Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1
  • 2

TOPIC: For the Newly Diagnosed

For the Newly Diagnosed 6 years 2 months ago #30752

  • hartamanda
  • Offline
  • Posts: 2
  • Thank you received: 0
hi our 4 year old daughter was just diagnosed with ITP and im having a hard time understanding it. wondering if there is any information out there to read. they are not sure whats causing it and. Does anyone have and advise?

Also is there any types of food or vitamines that she should be eating to help improve the platets in her body i'm just trying to figure this out and what i can do.

please any help or suggestions or people i can talk to would be helpful cause this is so mew to us

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 5 years 10 months ago #33652

  • skdemirtas
  • Offline
  • Posts: 1
  • Thank you received: 0
Hi - My 2 1/2 year old was diagnoised about 1 1/2 months ago. I started noticing a lot of bruising that wasn't going away so i took my little one to her doctor and they did a blood work up on her. they called me back that night and told me her count as a 11 and that she needed to go to the hosiptal first thing in the morning. Sooo... we brought her to the hospital in the morning and they did another test .. this time she was at 14 ... docs evaluated her and diagnoised her with ITP and then gave her a treatment of WINROE (Spelling?). We were scheduled for an appointment the following week and her count was 250,000!!! So Doc said to come back in about 3 weeks - which was 3 days ago - and her count is down to 76 now... doc says that we need to bring her in this coming Thursday for another count and if she has gotten lower will require another treatment. I hate to put her through this again because after the last treatment she threw up continuiously for about 1-2 hours... ugh... my poor baby! Anyway .. I've got my fingers crossed that her numbers will go up .. this is all so confusing ..!!

Thanks for letting me vent!! :)

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 5 years 5 months ago #37554

  • Roachgirl
  • Offline
  • Posts: 1
  • Thank you received: 0
My 10 year old daughter was just diagnosed with ITP today! Over the last several months we noticed that she was getting an excessive amount of bruising on her legs and arms. At first we didn't think much of it because she is a pretty active kid and she is just naturally clumsy (a trait handed down from me) girl. We would ask her where she got the bruises and her response was always the same "I don't know". Then she started getting gushing bloody noses so I took her to our family doctor and he ordered blood work. I took her yesterday morning to have her blood work done. I received a call this morning from our Dr telling me that I needed to take her to the hospital immediately because her platelet count was less than 1000. Not knowing what a normal platelet count should be but knowing that it must be bad if the dr is calling me from his personal cell on a Saturday morning, we took her immediately to the hospital ER. The ER doc did another blood test to verify the counts again and again it came back low (they did not tell us what the count was). They admitted her to the pediatric floor and began talking to us about different treatments for this disorder. Then they told us they were going to release her because they felt that since she wasn't in any pain that it would actually put her in more harm keeping her at the hospital because she was at risk of catching a virus. We were told to make an appt with a dr on Monday who specializes in blood disorders. The doc we will see on Monday was reviewing my daughter test results and consulting with the Hospital doctors. She is also the one who recommend they send her home. After reading some of these posts I am worried that I should have not agreed to bring her home. I feel lost and don't know the kinds of questions I should be asking. Please help.

Please Log in or Create an account to join the conversation.

For the Newly Diagnos 5 years 5 months ago #37556

  • alisonp
  • Offline
  • Posts: 1047
  • Thank you received: 114
I agree with the dr - hospital isn't the right place to be unless you are in pain or need immediate treatment! Chill today, tell your daughter to take things easy.........no knife throwing, tree climbing or gymnastics. Use the time to research a bit about ITP and get a list of questions together that you want to ask the dr.
ITP isn't necessarily a condition that is treated in children although it seems that in the US they treat more than they do in Europe. Treatment doesn't always work, so one of the things that you have to do is to weigh up the evils and downsides of the treatment against the positive effect that it might have on your daughters platelet level.
From what you say she has been running around for a while with a low count, so the extra day isn't going to have much effect either way. Don't panic. The vast majority of kids with ITP get over it, and even those that don't have reasonably normal lives - I speak as the parent of a tree climbing, soccer playing, bike riding 15 year old whose count is generally less than 20 :P
This is a good place to come for advice - there are parents whose kids have tried a lot of treatments so they will be able to clue you up on them if you go down the treatment route.
The following user(s) said Thank You: Roachgirl

