This is, as the title suggests, one in a series of posts, almost entirely derived from emails from her family that they send me periodically to keep us up-to-date.
At the end of this post, and in a few minutes all the others, is a standard block of text with links to each part of the story of this child, as well as some additional information.
I got this account from a client, who is also the parent of a very young client, his daughter.
Here is what he said in his email. Like many of our clients, for what I hope are obvious reasons, he wishes to remain anonymous.
Attached is a copy of an account of A’s treatment of Crohn’s using helminthic therapy. I hope it will be of some use to you, and it is yours to do with as you want, as long as we are kept anonymous.
I would like to thank you for your hard work, and let you know I appreciate what you have done for us. I’m sure my wife has told you on the phone, but I wish to do so personally. A continues to do great, and I couldn’t be happier. Please pass this sentiment on to anyone else involved with your business. We are grateful.
Please let me know that you received this.
Here is the letter to me that he attached to the above email:
This is an account of my two year old daughter’s treatment of Crohn’s disease using Helminthic therapy, interjected with my, her father’s, personal opinions and experiences. I’m providing this to Jasper Lawrence, at his request, on condition of anonymity. I’ve tried to limit the content to things I believe were important to our family’s decision making, and I’ve tried to omit any specific scientific references, as these are things one should read for themselves, and draw their own conclusions. It is also hoped by me that it will be of good use in providing some type of comfort, if needed, to any who are interested in trying the therapy for their children. Or that it will at least be of interest to those who know that one need not follow conventional wisdom to find success.
My daughter, A, was diagnosed with Crohn’s disease at the age of 14 months, after a colonoscopy in January, 2010. Symptoms consistent with the disease appeared in December, 2009. She had chronic diarrhea, and blood in the stool. She also was generally colicky (i.e. irritable, whinny, clingy to her mother, etc.) She has a family history of the disease, her Aunt has Crohn’s, and I have ulcerative colitis. It is important to note that the disease is extremely rare in one so young, and symptoms are usually severe.
I was diagnosed at the age of 18, and in the 9 years I’ve had it, have ended up in the hospital twice, tried many drugs, and have had several very rough years. Anyone with the disease, or who knows someone personally with it, knows what I mean when I say it is a rough ride. (I will also say I have had many, if not all, of the best experiences of my life in the interim and even during flare-ups, and that I have learned much also from the bad times) There is no need to describe all the unique problems a Crohn’s patient must face here, suffice to say they are often unpleasant. It is not the type of experiences one pictures as the immediate future of their one year old child. Needless to say the news was rather devastating for a time to my wife and me.
We took A to a very prestigious hospital’s pediatric G.I department from the beginning. Her doctor started her on Flagyl first, to no effect, then prednisone and Pentasa. From the start there was talk of Remicade and 6-MP as treatment options if she could not sustain remission after weaning from the steroids. The steroids would help the symptoms for a time, but without fail the symptoms would return when she was weaned past a certain point. The Pentasa dose was also increased to no avail. One cannot stay on steroids for too long, least of all a small child, so given the circumstances we were forced to consider the options.
The prospect of taking hard medicines for any illness is not to be taken lightly, especially in very young children. The side effects of these drugs can range from the mild to severe, to even deadly in very rare occasions. On top of knowing that, these particular medications, while currently being given to children, have never been studied in young children, at least as far as I know or was told by the G.I’s. They are certainly not approved by the FDA for that particular use. One could conclude, or at least accept as a possibility, as I did, that the long term use of these drugs on one so little is more then likely not going to end up well.
But of course the effects of the disease can be worse. The doctors will tell you “We need to treat the symptoms she has now, now, and deal with any potential side effects in the future when they present themselves. Who even knows what will be available in a few years?” That is very true, and it put my wife and me in a difficult place to make a decision. Most doctors, and people in general, find it hard to look past next week. I couldn’t help thinking of A at 13, and 18, and 30! Knowing the potential and unknown side effects of the drugs most likely to be needed for A, and knowing that she could not stay on prednisone much longer, and knowing the severity of the disease itself, we were torn on what decision to make. I’ve tried to make this point clear, that it was not an easy decision on what course to take, as it is no doubt a common sentiment with many people in similar circumstances.
