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TOPIC: 12 Year old Daughter with ITP

12 Year old Daughter with ITP 8 years 8 months ago #10819

  • JMORGAN
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My daughter was diagnosed with ITP on November 5, 2010. It has been a roller coaster. She woke up one morning with a few small spots that looked like broken blood vessels. I figured she scraped her leg against something. Then started with a bloody nose the same day at school...also thinking well dry weather maybe it's that. The next day woke up with broken blood vessels all over her body (petichia rash)and then I called the dr. When we saw the dr. I knew right away something was wrong...they did blood work and she was at 7. So for a few weeks she was at 11 then 10 then down to 4 then she had the WinRho treatment. The WinRho was a very bad experience for her. She had every side effect listed and that was more scary than the disease itself. Her reaction to it was severe and the dr.'s will not have her get that treatment again. She went up to 31 at one point then dropped back down to 20 and as of last week was 32. My concern now is the winter season. How can you possibly prevent them from getting any colds. She is now starting with a cough and runny nose and the dr.'s said she was doing well kind of bouncing back a little on her own finally...now I'm afraid of what this will do to her.

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10823

  • jaycharness
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I am so sorry to hear about your experiences over the last month and half. Just starting out with this condition is very confusing and very frustrating. Since you are still in the acute stage (most Doctors do not consider it chronic until after a year although some would say 6-months), the hope is that this will be a short term issue to deal with. While it is a part of your life, you have come to the right place. A lot of the people in this forum have been dealing with it for a long time (my daughter is 9-1/2 and was diagnosed at 3-1/2) and can offer support to get you through the harder times. All kids are different so all will have different affects of the treatments and different results. The value of this group is as general support and to get some ideas of how some other kids have coped with what you are going through. Unfortunately it is hard to keep all colds or illnesses from our kids, and if they do have ITP than chances are likely that their platelets will fall if they get sick. The best thing to do is what you are doing which is consulting with your hematologist every step of the way to help you maneuver through and manage her care as best as possible. Please let us know how we can help.

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10824

  • tacmom
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Hi, Im sorry to hear about your daughter. Youve come to a place where many of us parents come to read and reassure ourselves that we are doing everything possible for our children. My daughter is also 12 years old and there are a few other parents who have daughters the same age with ITP on here. Some have come and gone because they had an acute type of ITP. Others, like me, have stayed on because my daughter has chronic ITP. She has been diagnosed for almost 4 years now but we think she's had it as long as 6-7 years based on symptoms. The good thing with this disorder is that our kids usually feel just fine. It is usually the treatments that make them feel ill. My daughter has had good counts for almost 6 months now but does a weekly shot to keep her platelet count up. We hope that ITP will soon resolve on its own to where she will no longer need treatment. Our biggest concern for daughters this age is...how will they respond when they get their first period? I have not been able to find that out yet because Caitlin hasnt started but her count as of this morning was 86 so i think she'd be fine if she started tomorrow. Treatments Caitlin has tried are: Prednisone, IVIG, Rituximab, and Nplate (current) for 2 1/2 years. She is very active in sports (competitive cheer & basketball) so thats why we aim to keep her count up to keep her life as normal as possible. Feel free to ask any questions on here. We re here to help but we are not drs so only take our advice with a grain of salt and verify everything with your daughter's hematologist. Hang in there!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10826

  • alisonp
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Hi JMORGAN

I am the parent of a 12 year old boy who has had ITP for the last 18 months. I wanted to say not to be too worried about coughs and colds and stuff like that. I've found that the odd virus sometimes has the strange effect of bumping my son's counts up a bit! It's variable, but his best counts since being diagnosed all came after a bout of flu last autumn, and colds seem to have a similar but less dramatic effect.

I also wanted to say that it is possible to live a very normal life with ITP. My son's counts have been 30-40 for the last 6 months, and he has lived a completely normal life in that time - the only thing we've had to do differently is tell sports teachers etc about his condition just in case of accidents. He complains hat he isn't allowed to play rugby, but otherwise, ITP really is not an issue for him. He doesn't have any treatment and didn't even when his count was under 5K (kids rarely get treatment for ITP in the UK). I really hope that your daughter's ITP turns out to be acute, but if not, it really doesn't have to be the end of life as you currently know it!