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42172

  • Sjrolaids
  • Offline
  • Posts: 1
  • Thank you received: 0
My daughter, 8yo, was diagnosed with acute ITP in March, a week before her birthday. The only real symptom was horrible bruising all over her legs and arms. Some of these bruises lasted for weeks without ever healing. They would start to heal and then change colors, they'd go from green to purple, to blue, to black back to purple and then gray. An appointment with the GP led to blood work and a telephone call from the GP at 7 pm. Immediately the GP was telling me she was making arrangements for my daughter to go to Texas Children's Hosp that night b/c her platelet count was 9,000. After talking to TCH, as long as she wasn't bleeding, let's take the wait and see approach. Three months later (and a ton of blood test later), her levels have gone from 9 to 11 to 14 back to 11, dropped to 4, oh! Had an automobile accident which freaked us all out b/c a CT scan showed fluid on her lower pelvis, which we all thought was internal bleeding-it wasn't, Thank heavens! Her numbers have shown false positives of 98,000 and her most recent count was 51,000. To say we are frustrated is an understatement! She has been restricted from recess and PE. I'm afraid we are running out of time to continue with the wait and see approach.

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42174

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Don't worry, your daughter's latest count of 51 is a great count. No doctor would ever treat at that level. In fact the newest treatments aim for a count of 50. The wait and see approach is the right one for most children as the side effects of the treatments are far worse than the disease so really worth avoiding if at all possible.

It is possible that your daughter's count will continue to rise and she will be over this soon. If not, stabilising around 50 is fine. The other parents here will advise but I'd think that at a count of 51 she can do PE and any normal activity.
The following user(s) said Thank You: Sjrolaids

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42176

  • Kleighuk
  • Offline
  • Posts: 3
  • Thank you received: 0
Hi everyone, my daughter was diagnosed with ITP yesterday and there are a few things that I'm a little unsure about, I was hoping someone may be able to help me understand a little better. When my daughter's platelet count came back the consultant said her platelets were virtually non existant at 6 and she said what they were hoping for was between 250-300, since then I have had a google and looked through posts on here etc. and I have seen people talk about numbers in thousands and smaller numbers. Do the 6's and 10's etc. mean thousands or are there just different extremes of the condition? I'm thinking if it's in thousands maybe hers isn't too extreme.

Also, I'm unsure of just how active she can be, we are currently staying far from home with my brother and she is playing everyday with her cousins (4 & 2) they're all very boisterous and active together and they have a lab puppy at 4 months who is big enough to knock her over when she jumps and still biting quite a bit when excited. My daughter is also quite ditsy and clumsy and always playing ballerinas etc. and falling over, just how careful do I have to be with a count of 6?

Thank you to anybody taking time to read this/help, I've never posted on any kind of forum etc. before sorry it's so long.

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42177

  • Kleighuk
  • Offline
  • Posts: 3
  • Thank you received: 0
My daughter is 2 years 3 months by the way.

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42179

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Yes, counts of 6 are equal to 6,000, or 6k. You might see the numbers displayed in those different ways, but they are all the same. Anything over 100, or 100,000 is considered normal, so I don't know why your consultant would want counts over 250. That seems excessive.

With counts of 6, you'd want to be careful that she doesn't fall and bump her head. Bleeding can occur in the brain if that should happen. I realize that she is active and doesn't understand, but better safe than sorry. Counts over 50 are much safer for activities.
The following user(s) said Thank You: Kleighuk

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42182

  • Kleighuk
  • Offline
  • Posts: 3
  • Thank you received: 0
Thank you so much Sandi! It's not our regular hospital we attended, we're currently 230m/370km from home so we were told our own hospital will be dealing with us next week and hopefully things will be explained a bit more! I did see on the net in a few places that the norm is between 150-450k so I did wonder, maybe she just wanted more of an average? Hopefully next time she's tested it will have gone up then and we'll look forward to seeing 50 :)

Do you have any idea how often she may be tested? They didn't give us much information before we left, not sure if it's once a week, once a month or more etc. until it's a place they like x

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 4 years 9 months ago #42183

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Each doctor is different about how often a child should be tested. Some might want every day, whereas another doctor might want every other week. Daily is a bit much, but it all depends on the country you live in and how familiar a doctor is with ITP. The more knowledgeable they are, the less they tend to stress out over low numbers. Doctors in the US tend to push treatment at low numbers and doctors in the UK tend to watch and wait more often.

