ITP Support Association
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2 year old recently diagnosed. Help!

Hi all :)

My 2.5yr old daughter was diagnosed 4weeks ago. Her count was 9,6 now 5. Her hemo wants to go with the wait and watch approach. Im struggling with the constant panic of making sure she doesn't fall or trip. She has slight bleeds from her nose and mouth but nothing that doesn't stop on its own. Iv searched the net high n low looking for stories from parents who've had a child with an acute case, because the doctors seem to think this might be an acute case (God willing it is!)

Struggling with this.. do i treat or not??

Thx

Gina

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Hi Gina,

My son, 7yo, was diagnosed last January 6 with acute ITP. His count was 21. He was given IVIG and his count increased to 119. I give him sweet potato top juice 4x a day everyday (until this day) and his count increased to 180 after 1 week. Yesterday he had continuous bleeding due to his falling temporary tooth so his platelet was checked and it dropped to 131. His doctor said that it will be normal for the platelet count to go high-low at times. We were also advised by his hemo to be extra careful because he bruises easily...

God is in control 🙏🏻🙏🏻🙏🏻 praying for your LO..

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Hiya, sorry not sure if my message sent. Just wondering what sweet potato top juice is? Is it just sweet potato juiced through a juicer? My son is also 7 and I'd like to try this xx

Thank you

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Morning.....my 12yo was diagnosed Nov 29 with a count of 0 and admitted and recieved 2 IVIG treatments. Well to say the least she has been at 1 for the last 5 weeks.....and current dr said to watch and wait. Went to her school yesterday to set up a Health plan for her. We have a second opinion on Monday with new dr and I am hoping he will treat her. So yes my dr told me to "ride it out" but thats what they do with pediatric patients

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So sorry your 12yo and yourself are going through this 😔

So didn't respond well to 2 rounds of treatments?

Im worried that the side effects of treatments is worse than what shes experiencing now..

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Hi, my son was diagnosed back in may after suffering horrendous nose bleeds for a year beforehand. He has so far needed no treatment and the doctors are just monitoring him. I hope it stays this way as as far as I can tell the worst side effects seem to come from the treatment rather than the itp. My son is now living a fairly normal life he avoids contact sports and his school know how to deal with anything should it arise.He suffers from tiredness and achy legs, nosebleeds and bleeding gums as well as some impressive bruises. I am first to admit that the first few months were very hard, I panicked every time he played, ran jumped. I was just tempted to wrap him up in cotton wool. Now I have my head around it though I can see that within reason it is important for me to keep my fears to myself and let him live his life.He thinks of his blood as special! I hope things get easier for you. Ann

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Thank you for your responses :)

This is all so hard to deal with :( taking one day at a time. You're right Zronquillo God is completely in control.

Do you find your kids tire easily? Or have mood swings?

My daughter has been so irritable and moody since she was diagnosed .. has anyone else experienced this with their child?

Praying for all your LOs may those platelets rise!! :)

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Thank God my son is very active and no mood swings and lives his usual normal life as a student, but he has to stop his sport activities like soccer and basketball 🙁 but still convincing him though to try swimming to boost his immune system..

He had Kawasaki Disease when he was 2 and now ITP, not sure if both are related,, but we are trying our best to live a normal life, though we have to be more precautious of his activities and be more focused on healthy living 😊

This has been an eye opener for the whole family as we have been dealing with other auto-immune issues as well.. Pray, hope and trust God 🙏🏻🙏🏻🙏🏻 and for our part, let us take care of our body and keep a healthy lifestyle 😄

Praying hard for our LOs!!!

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Yes, totally, tiredness, mood swings and he feels the cold terribly if his count is down. Have mentioned this to doctors though and thet say there is no connection, there definitely is, we are the ones who know our children and can see these changes. I am still hoping it will disappear but who knows, hopefully you're daughter will bounce back asap!!

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He is likely to feel the cold if his count is low. Many people who take blood thinning drugs feel the cold, so it makes sense. Doctors do not always know best.

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Exactly we know our children. I also mentioned this to her doctor and she said that's not a symptom but there's a definite change. Praying for your LO x

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Dear Ginapina, what treatments did your child receive? Fatigue and irritably are common complaints of those of us with ITP. As an RN, I have a problem with doctors who take a waite and see approach. What’s her platele, hematocrit, hemoglobin and RBC counts? Google ITP signs and symptoms, causes and treatment options, will get reliable scientific information. Stay away from remiedies such as sweet patato juice, papaya root extract the have power to increase platelets. Please see Anthony Heard’s (tip administer) post on site.

Fruits and vegetables are an important part of a healthy diet but have NO special powers to increase production of platelets:) kyriak51

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Hi ginapina, my son has had itp for almost 2yrs now.. Counts are up and down but I know when his counts are low low(under 10) because of extreme bruising & pupura.. Also over emotional and clingy. Also we live in Scotland and I noticed last winter and this winter counts are slightly better. Hemotoligist says no connection and auto immune disorders tend to be better in summer not winter but we are all individuals so I will continue to try and find a reason... He is an active boy and doesn't do contact sports but his swimming is amazing as it is the only thing he has been able to be consistent with(bit embarrassing for me when he is very bruised at the pool though)😒..

We have adjusted to our situation and still have a good life and hope as doctor says 80% of childhood cases make full recovery. Xx

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Yes that's been my daughter for the last 4 weeks.. super clingy and emotional. How old is your LO?

I havent taken her to the pool yet.. ( have to admit im too a little embarrassed about the other mums are going to think)

Does your son have any treatments done?

God willing this will all be just a bad memory one day soon x

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Hi, what is sweet potato top juice? Is it just sweet potato juiced through juicer? I'd like to try this for my son's itp case although it is a fight to get juices into him😒.. Thank you xx

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😁😁 same!

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My 5 year old was dx about 18 months ago, I also did the waiting game. Now she is on promacta only thing that has helped her raise platlets I don't think it's a bad idea because it can clear up on its own.

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Hi Irivera1

Your poor baby..hope shes doing ok with it all

How long did you do the watch n wait before treatments?

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