ITP Support Association
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Behaviour links

Hi I'm new here. So Thursday morning my 3yr old came out with sores and blood blisters in her mouth by the evening she was covered in the tiny rash like bruises as well as lots of large nasty looking ones. I'd tried to get doctors appointment before the bruises came out but no luck so had phone consultation and was booked in for the morning. Obviously ended up at A&E that night once bruises appeared. Find out early hours Friday she has ITP and platelet count of 1. As we had Been kept in, we was gladly in a side a room, 5.30am she wakes screaming I take her to the toilet but she's fighting me.. Bitting, punching and scratching at my face so I take her back to bed, she climbs off the bead still screaming.. Not a normal scream, a terrifying scream. She runs to the other side off the bed, her eyes bulging and holding her hands up as if guarding herself from me amd shouting no. I come to that side of the bed and she sinks to the floor still screaming and won't let me touch her. Nurse then comes in and picks her up and manages to get her bk to sleep (I'm sat on the floor in bits cos she wouldn't even let me touch her)

Next day (Friday) she is fine all day and has the intravenous immunogenicity given and we stay again that night... Slept right through the night.

Saturday we get up and blood taken and count only up to 2 but we can go home and come bk Tuesday amd have more medication if platelet nit at right level.

Sat night goes to sleep fine and in a nice sound sleep then wakes up 12pm ish screaming, I put her on to the potty and she goes. I take it to clear it amd she's really screaming again, as I come back into the bedroom she Sat by the gate at the door and jumps for my leg and try to bight me I tell her off but she still making this horrible screaming noise. I put potty back amd shes crawling in to the kitchen and I go in and try pass her a drink she screaming and pushing it away with force but also saying she wants. I get on floor and try and hold her to calm her but she nit having any of it wile she's trying to dig my eyes out of my face. So I stand up with her amd sit her in the counter amd try to give her this drink, she screaming so much I wounder why the police aren't knocking my door down as there's no way that scream is going unnoticed. I come over feeling tearful amd faint so I lift her to the floor where she sits with big terrified eyes screaming at me, I shamefully sink down in to a corner crying and as I start sobbing out loud she seems to snap out of it and see me. She then climbs on my lap and strokes my face and says mummy don't cry, why are u crying?.... Like she wasn't even there all that time!

So anyways what I'm asking is is this something to do with the disorder or do pimple think maybe it's just stress and confusion and that's how her body has decided to deal with it because I've never experienced this before and I honestly felt terrified myself.

Please help?

P. S sorry sooo long

9 Replies
oldestnewest

So sorry for you. I have no words of wisdom, but do think you need to insist on medical help. I do hope your little one responds to treatment soon.

Sending my love

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oh my, I'm so deeply sorry. It mist be a traumatic experience for the both of you. I started off with a diagnosis of ITP but upon looking deeper my doctors confirmed connective tissue disease as low platelets are not the only factor I have. At its worst, my platelets went down to 2 and I spent a week at hospital. I felt extremely tired and sleepy all the time and crank because I couldn't just lay down and nap. Its an I describable fatigue. I also had excruciating pain. My head, my legs, everything hurt. A lot. I would tell my husband every night that all my bones hurt. There was a fever too. So your little one may be feeling all these things with low platelets and my be terrified about what's happening and perhaps she cant verbalise what she's feeling. However I would recommends thatc

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sorry, i was saying that inwould recommend that you speak with her hematologist and ensure that they look deeper. Because you would wish to ensure that you rule out all other more serious possibilities. At platelets of 2 they told me i could have severe internal bleeding. And even suggested that a tiny bump on the head could lead to intracranial bleeding etc. Not intending to scare you or anything, jist saying that she could be going through so much and best to seek medical advice to ensure its not more serious. Wishing you and your little one the very best. Hope her platelets come up soon.

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I think that your little one is experiencing night terrors which might be connected to the stress she has due to the low platelets. My son had night terrors and they are terrifying for the parent, believe me, although he did not have any underlying health issues like your daughter. He was just stressed because of school - he was 6 at the time. However, I think it would be worth mentioning these episodes to your doctor, he/she may have a strategy to alleviate them. In the meantime, try to remain calm and have a winding down period for your daughter before bedtime, with as little excitement as possible, a warm drink and bedtime story may just do the trick. And most of all do keep calm yourself, don’t let your daughter see how worried you are, as she will pick up on that, which will only add to her stress. Good luck.

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Lynney is correct. So sorry you have to deal with Night Terrors AND ITP. my oldest had crazy night terrrors. They grow out of it. Keep your head up!

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I am surprised they sent her home with a count of 2. I would absolutely make sure they check out other possibilities as mentioned above. Have they put her on some sort of steroid? That could account for some of the aggression. I pray that you both get relief soon.

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No not given any steroids but touch wood no more since I've been waking her 2hours rs in every night. She now up to 36 but yes I was surprised she was sent home on 2 x

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God how awful, must be meds, needs hospital, be strong, feel helpless but worry about you.

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Sounds like 'normal' night terrors but as already mentioned, they tend to feed on levels of stress. So as calm as you can manage to keep it in the day for yourself and your little one the better for night times. So hard with all the ITP. Definitely keep checking in with your doctor. Have you got a friend who could help a little but listening to you too? Or looking after your little one while you get a bit of time to yourself? This might feel selfish but you will come back to your home all the more refreshed. With best wishes, I admire parents of very young children with ITP. Xxx

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