My 11 year old daughter is nearing the 15 month mark with her hook worm helminthic therapy. It's been about 3 months since I wrote the one-year summary (I'm posting it below) and I wanted to give an update. My daughter has not been on ANY medication (including over-the-counter immodium) since this post. She has solid stools most of the time, and I can count the intestinal cramping episodes on one hand. (And frankly we wonder if those few episodes aren't related to school/stress and not Crohn's?). We are not so naive to believe there won't be hiccups down the road, but the helminthic therapy is thus far miraculous.
Here is my posting from a few months ago on the Yahoo helminth forum:
"Our first year with Crohn's disease & helminthic therapy"
In October of 2011, our (then) 9 year old daughter was diagnosed with Crohn's disease. We had been working with our family physician for close to 6 months to uncover the root of her intestinal pain, chronic diarrhea and steady weight loss. During this half year, she went from 92 lbs. to 69 lbs. and we were becoming frantically concerned for her well-being. It was finally through referral to a G.I. specialist, colonoscopy, endoscopy and MRI that confirmed her disease.
Several days after her official diagnosis, we met for a consultation with her
G.I. doctor to hear his plan for treatment. His recommendation was to begin I.V. treatments of Remicade combined with Imuran. Weekly, then tapering off to every 8 weeks within a year. I was shocked by the invasiveness, the potential life-threatening side effects, and the cost (approximately $6,500 per treatment). I knew there had to be alternatives. I venture to guess I spent over a hundred hours researching on-line, calling folks with Crohn's and reading books ordered on-line.
It was during this intense period of research, that I came upon helminthic
therapy. And I realized I'd heard Jasper Lawrence on an NPR broadcast some years earlier. I dug through podcasts from "This American Life" and found the show I remembered. My husband and I were convinced that this approach, combined with a modest pharmacological program, was our best hope.
We did not enter lightly into our treatment decision for our daughter. Again I
spent countless hours researching and reading about helminthic therapy and we believed that we had nothing to lose, and only to gain. We chose to begin a course of Entocort steroids to bring my daughter's intestinal swelling down quickly, combined with 1500 mg. of Pentasa per day. She got good results fairly quickly from these medications, but after a month or so seemed stalled. At the same time we started these prescriptions, we contacted our provider to begin our daughter's helminthic journey.
Almost exactly a year ago, two tiny little vials arrived in the mail. One for
our daughter, the other for her dad. Our provider allows for a parent to engage in this therapy for "comfort" purposes. It was with much excitement and a bit of anxiety that we applied the `bugs' (as we call them in our family) to the upper arms of dad and daughter. There was a strong stinging sensation and itch about 10 minutes later. It was bothersome, but tolerable for a 9 year old to bear. Neither dad nor daughter noticed a cough in the ensuing week, but were careful not to spit out the bugs as was cautioned by the information from our provider. A rash persisted at the inoculation site for several months. But this was also tolerable.
Over the next five months or so, we kept our daughter on 1500mg of Pentasa daily. And we kept a journal on how many intestinal cramping episodes she had per day. Diarrhea episodes, eating habits, weight gain, etc. Her progress was an improvement to her overall health, but Crohn's was far from in a state of remission. We knew it could easily be 6 to 8 months before any benefit from the helminths would be apparent. Sometime around the 6 month mark, it became apparent that our daughter was having fewer cramping episodes, and would have consecutive days of solid stools. We were cautiously optimistic that the `bugs' were kicking in!
Then came the set-back. In April (the 6 months of helminths mark) pertussis
(`Whooping cough') broke out in our county and in our daughter's 4th grade
class. Our family physician recommended she run a course of antibiotics
prophylactically to be sure she didn't contract pertussis (even though she is
vaccinated against it). Long story shorter, the antibiotics cause the hookworms to become basically dormant, and our provider sent us another dose of 35 `bugs' for our daughter in early June of last year.
The second dose was barely noticeable in regards to side effects. And over the next several months, the second dose went to work waking up the dormant hookworms from the first dose. My daughter was on summer break, and doing a poor job keeping up with her daily Pentasa. By August, unbeknownst to us, she was going days without any prescription medication. And lo and behold was actually experiencing little or no intestinal cramping, having solid stools quite often, and had gained weight over the summer. She looked good, and she felt good. When school began this past September, we made the conscious decision not to have her take mid-day medication at school. We've also empowered her to take Pentasa when she deems it necessary.
In Nov. [2012], we had bloodwork done on our daughter, and scheduled a one-year check up with her G.I. doctor. He was extremely impressed with her progress and utterly in agreement that the helminthic therapy is a large part of her overall wellness. She has no anemia, has gained over 15 lbs. and simply looks and feels good. While there is still an indication of some internal swelling from the `sed rate' shown in her bloodwork, the improvement from a year ago is stunning! Our beautiful little girl is yet again thriving.