Counts can go up and down a lot, so there might be many ups and downs along the way.
The following user(s) said Thank You: Kleighuk, abhitutun

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 3 years 4 months ago #52194

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Researchers at Baylor College of Medicine have found genes associated with an autoimmune bleeding disorder called chronic immune thrombocytopenia, or ITP.

Dr. Jenny Despotovic, assistant professor of pediatrics at Baylor and Texas Children’s Cancer and Hematology Centers, presented the research Dec. 5 at the American Society of Hematology 57th Annual Meeting.

ITP is an autoimmune disorder in which antibodies are formed against platelets, resulting in a low platelet count and blood that does not properly clot, increasing the risk of bleeding, which can be severe and even life threatening. The study sought to identify genetic variants associated with susceptibility to and severity of the disease.

Researchers obtained DNA samples from the North American Chronic ITP Registry and the Platelet Disorders Center at the Weill-Cornell Medical Center, and whole exome sequencing was performed at Baylor College of Medicine’s Human Genome Sequencing Center. This work was done as a collaboration with the ITP Consortium of North America, of which Baylor and Texas Children's Hospital have been key participants since its inception.

“Results of the study showed that variants in genes associated with immune cell signaling, including IFNA17, are significantly more common in children with chronic ITP than in the healthy population,” Despotovic said.

Of the 172 ITP patients in the study, more than 40 percent had a variant in IFNA17, including one variant present in 26 percent of the ITP patients compared to about 5 percent of controls. This gene is associated with immune cell activity, and could have an important role in predisposition to ITP or disease severity.

“We also identified genes, including DOK3, that are far more common in children with ITP who required more aggressive treatment than those who did not,” Despotovic said.

“This study is the first of its kind in chronic ITP, and these findings may facilitate improved understanding of the development of this disease and why it becomes a chronic disease in some children,” she said. “In addition, understanding patients’ genetic changes could lead to more personalized approaches to treatment of this disorder.”

Others who contributed to this research included Eric Boerwinkle and Linda Polfus, both of the University of Texas Health Science Center at Houston, Jonathan Flanagan of Baylor and Texas Children’s Hospital, as well as numerous collaborators in ICON.

www.bcm.edu/news/pediatrics/genes-associated-with-bleeding-disorder-found

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 3 years 3 months ago #52476

  • Kellycol09
  • Offline
  • Posts: 2
  • Thank you received: 0
My 1yr old son was just diagnosed today with ITP. His platelet level is at 9,000 compared to the normal at 140,000. We are seeing the hematologist on Wednesday but I am wondering what to expect? Also with his platelet levels so low should we expect some steroids? Thanks in advance..so worried.

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 3 years 3 months ago #52477

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
It's hard to tell you what to expect because every case is different. For many children, ITP is acute and goes into remission within a few months to a year. It can appear after an illness or vaccine.

Many doctors these days lean towards the 'watch and wait' method and do not treat children, although that is a decision that you and the doctor will have to make.

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 3 years 3 months ago #52483

  • Kellycol09
  • Offline
  • Posts: 2
  • Thank you received: 0
His poor little legs are so bruised already. Its amazing how quickly it all happened. Thank you for the reply. Its nice to have others to talk with

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 3 years 3 months ago #52484

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
I know it's hard to go through this with your child. There is a lot of hope though that it will remit. The decisions that you make now will be hard, because all treatments come with side effects. See what the Dr. has to say and go from there. At this point, you have to take it one day at a time. We are here if you need us.
The following user(s) said Thank You: Kellycol09

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 2 years 9 months ago #54955

  • Cdreyes
  • Offline
  • Posts: 2
  • Thank you received: 0
Hi, I am a parent of a 4.5 year old boy, recently diagnosed with ITP. Just wanted to know if what we are seeing are normal to a child with ITP. My wife and I are already paranoid and often get scared every time we see small red pigmets, bruise and nose bleeding occur. My son's platelet count when we brought him to the hospital was at 24, doctors gave him IVIG, which increased his platelet to 28. But after 24 hours his count went back to 24. This is our 6th day in the hospital, doctors decided to give him prednisone, which increased his platelet to 28 again. I get scared when there are new small red like blisters appear on him, when we see blood on his mucus, but the blood in his mucus comes and go. How will long will this condition of our son be like? There are a lot of questions going in our mind. Hope you can give us information with our childs situation. Thank you and look forward to hearing from everyone.

