I can hear how utterly exhausting this whole journey has been for you and your family. The cancelled appointments, intercepted referrals, and incorrect notes following you around must be very frustrating.
It seems you’re doing absolutely everything you can - you’ve got your timeline documented, you’ve escalated through PALS, you’re working with the epilepsy team, and you’re staying on top of every appointment and result. You’re being a great advocate for your daughter.
The EEG at the end of the month is an important step forward, even though the waiting and not knowing is so hard. With regards to results and timing, you normally won’t get your results on the same day, as the recordings will need to be analysed first and will be sent to the doctor who requested the test. They can discuss the results with you a few days or weeks later.
We’re here on the forum whenever you need to share what you’re going through, though I know we can’t give you the medical answers you’re understandably desperate for. Those will have to come from the specialists, frustrating as the process has been. I hope the counselling support comes through soon too - this level of stress and worry is a lot for anyone to carry, and you deserve that support.
Thinking of you ahead of the EEG and the February appointments, do let us know how they go.
Oh dear @LoisMum and Lois I cannot imagine what you are going through and @Ceri_BloodCancerUK has said it all in her response to you. We are powerless to resolve all your continuing medical issues, but personally I think this forum has other advantages as it gets my thoughts and feelings out of my head onto a text, those fears, frustrations into a diary form, which can help me when I factually prepare for medical appointments.It can also help me if I have someone to come with me to appointments.
The powerlessness of not knowing and waiting feelings are really horrible for me.
Yes, your very natural mum instincts really come through from your posts.
Please do try and look after yourself as well as you look after dear Lois and your family and update us when you can.
He had the results of her sleep deprived eeg (for thr november absent seizure) and this showed as nothing of concern.
So her seizures are on a watch and see sort of approach still. Sigh.
He agreed to do a sleep study to look for sleep apnea, but date is to be decided.
He did not want to discuss the platelets and again suggested she must just track high….? I am still puzzled because that just doesnt seem to be a real thing?
Anyway it means we just have to wait to end of March /April to do another blood test to see hiw it is for the haematologist but if they dont even know what to do about it and not concerned, what is even the point?
I know it will still be high and it will stress me out and they will all just say oh but its nothing shes fit and well….except for she keeps passing out! Also for no reason.
am I weird for feeling like there is a connection? I am a bit frustrated that given they have no idea why the platelets are high nor why she is passing out how they can be so sure the two things are not related… to me that is quite odd.
but I seem to have hit all the dead ends. even my husband feels like giving up at this point. do I just do the same. it just feels a bit wrong to me. ive never heard of kids just passing out and no one being concerned, and these two issues have run in parallel since she was very little.
We saw a neurologist team last week. The confirmed the eeg was normal.
The new dr reviewed every passing out episode with me in great detail (and photocopied my notes and timeline so thank you as she was more interested in that than I was expecting)
She said that for epilepsy while very varied, in individuals the patterns are very similar and she felt there were too many things not forming a pattern here, that meant she wanted to park epilepsy… she wanted to instead explore rare forms of migraine (which i get and my dad get with aura) and which she said in kids isn’t always a headache…but could be dizziness, confusion or rarely passing out. She is also going to do blood tests for brain channelopathies and genetic tests to look for other clues…she also wanted to test me and my husband and do an mri
Well I have no letter on this yet, but today got a call to book the mri for next week! They did not have the blood tests so told me to mention this on the day. We had been trying to align her platelet retest (due end March/april) with this to be one less thing for her so this timing is actually perfect and I have asked her haematologist how to align…
the neurologist had no idea why her platelets would be high so that remains an unknown
she will need a GA/put to sleep so I asked if high platelets is an issue didnt really get an answer, so told to tell that dr on the day…
glad that this is being done sooner rather than later but I had not even got to thinking how long all these new tests might take to get back…
my gut still feels the episodes and the high platelets are linked. would an mri give any clues?
I just feel like with still no one giving thought to BOTH issues my gut is not happy. I thought high platelets was a bit of a problem for GA yet when I ask actual drs I am getting told no… I hate the constant contradictions!
Seems like the EEG being normal is good news, even if it doesn’t feel like it quite resolves anything yet. And actually, reading what the neurologist said, it sounds like she engaged with what you’d brought to that appointment and that she’s thinking carefully rather than just ticking boxes. The migraine angle is interesting given your own history and your dad’s.
The general anaesthetic question - I’d say it’s worth being very specific when you’re there on the day as well as mentioning itin advance. Something like “she has significantly elevated platelets - does that affect the anaesthetic plan?” makes it hard to brush past.