Good luck, Ali

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10827

  • april
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Hi,

Sorry that you had to find us, too. My daughter, Hannah, was also 12 at diagnosis with a count of 5k. She also had a very bad reaction to the WinRho (anaphalaxis after we had left the hospital-she nearly died-then violent nausea and vomiting of blood, chills, headaches, etc.). We chose not to use Prednisone or remove her spleen, those being the only other options offered to us at the time.
Her reaction to IVIG was only slightly better, though they continued to give her that weekly. Neither brought her platelets up more than a few points. I was a homeopathic student at the time, so that is how we decided to treat her. After finding the best remedy for her, her platelets went from 11k to 411k in 4 days, besides having a profound effect on her overall (meaning, a lot more than just her platelets got better). The best thing about homeopathy is there are no side effects, when used according to homeopathic principles.

There are many more treatment options out there, now. (My daughter is now 19, and still ITP-free). But, there are quite a few naturopathic and homeopathic things you can do to keep your daughter healthy, no matter what treatment you use.

A few things that I have found helpful:

Optimize her Vitamin D levels from the sun or with a good quality supplement
-there is a ton of research out there showing it's importance for the immune system, and it is very effective at preventing and treating colds and flus. Also important for autoimmune diseases. check out Dr. Joseph Mercola's website on Vitamin D. He has compiled a vast amount of research and information on Vitamin D, and how to optimize your levels.

Vitamin C is well known to support the immune system. I prefer to get it from juicing or by eating foods high in it. It also supports the cell integrity of the blood vessels, which can cut down on bruising and bleeding.

Grapefruit Seed Extract (GSE) has natural antibiotic properties, has antibacterial, antifungal, and antiprotozoan benefits. Here's a link that tells about some of the research done on it: www.globalhealingcenter.com/grapefruit-seed-extract.html
In water it is very bitter, but add a few drops to a strong or sweet juice, like grape,
cranberry or carrot juice, and it gives it a tangy taste that my kids love.

Drink Tulsi Tea Daily. Tulsi, aka Holy Basil, or the Queen of Herbs is well known in India for its remarkable healing properties, improving the body’s overall defense mechanism. It is one of the most effective adaptogens (an agent that helps your body adapt more efficiently to stress), ever known. Tulsi’s unique chemistry contains compounds called “phytochemicals”. These are naturally produced by the plant, to protect themselves against bacteria, viruses and fungi—that interact and have strong antioxidant, anti-viral, anit-bacterial, and immune-enhancing properties that promote general health and maintain your body’s natural defense against germs, stress and disease. My kids LOVE this tea, and ask for it daily. We’ve all noticed that it has a very calming effect on us, so it makes a nice bedtime ritual.

Delicious Tulsi Tea Recipe.: Make a tea by mixing these herbs together, in whatever quantity you like. I usually use twice as much Tulsi as the other two, but mix it to suit your taste. Pour boiling water over herbs and let steep for 5-10 min.
Holy Basil leaves (aka Tulsi, is an adaptogen, an anti-oxidant, anti-viral, anti-bacterial, and immune-enhancing herb)
Elderberries (Compounds in elderberry bind with viruses before they can penetrate the walls of cells. This inhibits their ability to spread.)
Rosehips (Rosehips are naturally high in Vitamin C, but they are also high in iron. The key to processing iron in the body is to couple it with vitamin C. For people that battle anemia, rose hips are a treasure trove of nutrition, besides being fragrant and delicious.)
Add honey to taste, and fresh lemon, for a delicious, fragrant tea. Enjoy!


Avoid Sugar and Processed Foods
, as sugar decreases the function of your immune system, almost immediately. Even 1 tsp of sugar will depress the activity of the white blood cells by 50% for 2 days.

Get Enough Sleep. Don’t let her get run down. When the body is overly fatigued, it will be harder for it to fight the flu. During rest is the time when your body does its healing work. If you do get ill, extra sleep is one of the best things you can do.
Ever notice how babies and young children instinctively know that?

