ITP Support Association
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ITP

ITP

I started noticing bruises on my then 18 month old baby after his immunisation. After his immunisation I kept taking him to Dr with worry about petechia rash. The Dr advised me it would go. I put it off and told myself they will go given his age.

The bruises went over time but he got more but then he got bruises on his bottom and back. I knew he had not hurt himself as I had been with him 24/7 for over a week as I was on holidays with him and had full supervision. That is when I knew something was wrong. I took him to the Dr and told him the bruises on him were coming from nowhere.. I felt silly to say I had not heard of getting bruises for no reasons. I demanded answers. He then requested a blood test. I was extremely nervous but his platelet count was at 32. We went to emergency and spoke to paediatritions. They were going over him asking if he has vomited, blood in his gums, poop and nose. Checking if his lymph nodes were swollen, spleen and asking a million other questions. I felt the symptoms related to lekemia, so I asked as they seemed relieved then they told me they had to rule that out first. The drs also told me the red cells or white are usually affected with lukemia..i was relieved but had no idea what I was facing. They told me my son has itp. I had no idea what that was. He started having regular weekly blood tests, but his platelets have dropped from 32, 22, 20, 18, 15, 11. I have been in tears cause I don't know what's next, when they reach nothing. They have told me they won't start treatment because he doesn't have nose bleeds, gum bleeds or stool bleeds. I was so angry they wouldnt start treatment and was angry they were waiting for it to get to nothing...like a test puppy bit they explained the treatments and that bone marrow testing would have to be first to rule out lukemia as the steroids can mask Lukemia. The treatments are only temporary and won't cure itp they advised me. That treatment can be much worse than the disease itself. They advised me they think his case is viral and can heal on its own. My boy had a bump to his head and was was taken to hospital but had to be transferred. The bump was quite minimal however it's huge to him due to his platelets. We are now considering a helmet for him as this was a big scare and we had to stay at hospital and so obs every two hours, he had a drip hooked up and much more. It's was awful to watch him go through. Any tips or ideas on how to keep him safe? This is breaking my heart!

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Hi, so sorry to hear you are going through this. Its very difficult at any age but when your son is so young it must be impossible. My son is 9 and was diagnosed last May after a year of terrible nosebleeds...he became covered in huge bruises. He has received no treatment and we are just watching him, having spoken it through with doctors and also looked into treatments elsewhere I believe that this is for the best as the available treatment side effects are pretty bad. It is very hard watching my son out playing with his friends and wee brother and it must be very hard when your son is too young to understand the dangers. I hope you get some positive answers soon. :-)

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Dear Shoni89,

My heart is with you and your adorable baby.

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It is very difficult at his age. He is so active. My biggest fear is wondering if it could be lukemia. I have that fear because it's not ruled out and his appetite has changed, he has lost a few kilos, he is getting more tired. He has bloods on Thursday. I have really had enough. I have become so emotional and lost alot of sleep. It's put me in a depression with anxiety. His father tells me to not worry, but how can you not worry when platelets are at 11! He has been through hell, 2x bloods a week. He had a canula put it the other night when we stayed at hospital and it was awful listening to him scream. He doesn't understand why he is being hurt. Today I went to rebel sport and bought a protective baseball helmet, it's lightweight and he doesn't even know he is wearing it. Has anyone tried supplements? I'm currently giving him aloe Vera juice. I read about a product called bloodwell? I'm so sceptical to try products given his age, but anything is worth trying other than treatment?

Your son is brave, to have put up with this for almost a year. I get let down and have no hope knowing there are so many out there that have this and have had it for a very long time. But the hope he is still here 😊. When the platelets were dropping I thought he was nearing death and it's such an awful feeling to feel so hopeless to the fact there is nothing I can do to help. The feeling of uncertainty is very overwhelming. I hope your boy is able to beat this soon enough, are his platelet levels safe?

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I hope you get some positive answers soon. And its great that hes happy to wear the helmet at least that will give you some peace of mind. We too thought it was leukaemia at the start but thankfully it was not. It will get easier once you know for sure what you're dealing with. Hopefully your sons itp will disappear just as quickly as it started as many seem to make a quick recovery. I find the support in this group is a huge help, my son suffers from mood swings and fatigue and the doctors say there is no connection but reading posts on here confirm this is perfectly normal for itp sufferers. Hopefully you've had some better news by now. Keep in touch, you're not alone with this.:-)

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Nplate keeps my numbers regular.doing rituxan it is for ITP to put me on remission. First infusion I was really tired a hey all week but my numbers are up to 355000 great to be high normal range. Had another today have to have 4 of it works to send me in remission will just have to gave my platelets checked once month and in a year do another 4 week treatments. It helps 60 percent of people that might be what you need to check in on for little one. But babies have a high persentage of it just going away. After six months to a year.

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What a beautiful boy and a courageous, strong Mom. I’m in the US and the treatment would have been much different. He would have been evaluated and a treatment plan established by a pediatric Hematologist and treatment initiated. Children generally develop ITP after a bacterial or viral infection that overwhelmes and activates the immune system. Good news is they respond better to treatment better than adults.

Check out jamesheather1 from Australia; he was diagnosed at 17 received treatment which put him in remission for over 10 years during which time he married and had two beautiful children and a fairly healthy active life. Unfortunately James relapsed recently is receiving treatment and will no doubt beat it again. Your son is young and research is on going. Learn as much as you can about ITP and continue to advocate for your son. Be well:)

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As per

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As per is clinical experience homeopath y is best for i.t.p.please try it as soon as possible.

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Hi Shoni89

My heart is with you and i know how u feel. Its the worst feeling in the world. My 2yr old daughter was diagnosed 2months ago with a count of 9 then it went it down to 5. Her hemo wants to wait and watch to see what her body does. Her hemoglobin also dropped but is on the rise again.. iv started her on iron supplements.

Most days shes totally normal then other days she seems more tired than usual and her colour is a little off, shes also alot more irritable than she was before.

She has the bruises and petichaie also bloody mouth blisters :(

Praying for both our LOs xx

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It's so painful to watch it drop and have no idea what's going to happen next. Being new to itp you sort of have no idea. We are also waiting and watching. Regular bloods twice a week. I've started him on organic food, see how that goes for a bit. Keep in touch and let me know how you go.

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Will do 😊 you too, im here if you wanna talk 😊😊

its a tough journey 😔

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