Looking back it is clear that there were two particular instances of good fortune bestowed upon our family during this time of indecision. The first was a recommendation by A’s pediatrician of another G.I to try. A’s original G.I, while very qualified, seemed to treat her more as a subject to be studied, and less as an actual person. The doctor was very prestigious, with her name on many studies, but did not seem the right fit for us. She seemed content to put A on any drug necessary to stop the symptoms, and then draw her blood for some study or another, that no doubt will someday change the way we view IBD in children! I am being literal. This did not seem the best course to us, so we packed up and went to the new G.I. The first thing she did was recommend to my wife the book “Breaking the Vicious Cycle”, a diet approached method to treating IBD and other diseases. Right away we could tell this doctor was different. This was around May, and A had been on and off the prednisone since around February. (I would like to stress that if you can’t seem to get along with your doctor for whatever reason; my advice is just to leave! I made the mistake of staying with a doctor for years who seemed content to run a drive-thru clinic, rather then a quality health care center. This was a costly mistake, and one I would not repeat with my child. There are doctors who will care for their patients, take time with them, get back to them, and treat their sentiments with respect. I found one for myself, and one for my daughter too. It is very important!) The second event was a visit my wife had with my G.I, around the same time as our doctor switch. They talked of A’s circumstance, and our apprehension of the drugs, and she suggested we look into Helminthic therapy. She had heard there was a place in Mexico you could get the treatment, but did not know much beyond that. I had known a little about the therapy, but had no idea one could actually get it, short of participating in a study in Europe. With no time to waste we began our personal research and journey towards Helminthic therapy.
I find before I jump, I prefer to look down first, rather then up, to measure the risk. Through our research we found that the helminths presented extremely little to no negative effects, while offering the potential for dramatic improvement. This is a stark contrast to the conventional drug treatments. (I’ll note here that anybody doing anything should rely solely on their own judgment of the facts which they have done the homework on themselves, especially in a case such as this. I’m not trying to tell anyone what to think; only what I think based on my knowledge.) Imagine the relief that such a treatment, while not as simple as a written prescription, at least existed, and was possible to obtain. With little downside and unlimited upside, the choice was finally clear. My wife had a little problem of squeamishness at the thought of worms in our one year old, but that did not prevent her from backing the idea. My wife made a chart showing the pros and cons of Helminthic therapy against those of 6-MP and Remicade. We presented our case to A’s G.I. I believe she was a little startled at our suggestion, it was unexpected even to us a few weeks earlier, but she did not dismiss it. She knew that one course or another must be taken quickly as nothing to that point had worked. She did her own research and even talked to some other people in the hospital about it while we contacted Jasper at Autoimmune Therapies.
Searching for where to obtain helminths will no doubt lead one to Autoimmune Therapies, and we were no different. I emailed Jasper and we set up a phone consultation. We asked him any questions and concerns we had, and he addressed them. This was around June. We knew the risks, and the costs, and we were ready to get busy. A’s health had waited long enough, and I was getting antsy. Jasper set up another phone consultation, this time with A’s G.I, which I believe she insisted on, and which I also believe Jasper was happy to oblige. They hashed out the dose, and the choice of whipworm, and while the doctor could not explicitly bless a treatment banned by the FDA, she did agree to continue to treat and monitor A no matter what course we chose. She even has us come in on days she normally does not take patients, and has stayed well past closing time to sit and talk with us. Do you see the importance of a good doctor? I thought it best that I should take a standard dose of helminths too. A could not say much beyond mama and dada at the time, and if there were to be any side effects, I wanted to experience them too. I talked it over with my doctor, and she seemed to think it was a good idea and had no problem with me taking them as well. So in July, with everybody on board, we were off to get our dose of whipworm, both nervous and a little excited about what the future may hold.
