ITP

[12071989mihaelAm]

Hello mums..I’m sorry if this isn’t allowed,but I was wondering if there are any mums here with babies /children that have been diagnosed with ITP ?
In our case is due to a viral infection and it’s when the platelets count is dangerously low and your baby bruises really easily .
I’d like to ask a few more questions if any mums know anything or anyone that had/has it.
Any bit of information would be so appreciated !
Thank you so much !

Hello mums..I’m sorry if this isn’t allowed,but I was wondering if there are any mums here with babies /children that have been diagnosed with ITP ?
In our case is due to a viral infection and it’s when the platelets count is dangerously low and your baby bruises really easily .
I’d like to ask a few more questions if any mums know anything or anyone that had/has it.
Any bit of information would be so appreciated !
Thank you so much !

My DD had it when she was 5. She's now 20 and never had any further issues.

That’s so reassuring ..but did you find you had to do something in particular while he had low platelets ? We haven’t been told much ,they just do blood tests ...now ,there isn’t Much information about it online ,but there seems to be info about foods that need to be used/avoided .
We freak out that when he gets well,we’ll always be paranoid about infections /colds etc !

I suffer with ITP myself and I had my spleen removed when I was 2 and half. I have had a few periods of low platelets, especially when I had my children.
ITP is a condition that isn't heard of very often. Many Hcp's have no idea what it is.

Everyone is different but I have never changed my life or what I eat or do. I think a lot of people let paranoia take over. I had a tough childhood, in hospital a lot of my life until I was 5 with different tests etc. Now I'm only on penicillin for the rest of my life due to having no immune system. No other treatment.
Speak with the haematologist. Explain your concerns, every child is different and what may work or not work for one person might be the opposite for another.

Hello lovely,

My little one had ITP Christmas last year (he was four months the old), started with pin prick like spots across his nose and cheeks (a bit like freckles until you saw them closer), took him to GP who sent us straight up too peadatrics fkr all sorts of tests, his platelets came back as 12, he was started to roll and army crawl so had to keep a very close eye on him. After a week they wanted to see us back so booked an appointment with the consultant, blood tests again came back as 4 (just four), told this is dangerously low but unfortunately unable to do anything, he was a good size baby with no other illnesses so they said he would be in good stead to overcome it and it would go with time, we were referred to Sunderland Hospital (Tyne and Wear) as they had a specialist that wanted to see him, after around 12 weeks he was discharged from their care and had no problems since.

They did have to keep doing blood tests which were horrendous, after a short while though the bruising stopped.. he was the most smiley and happy baby throughout the whole thing.

I questioned at the time if the low platelet would affect him later on, I had just had an aunt died previous that year at 41 for AML (leukaemia) so was aware of the low platelet risks.

Happy to answer any questions but apparently some babies just grow out of it, sometimes goes undiagnosed, it was only as he was so little I took him to see GP for a rash and was expecting him to just say it has something to do with the snuffly nose he had previous to that..

@numbmum83 sounds like you had a tough one..at least he got diagnosed correctly ,my only worry is that they are not informing us enough !
Thank you for getting back to me🤗

@aspiringnurse my baby got diagnosed just after Christmas and a few days before his first birthday .
His first reading was 12 and second one ,after one week was 29. I would’ve been terrified if ,like your baby’s, would’ve been 4.
Initially My baby had about 6 weeks on and off cold /snot no temperature or anything . Before Christmas we went to a restaurant and the only thing I’ve given him was a piece of broccoli and one slice of cucumber (more to keep him busy munching on something ) a few hours later he vomited about 5 times and the next day started having diarrhoea for 10 days. GP said it’s fine as long as he gets hydrated (he loves his milk so he mainly lived on that )
Just after his diarrhoea went away he had a rash on his face ,which we never took serious as he always had a bit of a rash..then something like a hickey on his neck (again I thought my husbands beard scratched him)
A few days later I come from work and notice a bruise on his forehead and chin (more reddish than blue) so we thought if this is an allergy to something it’s about time to find out what’s causing it.
Never noticed the pinpricks until the gp pointed them ,and he only had like 5-10 over the whole body .
That day he had blood tests done and got diagnosed..the bruising got at its worse that week ,this is when we can actually see the bruising and actually his platelet count was on the rise .
I just need to be reassured that we won’t spend our lives terrified of any fall his having or of any viruses he can pick up.
Or if you’ve been advised to do anything in particular .
I think they are ringing us soon to see a specialist,but no info given to us at the moment 😓

@MichelleDiaconu1989 I hope everything is alright, luckily we were discharged with no further follow ups needed but he is very accident prone and a real little boys boy, completely fearless and he doesn't show any signs of having a last effect on him 🤞🏼 x

@aspiringnurse was going to say that my partners mum died of leukaemia,so we know exactly how you felt .
Mine just started walking and it’s like he wants to always launch himself and bang his head on something .
There’s no chance of holding him in our arms as he wants to discover the world 😊
Would be really sad to stop him in any way from doing that 😓
Glad to hear all is well..I bet you needed that at that time 🤗

@MichelleDiaconu1989 we felt the same he was just starting to move round and start sitting up, he had a fair bit of bruising around his legs and on his head.. he had the hickey like marks on the back of his neck and around his shoulders, they very soon cleared up and you can just notice on pictures now where he's had the little rash on his cheeks.. your little ones platelets rising is a very good sign though, they didn't keep us in overnight when they were as low as 4, I can understand that though staff shortages etc, we only lived along the road from the hospital at the time.

