TOPIC:

I will continue to get the flu shot. I have been ever since being diagnosed in 2004 with no issues. And now that my 88 year old mother lives with me, I won't take the chance that I might pass it on to her even if I don't get it. I have been spleenless since 2006 and have not gotten sick any more than before that.

I have been getting a flu shot yearly starting in 1992 and have had no issues. I've seen someone with flu complications and having to be hospitalized, it isn't pretty it is darn scary!

A child in Florida died of flu complications in October, a middle-aged women in Kentucky died of flu complications in October.

I don't believe that flu shots are not effective in children. For a while they took the mist out of the picture saying it wasn't effective but I believe they have brought it back - not something any of us would get anyway.

Good for you Cindy to think of others - hope you are doing well [and Mom too].
Melinda

I don't know why they brought the mist back. It wasn't effective then and probably still isn't. It sheds for up to 28 days (per the insert), so it seems that the mist could actually spread the flu. The efficacy rates of the shots are never that great either. I've never had one, never had the flu. The benefit vs risk isn't worth it to me.

Hi everyone! we have been traveling so I haven't checked in in a while...

On the flu shots, my only reservation is about effectiveness v. risk of triggering ITP. I know some years they get the mix right, and other years they can't stay ahead of the flu strains mutations. I'm trying to figure out by when that becomes relevant. We're leaning toward doing the flu shots this coming week.

In other news, I'm pregnant. I'm 40, so for "advanced maternal age," they now offer a CRAZY amount of prenatal testing, including sequencing the fetus' entire genome through a technique called micro array. It doesn't diagnose autosomal recessive disorders but it does look for nearly 200 genetic abnormalities. The downside is that sometimes it comes up with "values of uncertain significance," i.e. you're told something is off with the genes but scientists have no way of knowing if that will become a symptomatic problem or not, so you're left to marinate and stress yourself out in this ambiguity.

Anyway, during the consultation with the genetic counselor, I asked about ITP. She said because any genetic link is likely to be recessive autosomal, this technique wouldn't pick it up. I pushed a bit more, and basically, the answer was that no one is really keeping track of kids whose DNA has been sequenced for any reason (pre- or post-natally) and kids who develop ITP (plus a host of other diseases). Adding this to my list of research questions! It seems like all it would take is cross-referencing a bunch of databases... I wonder how much "low hanging fruit" in terms of research on "rare" diseases is out there, just waiting for someone to start seriously cross-referencing data.

Congratulations! 40 is nothing. Tons of my friends got their kids way into 40s without any issues. Sleepless night and diapers scare us away to have third one

Congratulations Maria. Just checked back in my book (haemo makes us keep one with a complete record of results and incidents) . I haven't had my counts drop dramatically after a flu jab. I'd rather risk low counts than flu & being pregnant now puts you in to the 'recommended has a jab category'.

Congratulations, Maria! That's big news! Is this your second?

If you're interested in genetics, start researching 'epigenetics'. Lifestyle and the things we are exposed to play a huge part in the development of certain health conditions.

Thanks TH8899, MrsB and Sandi! Yes, this will be #2, if all goes well.
And thanks for the epigenetics reference! I've listened to a few TED talks (mostly related to nutrition and cancer prevention*) but haven't really delved into the topic. It sounds fascinating.

*https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3197720/

Good luck with #2 Maria.
On a DNA signature for ITP. Roomer has it that it has been investigated for adults, but nothing was found. I have to wonder though, if they should have been looking for 4 different signatures since there are 4 types of ITP. If they were looking for 1 signature, I can see how the search failed.

Hal, interesting, do you know when that was done? I understand the microarray technique has only been around for 10 years.

Don't know. We had a guest speaker hematologist at our last local PDSA meeting. As I recall her saying, she started her career in research looking for a DNA signature for ITP and had found nothing. Finding nothing, then moved on.
Ok, did a bit of searching on papers she has published. Looks like she may have done that back around 2009 at St Jude Children's Research Hospital. If you want her name, I can message it to you.

