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TOPIC: My Daughter 4.4 Years diagnosed with ITP

My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44009

  • abhitutun
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My daughter is diagnosed with ITP last week. The count was 6 last week and this week went down to 2. I am literately scared and now worried to know what to do.
She has cold and cough for past 1.5 weeks and after that we started seeing the bruises in her body and then we took her to doctor who found this.

I have a question, when we say count 6 and 2 ; does that mean 6000 & 2000? I found generally the normal range is 150,000-400,000.
Now, I am kind of thinking should we go for the HVIG therapy or should we wait for a while monitoring her blood drawns for next time or so.

Pls help with your comments.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44013

  • juliannesmom
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The numbers are always stated in the thousands. Given the margin of error on the tests, 2 and 6 are not much different in my view. My daughter was just before 13 when diagnosed, and I can relate to the worry. (She is in remission now, with normal counts for several years.) The single digit counts always worried me more.

Is your daughter seeing a pediatric hematologist? That is the best doctor to help guide you through this. Other doctors don't see enough ITP to be familiar with treatment options and guidelines. If you don't yet have one, a teaching hospital staff is a good place to find one. Also, if you post a question on here asking for pediatric hematologists in your general area, you may get a good recommendation from one of these members.

Your daughter is very young, and the younger patients are more likely to have acute ITP that remits soon. Also, the very young patients who develop ITP on the heels of a viral illness are more likely to be acute cases, rather than chronic. Still, I would ask for a consult with a pediatric hematologist. Our pediatrician initially planned to have that consult just between her and the hematologist, by phone. That didn't suit me. We found a wonderful hematology group that was really a blessing to us.

Whether and how to treat will depend on how your daughter is physically coping with ITP, such as whether she is bleeding (nosebleeds and other bleeds), whether she has "wet purpura," which are blood blisters on mucosa, such as in the mouth, and the degree of bruising. It can also depend on your level of tolerance for the worry. Many pediatric practitioners prefer to "wait and watch," but only within certain parameters. The lower the count, the more frequent the blood draws will be. (By the way, my daughter preferred finger sticks; some kids prefer venipuncture, and there are "butterfly" needles that make smaller holes. Also, there is a numbing cream that can be used before the stick to lessen the pain.)

There are risks, side effects, and benefits of every treatment option. For our daughter, IVIG was a good "rescue" treatment, bringing her counts to safe levels when they were very low or when she had a nonstop nosebleed. It also had a down side, in that the first time she got it, she had a headache so bad she had to return to the hospital to be evaluated to rule out an intracranial hemorrhage. That is called "aseptic meningitis," meaning inflammation of the meninges that is not caused by infection. It was scary, but it can be managed, and the next two times she had IVIG she did not have this complication, because we talked with the doctors to form a plan that consisted of not only pretreating with tylenol and benadryl, but also continuing that treatment throughout the infusion, and continuing the benadryl for a day at home after the infusion, keeping her better hydrated throughout the infusion and after, and a shot of decadron just before leaving the hospital on one occasion and a couple days of decadron pills on the other occasion. Our daughter also had steroids to boost her count in anticipation of having several teeth extracted to make room for braces. (The extractions were done all in one day in the OR with her hematologist on standby.) Our doctors preferred not to use steroids without ruling out certain other conditions, so she initially was not treated with steroids. When ITP lasted more than six months, they did a bone marrow aspiration, and ruled out the other scary stuff.

After more than two years of worry, my daughter remitted. We really don't know why. Not long before her remission, she had an IVIG treatment for a nonstop nosebleed that followed a decadron pulse treatment, but we have no reason to think either treatment caused it. Whatever the reason, I was grateful. It can happen. I hope ITP is soon just a bad memory for you and your daughter. Keep up hope, and come here if you want to ask folks about this weird disorder. The people here helped me greatly during that scary time. Don't get worried when you see that many of them have been here for years. The ones who remit quickly (and there are plenty of them) don't tend to stick around on the forum. If your daughter remits, come back from time to time to give hope to the others, and to answer any questions you can for them in their own scary time.

