I'm new here, so not sure if this question has been asked before. I have a 7th grader who was diagnosed with ITP right after she got her 6th/7th grade vaccines. She got the DTaP and Meningococcal, but we opted out of Gardasil, as I've heard so many bad side effects with that one. She had a CBC just a month before, as part of a physical, and everything was normal, including platelets. Her doctor told us her ITP was most likely from the vaccines and that he's seen it before. It's been 8 months, now, and I thought it would go away after a few weeks, maybe months, but it's not getting any better. I am not liking the side effects she's had with the treatments we've done so far, and frankly none of them are appealing to me. Besides, nothing has helped raise her platelets significantly. Researching the vaccines, a friend told me about VaXXed TV, where a mom of an autistic boy has been traveling the country in a tour bus, and is interviewing parents who have vaccine-injured kids. It must have been ordained, as one of the very first videos I watched was of this woman whose daughter got ITP after getting a single Tdap at age 12, when she went to the ER for an injury.. Up until then she was unvaccinated. What this mom went through is really horrific, and very similar to some of what we've gone through with our daughter. She said she healed her daughter with homeopathy and she's been in remission for 12 years now! I don't really see how homeopathy could do that, and I'm rather skeptical, but also intrigued! I guess even more so, as she lives in the same city I do. I was thinking about looking into it. Has anyone here used it and gotten better? Btw, here is the video if you want to watch it. I thought it was very interesting: www.youtube.com/watch?v=e5T7sHZpw74
Hi, Summer. I understand your impatience with ITP and wish for a faster resolution. Even after eight months, spontaneous remission can happen, so don't give up hope. My daughter's ITP manifested in 7th grade. A little over two years after her diagnosis, she went into remission and has stayed there. She is 23 now, healthy, running half marathons, and the girl who vomited at the mention of blood, but learned to tolerate all those ITP sticks, is now in med school. We can't attribute the remission to any one thing. Likewise, we can't attribute the onset of ITP to any one thing. (Despite my fervent efforts at the time to figure it out.) If you are prone to it, most anything can trigger it. I've read that, after puberty, ITP is more common in females than males. I would not jump to the conclusion that it was the vaccine.
While my daughter was being followed for ITP, she had Gardasil (with no problem) on the recommendation of the hematologist, but it was a bit later than the recommended age, and not while the counts were low. I had declined it to that point, because of reported complications. (Not advocating Gardasil, just relaying our experience.) As for treatments, we generally found the best treatment was none, but monitoring the count and the symptoms. IVIG worked as a rescue treatment if the platelets were dangerously low, or during a nonstop nosebleed that hospitalized her. Decadron pulse brought the count up nicely, but she didn't tolerate the rapid plunge after, to a count she previously tolerated fine. (That's when her nosebleed came.) Prednisone worked to bring the count up for tooth extractions for braces, but the side effects did not merit staying on it at lower counts that were well tolerated. We learned what counts she tolerated. We had to make changes in activities, choosing less risky sports and such, but she did well with no treatment for most of that time.
You mentioned side effects of treatments. Which treatments has your daughter had? How are her counts? Is she being followed by a hematologist? (A good, calm, knowledgeable pediatric hematologist, accustomed to dealing with ITP at puberty, is a blessing to the patient and to a worried mom.)
Thank you for sharing your experience. It's just been so discouraging. My daughter has never been ill in her life up til now, other than having a fever 2 or 3 times as a child, which she always got over quickly. Honestly, she's never even had a real cold-a clear, runny nose a couple of times, but it would go away in a day or two. She had never been vaccinated until these two shots, as California now requires them for school admission in Kindergarten and 7th grade entrance. She was supposed to get some others, too, but she has a temporary exemption because of her ITP. Her doctor has determined that the ITP was from the vaccines. It's not just me speculating about it. I didn't even know they could do that, but he said they are seeing new cases of ITP every week in the last few years, whereas before, they may have only seen 2 or 3 cases over many years. Most of the doctors in the group had never seen a case.
That would be wonderful if my daughter went into spontaneous remission, like your daughter did. It's been so discouraging when I meet other moms in the waiting room, and find so many who have been there for years. It doesn't feel like there's a lot of spontaneous remission happening, anyway!
So far my daughter has had Prednisone, which she actually got psychosis from, so we will NEVER go back to that again! She had WinRho, like the girl in the video, and she also went into anaphylactic shock. But, unlike that girl, they did keep my daughter for observation and gave her a treatment as soon as she began going into shock, so she responded very quickly. They did say she should never have that again, though. Since then, we've mostly just done watch and wait. She has had two IVIG treatments, both of which she had bad reactions to--very ill, throwing up, flu-like symptoms, chronic fatigue. And, because they had to give her some Prednisone in the IVIG, to prevent a worse anaphylactic reaction, she also had a psychotic episode again (not as bad as with the straight Prednisone, however.)
None of these treatments seem safe to me, especially as they haven't done much of anything for her counts. They've ranged from 2k to 17k, staying mostly around 8 or 10k. She has had some lengthy and heavy nosebleeds and her periods seem heavy (though, that might just be hereditary. It's hard to say, as she'd only had two cycles before being diagnosed, so that could just be the normal. She does have a lot of bruising and petechiae, but we've avoid anything too scary. It helps that she's older and you can explain things to her.
These are the reasons that homeopathy sounds appealing to me. I've been talking to lots of moms lately who use it, and they all seem to love it. I think it'd be awesome if she could get better with homeopathy. I'd prefer to try something, rather than sit around waiting for spontaneous remission.
But, I do thank you for your reply. I'm happy to hear your daughter is doing so well, and thank you for giving me some hope, as I wasn't feeling any lately.
My daughter also had a terrible reaction to IVIG the first time she had it. She developed aseptic meningitis. After that, we learned she had to hydrate vigorously and take benadryl and tylenol, before, during, and after, and a shot of decadron after helped head off side effects. If your daughter cannot take prednisone, I doubt a doctor would recommend decadron. I've never tried homeopathy for anything, so can't answer that question. I distrust alternative treatments for any ailment. As for the periods, if they get really bad, you may need to consider a birth control pill. (I know no one wants that for a daughter so young, but they can lessen the severity of the period or stop them altogether when needed.) We found extra doses of vitamin C helped with vessel integrity and decreased the bruising and petechiae. It doesn't raise counts, and you have to be careful that too much will create loose stools. If you try it, use the capsules, as the dusty tart tablets are disgusting to chew. Our doctor suggested nosebleed prevention tips (saline nose spray, hydration, petroleum jelly just inside the nostril to make air flow less turbulent). These worked okay, but my daughter is prone to nosebleeds anyway, so we had those. Perhaps someone else can weigh in on homeopathy. I don't trust it, but not trying to create any controversy. I know I'd have tried anything that wasn't harmful in order to help my daughter.
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Hi Summer. ITP is a known adverse reaction of vaccines and is listed on many of the vaccine inserts. Many parents have reported ITP after a vaccine. Norma is right though, ITP can remit spontaneously at any time, so don't give up hope yet. I personally am not a believer in homeopathy, but a few patients have reported success with it. All of the treatments come with side effects and it can be difficult to choose one.
I saw that Vaxxed video that you are talking about. I've seen many of them...sad stories.
julianne'smom, You're right, her hematologist doesn't think it's a good idea to give her any more steroids with the reaction she had. Her counts are low, but her nosebleeds and periods, while heavy, aren't alarmingly so. She never had nosebleeds before, but I did all through childhood, and my periods have always been very heavy, so wonder if these are more an inherited tendency. She is anemic, so we are working on improving that. I've read that low iron can contribute to heavier and easier bleeding. I talked with her hematologists and they actually encouraged me to try homeopathy. I was a bit shocked at their response! But, they say they've had several patients who've gone into remission after using it, and since she's not responding to or having bad side effects to the things we tried, they thought it might be something for us to try. I'm curious as to why you distrust homeopathy. What I've read about it, it doesn't seem harmful, and I've read several people's accounts now, where they claim that it's been the best thing they ever did. But, maybe I'm missing something. I do get excited when I read things like that. And also that woman whose video I watched, I thought her daughter's story was pretty amazing. Did you watch it? I am much more scared of using pharmaceuticals than something more natural.
Hi Sandi, Thank you for your reply. I have met many parents in the last few months whose kids developed ITP soon after their vaccines. Two of the moms are going through a vaccine injury court right now. They've both won their cases, but they haven't been compensated, yet. I guess that takes a long time. We are looking into filing a claim. Just not sure I want to go through all that. They both said it was an ordeal, even though they had clear-cut cases. I've gotten hooked on watching those VAXXED TV youtube videos! I thought it was kind of cool that there was an ITP one, as most of them seem to be about autism or seizures. I about fell off my chair when she started talking about ITP! Why is everyone so skeptical of homeopathy? I've seen it for years at our organic grocery store, but I've never used it. It doesn't seem like they would sell it if it was dangerous. We are eagerly awaiting spontaneous remission here--so sick of this , it's getting very old and my daughter is so done with it!
I was very excited to read about your journey to remission. It's a small world, as I saw where you listed your homeopathic practitioner. That name looked familiar to me, and when I went back and checked, SHE is the lady who is giving the interview I watched, and she had made many replies in the comments section, which is where I saw her name before. I have already contacted her, and my daughter and I will be meeting with her in a few weeks. I'm very hopeful, especially after hearing about your experience.
I wish your daughter the best. Everyone's journey is a little different and hopefully things get on track. One important message to take in is that you have to give things a lot of time and patience and hopefully you will have success. GL.
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