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maria3132 wrote:

We did go home. Had a long chat with the head of the hematology department who threw everything on the table, from Nplate and Promacta to splenectomy. When we looked at him with a slightly raised eyebrow, he did admit he was getting a bit ahead of himself (it's been 1.5 months since diagnosis). Perhaps he knows something we don't... Going back to the clinic for a CBC on Tuesday.

In the meantime, I ordered the papaya leaf extract. I'm trying to read up on toxicity. While I am very skeptical about its efficacy, if it's safe, I'm willing to give it a try, given the literature on dengue (although I realize that's a different scenario altogether).

I'm happy to hear that you are headed home. I'm sure all of the poking was no fun for your little guy. You are really in the early days, so hopefully they will continue to let you just treat the symptoms and see if you can get a remission without too much intervention in terms of drugs and procedures. I'm still bummed (all of these many years later) that they gave me a splenectomy as a child without giving me more time to see if I could have achieved the remission that so many kids with acute ITP get! Obviously options were very different then, but your plan of watchful waiting with perhaps periodic IVIg sounds like a great one for now.

Hang in there, and I hope that he gets a good run of safer counts from the IVIg! So many kids really do spontaneously improve, so you just never know.

Thanks to you all for the awesome support, especially over the past few days. I wanted to post my son's history, for my own record, as well as in case it helps someone else reading this. I will update periodically.

Late June - mild cold and runny nose; some drops of blood from nose, assumed it was from runny nose;
July 1-4 bruising on extremities and forehead, and petechial rashes on cheek and back
July 6 - diagnosed with ITP, PC 1.9K, aPTT slightly prolonged
July 6 - treated with 1mg/kg dose of IVIG;
July 7 - at discharge, count 9 K, symptoms improving over the week;
July 9 - checkup, count 54K
July 16 - checkup, count 8K, aPTT coming down, almost in range; NP opinion that it's reactive (e.g. to a virus); some bruising, petechiae and drop of blood from nose;
July 16-17 - treated with 1mg/kg IVIG x 2 days
declined CBC, symptoms cleared by next day
July 29 - noticing some petechiae
July 30-Aug 15 - slowly increasing petechiae, mild bruising
Aug 17 - noticed widespread petechie; count 10K (oddly, more petechiae than at diagnosis; fewer bruises, but we had been restricting climbing, etc.)
Aug 18 - treated with 1mg / kg IVIG, symptoms cleared by next day
Aug 21 - followup without a count since he has no symptoms and knowing the number would not change treatment plan
====updates to this post===
Aug 26 - very small (1 inch) petechiae scratch, started papaya extract, 3/4 Tbsp per day
Aug 29 - count 48K, a few bruises around knees and a few petechiae on the back
Aug 31 - no new marks, increased papaya to 1 Tbsp per day
Sept 1-3 - petechiae from scratching on chin, stomach, back, small bruises around knees;
Sept 7-8 - 2-3 small bruises (back, shin, forehead), small areas of petechiae (back, collarbone)
Sept 10 - count 43k, increased papaya to 1.5 Tbsp per day (1 Tbsp morning, 1/2 Tbsp evening or vice versa)
Sept 11-12 - 2-3 new bruises near knee, no petechiae; N.B. started preschool.
Sept 13 - small new line of petechiae, no new bruises
Sept 14-15 - no new marks
====================
He has also been quite itchy and has had a mild, bumpy skin-colored rash on his arms. Other than this, he has had no symptoms and has been full of energy and eating and sleeping normally. I have some family history of ITP on my dad's side, which is unlikely to have been passed down because it's thought to be linked to a recessive gene on the X-chromosome. Specifically, my uncle's childhood ITP resolved at age 12 after a partial splenectomy (or it could have been full and the sleep regenerated itself - in any case, my uncle is today a healthy nearly 70-year-old *with* a spleen). His son had an acute case around age 10, which resolved after a single course of prednisone, over a few months. My son's nurse practitioner (NP) and hematologist don't think these are related (they ran tests for some of the implicated factors and nothing has come up so far).

In more heartwarming news, my son has been playing doctor with us and offering us ice or new batteries (!) to fix our platelets. He picked up the word platelets on his own, from hearing us talk, we have only told him that he is getting medicine for his blood. I suppose IVIG is a bit like new batteries, which he knows we use to fix his toy car.

And finally, based on the literature on Dengue I ordered some papaya leaf extract but it turns out it's 30-40% alcohol, and tastes really bad, so I won't be giving any of it to him. I'll ask the NP tomorrow what she thinks and maybe look into the fresh leaves or capsules. The head of hematology thought it was fine to try (he shrugged and said "you never know, probably won't hurt").