Make Garlic a Regular Part of the Diet.
Garlic works like a broad-spectrum antibiotic against bacteria, virus and protozoa in the body. And, unlike with antibiotics, no resistance can be built up, so it's an absolutely safe product to use. Garlic can enhance almost any meal. Chop it finely and use in soups, salad dressings, pastas, pizzas, garlic bread, garlic mashed potatoes, or steamed veggies brushed with garlic butter. Sprinkle on some finely chopped parsley to add color pizzazz, as well as adding Vitamins A & C and helping to neutralize garlic breath. Yum!

Gargle Twice a Day with Warm Salt Water.
H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. Don’t underestimate this simple, inexpensive and powerful preventative method!

Clean Your Nostrils at Least Once Every Day with Warm Salt Water, swabbing both nostrils with Q-tips dipped in warm salt water, is very effective in bringing down viral population.

Drink as Much of Warm Liquids as You Can. Drinking warm liquids, such as tea, has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat, into the stomach, where they cannot survive.

Take a High-Quality Probiotic or Eat plenty of naturally Fermented Foods. 80% of your immune system is located in your digestive system, so enhancing your gut health with probiotics is a very effective method to ward off cold and flu viruses. Naturally fermented foods include: kefir, yogurt, miso, soy sauce, tempeh, pickles, olives, sauerkraut, crème fraîche.

All mushrooms strengthen the immune system.
Dried shitake are available and inexpensive at Chinese grocery stores. Reishii, maitake, and other medicinal mushrooms are delicious, as are the more common button mushrooms, portobellos, and dried porcinni. You can add a handful of Astagalus medicinal mushrooms to soups or beans, as they cook, to get their benefits, then you can easily remove them before serving. I haven’t noticed any significant change in flavor.

Take a Sauna.
Researchers aren't clear about the exact role saunas play in prevention, but one German study found that people who steamed twice a week got half as many colds as those who didn't. One theory: When you take a sauna you inhale air hotter than 80 degrees, a temperature too hot for cold and flu viruses to survive.

The Fine Art of Hand washing will decrease your likelihood of spreading a virus to your nose, mouth or other people. Do not use antibacterial soaps, as they are completely unnecessary, and only add to the problem of over use of antibiotics in our society. Friction is key, along with hot, soapy water, and scrubbing between fingers and underneath nails.

Cell salts (aka Tissue Salts)
, can be useful when taken at the beginning of an illness, particularly, Ferrum Phos and Calc phos. For more information on cell salt indications: www.forresthealth.com/cell-salt-remedy-guide/

Homeopathic remedies can very quickly and effectively help to relieve cold or flu symptoms. There are many good self-care books that can help you choose the best one, as well as a number of online sites that can guide you.



Trying to incorporate all of these at once is not necessary, but pick and choose those that seem easy to implement and/or make common sense to you. They can be used by the whole family, too (especially us moms who tend to take care of others, but sometimes forget about caring for ourselves!)

Best wishes to you and your daughter. I trust her stay here will be short.
April

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10828

  • april
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One thing I think important to consider: it may be best to avoid if possible, many commonly given OTC drugs. These are drugs that have evidence of causing ITP (usually referred to as thrombocytopenia)--certainly not in every one who takes them. But, those who are already struggling with low platelets may be more sensitive to these effects, so might choose to avoid them. In my experience, it's never a good idea to suppress the bodies natural tendency to heal itself (as in suppressing a fever, eruption or discharge). This may account for the differences of some seeing a rise in platelet counts, after an illness, while others see a drop.

April




Here is just a partial list of drugs that are known to cause thrombocytopenia in some:

Drugs Known to Cause Thrombocytopenia


Aspirin and non-steroidal, anti-inflammatory medications, such as
aspirin, Ibuprofen, Motrin, Advil, naproxen, naprosyn, and Aleve
are medications that may interfere with platelet function and may cause bleeding.
Reference: www.childrenshospital.org/az/Site1138/mainpageS1138P0.html

Benadryl (Diphenhydramine) side effects for the
Hematologic System: Hemolytic anemia, thrombocytopenia, agranulocytosis.
Reference: www.drugs.com/sfx/diphenhydramine-side-effects.html
(Scroll down to Diphenhydramine Side Effects for the Professional)

Tylenol (acetaminophen)--Acute thrombocytopenia caused by sensitivity to the glucuronide conjugate of acetaminophen—a good article to read.
Reference: bloodjournal.hematologylibrary.org/cgi/content/full/109/8/3608

Coricidin D (acetaminophen/chlorpheniramine/phenylpropanolamine is a combination pain reliever/fever reducer/antihistamine and decongestant,
used to treat nasal congestion; itchy, watery eyes; itchy throat; sneezing; headache; fever; and other symptoms associated with allergies, hay fever, and the common cold.)
Hematologic side effects of chlorpheniramine have included bone marrow suppression, thrombocytopenia, and aplastic anemia.
Reference: www.drugs.com/sfx/coricidin-side-effects.html

Coricidin D HBP (same as above but with an added High Blood Pressure medicine)
Parents—be aware! It has become one of the most abused OTC drugs for teens in the 13-19 age range, as they can easily buy them at the drugstore, or find them in their parent’s medicine cabinet. It is an inexpensive and legal drug, easily available, so one of the fastest growing drug problems. Kids are taking 10-15 of them at a time, some have died from them, but they can cause many side effects, including liver damage and thrombocytopenia. Abusers report a heightened sense of perceptual awareness, altered time perception and visual hallucinations, much like LSD.
Street names are “Skittles” (they resemble the red Skittles candy),” Red Dragons”, “Red Devils”, “Red D’s”, “C’s”, “Cory (Cori)”, “CCC” and “TripleC”.

Robitussin Night Time Cough and Cold (a cough suppressant, expectorant and decongestant, used to teat stuffy nose, sinus congestion, cough, and chest congestion caused by the common cold or flu.)

Hematologic side effects have included hemolytic anemia, agranulocytosis, and thrombocytopenia.
Reference: www.drugs.com/sfx/robitussin-night-time-cough-cold-side-effects.html


Ciprofloxicin or Cipro (commonly used to treat UTIs)
Ciprofloxacin: Fatal thrombocytopenia and haemolytic anaemia: case report
A 30-year-old man died after developing thrombocytopenia and haemolytic anaemia while receiving ciprofloxacin for a suspected urinary tract infection (UTI).
www.highbeam.com/doc/1P3-1596663891.html
We report the case of a 72-year-old woman who was receiving intravenous ciprofloxacin for a urinary tract infection and developed thrombocytopenia during her hospital stay. Her platelet count dropped from 147 x 10(3)/mm3 on admission to as low as 21 x 10(3)/mm3 . On discontinuation of the drug, her platelet counts began to return to normal
www.ncbi.nlm.nih.gov/pubmed/16006282


Flagyl or metronidazole (An antibiotic effective against anaerobic bacteria and certain parasites, such as Giardia lamblia and ameba and Trichomonas, a vaginal parasite, Used to treat bacterial infections of the vagina, stomach, skin, joints, and respiratory tract.

Hematologic side effects have included reversible neutropenia (leukopenia) and reversible thrombocytopenia (rare).
Reference: www.drugs.com/sfx/flagyl-side-effects.html



Sulfonamide antibiotics

carbamazepine [(Tegretol, Tegretol XR , Equetro, Carbatrol—used to treat epilepsy, as an anti-seizure drug, for nerve pain and bipolar],

digoxin (Lanoxin-- used to treat congestive heart failure and atrial fibrillation)

quinine (Quinerva, Quinite, QM-260—used to treat or prevent malaria)

quinidine (Quinaglute, Quinidex—used to treat irregular heartbeat patterns)

acetaminophen (Tylenol-- a pain reliever and a fever reducer)

Rifampin. (Used to treat tuberculosis and certain kinds of bacterial infections)

Reference: www.medicinenet.com/thrombocytopenia_low_platelet_count/page2.htm




Sulfonamide antibiotics
"Sulfa allergy" is a term used to describe adverse drug reactions to sulfonamides, a group of drugs that includes those with and without antibiotic characteristics. Antibiotic sulfonamides were the first antibiotics used to treat infections, although today are used much less frequently given their common side effects. Common sulfa antibiotics include Septra®, Bactrim® and Pediazole®.

The antibiotic sulfonamides are different structurally from the non-antibiotic sulfonamides, and appear to be much more likely to result in allergic reactions

Blood reactions. Sulfa allergy can also affect various blood cells, resulting in decreased white blood cells, red blood cells, and platelets, through an immunologic-mediated manner.

Reference: allergies.about.com/od/medicationallergies/a/sulfa.htm



Valtrex (used to treat conditions related to the herpes virus, including shingles, cold sores, chickenpox, and genital herpes.)

A serious condition called thrombotic thrombocytopenic purpura/hemolytic uremic syndrome (TTP/HUS) has occurred in certain people taking Valtrex. TTP/HUS is a condition involving very low red blood cell and platelet counts. In TTP/HUS, the body forms many small blood clots. This dangerous condition has occurred in people with HIV and people who have had a stem cell transplant or kidney transplant. These people were taking unusually high doses of Valtrex (8 grams per day). Talk to your healthcare provider right away if you have signs of TTP/HUS, including unusual bruising and bleeding or unexplained fever.

Reference: herpes.emedtv.com/valtrex/valtrex-precautions-and-warnings.html


TTP/HUS, including some fatalities, has been reported during clinical trials in patients with advanced HIV disease and in allogeneic bone marrow transplant and renal transplant recipients, who were receiving 8 g valacyclovir per day.

Hematologic side effects have included thrombotic thrombocytopenic purpura/hemolytic uremic syndrome (TTP/HUS), and decreased neutrophil counts (18%), platelet counts (up to 3%), hemoglobin (up to 0.8%), and white blood cells (up to 1.3%). Thrombocytopenia, aplastic anemia, leukocytoclastic vasculitis, and TTP/HUS have been reported during postmarketing experience.

Reference: www.drugs.com/sfx/valtrex-side-effects.html






Prozac or fluoxetine (Used for depression)
Hematologic side effects include case reports which have suggested that fluoxetine may interfere with platelet function. Petechiae, increased bleeding times, epistaxis, and gastrointestinal hemorrhage have been reported rarely in association with fluoxetine therapy.
Reference: www.drugs.com/sfx/prozac-side-effects.html

Hematologic Side Effects of Psychotropics
Skop and Brown described 15 cases of SSRI-related bleeding in association with fluoxetine (ProzacTM), fluvoxamine (LuvoxTM), and paroxetine (PaxilTM) administration. Symptoms included ecchymosis (bruising), menorrhagia (abnormally heavy and prolonged menses), petechiae, bleeding internal hemorrhoids, epistaxis (nosebleed), ulceration with hemorrhage, and melena (black, tarry stools). Prozac was the most common offending agent. In another study, it was demonstrated that Prozac prevents serotonin-induced amplification of platelet aggregation. Prozac administered for 12 weeks at 100–150 mg/d reduced platelet serotonin to 11% of pretreatment concentrations. Patients with thrombocytopenia, suspected platelet dysfunction, or a history of unexplained bruising or bleeding should be monitored carefully when placed on Prozac or the other SSRIs.

Reference: psy.psychiatryonline.org/cgi/content/full/40/5/414


Wellbutrin (used to treat major depressive disorder and seasonal affective disorder.)
It may cause low platelet count (may cause bleeding problems) (rare).

This drug may also cause the following symptoms that are related to low platelet count:
* Abnormal menstrual bleeding (in females) Abnormal menstrual bleeding
* Vaginal bleeding Vaginal bleeding
* Abdominal bleeding Abdominal bleeding (rare)
* Bleeding gums Bleeding gums (rare)
* Bruising Bruising (rare)
* Low counts of all blood cells including red and white blood cells, and platelets Low counts of all blood cells including red and white blood cells, and platelets (rare)
* Nosebleeds Nosebleeds (rare)

Hematologic side effects of Wellbutrin have rarely included ecchymosis, anemia, leukocytosis, leukopenia, lymphadenopathy, pancytopenia, thrombocytopenia, and eosinophilia.