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 2 years 9 months ago #54962

  • Rob16
  • Offline
  • Posts: 1118
  • Karma: 2
  • Thank you received: 266
Many parents and doctors elect not to treat, even at platelet counts much lower than your son's, and minor symptoms are not necessarily a sign of trouble to come. There are serious potential side effects with ALL treatments, such that the risk of treatment can outweigh the risk of not treating. Usually, counts can be increased quickly with IVIg and/or prednisone as a rescue treatment or if higher counts are needed for dental work and such.

According to ASH guidelines:

www.bloodjournal.org/content/117/16/4190
1.2.A. We recommend:
Children with no bleeding or mild bleeding (defined as skin manifestations only, such as bruising and petechiae) be managed with observation alone regardless of platelet count (grade 1B).

I recommend reading the whole article. There is much good information on children with ITP.

The new medicines called TPOs are relatively safe, and were recently approved for use in children. The TPO drugs are eltrombopag (Promacta) and romiplostim (Nplate). Rather than treating platelet destruction, they increase the rate of production. Your son's unresponsiveness to prednisone and IVIg suggest the possibility that his problem may be with the production end, which in turn suggests that his ITP may be more responsive to TPOs than with the average patient.

TPOs have shown varying effectiveness in children, according to this new study from the Pediatric ITP Consortium of North America (ICON):

onlinelibrary.wiley.com/doi/10.1002/pbc.26003/abstract
Thrombopoietin Receptor Agonist Use in Children: Data From the Pediatric ITP Consortium of North America ICON2 Study
Results
Seventy-nine children had a total of 87 treatments (28 eltrombopag, 43 romiplostim, and eight trialed on both). The majority had primary ITP (82%) and most (60.8%) had chronic ITP. However, 22% had persistent ITP and 18% had newly diagnosed ITP. During the first 3 months of treatment, 89% achieved a platelet count ≥ 50 × 109/l (86% romiplostim, 81% eltrombopag, P = 0.26) at least once in the absence of rescue therapy. The average time to a response was 6.4 weeks for romiplostim and 7.0 weeks for eltrombopag (P = 0.83). Only 40% of patients demonstrated a stable response with consistent dosing over time. An intermittent response with constant dose titration was seen in 15%, and an initial response that waned to no response was seen in 13%. Significant adverse events were minimal with the exception of two patients with thrombotic events and one who developed a neutralizing antibody.

Please Log in or Create an account to join the conversation.

Viral Diseases and Vaccinations 2 years 8 months ago #55126

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Immune thrombocytopenia (ITP) might be preceded by silent or overt viral infections. Similarly, anti-viral drugs and viral vaccines could also trigger ITP and might play a central role in its pathogenesis. The seasonal nature of childhood ITP suggests that viral infections might initiate immune responses that increase the predisposition and occurrence of ITP. Active cytomegalovirus or Epstein-Barr virus should be considered in differential diagnosis when thrombocytopenia is associated with lymphadenopathy, especially with splenomegaly. This review will focus on the specific association of ITP in association with viral disease and vaccinations, and will discuss the effectiveness of current therapies in light of our current understanding of viral-associated ITP.

Copyright © 2016 Elsevier Inc. All rights reserved.

www.ncbi.nlm.nih.gov/pubmed/27312173

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 1 year 5 months ago #61654

  • Sarah93
  • Offline
  • Posts: 1
  • Thank you received: 0
Hey my son who is 5 got diagnosed with itp yesterday. He is a very hyperactive little boy and doesnt like go sit still his blood count was 11 yesterday and he keeps banging hjs head. I am so worried about a bleed on the brain that i dont want him to be his hyperactive self. Can someone give me some advice on what i can do. Thanks

Please Log in or Create an account to join the conversation.

For the Newly Diagnosed 1 year 5 months ago #61656

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
The doctor didn't advise you? He should have. You could probably choose to treat him or look into a helmet. I'd ask his doctor.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
  • 2
Moderators: jaycharness

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo