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12wks in

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8 years 6 months ago - 8 years 6 months ago #52134 by Catk96
12wks in was created by Catk96
It's been 12wks.12long weeks!6 yr old,diagnosed & treated with 2xivig(failed..)bone marrow clear and then started on steroids.her counts were always under 10,000.she got to 79,000 after 4 wks of steroids.
My question is does that mean the steroids have worked?most reports I read of ppls experience is that the count goes well above normal.her doc wants to wait til after Xmas for repeat bloods.

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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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8 years 6 months ago - 8 years 6 months ago #52135 by Sandi
Replied by Sandi on topic 12wks in
The word 'works' has several meanings with ITP. It can mean the count went up, the count went up partially or the count went up temporarily. I'd say that yes, Prednisone worked in that it brought the counts up, but so far it is a partial response and may not last. Some people are happy with that, some are not. My counts would have shot up to about 250k by this point, so she has not had the best possible response.

What symptoms did she have when counts were down? As time goes on, more and more doctors are not treating children and just 'watch and wait' to see if counts rebound on their own. ITP can often be acute in children and sometimes resolves on its own, with or without treatment.

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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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8 years 6 months ago #52136 by Sandi
Replied by Sandi on topic 12wks in
Abstract
IMPORTANCE:

In 2011, the American Society of Hematology (ASH) published updated guidelines for the management of childhood immune thrombocytopenia (ITP) recommending management with observation alone when there are mild or no bleeding symptoms, regardless of platelet count. Little is known about practice patterns of newly diagnosed ITP in the United States.
OBJECTIVE:

To understand the impact of management recommendations on practice patterns.
DESIGN, SETTING, AND PARTICIPANTS:

Retrospective medical record review in the Children's Hospital of Philadelphia, a large, urban, pediatric tertiary care hospital in Philadelphia, Pennsylvania. The study involved 311 pediatric patients with newly diagnosed ITP managed between January 1, 2007, and December 31, 2012.
MAIN OUTCOMES AND MEASURES:

Management type (observation alone vs pharmacotherapy) was determined via medical record review and electronic pharmacy data at diagnosis and within 6 months after diagnosis.
RESULTS:

Overall, 44.7% of patients were managed with observation alone at diagnosis, with a significant increase from 34.9% in 2007-2010 to 49.2% in 2011 (P < .02) and 71.1% in 2012 (P < .001). Of those treated, 99% were treated with intravenous immunoglobulin. In multivariable logistic regression, younger age (odds ratio, 0.92; 95% CI, 0.87-0.99), lower platelet count (odds ratio, 0.86; 95% CI, 0.83-0.89), and earlier period (2007-2010) of diagnosis (odds ratio, 0.17; 95% CI, 0.09-0.34) were significantly associated with increased odds of pharmacologic management. During 2010-2012, 20.8% of patients were also treated within 6 months after diagnosis. There was no significant difference by year or initial management type in those who received this later pharmacotherapy. Additionally, 19.6% of patients had documented bleeding symptoms beyond cutaneous bruising or petechiae at diagnosis. Intracranial hemorrhage at diagnosis was rare (0.6%).
CONCLUSIONS AND RELEVANCE:

We demonstrated a significant practice change in the management of newly diagnosed ITP at a pediatric care tertiary care hospital in the United States surrounding revision of the ASH management guidelines for childhood ITP. Our experience supports adoption of observation alone for a proportion of patients with newly diagnosed childhood ITP. This form of management did not lead to an increase in later treatment or an increase in delayed bleeding symptoms.


Continuing evolution at JAMA pediatrics. [JAMA Pediatr. 2014]

www.ncbi.nlm.nih.gov/pubmed/25288142

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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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8 years 6 months ago #52137 by Sandi
Replied by Sandi on topic 12wks in
BACKGROUND: Treatment recommendations for childhood Immune Thrombocytopenia (ITP) in the United States have been a subject of much debate. In early 2011, the American Society of Hematology (ASH) updated their guidelines, recommending that children with ITP be managed with observation alone when there is mild or no bleeding symptoms regardless of platelet count, reserving hospitalization and pharmacologic treatment for those with significant bleeding. The objective of this study was to better understand the impact these recommendations have had on practice patterns at a large, urban, pediatric tertiary care hospital in the United States. METHODS: We examined data from patients aged 0-17 with newly diagnosed ITP seen in inpatient and outpatient locations at the Children's Hospital of Philadelphia (CHOP) between January 1, 2007 and December 31, 2012. A cohort was developed by querying the hospital data system for all patients treated 2007-2012 using the ICD-9 code for ITP (287.31). Chart review was used to exclude patients with alternative diagnosis for thrombocytopenia, diagnosis prior to the time of interest, and initial treatment elsewhere. We compared management strategies at diagnosis and retreatment rates in the first 6 months after the initial diagnosis. The primary outcome, management at diagnosis, was analyzed by logistic regression and chi square analysis. RESULTS: 502 unique patients were identified. After chart review, an evaluable cohort of 313 patients with newly diagnosed ITP remained. The most common reasons for elimination were an alternative diagnosis (n=41), diagnosis in a previous year (n=68), and initial treatment at another hospital (n=69). Of those with an alternative diagnosis, Evan's syndrome (n=8) and ALPS (n=5) were the most common reasons for elimination. New diagnoses per year ranged from 34-51 in 2007-2009 and 60-63 in 2010-2012. The mean platelet count and age at diagnosis were 16.9 x10^9/l and 6.22 years old, respectively. Distribution was skewed toward lower platelet count and younger age. Overall, 19.5% of patients were noted to have bleeding symptoms beyond bruising or petechiae. The most common bleeding symptoms at presentation were epistaxis (n=25), wet purpura (n=20), gastrointestinal bleeding (n=5), hematuria (n=4), and menstrual bleeding (n=4). Intracranial hemorrhage was rare (n=2, 0.6%). Overall, 55% of patients were managed with pharmacologic treatment at diagnosis. Of those treated, 98% were treated with IVIG. Additionally, the proportion of patients observed at diagnosis rose significantly during this time period from 34% of patients in 2007-2010 to 49.2% in 2011 (p<.02) and 72% in 2012 (p<0.001). Via logistic regression, younger age, lower platelet count, and year of diagnosis were significantly associated with increased odds of pharmacologic treatment. During 2010-2012, 21% of patients were also treated within 0.25-6 months after diagnosis, with no significant difference by year or initial management (p>0.5). The majority treated after diagnosis were due to “low platelet counts” (n=14), bruising/wet purpura (n=6), or parental anxiety/activity level (n=3). One child, initially treated with IVIG, presented with ICH secondary to trauma 1.5 months after diagnosis. CONCLUSIONS: Over time, a significantly increased proportion of patients were observed at diagnosis. Though we cannot prove causation, this change demonstrates a strong association between timing of ASH recommendations and increase in observation rates. As we increased the proportion of children being observed at diagnosis we did not see an increase in the proportion of children receiving treatment or those with significant bleeding symptoms in the following 6 months. Additionally, we found that 37% of patients originally identified via ICD-9 code did not meet our criteria for evaluation of ‘newly diagnosed ITP'. As there is a greater shift to observing patients, along with the development of outpatient infusion services, inpatient databases could become skewed in regard to ITP. Because of this, caution should be utilized in using ICD-9 code alone to identify new diagnoses, especially when chart review is not accessible. Future studies will be able to identify the changing national trend in admission and management and whether adoption of ASH guidelines is widespread.

ash.confex.com/ash/2013/webprogram/Paper59391.html

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8 years 6 months ago #52139 by Catk96
Replied by Catk96 on topic 12wks in
She is 6 years old.
Her initial presentation was the typically signs & symptoms.nose bleeds,mouth blisters bruising and petechia.very sudden.literally in front of our eyes.
The haematologist does have a wait and see type approach.she keeps saying not to get fixated on her levels,more her symptoms.i just hate it.10 days ago her count was 79,000 and she still had a few petechia dots.im constantly fearful that every new bruise is a sign that the levels are plummeting(& that the first night is happening again)
I read so much on ITP,most of the info is from the USA,while here in Ireland so little is known.

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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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8 years 6 months ago - 8 years 6 months ago #52140 by Sandi
Replied by Sandi on topic 12wks in
I know it's frustrating. It gets better. The only thing different between the US and Ireland would be the treatments available. The etiology of ITP is the same. The doctor is right....look at symptoms not counts. Bruising and petechiae can be signs that counts are down, but are not necessarily worrisome unless they are seen in excess. Small yellow or purple bruises are okay, but large black ones can mean more serious symptoms. I could always tell the difference between a regular bruise and an ITP bruise by pushing on it. ITP bruises usually don't hurt when you press them unless you got the bruise by bumping yourself. Mouth blisters and gushing nose bleeds need to be taken more seriously.

