Greetings Eli -
Thank you so much for reaching out and sharing your story with me. I am so incredibly sorry to hear that your daughter has ITP. It is such a horribly frustrating illness. It's also isolating. My daughter still has it! In April, it will be 8 months since I first noticed symptoms. To be honest, my attitude towards the illness has changed a lot, which has made our life a little better. After my daughter was diagnosed, I was initially stressed the f**k out. I was writing down her symptoms every single day and taking pictures. I would check her mouth to see if blood blisters were there multiple times a day, and I genuinely felt like I was losing my mind. I would stay up until 3am each night researching everything I could about ITP, including any natural remedies. I was juicing every single day to give her fresh nutrients and changing her diet around. I reached out to academics and scientists all over the world to see if they could help and I just felt so frustrated. I feel like I have looked up everything on the internet about this illness. To make matters worse, I was pregnant with my second daughter throughout all of this (I just gave birth last month).
We would take our daughter to get blood work every two weeks until I just got fed up with the whole process. We stopped going every two weeks and made it once a month because we were getting familiar with the symptoms. I didn't want to keep stressing her out with blood work that didn't really tell me much. Now, we don't take her to get blood unless her symptoms look like they are clearing up. I know how low her platelet levels can get and I know the symptoms...I don't yet know how high they can get, so when she looks super healthy and free of petechiae and bruises, I then take her to get blood work. I read a narrative somewhere online from another parent who stated that you are in charge of your child's health and you make the rules. You don't have to do anything you don't want to do. If you don't want to get blood work every 2 weeks, then don't. I took that advice to heart and started to feel more empowered.
I will say that something weird is happening with her ITP. In October, I started giving her papaya leaf extract after reading a million things about it on the internet. I alternate between these two brands (one is hella expensive, but effective):
1. Herbal Goodness: www.amazon.com/Papaya-Leaf-Liquid-Extract-Digestive/dp/B005TK5MQI/ref=sr_1_8?crid=6U4Q5RPBK1ZM&keywords=papaya+leaf+extract&qid=1648177097&sprefix=papaya+leaf+extract%2Caps%2C136&sr=8-8
2. Hawaii Pharm: www.amazon.com/Alcohol-FREE-Extract-Organic-Glycerite-Supplement/dp/B01BK3W008/ref=sr_1_5?crid=1CKJ92BRX2FNJ&keywords=papaya+leaf+extract+hawaii&qid=1648177131&sprefix=papaya+leaf+extract+hawaii%2Caps%2C71&sr=8-5
When we first gave her Hawaii Pharm, I didn't see much improvement, however, when we gave her the Herbal Goodness brand, her symptoms almost completely disappeared. All of her bruising and petechiae went away, and her mouth looked wonderful. We genuinely thought this cured her, so we went to get blood work and found out that she was still at a 6,000 level, even though she had NO symptoms. In other words, the papaya leaf extract doesn't really boost her platelets, but it makes the symptoms much more manageable.
Around Christmas, we were terrified to be around family because of COVID, however, we decided to risk it because our daughter's been living like she's in a bubble this whole time. As we assumed, she got super sick after being around everyone and we took her to the ER because this was her first time getting sick while having ITP and we didn't know if her platelets would plummet even more. She was extremely lethargic and she had a fever. The hospital discharged us that night and just told us to give her tylenol. The next day she was better and the weirdest thing happened: ALL of her ITP symptoms disappeared for a few weeks. We got blood work and her platelets shot up to 28,000. While that's still SUPER low, we were excited. We thought it was going away, but of course all of her symptoms came right back. However, ever since she's been sick, her ITP doesn't seem to be *as* bad (knock wood). She still gets bruises on her shins, however, her petechiae isn't that bad. I haven't taken her to get blood work in about 3 months (third trimester of pregnancy + birth made it difficult to do that), but we want to take her again to see if something has changed.
Other things I've been doing to manage her ITP:
1) When she bangs her legs or falls, to help with the bruising, I mix a drop of lavender essential oil + frankincense extract with coconut oil and I rub it on her bruises. Lavender and frankincense help with bruising. I eventually want to put a drop of frankincense extract (the food grade version, not the potent essential oil for external use) in her milk to see if that helps. I read this blog post a few months ago and reached out to the author who stated that her son used frankincense to help with his ITP: craftyourhappiness.com/2015/02/25/charles-cures-the-incurable/
. I have recently implemented frankincense into my own routine to help manage anxiety and stress (which it does) and it has been life-changing. I've been using this brand: www.amazon.com/dp/B072HFTNM2?ref=nb_sb_ss_w_as-ypp-ro-model_ypp_ro_model_k0_1_7&&crid=307IUWI769X07&&sprefix=frankin
. I put a drop in my water at night and it immediately calms me down.
2) I try to not stress her out. Because she's 2, she's already so emotional and stress is not good for autoimmune diseases.
3) I have added beets into her diet. Initially I was cutting up some raw beets, but my husband said he didn't know if that was healthy to do, so I now give her cooked beets almost every day and I feel like it genuinely helps.
4) I started giving her vitamins. I know that vitamin k and d are great for blood health. She takes Smarty Pants toddler vitamins. I don't know if it's helping or not, but I want to ensure that she's getting nutrients.
I let her live her life without ITP limiting her too much. Yes, there are certain things that she can't do now because of it, but we still take her to the playground and let her play with other kids. We monitor her much more closely to ensure she doesn't hurt herself, but we don't stop her from living her life.
Feel free to reach out to me at ANY time. I think the best advice I can give is don't let the illness ruin your life or her life. Yes, it's stressful AF and there are times where you're going to want to flip out and cry, but once when you learn to live *with* it, it just becomes a part of the backdrop of your day - not the main event. There are times I completely forget that my daughter has it. Unless she starts bleeding out heavily and/or having some type of serious emergency, we just try to enjoy each day and not stress out about it. You never know - it could go away one day...which is what we are all hoping for!
I am here for you if you ever want to chat more or connect in any way. I am glad to meet another parent who has a daughter around the same age as my own who gets this struggle. I hope my message helps. Sorry for the length, lol.