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My 2.5 year old was just diagnosed with ITP 1 year 4 days ago #71822

  • agarr7
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Hello everyone! I'm new to this forum. I'm glad that I found it because I need to connect with others who are going through a similar thing. I've been on google day and night just researching anything I can about this disease. 

My daughter started exhibiting a small petechiae rash at the end of August. I initially chalked it up to a viral thing, so I didn't think too much of it. A couple of weeks prior, I took her to a story time session for kids at the public library so I thought that she caught some viral thing.
The petechiae rash started to spread all over her body. At the same time, I started to notice these large bruises popping up all over her body. A majority of them were on her shins, and since she's a toddler, I just assumed it was normal. To confirm that everything was okay, I decided to make a pediatrician appointment after the petechiae didn't go away after around 2 - 2 1/2 weeks. 

The pediatrician decided that we should get some blood work done to see if she has a blood-clotting disorder. After they received the results, they called me and said I have to immediately take my daughter to a children's hospital because her blood platelet level was 7 (7,000). I didn't understand this completely but I took her to the hospital. At the ER, they ran her blood again, and her level was at 9. They told us that they would discharge us since my daughter wasn't actively bleeding and didn't appear to have any other issues. They told me to make a follow up appointment with the hematology department. 

We went to the hematology folks two days later. Her blood platelet level was at 12. We decided to do a watch and wait method. We don't know if she has acute or chronic ITP. The doc said that ITP cases in kids her age usually go away after about 6 months, however, we're scared. The hematology people want us to get blood work every 2 weeks to monitor her progress.

We are due for blood work this Saturday and I'm genuinely terrified. The petechiae rash is still present (in fact, there might even be more on her body) and her bruising is still present. She also has a few blood blisters in her mouth and small petechiae patches in her mouth. I think she's had ITP for about a month-ish. I was hoping it would start to look better, but it's hard to tell.

Until she is actively bleeding, we don't plan on providing her with medications (unless her doctor thinks it's necessary). Right now they don't think she needs it (knock wood), but living with a 2 year old with ITP is terrifying. I'm so scared that she's going to fall and get a horrible injury. I bought her some comfy knee pads and I've been giving her a really healthy and clean diet to see if that helps. I have also been giving her some beet juice. 

I'm just praying that her platelet levels are naturally increasing. I just wanted to vent because this is so stressful. Thanks for reading. Feel free to share your own stories with me if you're going through something similar.

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My 2.5 year old was just diagnosed with ITP 1 year 2 days ago #71828

  • MelA
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Hi agarr7 - I'm an adult with ITP so I really know anything about a child with ITP.   But believe me I do know how frightening it is to have a child who isn't well.   It sounds like you are doing all the right things.  And it sounds like her platelets are increasing without any help - I hope that continues.  I believe today was another blood draw for her - please let us know how she is doing.

Hopefully someone with an ITP child will be here soon and respond to your post.
Take care and keep us posted! 
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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My 2.5 year old was just diagnosed with ITP 11 months 3 weeks ago #71842

  • agarr7
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Thank you so much for your message. I apologize for the delay in my response. If you don't mind me asking, at what age where you diagnosed with ITP?

Well, the blood work showed that her platelet level dropped to 6 (6,000) from 12...so we were absolutely crushed. We get more blood work done in a day so we'll see where her levels are at. I feel like her petechiae rash on her chest is getting a bit better (although it's still definitely present) and she currently doesn't have any blood blisters (wet purpura) in her mouth (although they pop up like every other day or every 2 days). I'm really praying that her platelet levels have risen just a little to offer us some hope. 

She still bruises SO easily, so I know the levels are still low, but we're aiming for anything over 6! Her doctors are a little concerned about the wet purpura. They said they are right on the edge of treating her, but they still want to wait and see if she improves on her own before going down that road. I'll let you know what your blood platelet level is at on Thursday. Thanks for your kindness and support :)

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My 2.5 year old was just diagnosed with ITP 11 months 3 weeks ago #71843

  • MelA
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Early 40s - I was "fortunate", my only symptoms were petechiae and massive bruising.  

So sorry her count has dropped - know that is a big worry!!  I do like that your daughter's doctors aren't rushing to treat her with every known treatment, so many do that.  

I'm hoping you get some good news with Thursday's blood draw.  How is your daughter doing with those bless her heart!   Sending good thoughts your way!! 
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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My 2.5 year old was just diagnosed with ITP 11 months 3 weeks ago #71844

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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agarr7
I too was diagnosed as an adult so not sure how much help I can be. Have you seen this link ?  pdsa.org/children.html 

 

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My 2.5 year old was just diagnosed with ITP 11 months 2 weeks ago #71845

  • agarr7
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Wow - early 40's. Has ITP significantly changed your quality of life, or have you found a way to navigate through it?

Today, her blood showed that her platelets are at 4! The doctor said it's still within the range as last time (6), but we're still crushed. We're still going to do watch and wait since it's only been almost 2 months that she's had it, but I almost had a breakdown today. I NEVER thought my child would be going through this at this age...and what makes things even more stressful is that I'm currently pregnant. I haven't had a chance to really focus on my pregnancy because I've been so preoccupied with ITP.