It was agreed by all A would stay on her current dose of prednisone until she took the helminths, and then begin a slow taper. She had been on and off, only to be back on them for the past six months! But health was our goal, and one must accept short term setbacks for long term goal. We came home from obtaining the helminths, and after a few weeks something amazing happened. A started to undergo a personality change. She started being much more easy going. She started playing with her big sister more and better. She no longer had to be by her mother’s side or in her arms constantly. We could even leave her at Grandma’s house for a while, something we had not been able to do due to her moodiness. I will tell you her whole disposition changed. She was happier. I can attest to the fact that being sick from Crohn’s changes your whole mood (Ask my wife!). Depression, moodiness, tiredness, are all symptoms. Those symptoms seemed to be leaving our daughter. She looked better. For months she had dark, baggy eyes. She had looked sick. Now she was looking good. I noticed, Grandparents noticed, her doctor noticed. She had energy and life, something she had not had for months. Rejoice! All the while we were weaning her off the steroids. For months A had not had a good stool, most often it had blood in it. Now her stools were improving. Not all better, still occasional blood, but my wife, the head diaper changer, said she couldn’t remember when she had had a good poo. Now she would have great stools, at least some times. It was, and continues to be, an up and down battle with stool quality. (I’ll speak my thoughts now on the subject of the ups and downs. When I would experience a flare-up, my stools would never get better until I took prednisone, or tried a new drug. They never did it on their own. Hers does. I would have to go many times a day to the bathroom, she has had whole days where she hasn’t gone at all, and most times it’s once or twice a day. When I would get sick, I never felt better, I would only get worse, and worse, until I took the steroids. She never seems to be sick, but her stools are not always completely broken down, and there is still occasional blood. But just the last few days she has had perfect poos. It does not seem consistent with the progression of Crohn’s symptoms, which is get sicker and sicker until taking new or increased drugs, which seems particularly true in the youngest of patients. I talked this over with the G.I, and she agrees that it does not seem to be the Crohn’s. My thought’s are that it could be side effects from the worms themselves. Helminthes infection and Crohn’s symptoms are very similar. As far as we know, no one has ever intentionally given helminthes to a one year old, and almost certainly never one with Crohn’s. Who’s to say how they will affect her? These are my thoughts only on the subject. It’s important to note that these particular symptoms are very mild, and even her doctor has said she’s not concerned with them, but I bring them up as this as an account of facts, and of anything I think would be important or useful for someone else.)
So at the beginning of September, 2010, she was completely off steroids and all drugs for the first time since she got sick. She had gained a pound and her blood work was great. All our side effects were great! What more could we ask for?
It is now January, 2011, over one year with the disease, and almost six months with helminths, and four months with absolutely no drugs! She even just two weeks ago had a stomach virus with throw-up and diarrhea and has bounced right back. Anyone with Crohn’s will tell you she must be doing well. She’s continued to gain weight, her blood work has continued to look good, and A is happy and doing great. She has even started to use the potty herself; something I can assure you is a unique concern when dealing with a very young child with Crohn’s. Her doctor is happy, and I believe has even recommended it to other of her patients where nothing else seems to be working, although I do not speak for her actions. Jasper is happy, we’re happy, and Grandma lets it be known that little A is a little miracle! I can only hope the good effects continue, but who’s to say? Ask me how she is doing in a year. I never expected this to be a quick, easy fix to such a difficult problem, but I must say it has worked wonderfully and at least as well as could be hoped for. For now we are all happy, and we have given our little girl her childhood back.
One always hears expecting parents respond to the question of whether they want a boy or a girl with, “it doesn’t matter as long as it’s healthy”. Well, to truly appreciate health one must be sick, and then be well. My advice to someone considering this therapy for their child, or for themselves, would be, do not wait. I’d hate to think where we would be today had we not been fortunate enough to come upon the therapy, and to have the courage to take action. First convince your mind of the right course. Do your research and draw your own conclusions. It’s amazing how many people can read the same thing and come to so many varied ends. The truth is usually very simple. Once the mind is convinced, the action should follow. I knew this was the only course for us because I thought it had the least chance of exploding in our face, with the best chance of succeeding. My thought is that this should be a first course of treatment, before any harsh drugs. If it doesn’t work, then try the drugs, at least you will have tried. And the child would have been on the drugs anyway. I don’t view medications as evil, and certainly not unnecessary, only that obviously safer alternatives should be tried first. Once you start the drugs, it is very hard if not impossible to get off them. This was what I was trying to avoid. I know that even if A must take the drugs one day, I will sleep easy knowing I did what I could when I had the opportunity. Plus, the disease tends to get worse in time, and thus harder to treat. Start early, if at all possible!
