Hi from Sweden. Stumpled upon this great site after doing some researching on ITP. Please bare with me, it's a bit of rambling, because I need to "talk" about it. There are questions in this text. But I'm aware there might be no good answers. =/
I have an 8.5 year old daughter with acute, and quite possibly now chronic, ITP. She's been below <5 for 2 months (we measure a bit differently here, normal values are around 200-300 for comparison). Below 5 is basically "unmeasurable" as the doctors say. Her spleen is very big right now too as a side effect. She's had this ITP "phase" since jan/feb and the reason I write here is I started reading just now about the confirmed link between MMR (measles etc vaccine) and ITP. I've had my suspicions up until now. She got her last MMR vaccine shot in january.... and just afterwards she started getting these ITP issues again. I say again, because she had this 3-4 years ago as well. It took her a better part of a year to self heal from ITP, but it wasn't as "bad" of an ITP as this time. Before the vaccine shot in jan, she also started school last year (= bacteria and viruses... as we all know) and then mid winter got this last MMR vaccine shot. And feb/mar she also got the seasonal Flu.... on top of it all... it wasn't fun! Then ITP got worse and worse....
Note, When she had ITP 3-4 y ago it was somewhat the same scenario I believe. Vaccines, flu, bactieria and viral infections...
Apart from this, my daughter also is handicapped mentally, undiagnosed "problems" from birth noticed during pregnancy... born 8 weeks early and 40% underweight as well. She was really tiny. She's still the size of a 1-2 y old, we carry her around, she can't walk or talk or do anything on her own. She's a lovely happy kid, when can be. In her own way. She also has diabetes type 1 since age of 1, have had bad atopic eczema first years of her life, leading to very bad sleep problems that's taken a toll on me. She's had countless pneumonia in her life due to issues with her airways... I got tired of giving her antiobiotics, AFTER she got sick. Just reactionary management. Didn't like it. I eventually asked the doctor why not give her antibiotics... always, to help her out a bit. And to my suprise the doctor said: "OK, let's try". So since then (3 y ago) she's been on antibiotics taking it 3 times a week, a fairly small dose, just to keep the worst off. It's actually helped, a whole lot. She now can get a simple cold, without it turning into pneumonia everytime. She's on Azithromax (azithromycin?).
My reason for posting here..., is partially to just talk about it. And I'm curious, am I possibly on to something? Is there a test to be done on her to somehow see what she reacted to, or reacts to? Her immune system is currently so efficient that even when given pure thrombocytes in IV, they don't stay even 1 hour in her system.... She was hospitalized for a few days last week as she was very bruised... and dehydrated. All IVs broke her veins, and she's just a mess right now. No more IVs can be used on her. We desperately tried to raise the thrombocytes count enough for surgery to put in a portacath. But it was unsuccessful. She was also given "privigen" via IV a few times, but it had no result during these days. A week after we're now at home, with very low and unmeasurable count of thrombocytes ... and she's starting again to have bleeding symptoms meaning we will have to go to the hospital soon... but there will be no treatment available for her...... no medicines simply works anymore, lasts or is even humane to give her due to no IVs can not be inserted without a lot of pain. She was anesthetized to insert an IV (too painful otherwise) but there was complications and they had to put a tube down her throat leading to lacerations on tounge etc and no she's not been wanting to eat or drink normally due to her throat being so sore.
She's been on Revolade also for almost 2 months, but it hasn't helped. Instead her blood value (hb) dropped to 60 and during last week's drama revolade was put on a pause and her values increased to 83 this week.
We might try cortizone again but since she has diabetes type 1, it's not a great option. She's had a high dosage, 3 day thing, earlier this year but it had no effect.
My mind set is to just power on, but as I'm a programmer by profession (i still work full time......), tech nerd and analytical by nature, I really want to understand this ITP. It calms me down knowing how stuff works even though it kind of is beyond scope of comprehension. I just don't like giving reactionary treatments "after the fact". I want to see proactive solutions, if possible ofc, like I mentioned about me, weirdly, recommending the doctor (why did i have to do that?) to just subscribe continious antiobiotics proactively. That worked wonders and has made life a lot easier overall. Now it's just this ITP thing, but I know ITP is a completely different thing and it's complicated.
I know a lot of you out there might've gone through the same thing I'm doing. Is this a path I should continue, or just be more accepting and let go? Because with no treatment, what is gonna happen to my daughter if her blood values stays so low? Will organs start failing? I'm not sure her doctors are giving me the straight answer I want to hear. It's a lot of softened words. What is death from ITP like? What are the first signs I should look for? What can I do?
Thx for reading this far. Any comment would be appreciated.