You might have many ups and downs along the way. That is the nature of ITP. Eventually you will learn not to panic all the time. Did your daughter have an illness or vaccine prior to ITP symptoms (like a few weeks before)? Those can sometimes trigger ITP.

Be careful about what you read. There are very reliable sources and there are sources that are nothing but crap. Also be sure it is recent because out dated info doesn't apply any more. Things have changed a lot in recent years.

Read through the Parents Section and see the experiences of others. It will help a lot.

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8 years 6 months ago #52141 by Catk96
Replied by Catk96 on topic 12wks in
Ya.i know.its such a frustrating disorder.previously to this she had a cough/cold that was there for a week,so I think that was the route of all this.
Thank you so much for your advice.so little is known about it here,I was given no information leaflets by the hospital,so I googled my info.my GP panics about it,she has only come across this twice,but platlet levels weren't as bad as my daughters.
In fairness her haematologist was previously working abroad so has a vast amount of knowledge on it and treatments.
It's the 1% rate of fatality that scares me.i keep coming across those stories.

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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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8 years 6 months ago #52144 by Sandi
Replied by Sandi on topic 12wks in
Cat:

GP's tend to panic more because they are not familiar with ITP. ER's can be the same. A Hematologist who knows ITP will not get upset at low counts. Children rarely ever die from ITP....where did you get the 1% fatality rate? I've always read that it's more like .06%. Just be vigilant and observant and seek help if you think you need it.

Statistics have shown that more people die from infections due to treatments than they do from ITP bleeding.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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8 years 6 months ago #52147 by EmilyK
Replied by EmilyK on topic 12wks in
Yonsei Med J 2016(Jan); : 127-31.
High Remission Rate of Chronic Immune Thrombocytopenia in Children: Result of 20-Year Follow-Up.
Kim CY, Lee EH , Yoon HS
Department of Pediatrics, Kyung Hee University Medical Center, Seoul, Korea.
| | | |
• PURPOSE: This study examined the outcomes of children with chronic immune thrombocytopenia (ITP).
• MATERIALS AND METHODS: We retrospectively analyzed the medical records of all patients diagnosed with ITP from January 1992 to December 2011 at our institution.
• RESULTS: A total of 128 patients (64%) satisfied the criteria for newly diagnosed ITP, 31 (15%) for persistent ITP, and 41 (21%) for chronic ITP. The median age at diagnosis was 4.5 years (range, 1 month to 18 years). The median platelet count at diagnosis was 32×10⁹/L. A comparison of the initial treatment data from 2001 to 2011 with those from 1992 to 2000 showed that the number of bone marrow examinations decreased, whereas observation increased. Chronic ITP presented at an older age than newly diagnosed and persistent ITP (6.6 years vs. 3.8 years vs. 4.1 years, respectively); however, the difference did not reach statistical significance (p=0.17). The probability of complete remission of chronic ITP was 50% and 76% at 2 and 5 years after diagnosis, respectively. Patients aged <1 year at diagnosis had a significantly better prognosis than did older patients (hazard ratio, 3.86; p=0.02).
• CONCLUSION: Children with chronic ITP showed a high remission rate after long-term follow-up. This study suggests that invasive treatments such as splenectomy in children with chronic ITP can be delayed for 4 to 5 years if thrombocytopenia and therapeutic medication do not affect the quality of life.
The following user(s) said Thank You: Catk96

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8 years 6 months ago #52148 by Catk96
Replied by Catk96 on topic 12wks in
I'm probably confusing it with the 1% of brain bleeding.thanks so much.it is just a wait & see situation & it's accepting that is my biggest problem.i just want it fixed.my husband seems to accept it a lot better than me.
I was told by a doc in a&e ,that if you had to pick a blood disorder-ITP was it.because it's self limiting and one day it will just stop.

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8 years 6 months ago #52149 by Catk96
Replied by Catk96 on topic 12wks in
Thanks so much.i just need to remain hopeful that she will be one of those that goes into remission.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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8 years 6 months ago #52153 by Sandi
Replied by Sandi on topic 12wks in

Catk96 wrote: I was told by a doc in a&e ,that if you had to pick a blood disorder-ITP was it.because it's self limiting and one day it will just stop.


That is very true. I've heard that many times and in my experience, ITP is one of few autoimmune disorders that remits fairly often. Stick to the good thoughts. :)

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