TOPIC:

I'll let you know what she says.

maria3132 wrote: ...
Sandi, if you have an easy way to contact Carolyn, I think that would be great! My graph above has four categories in four columns of an excel sheet and the graph is generated automatically. It couldn't be easier, and if everyone did it, perhaps we could design our own study (or at the very least add data for Hal's 4 types).
I don't know about a PDSA app but your idea Maria does get me thinking about something really simple to put on a web page in conjunction with my table.
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Maria:

The response is: The app being used by the UK Platelet Disorder Association was designed for them by a drug company. They have a deal between the two of them. We can't have that one, but the PDSA is working on an app that may be ready in a few months.

Sandi wrote:

Maria:

The response is: The app being used by the UK Platelet Disorder Association was designed for them by a drug company. They have a deal between the two of them. We can't have that one, but the PDSA is working on an app that may be ready in a few months.

Great, thank you! Happy to test it.

It would be nice if your son didn't need it by then, huh?

Hal, what exactly do you have in mind?

Sandi, indeed, that would be nice!

He was complaining about a tummy ache so I didn’t give him papaya yesterday. We’ll see if he gets more new bruises in the coming days.

Call me crazy but I think there's something to the papaya. Over the last few days, I severely reduced or skipped papaya. Today, he has a drop of blood from his nose. Otherwise, he only has a few, mild small bruises that heal and as far as I can tell, no petechiae. Going back up with the papaya.

Maria, I was thinking changing my page so that there are controls on it to select steroid, IVIG, and TPO agonist response choices, then, give a number one through four result, or, unable to determine result. What were you thinking?

Hal, that sounds like a good way to validate your data!

I was thinking that more people might track symptoms and treatments if the tools were easily accessible, that's all. Perhaps that would give us more data to understand what's going on. Of course it would still suffer from self reporting bias (as does my chart).

My son has not had any symptoms for the last 24 hours. A few days ago, he still had a few small, old and fading bruises and a bit of pink/reddish discharge from his nose, but today he's looking great. I stopped the papaya on Sunday. Here is the updated chart:


Legend:
* symptoms (blue line generated using a subjective scale, with 10 being his worst, at diagnosis),
* counts (orange dots, generated by dividing platelet counts by another 10 from usual, so his low of 1.9K is 0.19 and his high of 54k is 5.4), and
* IVIg treatments (grey line, 15g is 15) and papaya (yellow line, 1tbsp is 1)
The three grey line spikes represent three IVIg treatments: 1st one with one dose of 15g, 2nd one with two doses of 15g each, and 3rd one of one dose of 15g.

A quick uodate: i have been traveling and was unable to post but my son is OK, with only two bruises and no petechiae. We go for a blood test on Wednesday.

i don't know if you have this kind of set up but i had it were i could get blood work once a week if i wanted it. i didn't have to go to the doctor.
so lets say the doctor said comeback in a month. at the same time he gave be a form to get blood work but with a repeat once a week.
so if i see anything funny i could walk into a lifelabs and get blood work done and not have to wait for the scheduled appointment in a month.
also i could try different things for a week and take the test and see if it did anything.oh and i have it set up so i can see the results online.

John, that's a great idea. We'd still have to schedule it because he goes to a pediatric plebotomist (at the same clinic) but that part has never been the bottleneck so it would definitely make the visit shorter. I'll ask about only coming in for the draw with a standing order.

my first hemo wouldn't do that. the second one i got did. also my family doctor would do it too if i wanted.
you have to look at these doctors as you building a team. sometimes you have to cut someone or make a trade.
before i use to go back and forth with doctors -"but doctor why can't i get this?...." i don't do that anymore. i just look for another doctor.

Yesterday's count was 83,000! He still has 3-4 bruises and did develop petechiae from a very tight blood pressure monitor sleeve, but we are obviously happy with the result. The only thing is that I think his symptoms are slightly worse now than they were 1.5-2 weeks ago. I am tempted to go back to the papaya for a few days.

Yay! Give him a high five from me!

Sandi wrote:

Yay! Give him a high five from me!

Will do, Sandi!

That is a great number! Now I truly understand how much cheering up with a good number for ITP.

Hi everyone,
I have great news - my son's platelet count is 160,000. Oddly, he has more bruises that look like ITP bruises to me (sides of knees and lower back around the spine and dimples have been his hallmarks) than he did at his last count about a month ago, but we are certainly not complaining! We still haven't taken him in for a flu shot, I'm afraid it might send his counts down, but we might do it near the end of this month.
I'm catching up on the other threads... Hope everyone is doing okay.

That's great, Maria! Fingers crossed that it's acute!

That is great! I think symptoms sometimes are not corresponding to platelet count. My son had widespread petechiae and bruise first two times his count below 10K. But this time even at 4K, he only has few petechiae and one or two small bruises. Good luck, wish you all the best.

maria3132 wrote:

Hi everyone,
I have great news - my son's platelet count is 160,000. Oddly, he has more bruises that look like ITP bruises to me (sides of knees and lower back around the spine and dimples have been his hallmarks) than he did at his last count about a month ago, but we are certainly not complaining! We still haven't taken him in for a flu shot, I'm afraid it might send his counts down, but we might do it near the end of this month.
I'm catching up on the other threads... Hope everyone is doing okay.

160 count, nice! Looks like he's in that ITP resolves within 6 months group. Do you remember what 'normal' was like?

On the flu shot. What is your thinking on that? That, in terms of ITP, getting a flu shot is less risky than having the flu?

Thanks, Sandi, TH8899, and Hal!

TH8899, Yes, I've noticed the symptoms don't correlate exactly... I remember one of the doctors also saying (when my son was first diagnosed) that they don't really know why young kinds don't bleed more even at very low counts, but they seem not to.

Hal, "normal" is starting to feel within reach. He no longer has to wear an alert bracelet with our phone numbers or a helmet at his outdoor preschool (where they do a lot of hiking on muddy and rocky trails), and I'm letting myself plan (at least in my mind) a family trip to Canada to visit my parents (where our insurance won't fully cover us). We were supposed to go in July but obviously canceled.

On the flu shot, we'll probably do it; truthfully I'm hoping to wait until late November / early December to see if there's any indication of whether this year's vaccine actually matches the circulating strains. I didn't realize the flu shot is less risky than having the flu. That seems to be a big vote "for" getting one.

I'd say it's a coin toss as to which would be more risky. Vaccines are inflammatory which is not good for those with autoimmune disorders.

"The results of this review seem to discourage the utilisation of vaccination against influenza in healthy adults as a routine public health measure. As healthy adults have a low risk of complications due to respiratory disease, the use of the vaccine may be only advised as an individual protection measure against symptoms in specific cases. "
www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001269.pub4/full

I had a study showing that the flu vaccine is not effective in children, but it appears to have been taken offline.

"US data on influenza deaths are false and misleading. The Centers for Disease Control and Prevention (CDC) acknowledges a difference between flu death and flu associated death yet uses the terms interchangeably. Additionally, there are significant statistical incompatibilities between official estimates and national vital statistics data. Compounding these problems is a marketing of fear—a CDC communications strategy in which medical experts "predict dire outcomes" during flu seasons."
aspe.hhs.gov/cdc-%E2%80%94-influenza-deaths-request-correction-rfc?fbclid=IwAR2GHEbf_pHE_qkJ1Ep5f_jVJwDDmzGm3NL4FnhSOBNXteeiEsU9SOpheJk

"Peter Doshi (associate editor at The BMJ and a MIT graduate) has criticized the CDC’s “aggressive” promotion of flu shots, noting that although the annual public health campaigns deliver a “who-in-their-right-mind-could-possibly-disagree message,” the “rhetoric of science” trotted out each year by public health officials has a “shaky scientific basis.” Viewed within the context of Doshi’s remarks, the CDC’s high-flying flu numbers for 2017-2018 raise a number of questions. If accurate, 80,000 deaths would represent an enormous (and mystifying) one-year jump—tens of thousands more flu deaths compared to the already inflated numbers presented for 2016 (and every prior year). Moreover, assuming a roughly six-month season for peak flu activity, the 80,000 figure would translate to an average of over 13,300 deaths per month—something that no newspaper last year came close to reporting."
childrenshealthdefense.org/news/vaccine-safety/the-cdc-influenza-math-doesnt-add-up-exaggerating-death-toll-to-sell-flu-shots/?utm_source=mailchimp&fbclid=IwAR2IAuGDWGvYWc0lO9yQrAxzz0P-ThN4T6ZBDJ6xNG7un3FLr2BZdnuJqXg

"Annual vaccination of all healthy children against influenza has been recommended, but the impact of vaccination on the development of the virus-specific CD8(+) T cell immunity in children is currently unknown. Here we compared the virus-specific CD8(+) T cell immunity in children vaccinated annually with that in unvaccinated children."
www.ncbi.nlm.nih.gov/pubmed/21880755

2018 Flu vaccine estimated to have 20% efficacy:
www.sciencedaily.com/releases/2018/04/180419131015.htm

"Canadian researchers noticed in the early weeks of the pandemic that people who got a flu shot for the 2008-2009 winter seemed to be more likely to get infected with the pandemic virus than people who hadn't received a flu shot."
www.cbc.ca/news/health/flu-shot-linked-to-higher-incidence-of-flu-in-pandemic-year-1.1287363?fbclid=IwAR1sHsiI274dQqN7GfZdSzaJ2hUt8gdaR_F3pYKoBjZ5_BXHxLwkGo2rpp8

"US data on influenza deaths are a mess. The Centers for Disease Control and Prevention (CDC) acknowledges a difference between flu death and flu associated death yet uses the terms interchangeably. Additionally, there are significant statistical incompatibilities between official estimates and national vital statistics data. Compounding these problems is a marketing of fear—a CDC communications strategy in which medical experts “predict dire outcomes” during flu seasons."
www.bmj.com/content/331/7529/1412

"Closer examination of influenza vaccine policies shows that although proponents employ the rhetoric of science, the studies underlying the policy are often of low quality, and do not substantiate officials’ claims. The vaccine might be less beneficial and less safe than has been claimed, and the threat of influenza appears overstated."
www.bmj.com/content/346/bmj.f3037.full

"Recipe" for fostering public interest and high vaccine demand (from the CDC themselves to the media - create fear, predict dire outcomes, create vaccine demand).
www.nationalacademies.org/hmd/~/media/E9B963EDB28645C5ABCC22467120662D.ashx

Our hemo said we have to wait at least two months after last IVIG to get flu shot. Also he suggested to use flu mist instead of injection.

maria3132 wrote:

...
On the flu shot, we'll probably do it; truthfully I'm hoping to wait until late November / early December to see if there's any indication of whether this year's vaccine actually matches the circulating strains. I didn't realize the flu shot is less risky than having the flu. That seems to be a big vote "for" getting one.

Take a look at the below list which I created from PDSA members who likely had Flu or Flu vaccine as trigger for ITP, as posted here. There are 10 members, numbered 1 through 10. If month of trigger is not known, these were not included.

year . jfma mjja sond (janfebmarapr mayjunjulaug sepoctnovdec)
2005 . . . . 8
2006 .
2007 . 2
2008 .
2009 .
2010 . . . . 3
2011 . . . . . . . 5v
2012 . 6
2013 .
2014 . 1 . . 7b
2015 . 9
2016 . . . . 10 . 9
2017 . 4v
2018 . 8
One has to wonder. Are there specific Flu strains that are common to these Flu seasons? For the two Flu vaccines (5v and 4v), were those strains also contained in the vaccines?
The Flu season around 2016 - 2017 is most provocative - potentially 3 triggers that season. 2011 - 2012 Flu season has 2 trigger instances.

Just thinking out loud.

In the UK a 3 year old would be offered the nasal spray and not the injection

Sandi wrote:

I'd say it's a coin toss as to which would be more risky. Vaccines are inflammatory which is not good for those with autoimmune disorders...

Sandi, just to share a bit. IMHO Flu vaccines should be avoided by every ITP'er, except row 2. The Flu virus being a potential cause of ITP reactivation in that group.

... I had a study showing that the flu vaccine is not effective in children, but it appears to have been taken offline...

Have you heard of the 'Way Back Machine'? It keeps a record of web pages over time. If you still have the link you might be able to recover it from the Way Back Machine web site. It does take a bit to figure out how the web site works.
archive.org/web/web.php

Oh wow - It worked! How cool!
web.archive.org/web/20171108040105/http://onlinelibrary.wiley.com:80/doi/10.1002/14651858.CD004879.pub4/full

Hal
IMHO as a front line health professional ITP will not kill you but ‘flu could.
It’s a bigger picture than just protecting oneself. None vaccinated people could asymptomatically carry the flu virus and pass it on to someone else who then becomes critically ill and dies