What platelet count were you when you had nose bleeds, gum bleeds or in stool?
What count were you when you started treatment?
What treatment did you have? Did it work?
My 20month old sons platelet count is currently at 9k and I'm fearing when the nose bleeds will start. Hopefully never!
He is yawning so much! He is very active and I'm so afraid in case he falls.
We are discussing treatment tomorrow with the haematologist and whether we will treat or hold off. Would you hold off? What treatment would you do? The platelet transfusion or steroids? We will have to have the bone marrow before any treatment as there is no bleeds. Has anyone had any complications due to the bone marrow?
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Shoni89
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Hi, my son thankfully has so far not dropped below 15 but he has had some terrible nosebleeds. At the moment he has reached 25 and apart from being cold, tired and a few bruises he is pretty good. My feeling if there is no bleeding would be not to treat as the side effects of the treatment can be pretty bad I believe. We have been lucky and so far we have got away with a wait and see outlook. Bone marrow fairly straightforward, slight discomfort afterwards though it's awful seeing your child going through these things. Hope you get some positive answers tomorrow.
I fear the platelets will drop more and it's so hard keeping an active boy contained. I have to ensure he doesn't fall and it's getting harder when the platelets are dropping. Fear is starting to take over. Does your little one feel clammy or cold arms and sweating alot? Is there anything you have changed in the lifestyle? Anything you think you have done to maintain a steady platelet level? Did your son get the bone marrow done? I am trying to hold out but platelet levels are going too low. He is down with a cold so I'm hoping his immune system will now focus on that. Fingers crossed!
Oh its so hard, my son had a cold just before Christmas and his platelets shot to 100 but they thought like you say that his body just fought the virus for a bit then returned to his platelets once he was better. My son was always a very hot boy always flushed and sweaty but since this started he is often shivering and clamy. At least he is able to understand he needs to be careful but he often forgets. He has stopped his football and has to sit out any contact sports in gym but other than that he is getting along just fine. It Is so difficult especially when you are first adjusting to it and I realise that your son is so young which makes it worse but it does get easier. We just try to keep to a healthy diet but have not really changed anything. Sorry im not alot of help really
You have been great help. I'm hoping his platelets have shot up just a little from this cold. A little relief is good. He had a fall about a week ago and we ended up in hospital. He had a hematoma on his head so if his platelets are up a bit hopefully it can heal quicker. I tried organic but don't see many changes. I am hoping to try natural herbal remedies or something if we have time to.
Please be cautious with herbal remedies as they may interact current meds; sadly there no herbal medication that will increase platelet production. Please stick to proven treatments children generally respond well. Be well
The natural herbal remedy which what I was considering was blood well..however I don't know enough about it to do it. My son is very sensitive to things. I would have to research every ingredient. His platelets are at 128k atm so I'm having a little break.
Fingers crossed for you tomorrow, will hear how it goes. You will get so much different advice but just remember at the end of the day you know your son best and you have to go with what you feel is right for him.
My daughter is 11 and she was having nosebleeds at 15k. She was given IVIG infusion. We were told a platelet transfusion wouldn’t be beneficial since her immune system would destroy them as fast as they were administered. She was diagnosed 2-16-18 and was airlifted to a children’s hospital. We have our first follow up Thursday and I know her platelets have dropped again. She also tested positive on the Coombs test so we will be trying to figure out what immune disorder is causing this.
Hey, when I tested positive on Coombs after IVIG we figured it may be a false positive because IVIG has a less known potential side effect of hemolysis, which happened to me (easy way to see this is by lower RBC after IVIG only), and would result in positive direct coombs. Just another possible reason to consider in case the Coombs was done straight afyer IVIG. Good luck!
They tested her before treatment. We go to our first follow up since the 16th so I’m praying for some answers as I’m certain her platelets have dropped again. Sunday she woke up with a migraine and slept all day and night. Yesterday she developed more Petechiae and she said she doesn’t feel normal. I wished I could take this from her, she doesn’t understand a lot of what’s happening to her and she asks why she has to suffer.
It's a tough one those feelings of fatigue and confusion and uncertainty on diagnosis and treatment... I hope for her, like many younger people, this will go away at some point to never return. The body can correct itself at some point, fingers crossed. Good luck.
Hi Shoni89
I know how you feel!! This is all very scary but in time you learn how to manage it..
My 2year old daughter was diagnosed 1st of Jan. Her count was 9 then 6 and 5.. We're still under 10.
I give her fresh fruit n veges every day.
Her hands n feet always feel clamy.
They were going to do a bone marrow biopsy because her hemoglobin started to drop (thank you Jesus its on the way up again)
The doctors haven't treated her as they're going with wait n watch approach to see if her body heals itself (praying it does) she's been on tranexamic acid for bloody mouth blisters which helped. Keeping her from falling has caused me some serious aniexty but im learning to deal with it and i turn to prayer.
Praying your LO heals fast and you find someway to deal with it all.. if you need to chat about anything at all im here 😊
The hematologists are considering treatment now, she said she hasn't seen any progress. We are holding off because he has come down with a cold and having high temps. He also has a massive swollen lymph node in his neck that we got antibiotics for today as he has infection and tonsilitus. So hopefully after this all passes fingers cross his platelets might go up. Around the 15 mark is the aim. Safe level. I can't believe youre still under 10 and they are still holding you out. You are very brave. My LO has multiple problems going on at the moment, so I think the steroids will help with alot of things. I think I will hold out a little longer. It's scary, we trust ourselves to not let them fall. My sons diet has changed and he is rarely eating, I struggle every day to try get him to eat. They said its probably painful for him for to tonsils or infection. I wasn't sure clammy was a symptom, I started to worry it was the start of something new again. I'm glad it's not something new. I definitely share the anxiety with you with the falls, my heart stats beating very fast when he starts to fall.. I'm getting quick reflexes now lol
Her next appointment with her hemo is in 3weeks ..the waiting in between appointments is so hard! Xx
His cold must be getting better as his platelets are increasing. You said in your last post that your aim a safe level of 15K, it is not. Platelet count of 50K is a safe level, 128K is great! Hopefully his counts will continue to increase as his infection is eradicated. Be well
He had an infection and refused to drink. He had tonsillitis. He also had a cold. We have spent so many days at the hospital and finally he seems to be getting better. I just hope his platelets were not going up because his immune system was very busy with his infection and cold and now that's gone, his immune system might turn back towards his platelets. Alot of people seem to have that happen when they get sick. We were considering treatment Next Week as his platelets were at 9 and there was no progress. His platelets were only going down and not up but 128 is an awesome count. Just fingers crossed it stays up. I will surely keep you updated with his next bloods on the 13th 😊
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