Maria, this is the papaya leaf extract I bought for my son. smile.amazon.com/gp/product/B005TK5MQI
It taste ok, my son accepts it with a little bit whine. I don't know whether this is useful or not, his count has been rising very slowly but consistently over the last 2 years (from 11k to 45k), but I have tried a lot of other things too. It is also possible that this would happen without any diet change, we won't know because there is no "what if".
He still has one or two bruises occasionally and petechiae from time to time with current count. Nurse said it is normal for things like seatbelt cause petechiae for a lower than normal count.
I used to be like you, count every bruise every day, even take pictures for every bruise so I can compare them. I also wrote down all the food he had to find the relationship between the size of bruise and the meal he had. (I did find that when his count was lower than 20, he had a nose bleeding the night he had salmon as dinner:ohmy: , every time. ) I stopped doing that after one and half year. It will get better, hang in there.

Thank you, TJ! That is interesting about the salmon... I am glad to hear your son's counts have been rising! 45k is great.
I just ordered the papaya leaf extract you recommended - thanks for that.

TJ, I ordered the same supplement and you're right, it doesn't taste that bad. I mixed it with yogurt and that seemed to work well. However, I'm not sure of the dose for kids. I've given my son approximately a third of the adult dose, vaguely based on his weight. How much do you give your son? Thanks a lot!

On another note, I have done more digging on papaya and the only peer reviewed studies I can find are about the effects on dengue, which suppresses the bone marrow. If anyone has any reliable literature on the mechanism of action of papaya (if any), I'm all ears... The best possible "proxy" i can find is the mechanism of action of the dengue virus, but even there, scientists think more than one process is in action: www.nature.com/articles/srep41697

I gave him half tablespoon every time. Honestly I don't know whether this is useful or not, I give him this, along with daily beet, avocado, kale, banana smoothie, kids probiotics (he had a stool profile test, and the report said he has less type of "good germs" than normal), papaya fruit, beef liver... and anything that I have read somewhere that might help.

Today, 11 days after his third treatment with IVIG (single dose this time), his platelets are 48,000. We are fairly pleased with that although he is definitely trending down in terms of symptoms.

He also continues to have a slightly prolonged aPTT, which is unusual but not totally unseen for ITP. They're doing an additional factor (IX) analysis. Fingers crossed it comes back ok.

TJ, I will stick with the papaya and report back after the next count. So far it doesn't seem to be hurting and *may* be helping.

Just an update: in terms of symptoms, he has been about the same or slightly better this week than last week (I can't tell 100%, but it's almost certainly not worse). He has a few (1-3) small bruises and very little petechiae (no longer in streaks, but a few small clusters here and there). He has been taking a tablespoon of papaya extract every day, and the stabilization of symptoms started about 3-4 days into the papaya business. I have no idea whether that's helping or not but I'm going to continue giving it to him. He goes for a count on Monday, and is supposed to start morning-only outdoor preschool on Tuesday if his count is in the neighborhood of 50.

i wouldn't add the papaya extract because you have no idea as to the side effects. when you take these kinds of things there are always side effects. his age is a big reason also i would say hold off. plus what happens when you add papaya extract to the other things you are trying. the papaya extract might actually cause the other thing or things not to work. the best way to go about it is try one of the normal things(example IVIG ) at a time if nothing works then go to the funny stuff like papaya extract. that was my approach.
you could make sure he isn't low on any vitamin or mineral and supplement that. that's as far as i would go at this point. check his vitamin d level.
i understand the need to solve this thing as fast as you can but slow and steady wins the race.

I hear you, John, but it's been cleared by two hematologists and I've read a lot about it, including well designed studies that were focused on the safety profile. Toxicity was found to be virtually zero. The particular supplement is tested by USDA.
He is not taking anything else. I share your skepticism but after doing all the research, I'm much more concerned about side effects of conventional medicine.

i doubt there has been any studies done on the effects of papaya extract on 3 year olds short term and long term.
i do hope things work out for your son. good luck.

Maria, if it's of any help.
I did some papaya leaf research back when first diagnosed. Then when I published my ITP table much later, reviewed one study again to see if I could get a clue as to which ITP type papaya leaf was helping. Nothing conclusive, it looked like it might be row 1.

With that, I wonder if papaya leaf has something in it which suppresses the immune system in some way. The problem with row 1 it takes a lot of suppression to really raise counts. Did a lot of folks in the studies you've seen have relatively higher counts at the start of study. Maybe in the 50 to 70 range? Maybe those folks didn't need a lot of suppression to restore counts to normal.

Oh, BTW. I only have 'KittieG' in my notes as reported success with papaya leaf. I have her down as type 1 in my notes. Maybe I used her in my decision that it works with type 1 folks.

