Hi Michelle,
I don't think that Danica's response is that unusual. My daughter, Hannah, was the same. I lost count of how many IVIG infusions that she had, but she got them weekly. When we returned the following week, her platelets were always back down, usually <10k. . Looking back, if I knew then, what I know now, I would have never put her through it (she always had terrible side effects-headache, nausea, intense vomiting and achey flu-like symptoms). At the time, I had did not own a computer, and had never used one, either. There was very little information given to us by the hospital. We were led to believe that she'd probably be dead before the week was out, if we didn't "do something". . I did know enough to refuse the Prednisone or the splenectomy, and felt as if the IVIG would not do as much longterm harm. (My daughter had an anaphylactic shock reaction to her very first treatment with WinRho.)
But, now I would not continue giving the IVIG if I had to do it over again, for multiple reasons:
One, she did not have a significant, lasting response. Platelets that crept into the teens or low 20's for a day or two, and then crashed back down to under 10 within the week, was simply not enough for all that she went through.
Two, it made her feel perfectly miserable for about 5 days afterwards--so not worth it!
Three, it nearly killed her when a new nurse did not pre-treat her adequately, and she went into anaphalactic shock again. Her blood pressure completely bottomed out, and she was unconscious for over an hour. We weren't really sure if she'd suffered brain damage or not. She described it as the most painful thing she has ever felt, when she woke.
Four, because of her reaction , they gave it to her very slowly, so each week we had to count on spending about 16 hours in the oncology unit, between the 14 hour infusion and then the couple of hours of waiting on labs and pre and post treatment and monitoring. She also missed at least one or two days of school per week because of this, and because of her bad reaction to it.
Five, it was very expensive!! $13,000 each week, and that was before the hospital and doctor's costs. Granted, we did not have to pay anything towards it, as in California, they have a program that covers children for specific kins of illnesses or injuries,and ITP is one of them, Frankly, I feel that someone is making some pretty significant money by recommending it repeatedly for kids, when it obviously isn't do much of anything.I am sure it would be a completely different story if this treatment would have to be paid for out of pocket.. As it is, the hospital, staff and the pharmaceutical companies have a pretty good bread and butter thing going on, don't they?
If a treatment is not making any significant difference, and is not even expected or designed to put you into remission, then why continue with it? You also have to weigh the risks of receiving a blood product from multiple donors. The safety of our blood supply is pretty good, yet not fail-proof.
Then, you have to make a decision of what you can do instead. Wait and watch, and only treating if symptoms are dangerous is an approach that doctors in many other countries use the most. One of my daughter's hematologists said that there was little difference in the final outcome, between patients that were treated aggressively, and those that took the wait and watch approach.
There are many more treatments available now, compared to what was offered to my daughter. But, the known and unknown side effects, especially the longterm side effects, scared booth of us. As I was a homeopathic student at the time, halfway through my studies, that was the option we pursued from the first. It took a couple of tries before hitting upon the best homeopathic remedy for her. But, when I did, it took her platelets from 11k to 411k in 4 days! Besides just her platelets getting better, we saw huge improvement in pretty much every aspect of her being. I've yet to see any other treatment that can do that.
BTW, alexpaul, have you told your doctor about your son's last experience with the Rituxan, the itching? Did he develop any hives? Be very careful! He may have a worse response next time. I would have your doctor rule out serum sickness. It can occur many weeks after being exposed to Rituxan, and the next exposure will usually be much worse. Please rule this out before getting another dose. FYI, there are some homeopathic remedies that can be used in case of a bad reaction like this. It might be a good idea to have them on hand, and learn more about their indications, in case your child experiences an allergic response. These are by no means the only ones, but these are likely the three most common ones, that could save a life, or greatly reduce any discomfort. The Apis is what saved my daughter the first time she went into anaphylactic shock.
While few studies have examined the effectiveness of specific homeopathic remedies, professional homeopaths may recommend one or more of the following treatments for allergic reactions based on their knowledge and clinical experience. Before prescribing a remedy, homeopaths take into account a person's constitutional type -- your physical, emotional, and intellectual makeup. An experienced homeopath assesses all of these factors when determining the most appropriate remedy for a particular individual.
* Apis (Honeybee) -- for hives with intense burning as well as for very rapid, edematous or watery swelling. People for whom this treatment is appropriate describe a stinging relieved by cool compresses.The headache is often quite severe and intense, an excellent remedy for meningitis. Taking a breath can be very painful, as if each breath will be his last. There may be rocking of the head and "brain cry" or shrieking!. Irritation of the margins of the lids, especially when the conjunctiva looks like red meat, and/or swelling out of the eye. They may be thirstless, and there may be greatly diminished urine output, or the urine may be bloody.,
* Rhus toxicodendron (Poison Ivy) -- for hives that burn and are very itchy and relieved by warm compresses or from scalding hot water. These may often appear on the genitalia, esp on the thigh next to the crotch. A person for whom this is appropriate tends to be restless and must change positions frequently, walking about or stretching. This restlessness is always greater at might (restless leg syndrome is common). Muscles and joints feel very stiff, tight, hard and contracted, or too short. There can be lameness, and difficulty in moving on first motion. Called the "rusty gate" remedy, as it is difficult to move at first (esp in the a.m.) , but it gets better as you move around and limber up, or take a hot shower. Rheumatoid or arthritic symptoms are prominent. Much pain in the neck and low back. Sciatica. Fever blisters. Tip of tongue may have a red triangle. Perspiration on the whole body, except the head. Desires cold milk and sweets
Symptoms are Worse from cold, damp or drafts, overexertion and in the mornings.
Symptoms are Better from warm applications, warm showers, change of position, continued movement
* Urtica urens (stinging nettles) -- for Hives and other red, raised rashes that are painful, burning, stinging and swelling, but relieved by rubbing. Hives after SHELLFISH and pinworms [skin elevated with a white central spot and a red areola] with intolerable itching and burning, relieved by RUBBING. Eruption and itching are better for lying.
Hives alternating with rheumatism.
Hives are worse after bathing, after violent exercise and from warmth.
Hives and enuresis (bedwetting)
Allergic skin reactions with burning, itching and severe swelling of larger area than only the spot of the sting [after stings of insects].
Burns [especially after being scalded with hot liquid] with burning sensation and violent itching.
Angioneurotic oedema [Apis].
Diarrhoea from suppressed eruptions.
Acrid urine, causes itching.
Affections of the spleen and Liver
Headache, with spleen pain, rush of blood to head
Soreness of abdomen, dysentery, burning and itching of anus
Edema, urticaria, rheumatic and gouty pains, and fever
Acute gout
April
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