Update on Aaron - Today is WinRho and Rituxan

Well, Aaron had his first dose of Rituxan last week. Saw a homeopath and working with him. Aaron had his first nosebleed and his count was still 1K. Mommy has decided she is not comfortable with 1K and nose bleeding started. So, opted to do WinRho even though I hated the idea but hemo still wants to continue with Rituxan simultaneously since it can take so long. Biggest worry is the headaches he gets from all the treatments. Got smart and asked for a script for something if Tylenol doesn't help. Aaron has been so tired and has napped after school every day for the last 2 weeks. It is hard to see him so tired and also grateful he is doing good with his bleeding. I hope and pray that we can get him leveled off at least to 5K and above. Did I say I hate the Number 1 unless it has more zeros behind it Looks like Disney will be out of the question for now but still want to go visit daughter and meet my granddaughter and see an old friend during the holidays. Hoping we don't have to cancel if Aaron can keep his bleeding off, LOL. Our plans are flexible and subject to change at any moment. 2 more doses of Rituxan... I hope everyone gets more platelets this holiday season.

Peg, how is Aaron doing now? keep us posted. Sending wishes for high platelets and lots of zeroes.

Thanks for asking. I don't get on much. Well, we finished our 4th dose of Rituxan on 12/26/12. Aaron has been suffering from headaches and we finally had to go to Ped and Hemo wanted a Cat Scan before giving him a prescription for Floricet (Tylenol, Codeine and Caffeine). Helped some but still lingering and nausea has been off and on. His last count last Friday was a whopping 0. Had a 504 meeting at school today because he has missed more school than attended lately. Either he stays home, goes to nurse and is sent home or spends a few hours relaxing in the office. He is so far behind and we might have to consider keeping him home and have the school send work home and a tutor. Aaron would prefer to go to school. So, now looking at if they can shorten his school day (go in later so he can sleep in), if they can provide transportation. Ugh. He is in 11th grade and a tough year to be going through all this. Don't have any answers yet. We started his elimination diet (wheat, dairy, eggs and peanuts) on Saturday. Hoping we get some positive results. Right now, we will take a stable 10K right now. See the homeopath on Monday. I hope to get on and have a more positive post soon

Hi Peg,
So sorry to read this news and to hear Aaron is feeling so crummy. Maybe the rituxan will still kick in, right? Do they think they headaches and lethargy are from the rituxan? or is it something as run of the mill as mono or even a low grade flu? I just have a lot of questions, really, but I'm wondering if the rituxan, in suppressing his immune system, just made him a good host for some other ickiness. i really hope you can find a way for him to start feeling better.. UGH. Esp junior year, but I hope that he can just forget about the whole college process and trust it will work out. I was a college counselor for 7 years, and know first hand there are many varied, unique and wonderful paths to college if that's the right place for a young person to be. But it is clearly a lot, too much, and I hope you all get some good relief soon.

Curious: who is your homeopath? We used to go to Dr. Richard Moskowitz in Watertown.

Best, Firkins

Peg,
Are you seeing a Homeopath or a Naturopath? (Doing an elimination diet is usually more of a Naturopath thing. Most Naturopaths have a limited bit of knowledge with using homeopathic remedies, usually using them more for acutes illnesses or injuries, rather than doing deeper, constitutional treatment.) But, either one should be able to look at Aaron's symptoms and give him a remedy to help with the reactions. You shouldn't have to wait until your appointment, when he's having the symptoms now--in fact, I'm pretty sure your homeopath would want to know now, rather than a week later! It's always frustrating when patients come in after all the acute symptoms are practically over. The symptoms he's having can be a good clue to his constitutional remedy as well.

Infusion reactions are often similar to the flu, so the homeopathic remedy needed may very well be one that is commonly needed to treat the flu: Remedies like Gelsemium, Nux vomica, Hepar sulph, Arsenicum, Bryonia, Rhus tox, Baptisia, Ipecac or Belladonna are some of the more common flu remedies, that are also often indicated for infusion reactions. Apis, Rhus tox and Urtica urens are the ones most often needed for serum sickness. Apis is the #1 remedy for anaphalactic shock or other severe allergic reaction. Of course, there can be numerous others--it depends on his specific pattern of symptoms, but your homeopath should be able to find one to help quite quickly. After all, homeopathy has been studied and proven to help significantly with the side effects from chemotherapy and radiation sickness for cancer patients. Homeopathy also proved itself with great success in the Spanish Flu epidemic of 1918:

History of Homeopathic Care During the Spanish Flu of 1918

Records from the devastating 1918 flu pandemic that killed up to fifty million people around the world reveal that almost 99% of those who received homeopathic treatment survived, compared to a death rate of one third for those treated conventionally.