Hal, thanks! The studies are mostly on Dengue patients, so if anything, I'd expect some effects on ITP that correlate in onset with an infection (or vaccine, ie pseudo-infection). The head of pediatric hematology who cleared the papaya for my son basically said it was fine in terms of safety but not to expect much because "ITP isn't Dengue." The Dengue studies mention patients with a wide range of counts, many quite low, e.g. 10K and some higher. They tend to show incremental improvement over a matter of months and it tends to be modest (20-30K but hey, we'll take that!). There are some accounts of ITP patients using papaya in the Amazon product reviews but I don't trust those so I've basically dismissed them (tempting as they are as a source of hope).

For your table, TJ's son also seems to have responded to papaya but of course the pediatric group might be its own category (or not, who the heck knows).

I would think that if anything, papaya could be helpful due to its antioxidant properties, not immunosuppression. Just my 2 cents.

I was being a geek and plotted my son's
* 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).
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.

You can see that the time it has been taking him to develop concerning symptoms (and presumably drop to very low counts) seems to be increasing; we are getting comparable mileage from the most recent single dose of IVIg with what we got from the previous double dose.

--
updated Sept 15

Holy smokes, they've got inline pictures working. Don't think that has worked since I've been here on PDSA.
Nice graph. I was looking at the raw data listing earlier. Much easier to see the pattern you mention with a graph.

Yes, there is the claim that children are a unique class but haven't seen any compelling evidence supporting that.

Thanks, Hal! As an ignorant newbie, I just assumed posting an image would work and it did.

Sandi, on papaya, the various study authors have various theories. The only one that seems to have attempted to actually find the mechanism of action found that:

"An increase in arachidonate 12-lipoxygenase and the platelet-activating factor receptor gene expression was also* observed in the intervention group. These genes are associated with increased platelet production."

*in addition to higher platelet counts

Other theories are related to the vitamins and minerals found in papaya and some suggest that multiple processes are at work. (I tend to gravitate to those, i.e. to thinking holistically about complex systems, although systems are obviously harder to study than individual variables.)

Here's a literature review in case anyone is curious: www.ncbi.nlm.nih.gov/pmc/articles/PMC4071726/

The issue is that most or all studies have smallish samples and some of them have other problems. The conclusion: more and better studies should be done...

43k today (close to the 48k from 12 days ago). Doc says that's a good sign and he is batting above average for the typical ITP kid he sees. Also, he said he was seeing 7 ITP kids at the moment. One just went into remission after 8 months - diagnosed in January and only recently climbed above 100k.

Sandi, you will be happy to know he also recommended holding off on the flu vaccine because it can send counts back down.

I'm definitely sticking with the papaya, just in case it's helping.

I notice you updated the graph already. That 43 looks really good.

Yes, that does make me happy!

Good news on the counts!

Today is day two of outdoor preschool (where they spend most of the time outside, hiking and stuff, including on rocks). The teachers asked him to wear a helmet when out hiking. I keep wondering if he will hit his head somewhere. Thankfully his symptoms are ok right now - just bruising around his knees (four on one knee and two on the other) - so I'm fairly confident he's in a relatively safe range as far as the potential for a head bleed. I've upped the papaya to 1.5 Tbsps. Still no idea whether it's helping, but there's a pretty direct correlation, and no side effects, so far, so sticking with it.

One benefit of the fact the preschool is (mostly) outdoors is that they don't spend a lot of time couped up and sharing germs in a small space. So I am hoping we can avoid the usual preschool tradition of being sick every two weeks, which is what most of my friends' kids seem to go through.

Here's hoping for no virus-induced platelet crashes...

Sounds good, Maria. I'm glad he is having fun in spite of it all!

He has been fine over the weekend (no new symptoms, most bruises fading), but today he has a runny nose and cough, and I spotted a few petechiae around his left wrist after preschool pickup.

I'm almost certain he's coming down with a virus, so it'll be a real test for his platelets.

Onwards with the rollercoaster...

Sometimes during an illness, counts actually go up. I hope that's the case this time!

Sandi, I think I read that somewhere else on this site... I certainly hope that's what happens, but do you know the reason/logic behind it?

YOU GUYS. The ITP Association in the UK has put out an APP that makes GRAPHS! It's funded by Novartis.
Can we have a PDSA app with graph making functions?

myhealthapps.net/app/details/538/ITP-Pocket-Log

In other news, my son is ok but does have a fresh green bruise on his back. To be continued...

Maria - the simple explanation for counts that go up during illness is that the immune system gets distracted from destroying platelets and fights the virus/bacteria instead. An analogy would be from the movie War Games when they tried to distract computer Joshua from destroying the world by making it play games instead.

The graph idea would have to be submitted to Carolyn. If you can't contact her, let me know and I will.

Sandi, thanks, that makes sense. Based on my son's symptoms, I don't think the distraction is working, but then, as so often with this condition: who the heck knows.

I just tried to download the ITP Association's app and the link didn't work. I also can't find it in the app store. So perhaps they decided to stop maintaining it.

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).

Maria - done!

Thank you, Sandi!