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For the Newly Diagnosed
- hartamanda
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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
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- skdemirtas
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Thanks for letting me vent!!
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- Roachgirl
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- alisonp
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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
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.
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- Sjrolaids
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- Ann
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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.
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- Kleighuk
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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.
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- Kleighuk
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- 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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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.
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- Kleighuk
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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
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- 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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Counts can go up and down a lot, so there might be many ups and downs along the way.
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- 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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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
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- Kellycol09
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- Sandi
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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.
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- Kellycol09
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- Sandi
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- Cdreyes
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- Rob16
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According to ASH guidelines:
I recommend reading the whole article. There is much good information on children with ITP.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).
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.
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- 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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Copyright © 2016 Elsevier Inc. All rights reserved.
www.ncbi.nlm.nih.gov/pubmed/27312173
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- Sarah93
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- Sandi
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