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TOPIC: For the Newly Diagnosed

For the Newly Diagnosed 9 years 3 months ago #122

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Many parents with newly diagnosed children feel confused and afraid. There are so many questions and few answers. The PDSA strives to educate parents to try to alleviate fear and confusion. Below is a list of FAQ's which should help.

Please know that most children are acute, meaning the ITP will resolve in a short period of time (a few weeks or months). If your child does become chronic, this does not mean it will never go away.

ITP can be serious when counts are very low, however, with careful monitoring of counts and symptoms, most children do very well. There are quite a few treatments available and newer ones are being developed at this time.

Many parents wonder about their child's future and worry that they won't be able to lead a normal life. Please be assured that there are many adults with ITP living perfectly normal lives.

You can learn from the experiences and wisdom of other parents who have gone through it by reading and posting on the message board. Hopefully, you will not feel as alone as you do now and will gain the knowledge necessary to cope with ITP.

www.pdsa.org/about-itp/in-children.html
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Re:For the Newly Diagnosed 9 years 3 months ago #608

  • tali
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Hi, we have a 3.5 months old baby girl just diagnosed with CAMT. Is your association about this disorder too? There seems to be so little information about it
Thank you

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Re:For the Newly Diagnosed 8 years 9 months ago #7494

  • jaycharness
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These are great words to follow and live by, please continue using this great discussion forum

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Re:For the Newly Diagnosed 8 years 5 months ago #10646

  • menminime
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i actually stumbled on this site as I was googling ITP n children. I do hope that this helps to understand more about this :unsure:

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Re: For the Newly Diagnosed 7 years 7 months ago #18700

  • 1975wrigley
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Hi my daughter was covered in bruises and petichiae GP did full blood count and platelets came back as 14 so we went to the hospital and a repeat blood test they were 17 then next day they had doubled to 34 and today they have doubled again to 68. The drs think she may have had it for a while because her red blood cells are smaller than they should be. Does the quick rise mean that they should now keep increasing and that it was most likely only a acute episode that has resolved quickly without treatment.
Thanks Lisa

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Re: For the Newly Diagnosed 7 years 7 months ago #18710

  • Sandi
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Lisa, a quick rise like that is a very good sign and I'd be inclined to believe this was an acute episode that occurred recently. Has she been sick at all? That could do it. It would be a coincidence to have had low counts for a while but suddenly rebound when it was discovered.

I've never heard that the size of red cells mean anything with ITP.

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Re: For the Newly Diagnosed 7 years 7 months ago #18718

  • 1975wrigley
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Thank you for your quick reply, she hasnt had a specific illness just a prolonged cough and a one off spike in temperature. She did have a nose bleed a week prior to the blood test and 5 days before blood test the bruising started. However she has had random small nose bleeds nothing to concern me over the past year so I think that is irrelevant. I am pretty confident that we have seen the end of whatever it was and that her next blood count would be elevated again. They are going to do iron studies in a months time as they think she may been anaemic.
Thanks
Lisa

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Re: For the Newly Diagnosed 7 years 7 months ago #18719

  • benny
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Hi Lisa,
as my counts were dropping from 100 to midd 40,s I got the occasional nose bleed and consided it was nothing to be concerned about. However I now think it was caused as my counts dropped and my body adjusted to the new lower counts the nose bleeds stopped. Then same again in a few months time etc,etc.

Also I get blood blisters in my mouth occasionally which last for 24hrs and go away on their own. Have also put this down to the body adjusting to the new lower counts. My counts have gone up at different times, but the main trend has been down at a slow rate over the last 2-3yrs.

When my Haemoglobin is low, I feel tired an take iron tablets which seem to help, but who knows?.

I hope you are right when you say "we have seen the end of whatever it was, and that her next blood count would be elevated again". ITP brings with it a roller coaster ride on your emotions so its best to prepare yourself for results which can, and do go in opposite directions to what you belive an expect.

Wishing her lots of platelets
Benny.

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Re: For the Newly Diagnosed 7 years 7 months ago #18720

  • benny
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Hi Sandi,
I have read that "if you have a shortage, or deficiency, of iron in your body, your bone marrow will make small red blood cells that don't contain enough haemoglobin. These red cells can't carry enough oxygen to your organs and tissues."

ref: hcd2.bupa.co.uk/fact- sheets/html/anaemia iorn.html

Rgds
Benny.

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Re: For the Newly Diagnosed 7 years 7 months ago #18721

  • Ann
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Nothing to do with ITP though, which I think is what Sandi was saying.

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Re: For the Newly Diagnosed 7 years 7 months ago #18725

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Yup.

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Re: For the Newly Diagnosed 7 years 7 months ago #18732

  • HappyMomJLK02
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Hello, this all started when my 13 yr old Son pulled his tooth last Wed nite. He bled alot and so much that he was nauseous the next morning. Then Friday after basketball practice he texted me and said he had a rash all over his arms and legs. I took him to the Dr and she told me it was Petechiae and told me to take him to Scottish Rite Hospital. His blood platelet count was under 10,000 and white blood cells were low also. we spent the night and the next morning it wasn't any better, but they sent off blood samples to Emory and they came back negative so we got to go home. they diagnosed him with ITP. His mouth is still bleeding and he's had a couple nosebleeds, but is doing fine. We have another appointment on Thursday. He's very active in sports and this scares me that he won't be able to play. This whole thing is scary to me, having to watch him and have him be careful. He's always getting bruises on his legs from football,basketball, etc. I'm glad I found this website, hopefully it will help :-)

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Re: For the Newly Diagnosed 7 years 7 months ago #18736

  • SusanT
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If his white cells continue to be effected, as well as platelets, then they need to consider Evan's Syndrome as a diagnosis. That is when 2 blood lines are effected. That is the case with my son who is 14.
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Re: For the Newly Diagnosed 7 years 7 months ago #19138

  • LesHight2
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:) My son was diagnosed with ITP last week, he is 4 yrs old and very active. His CBC was 11 when he went to see his doctor who had me take him to Childrens Hospital for overnight observation, with the IVIG it went up to 13 but when he went for a follow up CBC it dropped again to 9. I was told it normally goes away but i am just worried since his number are dropping.

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Re: For the Newly Diagnosed 7 years 7 months ago #19140

  • Megan
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My daughter was diagnosed in Sept. Her first cbc was 1. The next day some of her slides were 0. Two courses of IVIG didn't work for her at all. She responded to prednisolone and had almost normal counts, but when she discontinued, her counts dropped for two weeks and now she's on a smaller dose to see what happens. You'll read that for most kids it goes away in 6 months, but I think that what happens during that time is so varied based on the child that there isn't much to read about what actually happens during that 6 months. Does your son have active bleeding? What are they trying next? I think you'll find a lot of support on this board. When you begin to understand ITP, I think you'll also relax a little and discover this is a very manageable diagnosis, while at the same time completely frustrating as in fluctuating counts, constant blood draws and having to tell your child they can't play like they used to. Good luck and hang in there!
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Re: For the Newly Diagnosed 7 years 7 months ago #19142

  • LesHight2
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He has some bleeding in his mouth on the day he was diagnosd but since then he hasnt had any. Its just hard because this is hos first year at school and he cant go to gym with the other kids or even go to recess because of ITP, he had to stop karate and he understands he has ITP but i feel like his childhood is being taken away from him while he is dealing with this. He is very active and i try to find things that are "safe" for him to do and try not make him feel like he is being punished. They said they want to try predinsone but the reviews i read about it scare me. :( im not sure what to do. he goes weekly for a cbc and hopefully this week it will be higher then it was Tuesday. He hasnt had any treatment since last week and i think the doctor is waiting for it to cure it self. Which upsets me more.
I think this site is amazing, a co-worker found it for me and i am happy i came on it, i feel better already talking to other parents, and reading how they deal with ITP.
Thank you for taking the time to not only read but respind to my comment.

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Re: For the Newly Diagnosed 7 years 7 months ago #19153

  • alisonp
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Hi Megan and LesHight

Most young children who get ITP get better and it doesn't reoccur. Hopefully ITP will only be a bad memory for you in six months time.

If you are really unlucky and and ITP is still with you next spring, then as Megan says its a condition that you child can live with. Its a pain in the butt illness, stupid, pointless, and unpredictable, but very unlikely to result in really severe problems. Even if your child continues to have low counts, they can have a nearly normal life, only slightly modified by the restrictions of a low platelet count. And even if your child continues to have low counts, it doesn't mean that they will never get better. Remissions can happen at any time. My son is currently celebrating his first count this year over 30K - so far he has celebrated last Friday's count of 53K with rugby, football, and a few fairground rides. This weekend he plans to hit the BMX track to celebrate a bit more!

Some advice?

- try not to worry too much (easier said than done I know)
- try not to get too hung up on numbers, concentrate on symptoms instead
- don't worry about timescales or whether its acute or chronic
- let you child have the most "normal" life that your sanity can cope with!

Good luck, Ali
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Re: For the Newly Diagnosed 7 years 7 months ago #19161

  • Sandi
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LesHight:

Platelet counts fluctuate constantly, so going from 14 to 9 doesn't mean much. If he was tested an hour later, he could be at 12.

Please do not feel as if his childhood has been taken away. It's only been a week or two of his life so far. He has a long way to go! ITP could go away as quickly as it came; it's known to do that. If not, you learn to adapt and he will too.

You have two choices; treat or not treat. If you choose not to, then you will have to be vigilant about the activities your son can participate in and he will be limited in that way. If you choose to treat and his counts respond, he can go back to normal play. He will however, be subjected to possible side effects. Prednisone does have a long list of nasty side effects, but sometimes a low dose for a short period of time can raise counts to an acceptable level without too many side effects. Most of the treatments do have side effects, but there are treatments that can be tolerated fairly well. Everyone has a different experience though, so you have to actually try one to see how it would affect him. Prednisone can raise counts quickly if one is responsive. I would go from 8 to 250 in a week.

I know it's hard to make these kinds of decisions because you only want to do what is best. That is nearly impossible to determine though since you don't know how your particular choices will work out until after you've made them. Just go with your gut; you will do fine.
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Re: For the Newly Diagnosed 7 years 7 months ago #19287

  • Megan
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LesHight, my daughter can't participate in gym yet either, but I'd rather have her sit out for now than have to worry about whether or not the teacher saw if she got hit in the head or ran into another kid. I don't want to treat her like she's fragile, but I don't want to be too lax with it either. I think as time passes we'll become more comfortable with finding a balance. I think we all go through an adjustment period where we adapt to the new normal.
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Re: For the Newly Diagnosed 7 years 3 months ago #22108

  • cjnk4
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Hi...my 21 month old daughter was diagnosed with ITP last week. It's been a very stressful week for us. Two weeks prior to the diagnosis, she had developed some petechiae on her cheek and legs. We didn't think much of it at first - barely noticed it - but after speaking to the nurses at her doctor's office, we brought her in to the dr first, who suggested a blood test. We got the test and the next day, they told us to head right over to the cancer center for further testing. Our hearts dropped. Her count was orginally 13,000 - doubled to 27,000 the next day - and after our follow us this past Monday, dropped back to 17. It's very scary - I never heard of this until this past week. It's nice to find a place where people understand...:)

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Re: For the Newly Diagnosed 7 years 1 month ago #23449

  • aholt
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My 7yr old daughter was diagnosed 5 weeks ago her count was at 2,000. We had our first IVIG treatment and her counts jumped to 240k but have gradually dropped over the last 5 weeks and now we are at 22k. For the last 3 weeks we have been batteling constant ear infections and now we are on our 3rd round of antibotics. Is it a common for ITP patients to have such an issue fighting off infections. Her white blood count has never been elevated.

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Re: For the Newly Diagnosed 7 years 1 month ago #23461

  • Sandi
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No, ITP itself does not contribute to infections, but some of the treatments can, namely the immunosuppressants. IVIG is not one of those.

Infections though, can certainly trigger low counts, as can antibiotics.
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Re: For the Newly Diagnosed 7 years 1 month ago #23970

  • r_p
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Hello

Our 2.5 year old son has (chronic) ITP. His platelets since the past 4 months (after they started monitoring) have always been between 5-20K, averaging about 12-15K most of the time.