I mentioned 'adults' earlier. That was a presumption by me. I guess it could have been children.

Congratulations, Maria!!!

We recently went in for a three-month follow-up, and my son's platelets are at 292,000. We were discharged from the clinic with the words "We hope we never see you again" and enthusiastic high fives with the hematologists and nurses.

I still check him for bruises daily. Habit, I guess. He has a shiner on one of his arms currently, and it looks just like his ITP bruises did, but it's (evidently) not.

I am so grateful for the community here. It helped me tremendously throughout this crazy journey. I will be back from time to time to check up on you all, and will check my PMs every once in a while too. To all the ITP parents, current or future, don't hesitate to ask questions if you think I could possibly help.

Sandi, would you mind moving the topic to the kids' section? I hope my son's story provides some comfort to others.

Maria,
So glad to hear this good news! Wish your son all the best. Hopefully, my son could follow the same path soon. Up until two and half weeks ago, we felt totally lost. Nothing worked and his count was at 5K. Then the miracle happens, his count is at 415K last Friday. We are cautiously optimistic and weaning off Prednisone and Promacta now. Hopefully, the count could stay up.

Maria - fantastic news! Thanks for letting us know! I'm so happy for you!
Yes, please keep in touch and let us know how he is doing...and the new little one!

Topic moved.

292. Not a hint of ITP. LOL, how about a ITP study which investigates a relation between high remission counts and no subsequent relapses?

Maria, yes do check in. I've got a new thread in the works. It will have a genetics component to it and I was hoping to get your opinion on it.

th8899, I saw the news on your thread and hope your son continues to do well as you taper off the drugs. I'll go get an update in a second!
Sandi, thank you so much!
Hal, that's a great idea. The "normal" range is so wide, though, I wonder whether a "high count" in one individual is a high count in another. I looked through whatever lab results I had in my electronic health file from the last 5-6 years, and platelets are always hanging around 200, never nearing the top of the range... I will look for your new thread!

Hi everyone, it looks like we might be back on the roller coaster... My son's knees and shins have lots of bruising, which could be totally normal at his age, but today he also developed 4-5 small bruises on his arm, between his elbow and hand, and they look just like his ITP bruises did (in a cluster). We are going to watch him for a few more days and then probably go in for a count. If it's low or lowish, I think we might travel to an even more specialized hospial to see if they can do another thorough evaluation of his blood work. He has also been suffering from mild eczema on his cheeks and chin all winter, and very dry hands. Otherwise, what's notable is that he hasn't really caught more than a slight cold all winter, which seems a bit unusual, given that he's in morning preschool.

Other than this, we are doing well, expecting #2 in 7 weeks--eek!

Hope everyone around here is doing alright. I'll catch up on the threads shortly...

PS Just reordered the papaya leaf extract, while also reading about the fact that 5-6% of kids with acute ITP experience a repeat episode (one is most common, but multiple times are also possible; four times is apparently quite rare). As long as it actually is ITP and not something we overlooked the first time...

209,000

Doc said he could see the numerous healing bruises and that the number probably dropped during a recent cold but bounced back up. She said it wasn't unusual to see this in recently recovered ITP kids.

Hi maria .. when I red the first post I was stunned I thought , no it can not be itp again .. am so glad that numbers are high ... Keep this way

Good Luck .

Down and back up again in nothing flat. Bizarre.

I remember being in elementary school. They had 'monkey bars' like this.
i.pinimg.com/736x/2b/9a/5e/2b9a5e92af909b24a38e791a3721b29a.jpg
I got bruises all over my legs playing on them, but it was under my long pants and no one could tell. I don't recall telling my mother. Other kids didn't get bruises but I did. Never played on them again. Never thought about the incident again, until recently. Can now put two and two together and come up with: life long ITP.