As for whether an MRI could give clues, that’s one for the neurologist. It sounds like she’s running a broad workup precisely because she’s not ready to settle on one explanation, and the MRI is part of that picture.
You’ve advocated for Lois and it’s clearly making a difference. Take care,
her blood samples were taken for genetic testing in march.
confusingly while they said they would take ours too as parents this is proving very delayed and wont now be taken until late june as we have to have some counselling and consent forms that carry longer wait lists for adults…
meanwhile her platelets check came back. still high at 500000 and her iron has plunged to 22. last time it was 601k and ferritin 44. so again the iron and platelet relationship is not doing what the haematologist wanted and instead the opposite. This leaves us back to square 1 of giving iron again. (even though it did nothing to the platelets in the 18m she was on it last time!)
we agreed to not test for 6m as its all been a bit much!
however now getting alerts that she will soon be due some booster vaccines.
I have been posting here mybe 2 years now on this never ending journey but she reacted to the chicken pox vaccine previously and has the history of passing out… which is what these latest genetic tests and set to explore. but given we have no answers for why her platelets are still high, nor why she is passing out, I am feeling a bit uneasy about how to navigate asking for drs opinions here because they wont remember, or will say oh it surely wont happen again…I am especially nervous because after the reactio the drs pushed us to try nd get the second dose…(it almost felt like they wanted to see ifnit wpuld react again) but the pharmacists shated their insurance would not let them do it on someone who reacted and said if the drs were so keen they could do it at the hospital in a safer setting. this all sounded a lot more common sense! so what do I do? remind the drs of the reaction nd ask for it to be done at the hospital? avoid it all together and say I want the other results first…? it has been so stressful that I just cant even handle having to make the decision on this! while I have usually been jn favourite of vaccines this scared me and I feel i want to be more informed but my last experience was drs just assumed all would be fine and then when it wasnt they said it was coincidence. nd then when she got exposed to real chicken pox nd reacted again they still suggested coincidence. it is hard to trust after that and I feel stuck on having to make this next decision. delaying until we get more results feels a safer option…but I wonder how I learn what the guidance would be if she had triple negative Myeloproliferative neoplasms ('MPN')? would the vaccine be allowed or not? I cant find anything reliable to help me.
separately does anyone here know what genetic counselling entails? she will be tested for r66 amd r98. do they only test that or everything? we were briefly told they expect to find mutation in those 1/3 of the time, a negative 1/3 of the time and then a mutation they werent expecting also 1/3rd of the time! is this true? what happenes in each scenario? can we say if we dont want to bebtold if they find something in the parents test but not in the child? how does it work. im such an anxious person, id rather not know if they found something unexpected for me! I have enough to deal with!
Oh @LoisMum yes, I think that you have been posting for about 2 yrs.
As you know we cannot give medical advice, but I hope it does help you in someway to be able to write your medical frustrations, that now include you and your husband as well. It does give such a really good diary of your never ending events, if needed.
Thanks so much for the update and I think about you often. Look after yourselves.
Hello @LoisMum, I’m sorry to hear about the ongoing anxiety that this situation is causing. Just to let you know, I’ve asked one of our wonderful @BloodCancerUK_Nurses_Group to respond to your update because, as lovely @Erica says, no one other than the nurses can offer medical advice on this forum.
Sorry to read all of the concerns you currently have, especially around whether or not to go ahead with the chickenpox vaccine.
It may be best to book an appointment for a discussion on this with the practice nurse at your GP surgery. They would be able to give you the best advice on what to do, as well as ask for the Doctor’s input if they were worried or felt Lois needed monitoring.
There is some good information on this page about the vaccine, and it mentions who should not have the vaccine: chickenpox-vaccine
Do you know about the Yellow Card scheme? It is run by the Medicines and Healthcare products Regulatory Agency (MHRA), as a way to report any side effects or reactions to any medicines, vaccines or healthcare products. If you haven’t already, you may want to fill in a yellow card for the last vaccine she had: Yellow-Card
For patients diagnosed with an Myeloproliferative neoplasms ('MPN') the advice around vaccines can be individual based on their Myeloproliferative neoplasms ('MPN') type, blood counts and treatment they take. Most patients with an Myeloproliferative neoplasms ('MPN') aren’t classed as immunocompromised, so are able to have vaccines. Some people may have low white blood cell counts due to treatment, so they may be immunocompromised.
You’ve asked about genetic counselling and what it entails, strangely it’s not ‘counselling’ as such, it’s more of a discussion and consultation about the genetic tests you are offered. In the UK, genetic tests are very specific to what the requester (GP or Hospital Specialist) has asked for. You would be tested for ‘everything’, for example they won’t be testing you for other cancers, Parkinson’s disease, MND, diabetes, etc.