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My 2.5 year old was just diagnosed with ITP 11 months 2 weeks ago #71846

  • agarr7
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Thank you so much for sharing the link. If you don't mind me asking, what was your age when you were diagnosed and what are your platelet levels now? 

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My 2.5 year old was just diagnosed with ITP 11 months 2 weeks ago #71847

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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agarr7
I was in my 50s. My count is usually around 40-50 but has been as low as 2.  

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My 2.5 year old was just diagnosed with ITP 11 months 2 weeks ago #71848

  • MelA
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I am so sorry your daughter's count didn't go up - sounds like she has a good hematologist, my old one [am now with one who is closer to my house] would have said the same thing about 4k & 6k.   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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My 2.5 year old was just diagnosed with ITP 6 months 1 week ago #72259

  • Eli
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Hi aggar,

How is your child doing? Our 2.5 year old was diagnosed with almost 3 months ago. Our stories sound very similar, except that we were sent to the ER when our pediatrician saw how low our daughters platelettes were,  and we were admitted for the weekend with 2 IVIG treatments. Since then our daughters platelettes have never been much above 30, and we've done another weekend of ivig (all of this hospital time was during the omicron rush in nyc) and two 5 day prednisone bouts. She gets up to 20 thousand or so, and then drops right down again into single digits. 

I'm seeing petichia and a few mouth blisters today, along with lots of bruises, so I bet she's low again. We weren't supposed to do another CDC until next Monday but I'm sure the doctors will want us to go in tomorrow. For what, though, if the treatments hardly do anything? Of course I'm going to get in touch with them tomorrow, but I feel kind of doubtful that they'll be able to offer any new info. And feeling more reluctant to do more treatments that only "last" for a week or so. 

Anyway, I just wanted to commiserate with you. I hope your kid is doing well and ITP is a distant dream by now for you! 

-Eli

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My 2.5 year old was just diagnosed with ITP 6 months 1 week ago #72265

  • agarr7
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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.

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My 2.5 year old was just diagnosed with ITP 5 months 1 week ago #72325

  • Eli
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Wow! Thank you for this. It's so amazing to connect with another mom in a similar (nearly identical, it sounds like) situation. And congratulations on bringing a new baby I to your family :)

At 4 months in, we are starting to reach a point where we feel confident enough to forgo some of the blood draws. She hit her head last week so took a short course of steroids and that bumped her up for about days. But right now we're at that scary point where its Friday and last time we checked (tues) she was at 5...we're just going to try to roll with it and be careful. I tried taking your advice to just serve beets here and there but I keep cooking them and then forgetting them haha. And I think ill take a look at the papaya leaf extract. We actually eat papaya pretty frequently.
 
If anything, this strangely benign/terrifying syndrome keeps me constantly aware of how much I love my daughter and of how greatful I am for her health. I hope that our kids continue to thrive, with or without ITP!

And I'd love to hear about anything that you've learned about itp, or just lend an ear to your experience. I hope you and your family are well,

-eliza

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My 2.5 year old was just diagnosed with ITP 4 months 2 weeks ago #72370

  • Eagann
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Hello! My son, age 3, was diagnosed with ITP just over a year ago. Most cases resolve within a few months in children, but his has persisted. I just wanted to recommend the use of lidocaine ointment prior to blood draws to ease discomfort. I didn’t know about it during our first draw, but it has made my son much more comfortable. Best of luck to you.

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My 2.5 year old was just diagnosed with ITP 4 weeks 1 day ago #72616

  • GMar
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Hello, 

I don’t know if any of you are still going through the ITP nightmare with your toddlers but I was just there with mine and can commiserate.

My son was 21 months old when diagnosed with ITP with platelets at 11,000. His pedi told us to take him to the ER after I noticed he had developed the petechiae rash and had bruising all over his body in just one day. The doctors basically tried every treatment they could think of with short lived improvement.

He was given IVig twice and platelets went up to 23,000 after 2nd dose but dropped the next day to the teens. He was then given prednisolone but dropped to 10,000 a couple days after finishing the medication. Hematology gave him IV WinRho and his number went up for one day and dropped again to 10,000. He was then given dexamethasone, which only increased platelets to around 35,000. 

I did not want him getting any more intense medications that did nothing but give him side effects. It was at that point that I started giving him organic papaya leaf extract (herbal goodness). Because he was not even 2 years old yet, I did not give him a high amount- I gave him 0.625 ml twice daily. We did not see a steady increase in his platelets until about a month later. And about 2 months after starting the papaya leaf extract, his platelets finally came into the normal range at 162,000. 

I’m not sure if it was the papaya leaf extract by itself that brought it up or if his body was just healing on its own after 4 months with low platelets, but I feel like the papaya leaf did probably play a big role. It didn’t cause any side effects for him. I discussed with the pediatrician, and he said he thought it wouldn’t hurt to keep him on it for a couple months after platelets improved since none of the traditional treatments seemed to help him.

He still gets some mild bruising on his legs but he is a very active 2 year old who falls regularly as he plays.
I am so thankful we have gotten to this stage and am ready to enjoy the fall season with my little guy. If anyone is in the middle of experiencing this with their child, please feel free to reach out.

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