Suffice it to say in our family, we are convinced that we've chosen the most efficacious treatment course for our child. And are so far thrilled with the results of her helminthic treatment.
Here is my posting from a few months ago on the Yahoo helminth forum:
"Our first year with Crohn's disease & helminthic therapy"
In October of 2011, our (then) 9 year old daughter was diagnosed with Crohn's disease. We had been working with our family physician for close to 6 months to uncover the root of her intestinal pain, chronic diarrhea and steady weight loss. During this half year, she went from 92 lbs. to 69 lbs. and we were becoming frantically concerned for her well-being. It was finally through referral to a G.I. specialist, colonoscopy, endoscopy and MRI that confirmed her disease.
Several days after her official diagnosis, we met for a consultation with her
G.I. doctor to hear his plan for treatment. His recommendation was to begin I.V. treatments of Remicade combined with Imuran. Weekly, then tapering off to every 8 weeks within a year. I was shocked by the invasiveness, the potential life-threatening side effects, and the cost (approximately $6,500 per treatment). I knew there had to be alternatives. I venture to guess I spent over a hundred hours researching on-line, calling folks with Crohn's and reading books ordered on-line.
It was during this intense period of research, that I came upon helminthic
therapy. And I realized I'd heard Jasper Lawrence on an NPR broadcast some years earlier. I dug through podcasts from "This American Life" and found the show I remembered. My husband and I were convinced that this approach, combined with a modest pharmacological program, was our best hope.
We did not enter lightly into our treatment decision for our daughter. Again I
spent countless hours researching and reading about helminthic therapy and we believed that we had nothing to lose, and only to gain. We chose to begin a course of Entocort steroids to bring my daughter's intestinal swelling down quickly, combined with 1500 mg. of Pentasa per day. She got good results fairly quickly from these medications, but after a month or so seemed stalled. At the same time we started these prescriptions, we contacted our provider to begin our daughter's helminthic journey.
Almost exactly a year ago, two tiny little vials arrived in the mail. One for
our daughter, the other for her dad. Our provider allows for a parent to engage in this therapy for "comfort" purposes. It was with much excitement and a bit of anxiety that we applied the `bugs' (as we call them in our family) to the upper arms of dad and daughter. There was a strong stinging sensation and itch about 10 minutes later. It was bothersome, but tolerable for a 9 year old to bear. Neither dad nor daughter noticed a cough in the ensuing week, but were careful not to spit out the bugs as was cautioned by the information from our provider. A rash persisted at the inoculation site for several months. But this was also tolerable.
Over the next five months or so, we kept our daughter on 1500mg of Pentasa daily. And we kept a journal on how many intestinal cramping episodes she had per day. Diarrhea episodes, eating habits, weight gain, etc. Her progress was an improvement to her overall health, but Crohn's was far from in a state of remission. We knew it could easily be 6 to 8 months before any benefit from the helminths would be apparent. Sometime around the 6 month mark, it became apparent that our daughter was having fewer cramping episodes, and would have consecutive days of solid stools. We were cautiously optimistic that the `bugs' were kicking in!
Then came the set-back. In April (the 6 months of helminths mark) pertussis
(`Whooping cough') broke out in our county and in our daughter's 4th grade
class. Our family physician recommended she run a course of antibiotics
prophylactically to be sure she didn't contract pertussis (even though she is
vaccinated against it). Long story shorter, the antibiotics cause the hookworms to become basically dormant, and our provider sent us another dose of 35 `bugs' for our daughter in early June of last year.
The second dose was barely noticeable in regards to side effects. And over the next several months, the second dose went to work waking up the dormant hookworms from the first dose. My daughter was on summer break, and doing a poor job keeping up with her daily Pentasa. By August, unbeknownst to us, she was going days without any prescription medication. And lo and behold was actually experiencing little or no intestinal cramping, having solid stools quite often, and had gained weight over the summer. She looked good, and she felt good. When school began this past September, we made the conscious decision not to have her take mid-day medication at school. We've also empowered her to take Pentasa when she deems it necessary.
In Nov. [2012], we had bloodwork done on our daughter, and scheduled a one-year check up with her G.I. doctor. He was extremely impressed with her progress and utterly in agreement that the helminthic therapy is a large part of her overall wellness. She has no anemia, has gained over 15 lbs. and simply looks and feels good. While there is still an indication of some internal swelling from the `sed rate' shown in her bloodwork, the improvement from a year ago is stunning! Our beautiful little girl is yet again thriving.
Suffice it to say in our family, we are convinced that we've chosen the most efficacious treatment course for our child. And are so far thrilled with the results of her helminthic treatment.
Godspeed!
