your replies. Yes i feel a bit helpless as a mum and nervous because i am due to finish my maternity leave in early feb and feeling uneasy that i dont know what the future may hold for my little girl. I asked the nurse when the next appointment might be ie weeks or months and she said ‘hopefully not months’… i am feeling a bit lostcbecausebi also dont know if high platelets might cause any sympots for her. oe she does have days where she is just inconsolable. she will hate to be lying down for example …she has reflux and a cows milk allergy so i have cut dairy out of my diet and try to be very careful as if shebhas dairy she seems to get very unhappy butbwith me being very careful i dont know if her bad days are the result of something else… it is hard when you dont know as i dont want to be giving calpol left right and centre but sometimes i just cant work out why she is unhappy. i try to give her loads of cuddles and sing andcyesterday even her big sister was just coming up to her to say ‘its ok lois i am here. you be better soon. i read you a story’ and she is only 2 and a half! but able to see she is in some kind of pain (even after trying calpol). we also have a short holiday today to my husbands family abroad so they can meet Lois. I have gotctravel indurance but worried because i dont have any diagnosis i can declare for her, so unsure quite whatcwe may or may not be covered for. i am a big over thinker anyway, i guess i am just a bit lost without any idea what is going on with her.
Hi @LoisMum it is so hard as a mum isn’t it, I would have all those maternal feelings whizzing around in the mix and just wanting to make my baby happy and better.
All that waiting for an appointment too, if it comes too quickly I would think that there must be something wrong and if it doesn’t arrive for ages I would wonder if I should chase it as perhaps they have forgotten about me.
Perhaps just enjoy visiting your husbands parents abroad and then tell us all about it.
Be kind to yourselves, try and relax and enjoy.
I just feel so much for you and your babies
I can’t offer much my son was a projectile vomiter as a little one.
I was also a very stressed mum and when looking back and through counselling suffered with undiagnosed post natal depression
Babies pick up on this and my son constantly cried and wouldn’t let me leave him which in turn caused frustration.
Could you ask for reasonable adjustments when going back to work that you do less hours
Do you have someone you trust to look after your little one.
Waiting for appointment letters is stressful
Can’t help with travel insurance
I agree with Erica sometime away with family may just be the tonic you need. Let your family help when little one is crying
Just an after thought have you thought about going to a baby relaxation/massage group if there is one
Hello, so little update, the next appoinent letter came and if course it is for February- going to clash with my very first week back at work from maternity leave they womt move it as they say the next free slot isnt u til July and that they already broke the rules to fit her in on this date! so i dont know what i am meant to make of that.
Do these readings still seem odd to any long time people on this board? i feel a bit stressed at being told this is very high but nocone quite saying if this means she is ill or not. have others with babyoes posted on here with high results? i dont quite know where to turn to get info. my gp seems unable to comment on the results
Oh @LoisMum I can feel your need for answers in your post and what a caring, yet stressed, mum you are.
The waiting and not knowing is horrible.
Unfortunately nobody but the people who have ordered the tests can interpret what they mean for your baby.
What it does show is that you have some questions that you would like answers to at that appointment. Perhaps write them all down and be pleasantly assertive and ensure you get the answers you need at that appointment.
As you say the appointment is for during your first week back at work, it is just typical isn’t it.
In the meantime enjoy your time with your baby and please do keep posting how you both are getting on.
Hello again @LoisMum
I am so sorry to hear you are still concerned about your little girl. What Consultant is she seeing in February?
May I ask whether your daughter is still feeling unwell? I would suggest if she remains unwell that you take her back to your GP and explain the time line of her being unwell and the concern you have around her platelet count. Even if the GP cannot directly comment on the blood count they should help if she is not well. This must be such a worrying time for you when you should be enjoying your maternity leave.
We rarely have questions around children on the forum and we cannot interpret the blood test results but we can recommend you escalate your concerns to your GP if you are worried.
Take care
Gemma
Hello. me again. so as an update i got a very last minute appointment with a private pediatritican who specialises in under 1 year olds and his vuew of things is he suspects something called PIMS which is a rare covid complication, so he is ordering some further checks to explore this more. I am for now relieved that someone has finally been brave enough to give an opinion! And will see how the next few tests go (date to be confirmed) they are gojng to check her liver and heart as immediate steps and then advise after that. he cautioned to keep a careful eye if she picks up any other bug as she at risk of over reacting again and it could be quite dangerous as shown by her blood results to date. …so i will report back when we have done these tests!
Hi @LoisMum you sound relieved that you might have an idea of what has been going on for your lovely little one.
Please do let us know how the diagnostic tests go.
Thanks for taking the time to let us know and really look after yourselves
Thanks so much for the update. I can imagine you’re still anxious about the results but I’m glad somebody is looking in to this for you. Please keep us
updated x
Hello, me again
So we got 'seen’on 14th feb and another disappointing experience as the Consultant simply said i had to go away and book a new blood test as none had been booked for my visot due to a new hospital process…so a total waste of time. It also turned out by his own admission he was one of the guys who saw her whenni took her in november with nearly two weeks of S&D and hed sent her home only for her to fall unconscious just days later! he almost chuckled at this and brushed it off like the two things werent releated. Hmph! So i said what was it then it it wasnt the prolonged S&D and he unhelpfully said 'we just wont ever know so then i said, is it related to these high platelets, and again he acted like she didnt have high platelets… he even said 'im certain they will be in the normal rang this time" …well i got the test done a week later and then waited a full week before chasing my GP only to get the news they were abnormal and to call the hospital for help. They had gone up to 885,000. So i rang the hospital every day last week and no one knew what to do as they already couldnt understand why id had an abornal result and not been telephoned directly. i got passed to countless wrong numbers and told the consultant would call me back but he never did. I tried to reach out to the private dr we saw in December but got a message he was on holiday. I then tried to find a specialised paediatric haematologist and got a referal for my private insurance only ror that person to say they are too bisy and recommended a colleague but i have to pass that back to the insurance for approval and so yet another delay. i am feeling very stuck because this has now been high in 4 tests since last may when she was 2m old.
Oh @LoisMum , this has been going on so long for you and Lois.
Perhaps you might consider contacting your NHS hospital’s PALS (Patient Advice and Liaison Service) for assistance and also chasing your insurance company.
Perhaps it is worth sending both of them your clear diary of events with them and what you are looking for from each.
Take lots of care of yourselves, let us know how you get on and it is so, so tough being a caring, loving mum
they womt move it as they say the next free slot isnt u til July and that they already broke the rules to fit her in on this date! so i dont know what i am meant to make of that.