Before your appointment, do write down any questions you have and take them along so you can discuss them during the consultation. This web page has more information and may be helpful in the mean time: Genetic-Testing-NHS.
Wishing you a good bank holiday weekend.
Take care, Heidi.
I’m in a bit of a similar situation to you! My little is 4 and has not been himself since October last year, under the weather all the time and just not his usual self.
The GP found a heart murmur so referred him to cardiology while waiting for that he was sent for bloods. The bloods come back normal other than high platelets! I asked what this meant and they said oh well you said he’s always coughing and got a cold so it will just be that we’ll repeat the test because it will probably be normal when he’s well. I done some research myself into the high platelets. Anyway long story short we were back and forth for six months repeating the bloods just to get the same results every time and were completely dismissed by are GP. Early June my son took unwell in school at lunch time and was sent home (vomiting and screaming in pain with his stomach) took him to A&E they suspect appendicitis so early the next morning he was rushed for surgery after Hours of waiting round the surgeon come to talk to us. It wasn’t his appendix after all it was something called intussusception which is the bowl so no wonder my poor baby was in so much pain. We had a long conversation with the surgeon, he explained the intussusception had happened due to a polyp in his bowl and that the platelets could MAYBE have been high due to this. He spent some time in hospital and by the time we left the platelets were almost normal! The hospital had requested are GP to repeat the bloods and checks the platelets were still going down and unfortunately they have gone back up! I feel like we are back at square one with no answers. As you have mentioned no one seems to know much about this or really seems that bothered about getting to the top of it and it’s so frustrating and also leaves us mums with worry and anxiety through the roof. My little has also had COVID.
Hello there @roosmum, welcome to the forum. I’m really sorry to read of the concerns you’ve been having with your child. It’s lovely that you joined the forum to respond to @LoisMum.
May I politely ask how you and your child are affected by blood cancer so I can direct you to any relevant support. As you likely saw when registering with this Blood Cancer UK community, we members can’t offer medical advice, but we can share information from around the forum that relates to any blood disorder-related concerns you may have.
If you’d like to talk over the concerns you shared above with the specialist Blood Cancer UK nurses, their expert advice is just at the end of a free call on 0808 2080 888.
Hope that helps a little @roosmum, do let us know if there’s anything about blood cancer we can support you with.
Sorry I didn’t realise it had to only about blood cancer! I was doing some research into the high platelets and came over Loismum posts and I could relate sorry
Ah well in that case I’d say that’s great news that you don’t have these concerns @roosmum! Please no need for any apologies, I know how easy it is to find stuff when googling. Do pass your concerns past your child’s doctors though, they’ll know best.
Sorry you have been having a difficult time, its is so horrid being left without answers so long isnt it! how awful to have the worry too of being rushed for surgery and then have a u turn!
my daughter is not ill all that often but our hospital scares did see 2 dramatic drops, while drs jumped to say oh look its normalising my gut did somersaults, how can you say its normal when shes on a hospital ward, pumping fluids and antibiotics in for sepsis prevention?!? it bounced right up again at the next test. it seems to be a rare phenomenon but i found it is called platelet consumption and you do have to be pretty ill for it to happen
you havent said how high his platelets are? is he under a haematologist? I had to push for one.
if the platelets are high enough amd sustained enough you can try asking for the Myeloproliferative neoplasms ('MPN') mutations testing but this seems rare in kids to find something. in my journey I have learnt quite a few things can trigger it(high platelets) : low iron, blood loss (this can be dramatic OR microscopic, trauma of major surgery or blood loss can leave them elevated for a year or more, spleen issues, coeliac, other allergies, arthritis, ibs, then a little more rarely but sleep apnea, autism and seizures can also elevate platelets. you mentioned your son having a persistant cough? could he have an allergy or asthma?
our next genetic testing is more to explore why she is passing out, they wonder about rarer forms of migraine bit if nothing is found I think my brain will circle back to questioning the platelets again. I do find it quite disturbing that for so long they say the platelets are nothing to worry about when both our kids have separate pain / collapse issues going on! if a simple cold can raise platelets then it seems odd they and not considering what the mystery condition is to test if treating that brings the platelets down. it just feels so backwards!
the Myeloproliferative neoplasms ('MPN') tests take 3-4 months to come back.
I do hope you get some answers! keep me posted.
For Myeloproliferative neoplasms ('MPN') the symptoms they told me to watch for were any bleeding (nose, gums, bum) unusual bruising i think called petecchai and sudden stroke like symptoms or fainting…apparently Lois’s collapses are too long for fainting (typical)