I suspect that the platelet count has been low since he was 1-1.5 years as we have been noticing relatively easy bruising on legs since then. It was only around his second birthday that we got a CBC done and found about ITP. Initially our pediatrician insisted that it is acute and will go away in 2-3 months but things haven't improved for us.

He gets his CBC done every few weeks now but has never been given any medications (IVIG/WinRho etc.). He has also had two large bruises (once on the forehead and once on the cheekbone) over the last 6 months from minor playing accidents. Both times we noticed a large swelling that took a while to subside.

He also has skin eczema and some food allergies, mostly to tree nuts but also to milk and eggs. He has had milk and eggs a lot in the past but we have stopped it recently as were read somewhere that it could be a trigger for ITP (though our doctor seems to disagree). Unfortunately the platelet count is still low (15K today) but we will continue to test.

At this point I am not sure what's causing ITP. It could be environmental, related to his other allergies or perhaps is an after effect of MMR vaccine (given at 1 yr) or something entirely different.

From reading the literature (I work at a university and have access to journals) it seems that most kids with ITP do okay and internal bleeding in brain is extremely rare and often accompanied by instances of bleeding elsewhere (in urine etc.).

For now we take precaution and limit contact sports and he always wears an helmet when playing outside. Other than ITP and some eczema on hands/legs he is a wonderful, active 2.5 yr old.

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Re: For the Newly Diagnosed 7 years 1 month ago #23975

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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RP - are his platelets normal-sized? Has he seen a hematologist?

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Re: For the Newly Diagnosed 7 years 1 month ago #23981

  • r_p
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Sandi

Yes he is being monitored by a pediatric hematologist. I think his platelets are normal in size (just being destroyed faster). Till date everything else (blood work) came out to be normal.

Also thanks for all your help here on the forums. Your posts have been very helpful.

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Re: For the Newly Diagnosed 6 years 11 months ago #25386

  • Harper
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Hi, my daughter Harper was diagnosed three weeks ago with ITP. We went into the ER for Vomiting and Diarreah, she was admitted to get some fluids because she was dehydrated. When we got admitted the ER mentioned that her platelet count was a little low but nothing else was said until we were going to go home and the Dr did a CBC with Diff early that morning to check and make sure everything was back up. Her count had dropped to 27 from 127 when we were admitted. A Hemotologist was called into consult and we did a round of IVIG that morning. The next day count was up to 56 and Dr decided to wait one more day just to make sure count was staying up. The next mornign the count was down to 2, glad we waited! We continued with two more rounds of IVIG over the next two days. Counts went up and after 14 days in the hospital we went home. That Sunday we noticed That Harpers Color was almost Grey looking and she was bruised around her eyes and looked like she had not slept in a week. We then took her back to the ER it was Sunday night and her count was 932. Agian admitted and we got a bone marrow biopsy done that came back fine. Thank the lord!!! but platlet count still staying up above the 800's has anyone else ever had this happen if so how long before they went back down?

Thanks for listening to Harper's story and would love to hear about anyone else who is or has been in our cituation...

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Re: For the Newly Diagnosed 6 years 11 months ago #25425

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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She was admitted with a platelet count of 932? What am I missing?

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Re: For the Newly Diagnosed 6 years 11 months ago #25430

  • Ann
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It does seem odd. They give a whole load of IVIG and then are surprised when the platelet count goes up. What did they expect to happen? The count is fine, it will slowly come down.

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Re: For the Newly Diagnosed 6 years 11 months ago #25434

  • Harper
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Yes she was readmitted. She had bruising and she was just sleeping all day and night and did not look good. She was not herself so they kept her for observation that extended four days. We are now just waiting for the count to come down a lil bit. She also had the other blood lines down red cell and white cells were down. Thats why they wanted to do the marrow. I am still very confused about all of this and she is so young to be going through it...

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Re: For the Newly Diagnosed 6 years 11 months ago #25435

  • Harper
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Thats what we are now waiting on. For the counts to all stablize.

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