TOPIC:

My 3 yr old son has recently been diagnosed with ITP - we are now 5 weeks into it. The first platelet count we received was 5,000. That evening we did the IVIG and his numbers raised to 11,000. Since then the highest he reached was 108,000 but since then we have dipped back down to 13,000 as the Hematologist suggested the IVIG has left his body now. We have been going back and forth as to if we should treat again with the IVIG since he is such an active and clumbsy 3 yr old. All I think about all day is how he MIGHT be the one who hits his head hard enough and has a brain bleed. He hasn't had any nose or gum bleeding, only bruising on the body and petichiae. My husband and I's family are constantly suggesting different foods to try or send me to sites that are made by "Joe Schmoe" and my question is if anyone has had an success? I work in Physical Therapy so I appreciate research but to me, I'm not finding enough to back up the diet ideas. I have found great peace of mind with reading this forum as I have the "Mom guilt" and feel we aren't making the right decision by playing the "wait and see" game. I am starting to feel more eat ease with paying more attention to symptoms versus getting hung up on the numbers. So please, anyone, throw your information or experiences with any changes in diet that you feel have helped with platelet counts.
Thank you!

Many people have tried different things, but it seems to be different for everyone. It seems like the people who have the best success are those that go gluten and sugar free, but it's not a sure thing. It can improve overall health even if it doesn't help the platelet count.

I tried gluten free. Never made a scrap of difference to my count.

That's actually an interesting title Erin.
Let me explain as I understand it. With ITP the immune system is destroying platelets. Theoretically, if one were to make the immune system 'stronger', by diet or whatever means, one would think the destruction would be even more intense and lead to even fewer platelets. Not a good idea. But in practice, diet has little to do with strengthening or weakening one's immune system. If it did, odd things would happen. Something like, one would eat some berry/vegetable and one could suddenly get the flu afterwards. Or conversely, eat some food and not get the flu afterwards. As you can see, it doesn't work that way. For our own survival, it is fortunate that the two are not tightly coupled. So diet as a panacea doesn't follow for an 'auto immune' disease like ITP.

With ITP treatments, which lead to remission, the whole idea is 'suppressing' or weakening the immune system. Weakening key part(s) of the immune system long enough to allow it to properly realize self from non-self in regards to platelets.

What can work in a small number of cases, with diet, is the notion of 'inflammation'. As Sandi mentions, sugar is pretty inflammatory to the body. A lot of folks don't realize this. Children may end up getting a lot of it in their diets. There are parents on this formum who have reported good results with Paleo or various Paleo-like diets.

Back to your questions. As I recall from reading studies, something like 60 or 80% of children get over ITP in less than 6 to 12 months. So 'watch and wait' makes a lot of sense - even if it is a difficult pill to swallow. Here is another thread that should address your IVIG treatment dichotomy.
pdsa.org/discussion-group/7-treatment-general/29819-can-t-afford-sons-treatment.html#60802

Hope this helps.

"What can work in a small number of cases, with diet, is the notion of 'inflammation'. As Sandi mentions, sugar is pretty inflammatory to the body"

I got a good laugh at this.

My wife is trying to get me eat healthy. I need to let her know that she has got it all wrong.

Ah, I see I should have said:
What can work in a small number of cases, with diet, is the notion of minimizing 'inflammation'.
Yes?
Ok Jay. Are you confessing you eat too many sweets? What a coincidence. Take a look at what Wiki says about Neutrophils and ingested glucose. Weren't you asking about falling Neutrophils in another thread? As they say, the proof is in the pudding. LOL, try a low sugar diet test? Maybe your wife is right.

Thank you all for your input. It's nice to get feedback from people who directly effected by this diagnosis. My husband and I have been struggling with our choice of treatment as our Hematologist hasn't given us the guidance we'd like or think we should be getting. She is great, but sometimes we feel that we just want her to make the decision for us instead of saying, "whatever choice you make is reasonable." This whole ordeal is just one big fat QUESTION MARK!