I do remember he fell off the bed (didn't realise he could roll), and left the room for not even 10 seconds so that on top of what he was already going through we felt absolutely awful but he managed to escape that with just a fright and a lesson learnt he was very much able to roll!!

Have you read this page? It's very helpful.
www.nhlbi.nih.gov/health-topics/immune-thrombocytopenia

I had ITP in pregnancy. The doctors' only worry was really labour and delivery. Other than that they monitored it with weekly blood tests but nothing else. If it went low before delivery they would have boosted with steroids then induced. I gave birth with a platelet count of 60 with no problems.

A friend's son had ITP triggered by chickenpox. It resolved within a few months.

My daughter's 1st level was 5. We'd been out for lunch and I was tucking her top into her skirt to go to nursery when I noticed the rash. Panicked about meningitis and rushed her to the GP. She sent us to the local children's ward where she was admitted for a few days. Her 1st test shows a level of 5. She had to go to hospital every week for about 3 or 4 months for a blood test, but she improved quickly without treatment.

@HoldMyLobster thank you ,think I read all I could find ..it’s still a bit more reassuring if people like you tell me that it can all be ok..like it’s been told below ,reading stuff online can freak you out and you’ll become paranoid about anything!
Glad all is ok with you 😊

@sparkli so happy to hear that she’s ok..the thought of making the poor little one scream every week for months breaks my heart,but at least there’s big chances that my baby will be ok.
Thank you very much for replying to me.
Were you given any advice on anything you have to do to keep her well,or do they just think once it’s healed it’s healed ? I know that in rare cases it repeats itself ,but maybe there’s something we can do to at least try and avoid that ?

@aspiringnurse it’s me again😊 would you mind telling me if your little one had the one year immunisation?
My son is due to have it today and we are really crossed that no one warned us that he’s not meant to have it when diagnosed with ITP .
We’re seeing a haematologist this week to see my sons progress 😓

My DS had it just before he was 3 after a viral infection.He was bleeding from his mouth, it was incredibly scary. After a stay in hospital he has never had another incident thankfully , he was monitored for 2 years then discharged he is 12 now.

@MichelleDiaconu1989 hello lovely, luckily his symptoms and all ITP had cleared up by the time he had his one year immunisation however he was due to have his 12 (or 16 week immunisation - I can't remember exactly) when he did have the symptoms and diagnosis of ITP so we asked if it's okay to still have it but they told us it might be a good idea to wait until it's cleared and he's discharged.. they didn't mention anything about it we just thought if his immune system isn't fighting as much as it should then we shouldn't be giving him anything that might make him feel poorly..

Hope this helps xx

@aspiringnurse thank you so much..luckily we read it online but I wish the doctors would’ve told us.
It’s good to know that he could still have it when he’s given the all clear 🙏
Thank you again!

@Walkon thank you for your message !
It is so scary anyway not to say bleeding from the mouth !!!
Funny how all the info online says this ITP is more common in girls ,but there seems to be more boys with it.
Glad all is well now ..we’ve been told that his platelets count will never get to what it was before the ITP (it was 300) did yours got to at least 150 as they expect it ?

@MichelleDiaconu1989 you're welcome I know it's a bit of a pain when they don't let you know, I think because it's rare (ours was the first baby in the family or amongst friends to have it), they maybe don't know the effects of having immunisation and with a low platelet count we didn't want to take any risks.
We did notice though once he did have his immunisation he was absolutely fine no side effects but when they went to put a plaster on my partner said it was still bleeding more than usual (not a big amount) but he's got quite deep veins as do I and a few others in my family so I don't know if it was connected..

He's absolutely great now, going on 18 months and the happiest little thing you've come across xx

I'm afraid I am not as knowledgeable as you with the blood count, his doctor said a high number of people will only ever have one episode and it will never occur again. Thankfully that seems to be my DS. We had monthly apps, then 3 monthly then 6 months , all the while the blood was checked and normal.

He had to have an unrelated operation when he was 9 and because of the ITP had to have extra bloods taken.

Hope all works out for your little one.

I’ve been diagnosed with ITP since 2013 with my first pregnancy and now I’m 30weeks and was told by my midwife that my platelets are 118. I’ve sent an email to my consultant about having another blood test done so waiting for her to reply me. Also coupled with all the virus going on.

My son had it when he was about 5 I think. It cleared up within about 6 months I think. No problems since.