I’ve heard it said sometimes that to take worms on purpose is disgusting or that people just can’t get there minds around it. They would rather just take the drugs. Well, having to run to the bathroom twenty times a day is disgusting, if you can get there, toilet bowls full of blood are disgusting, being so tired you can’t stand is disgusting, needing blood transfusions is disgusting, a bowel resection is disgusting, cancer is disgusting, seeing a child going through all this is disgusting. Seeing an innocent baby condemned to suffer for a lifetime is disgusting. I’ve heard it said that the treatments effects can be explained by the placebo effect, or that there are just not enough studies to convince people of the therapies benefits. Well, explain the placebo effect to a child who does not even know she has a disease and who never knew she took a treatment to save her. Explain that to a child who can’t say placebo. I assure you that A was the ultimate double blind study. A perfect test subject!
As parents our children are our responsibility, so we must do what we know is best for them. That’s what we did. I wrote A a long letter the day before we got her whipworms. In it I told her my thoughts, my guilt, and my hopes. I explained a lot of my own personal experience with the disease, and reasons for the decisions we made on her behalf. I thought it only fair to explain to a future, mature girl or lady, who had no say in the matter, why her father took the actions he did at the time. Actions that could affect her entire future. I let it be known that I did not know if this would cure her, help her for a while, or even help her at all, while stating that I hoped it would be the former. I suppose this letter is really for her too, as much as any one else who wishes to read it. It is a testament to an amazing little girl who I love.
End of letter.
So good so far, of course no one knows how long such results will continue, but given the youth of the subject, and that she was given helminths so early on after diagnosis, and the weight of epidemiological evidence from the third world where Crohn’s is almost unknown, I feel confident about A’s long term prospects.
Now to related matters. While I feel joy for this man I can’t help reflecting on my family’s situation.
Michelle and I are separated from our children so that we can continue to offer this therapy, thanks to the FDA decision to classify helminths as a drug.
I hope this makes clear why we were willing to make this sacrifice. I wish more of our clients were willing to offer even anonymous accounts as lucid and as eloquent as this.
But it is time that the scientific and medical communities allow us to be reunited with our children, because what is obvious to me and to this father should be obvious to them. It isn’t like I invented this or discovered it. The evidence is lying around in medical journals for anyone to read.
Helminths of the type, and in the numbers, we use present no health risk, this according to the Centers for Disease Control in the United States, who recommend doctors not treat light infections of these organisms.
How is it then that the FDA can classify them as a pharmaceutical requiring years of study when there are so few risks? Why not classify them as a probiotic and let us get on with it?
I would like to see my children, I would like to be a father again. I am no longer a father, if I am lucky I am an activity director for a couple of weeks a year.
For what? Making sick people well using an organism one branch of the US Government says is so benign it isn’t worth the trouble to eliminate in people who are infected with it.
It is very hard not to be very angry, and bitter. But the real tragedy is not that my family has been sundered, it is that millions of people will not benefit from this therapy who could. People like A above, who not knowing about or not trusting this therapy, will instead lose their intestines to surgery, lose the use of their limbs to Multiple Sclerosis, develop insulin dependent diabetes and suffer blindness, kidney damage, amputations and shortened lives, etc., etc., etc.
What we need are some scientists with the courage and principles to speak out, to put what is right ahead of their narrow interests, to help their fellow humans.
How is it that a therapy without risks even as bad as aspirin, that could right now prevent anyone from developing Type 1 Diabetes, put all or almost all cases of Multiple Sclerosis into remission, never mind its potential for Crohn’s, Ulcerative Colitis, Sjogren’s Syndrome, etc., etc., etc., is not being investigated in a crash program? We spend more on garbage bags annually than the cost of such a program.
Why is something that one branch of the US Federal Government says is safe made illegal to use therapeutically by a different branch of that same government?
Someone please explain our world to me.
Maybe then I can explain it to my children.
Part 1: Part 1 of the story of “A”
Part 2: Part 2 of the story of “A”
Part 3: Part 3 of the story of “A”
Part 4: Part 4 of the story of “A”