This is how I see it after my research. First, it is possible to have a healthy, strong immune system while having ITP. The goal isn't to do whatever you can to weaken it or tear it down so you'll have more platelets. That won't work. The immune system is a complex thing with many components. You want a strong, healthy immune system regardless of platelet count. Having an unhealthy immune system is a big part of the problem. I realize that some of the treatments do suppress the immune system, but that suppression also makes a person more susceptible to cancer and other serious health issues. Immunosuppression is not an ideal situation and although the treatments actually cause that, it's not natural and wreaks havoc.

Years ago, whenever anyone would talk about diet and leaky gut, I thought they were nuts. In the past few years, I began seeing a lot of articles about it and began to read. There is truth to it, and a large portion of the immune system is in the intestines. One of the theories behind gluten is that it's not necessarily the gluten that causes the problem (unless you have Celiac's), it's the glyphosate IN the gluten that is the problem. No one will ever convince me that it's safe and leaky gut is real. Doing what you can to heal it can never be a bad thing and even if it doesn't cause a rise in platelets, it can possibly prevent other illnesses. Once leaky gut begins, toxins are released into the blood stream. Food has everything to do with the immune system (Hal, flu is a virus which you can't get from a berry, lol). Research epigenetics. It's basically being born with a genetic predisposition to something, and poor lifestyle choices and/or environmental toxins can trigger it. They did experiments on mice, same litter with the same predispositions. One was exposed to a poor diet and one had a healthy diet. The one with the poor diet developed those serious health problems and the other stayed healthy.

I'm not saying that your son has a poor diet. Many external things can cause those bad changes in the body. Vaccines, antibiotics, etc.....and as Hal said, sugar, which is very inflammatory. Anything that causes inflammation or disrupts bowel flora can lead to health problems. Inflammation in the body is one of the things that triggers autoimmune problems.

Jay - your wife is right.

Erin - I know it can be frustrating to have a doctor that isn't directing you, but ultimately it is your choice to make the best decision for your child. Research and learn, take one day at a time and trust yourself. In the long run, it's better than having her constantly pushing treatments that can potentially cause long-term side effects.

Erin:

These videos will give you the back-up info you are looking for.
www.youtube.com/watch?v=ElI5q0BWKv0
www.youtube.com/watch?v=cdSCY7W-BUo

There is also a Part III if you want to keep going.

Over the last few years, I went for a period of time for a weekly count. This gave me the opportunity to notice how my diet might influence my counts. I did notice a slight improvement when I stopped gluten and sugar and drank green vegetable drinks. I struggle doing this consistently. It’s by no means a cure. But, it seems to often create a a small to moderate bump in my count and I certainly feel much better when I do this consistently.

Hi,
Our Haematologist (pediatric) told us that the Diet is not influencing the ITP platelets, but I think they have not find the correlation yet.
I started to give my daughter vit. D (my initiative) although she had normal level at the time (low side border). I do not know if this works for the platelets, but just something to cinsider.

Hi Erin, if you are still around, how is your son doing? Did you end up adjusting the diet? I hope ITP is long gone.

Thank you for checking back in! We are still on the ITP rollercoaster but making gains, slowly but surely! Last week my son's platelet count was up to 113,000! We hope that we are nearing the end. We never did make any changes to his diet - mostly due to the fact that he is 4 and is a picky eater. The only thing we did for a few months was use an oil from Doterra that my sister-in-law gave us. We stopped using 2 months ago as we didn't see much of a change and his numbers have been going up on their own.

Thank you so much for the update. It's great to hear your positive news!

That is good to hear, may I ask which oil and how you used it please. My 5 year old nephew has just been diagnosed In Feb 2021, first test was 2000 so my sister is stressed to say the least. He has gained well after anti body transfusions but slides down again. She is looking for anything diet or supplemental that may help him. Thanks

Aunty: I was at 60k platelets when diagnosed with ITP. I went to a naturopath who recommended sesame seeds in any form (I eat tahini regularly on toast or create sauces with it on vegetables etc. Also, dark, leafy greens and alfalfa pills.
I don't know if it was 'co-incidence' or incorporating this into my diet but my platelets did go up to within a normal range within about 6 months and have remained for the most part at 140-170k for the past 10 years. Seems like it's worth a 'double blind' scientific research study of diet and ITP to see if results can be systematically repeated.