Norma
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44015

  • juliannesmom
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I should have added: A little extra vitamin C can help the bruising and the small bleeds. It doesn't help the count. If you add too much, it can cause loose stools, though, so don't add too much, and lower the dose if the stool is loose. The chewable pills are too tart for most kids to tolerate, but you can get capsules and break them into gelatin or applesauce. Pineapple helps with the bruising, too. We never found any foods that seemed to increase or lower platelet counts.
Norma
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44020

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Hi Norma,
Thank you for your inputs. In general my daughter is doing ok and there were few bruises last week and haven't seen more that has come this week. She is doing other ok as far as all her activities are concerned.
I am in touch with the Haematologist in the Childrens Hospital and my peditrician and they did explained the same you mentioned but I am kind of worried to think if I should wait for the IVIG for some more days to see if this changes naturally. I am just thinking to wait and see if her cold symtoms goes away to see how her immune system reacts.
I have gone through the IVIG documents and posts and that also is not a cure and that worries more since people have seen count drop even in a weeks time after doing this.

Thanks!
Avijit

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44025

  • babeflover
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You, like most people, probably won't listen but, here i go again. your daughter doesn't NOT need a hematologist or a rheumatologist, what she needs is a integrative alternative doctor, do a search on it. These type of MD, they are MD, test for things that the other doctors know nothing about or have not experience with. they look for problems like : G.I issues(gut permeability which one of the causes for autoimmunity), toxicity, specially from vaccines, mineral and vitamin deficiencies, adrenal issues, MTHFR search on it ) and other issues. I can't believe i did this again LOL. good luck.
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44026

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I would consider an integrative alternative doctor as a supplement, but would definitely want my child's care to be directed primarily by a Hematologist until counts are at a safer level.
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44027

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Thank you for the suggestions on alternative treatment. I am starting to find some contacts & doctors and think on the alternative treatments like homeopathy. But at this moment the count is so low (2000) and thats concerning me the most. If this improves to some extent, then parallelly I can/will think of other options as those are also time consuming and goes for continuous processes.

Now, I am just observing closely and trying to monitor her. She is still going through her gold and cough which I really want to get rid of first and see if there is any improvements.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44047

  • babeflover
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I wasn't talking about homeopathy, i was taking about MDs that use natural treatments. My daughter began at 12 year old with 11k,high positive ana, posituve Ds_dna(possible lupus), very low C4, and mildly low C3. we did prednisone at the beginning. she is now 18 year old, uses no medications, has no symptoms, and her latest platelet count was 182k.

PS: G.I track, immune modulation, detox(possibly Chelation), food allergies
, vitamin and mineral deficiencies and other issues are the key to all this mess. Prednisone and rituximab and other toxins are not the answer.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44051

  • Sandi
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I knew what you meant. :)

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44054

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I am trying to search for MDs with natural treatments, not finding much though. I have heard something about vitamin & mineral deficiencies and even food allergies, but unless I find a reliable place/practitioner for consultation, it makes it hard. Is there any link / website you can help me with?

Thank you for the comments.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44056

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Most children have acute ITP which goes on its own whatever you do. Treating can feel like you're actively doing something but when the ITP goes it's hard to know if it was something you did or it was going to go anyway. My guess is the latter.
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44058

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Qoute"... it's hard to know if it was something you did or it was going to go anyway. My guess is the latter..."

If you are addressing me, my daughter's ITP just didn't go away, it is being treated it with supplements. It took years to get her where she is now. I see it as a way of life more than a treatment. Plus. did you see my post, my daughter has something more going on than just ITP.abhitutun where are you located.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44069

  • abhitutun
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I am based out of Minnesota.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44070

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Oh wow i'm in new york, i don't know of any holistic doctor in Minnesota. I'm sure you'll find one, keep on searching.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44072

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When my daughter was treated, it was with conventional, evidence-based, medicine, under the care of a hematologist. Mostly, it was watch and wait, under the supervision of a hematologist. Her count nowadays is usually around 202,000. I wouldn't mess around with a bunch of untested "natural" or "holistic" or "homeopathic" remedies. I do advocate the use of pineapple for bruising and vitamin C for vessel integrity, in conjunction with true "mmeficine," but I would not have trusted my daughter's well-being to anyone but a reputable hematologist who was keeping current on studies and options.
Norma
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44075

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juliannesmom wrote: When my daughter was treated, it was with conventional, evidence-based, medicine, under the care of a hematologist. Mostly, it was watch and wait, under the supervision of a hematologist. Her count nowadays is usually around 202,000. I wouldn't mess around with a bunch of untested "natural" or "holistic" or "homeopathic" remedies. I do advocate the use of pineapple for bruising and vitamin C for vessel integrity, in conjunction with true "mmeficine," but I would not have trusted my daughter's well-being to anyone but a reputable hematologist who was keeping current on studies and options.
Norma


WOW!. this was my thinking before my daughter was diagnose but, since i didn't want her to continue taking those toxic,and they are toxic,medications, i got educated, i researched, and i asked questions. Medications kill thousands every year, their side effect can be devastating, specially for a twelve year old kid, let along a four year old. my daughter is tested for lupus, by a rheumatologist every six month, for about six years now, and due to the supplements, testing and recommendations of her holistic doctor( who by the way is a MD internist), she has not had to take any medications ever again.

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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44076

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My daughter was rarely treated, but she was monitored by hematologists. When she was treated, it was for a dangerously low count or a bleed. (And, yes, there were side effects to be managed, but they were not dangerous side effects. We, too, educated ourselves for our daughter's best interests.) Steroids were used to boost her count for necessary oral surgery. (And it was comforting to know during that procedure that a hematologist was on standby nearby.) Even when no treatment is needed, a child with ITP should be monitored by a doctor who knows what he/she is dealing with, and who has evidence-based measures at the ready should they be needed. Only you can choose what is right for your child, but that choice should be properly informed with the guidance of qualified medical professionals.
Norma
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My Daughter 4.4 Years diagnosed with ITP 6 years 1 month ago #44129

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This is the third week we did and we did tested her count and its still 6000 :( . I am stil waiting patiently and kind of motinering if the count increases. I am really getting impatient and frustrated at times; I haven't tried any of the treatments.

Norma, How long you were waiting for your daughters count to go up. Does it generally take few months to increase?

And do anyone know any kind of multi vitamins that can help. I have heard vitamin K, C , B9 etc helps the bruises and the count sometimes, wondering if we can give some multivitamins when we are waiting patiently.

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My Daughter 4.4 Years diagnosed with ITP 6 years 4 weeks ago #44135

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Her first count was 23,000. From there, it went down and up for months. The lowest count we knew was 3,000. It seemed to go down any time she was fighting off a virus. At times it went up to safer levels, 35,000 and higher, even up to 80,000. It bounced around, high and low, for nearly two years before it started going up, to safer and safer levels, and, eventually, to normal. I know it's scary. All we could do was wait and watch, treat when we had to, and keep her generally as healthy as possible, to avoid the drops when possible. I hope your child goes into remission, and soon.
Norma
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My Daughter 4.4 Years diagnosed with ITP 6 years 4 weeks ago #44136

  • abhitutun
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Thank you Norma, we (me & my wife) really need some moral boost; And that's what I am trying to get from here along with all useful educations around this.

Hope she gets a better day ahead. That's what I am praying now.

Does anyone tried multi-vitamins in such cases? I am thinking to try something along with her healthy diet which we are trying to provide.

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My Daughter 4.4 Years diagnosed with ITP 6 years 4 weeks ago #44137

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During much of the time she was dealing with ITP, we gave our daughter a chewable multi-vitamin and a vitamin C capsule. I like the capsules and chewables because they are more readily absorbed than the pill that sometimes passes through without breaking down. I don't think it ever helped her count, but we just wanted her as healthy as possible, to withstand anything bad that may happen, and to ward off viruses that seemed to drop the count.
Norma
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My Daughter 4.4 Years diagnosed with ITP 6 years 4 weeks ago #44140

  • Sandi
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Vitamins will probably not help counts at all. Of course people have tried it. Usually if the vitamin level is not deficient, you shouldn't need to supplement with pills. Eating a healthy diet with the right vitamins can help overall health which in turn could eventually make a difference. Some people have found that eliminating sugar and gluten helped in the long run.
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