Hal, yes, he was wearing long pants and sleeves and it probably took us a full week to notice (I mean, I noticed a bruise here and there but it took a while to think "hmmm, these patterns/clusters of small dark bruises look awfully familiar"). I was still shocked to see 209,000 so quickly... not complaining about that though!

Maria, so glad that your son’s count is high. It is high of allergy season in our area right now (I remember both of us are in Montgomery county). My son had much worse allergy than before and his hand is so dry and has to apply lotion every few hours. He has red eye and running nose for the last couple weeks. We have to give him Zyrtec every day. Last week, he even had couple nose bleedings. But I think his platelet is still fine. It is because he has no bruise, no petechiae. His nose bleeding are very brief. We are going back to hemo office next week for two month follow up. Keep our finger crossed. If his count is still hold, we will finally stop Promacta. By the way, I also notice that since my son’s diagnosis of ITP last October, he never caught a cold. Maybe all those IVIG protected him.

th8899 - it could be that IVIG protected them, I hadn't thought of that! Fingers crossed that your son's numbers are high next week!

Hi everyone,

I wanted to share an update, in case it's relevant, or in case you've ever come across this. I wasn't sure if it warranted a new thread, so I'm sticking it here for now.

We welcomed a baby girl into the world 2.5 weeks ago. Everything went well and she seems to be thriving so far.

However, her newborn screening showed a G6PD deficiency -- this is a common genetic mutation that results in hemolytic anemia (red blood cells destroyed faster than they are made), in the presence of certain triggers (fava beans, sulfa antibiotics, naphtalene and some others are the main suspects, but viruses and fever can also cause it). It's an X-linked recessive disorder, and females with one copy of the mutation are usually asymptomatic because the other copy is normal. We are hoping this will be the case for her. (I may be a carrier, and if I am, I've been completely asymptomatic so far--I'll get tested sometime soon just out of curiosity.)

Anyway, with my son's history of ITP, as well as my uncle's and his two sons' ITP episodes, I thought another hematological disorder in the family seemed like too much to be a coincidence. (TL;DR: Uncle was a chronic ITPer until splenectomy in the 1950s, his two sons had single acute episodes as kids that self-resolved after short courses of prednisone in the 1980s.)

I'd be curious to know if anyone else has, or has family members with, G6PD deficiency. In any case, I wanted to report this to the community. The literature is completely silent on any links with ITP or other blood disorders. We'll be going back to our trusty pediatric hematology clinic at some point for advice, and I'll report back if they say anything relevant to ITP.

Hope everyone is enjoying the summer and that platelets are cooperating. (My son is still stable and above 150k.)

maria, couldn't resist reading up on G6PD deficiency.
I get the impression that if she inherited it from you, and you are asymptomatic, then she should likely be asymptomatic too. Yes? Or, did I get it wrong?
On another note. Since G6PD is so common, shouldn't that make it a big target for CRISPR research?

Are you thinking about having a 23AndMe genetic test or something else?

On the side note dapsone can not be given in g6pd deficient people

Hal, indeed, that's what I gather too. I did actually have extensive genetic testing (Counsyl) which found absolutely nothing wrong with me (the genetic counselor said it was so rare for nothing to turn up and I should feel lucky)... but then once she was diagnosed with G6PD, I found out that Counsyl doesn't test for it, due to "lack of clinical relevance" (what!???$#@%). We also did the most extensive available genetic testing for her while she was in utero (microarray), which also turned up nothing. I have yet to call the doctor to ask if they looked for G6PD and missed it or if it's also not included. That test was super expensive, so I'm a little upset they missed it. Of course, no use in being upset now... And I will ask to be tested myself for this specifically.

Interesting thought about CRISPR research, I'd think so! I'll have a look once I log in through my work network (I don't have journal access from my home computer).

--

vrushalin, thanks for pointing that out. Yes, indeed, Dapsone, which is in the ITP arsenal, is off limits for G6PD deficient people. I think they test males with ITP before prescribing it (but not routinely females, which may be cost effective though I'm not sure how wise it is).