Reference:http://doublecheckmd.com/EffectsDetail.do?dname=Wellbutrin&sid=4319&eid=2241


Effexor or venlafaxine
(used to treat major depressive disorder, anxiety, and panic disorder.)
Hemic and lymphatic system—Frequent: ecchymosis; Infrequent: anemia, leukocytosis, leukopenia, lymphadenopathy, thrombocythemia, thrombocytopenia; Rare: basophilia, bleeding time increased, cyanosis, eosinophilia, lymphocytosis, multiple myeloma, purpura.

Reference: www.drugs.com/sfx/venlafaxine-side-effects.html



Drug-induced thrombocytopenia occurs typically by causing an immune reaction in which drug bound to the platelet creates a new and “foreign” antigen. This disorder is indistinguishable from ITP except for the history of drug ingestion. When the drug is stopped, the platelet count typically begins to increase within 1 to 2 days and recovers to normal within 7 days. (A table of drugs reported to cause thrombocytopenia, together with analysis of the evidence for a causal relation of the drug to thrombocytopenia, is available at Platelets on the Web.)

Up to 5% of patients receiving unfractionated Heparin develop thrombocytopenia, which may occur even with very-low-dose Heparin (eg, used in flushes to keep IV or arterial lines open). The mechanism is usually immunologic. Bleeding can occur, but more commonly, platelets clump excessively, causing vessel obstruction, leading to paradoxical arterial and venous thromboses, which may be life threatening (eg, thromboembolic occlusion of limb arteries, strokes, acute MI). Heparin should be stopped in any patient who becomes thrombocytopenic or whose platelet count decreases by more than 50%. Because 5 days of heparin is sufficient to treat venous thrombosis and because most patients begin oral anticoagulants simultaneously with heparin, it is usually safe. Low mol wt heparin
(LMWH) may be less immunogenic than unfractionated heparin

Reference: www.merck.com/mmpe/sec11/ch133/ch133f.html

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10850

  • athos45
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Stay tough, its not the end of the world. You can live a normal life and so can your daughter.

Hope for the best for you guys
Father of Tonio, 8 yrs old w Chronic ITP

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Re:12 Year old Daughter with ITP 8 years 8 months ago #10855

  • srunge
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Hi, I know what you are going through also. My daughter was diagnosed last November 9th 2009 at the age of 12 with a count of 16k. It was devastating at first to try to figure out exactly what was going on. After seeing various doctors and determining that it was ITP they told us to wait and watch. It was so hard because my daughter is very active and plays select soccer all year round. Her lowest was 3k at which time we decided to try IVIG she had a terrible reaction, aseptic meningitis and was in the hospital for 3 days recovering from it. They then put her on steroids that worked immediately, she went up to 140k but as soon as they were tapered she would drop. They then gave her Dex pulses to get her through a soccer tournament in New Mexico. (they are the Idaho state champs and went to regionals in New Mexico). After that we tried Methotrexate and it did nothing then we went to Vincristine which worked for about 1 month but she lost a lot of hair and its just now growing back. (she wasn't bald it just got really thin and she has a lot of hair). That brings us to September, thats when we decided to try Rituxan, she had 4 infusions and as of now her last count was 211k. It's been about two and a half months since last infusion. Fingers crossed it lasts for a while. She will be getting checked again tomorrow, we are checking just once a month now. I'm praying that her body kicks into gear and gets back on track but ITP is so unpredictable. She also tested positive for H pylori and has a low positive ANA so non of the doctors have any answers for us.
Wishing your daughter a quick recovery from ITP.
Shauna

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Re:12 Year old Daughter with ITP 1 month 1 week ago #67238

  • nilabzas
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Hi
'This is for my wife who was recently diagnosed with ITP (count 30k currently)
Can you please tell us what Homeopathic treatment should she get as we also do not want to do Steroids

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