Some accounts from that time are:

1. A Philadelphian, Dean Pearson, collected information on 26,795 flu cases treated homeopathically with a mortality rate of 1.05% compared with a mortality rate of 30% for conventional medical treatment.
2. Frank Wieland M.D. of Chicago told how in a plant of 8000 workers there was only one death. Practically the only remedy prescribed was Gelsemium and neither aspirin or vaccines were used.
3. The fatalities at the New York City hospital, where all influenza patients were treated by homeopathy, were shown to be lower than in any other city hospital in the country.
4. Thirty physicians in Connecticut who treated the flu homeopathically reported 6,602 cases with 55 deaths, which is less than 1%
5. H.A. Roberts M.D. of Connecticut wrote of how the transport service on which he served had 81 cases that all recovered under homeopathic treatment in comparison to another ship that lost 31 men.
6. E. F. Sappington M.D. of Philadelphia wrote that 1500 cases were reported at the Homeopathic Medical Society of the District of Columbia with only 15 deaths. Recoveries in the National Homeopathic Hospital were 100%.
7. T. A. McCann M.D. records show that he treated 1000 cases of influenza with no losses. He gave all credit to homeopathy.
8. C. Smith King M.D. states that she treated 350 cases with homeopathy and only lost one.

(From The Faces of Homeopathy: an Illustrated History of the First 200 Years. pp.236-237, quoting from the Journal of the American Institute of Homeopathy, 1921.)

Firkins - The medication had helped the headaches but I think it has caused stomach issues. Don't know, he is vomiting but is not showing any other signs of flu or anything. No fever, no aching. Just nausea and his headache comes and goes but not as bad as before. He hasn't had the medication since Wed when he started having these issues. Wanted to see if it was that. Very frustrating... 504 meeting went like this...probably should housebound him and bring a tutor to him. Aaron does not like this idea, wants to go to school. He's like his Mommy and isn't good at staying on work tasks at home Other solution might be a shortened school day if they can figure out transportation so he can sleep in and go to school a little later. Don't know yet. He only went to school 1 day per week in the last few weeks, so if we can't get this stomach issue fixed, I will make the call after I see his homeopath on Monday. Currently have a MRI to schedule and a referral in the works for a neurologist for his headaches. Looking back, they have been pretty chronic, so going to check it all out and hopefully this doctor can give him something to help. Hemo does not want to give him anything but Tylenol, suggesting the neurologist. We see Dr. William Shevin in Woodstock. I don't think his immune system being supposed suppressed from the Rituxan is the problem. He hasn't made it to school in the last month or anywhere else for that matter. Aaron has always been an extremely healthy kid (ironic, other than ITP and his heart surgery at birth).

April, yes we are seeing a homeopath and he is also an MD. Years ago, I was seeing an Naturopath and it was under him that we did the blood tests and the elimination diet. Homeopath wanted us to try it again since we did get a positive response last time, and unfortunately only cheat caused crashing. So, hopefully since he is older and we are wiser, we can do better (if it works). I didn't call because I thought it might be from the Rituxan, but over time I am thinking it is more than just a reaction to the treatment and then the nausea, etc. We already had an appointment on Monday so talk to him this Monday. I had associated many of headaches, etc. to infusions. But, when he only the Rituxan, he did not appear to have any severe reactions, just a slight headache for a day. It was 2 weeks between Treatment 3 and 4. And, he said that constant headache started before the last treatment. He would wait up with it every day but would go away for the most part but he felt constant pressure though. Then the Tylenol wasn't helping at all and it was constant for about 3 days before we saw the ped and had the CAT Scan. I believe it is a sinus issue but ped said no. It is behind his eyes and his forehead. We have done all the usual things. The Tylenol with Codeine did break the cycle and his headaches are fewer and manageable. But the other issue is still here.

Let's hope that his homeopath has something up his sleeve to help ,but we will continue with our standard medicine route to get him checked out by neurologist. Aaron has always suffered from headaches...maybe we will get something out of all this testing and find something to help him, in general. Don't feel it has anything to do with ITP, but you never know. I do believe in homeopathy and I know it not absolute or easy especially with the crazy disorder of ITP. Thanks guys and let's pray we get some positive results soon. Peg

Hi Peg,

Hope Aaron is feeling some relief and that the visit to the homeopath went well. The school issues sound frustrating -- being able to get up and go to school, even on a modified schedule, can be so essential for staying optimistic. I hope you can work that out with the school administration.

Please keep us posted on how it's all going -- headaches, tummy aches, and if the rituxan yields any results.

Mia, my daughter, has also started rituxan -- as has Dougie -- so let's all hope it does its job!
best, Firkins