I called and spoke with an online retailer for Allimed about using it for Ben. That conversation was positive though there was no real history of someone doing that before. We were already doing a lot with Ben (see my other section on this blog for Ben's treatments we used) but we added Allimed to the list.
Ben was taking a lot of pain medicine but we also had him taking the Allimed and several other nutritional helps. We wanted to avoid putting him in the hospital if at all possible but we knew the way his pain was increasing we could not avoid it for long.
We had been consistently asking the Dell Children's doctors to help us do something different this time. We didn't want to take the same medications again with the same results. I insisted on hyperbaric oxygen treatements and eventually the doctors agreed.
On March 28th we might with Dr. Gary Mailman at St. David’s Hospital Hyperbaric Oxygen treatement center. He has a great ability to interact with kids and Ben loved the visit. Dr. Mailman initially recommended about 20 to 30 2-hour treatments for Ben. We began those the next day.
On April 20th we met again with Dr. Prince. Recent x-rays showed noticable bone damage. Much worse than what she had seen from just a few weeks ago. She recommended surgery for Ben (clean out the area, more biopsies/tests, the installation of antibiotic beads, etc.). We were very concerned. Things were looking very bad but I had also noticed that I was starting to spacing out dosages of pain medication for Ben. Ben had been on the Allimed for a while and he'd been having the HB02 treatements. Maybe he was doing better?
I asked Dr. Prince if we could have more time to see if Ben was improving. She reluctantly agreed. I went home and uped Ben's dose of Allimed from 2tsp a day to 6 tsp a day. We were told the next surgeries Ben had would be invasive. There was the possiblity that large chunks of affected bone would be removed and these could affect his growth plates. If that happened his leg bones would not grow anymore. I didn't like the thought of possible difficulties walking or leg extensions. Dr. Prince gave us 3 weeks to see if Ben would improve or not. If not, immediate surgery was the next step.
May 9th - 3 weeks later we walk into Dr. Prince's office for our follow up appointment. We are all very nervous. Ben is taken for x-rays and then Dr. Prince walks in and pulls up today's x-rays along with the ones from 3 weeks ago so we can see them side by side.
The first thing she says is that she is "shocked." She expected to schedule us for immediate surgery but she sees in the new x-ray that Ben's bones have experienced massive healing in this 3 weeks - very atypical - it was the opposite of what she expected to see. His lower leg bones had grown in both length and diameter...and the pits caused by the bacteria appeared to be filling in.
My wife and I had been nervous but we also knew that two weeks prior we had stopped giving Ben pain medicine altogether - he didn't need it. The pain was gone.
5/25/2011 - Met again with Dr. Prince today. After the last visit (and thinking Ben was "cured") we dropped Ben from 6tsp/day of Allimed down to 2tsp/day as a "maintenance" dose. After about 5 days we thought his ankle began to show swelling and seemed hot again. We immediately bumped him back up to 6tsp/day and, after being on it just a few days, Ben's swelling lessened and the heat stopped. Through this time we were continuing to go to the hyperbaric treatments. I called Dr. Prince to inform her that Ben was not completely well as might have been concluded from the last visit. She asked that we bring him in. It took a week or so to get him in.
Additional x-rays were taken. Dr. Prince pulled them up side by side with the 5/9 xrays. Much to my surprise bone density & growth was much better than even the 5/9 appointment. Ben was showing strong continued healing. Maybe we were wrong in what we thought we saw in his symptoms. I asked for bloodwork to be done to check for infection as well as liver & kidney function. Given Ben was taking 6tsp/day of Allimed I wanted to make sure I was not overdosing him and causing some type of toxic reaction we may not be aware of. On 5/26 Dr. Prince called to say the bloodwork looked great - "completely normal" in fact - not even a little inflammation showed up. In that call we agreed with Dr. Prince to hold the course on Allimed and HBO2 through the summer. We are planning to stop Allimed in August and see if the infection returns. If it returns, major surgery is our only option.
6-25-2011 Ben has been going to hyperbaric all this week and taking 4 tsp (2 morning and 2 night). He started complaining of pain in his hamstrings Wed (6/22) and limping. He doesn’t want to walk. He only had 2 TSP on Friday of Allimed and 2 today (Saturday). He’s been on Motrin most of today. Tammi took his temperature tonight at 10pm and his temperature was 99.6. Dr. Prince is on a 2 week vacation starting yesterday (Friday 6/24). We’ll call the on call Dr. tomorrow. Ben’s legs were fine this morning when he woke up but around 11am after swimming in the neighborhood pool he said they were hurting again.
6-30-2011 This past weekend on Sunday (6/26) we called the on-call doc on Dell Children's to report Ben had a fever and some muscle pain/weakness in his legs (particularly his thighs and hamstrings). Fever is bad because it tends to indicate infection (a bad indicator in kids with osteomyelitis). They said they would usually ignore a fever below 101.5 but given the pain he was feeling they suggested we take him to the Dell Children’s ER. We did and got there around 10am Sunday morning. They did ankle xrays and blood work. The blood showed a slight sed rate (i.e., infection) but the ER doc suggested he had muscle strains from swimming (we had been doing that week). Told us to go home and get rest, etc. Nothing major.
He has been off the Allimed for almost a month now and we are relieved that so far his ankle shows no sign of osteomyelitis. We will get him to Dr. Prince in the next week or so for xrays to see if ankle bones still show no signs of infection. Though we'd like to keep him on 1 or 2 TSP of Allimed a day as a "maintenance" dose we had agreed with Dr. Prince to take him off it altogether for a month and then do some xrays. If those xrays show no infection we will likely start back on a small daily does of Allimed ALONG WITH PLENTY OF WATER so he does not dehydrate again. Cathy (consultant at optimalhealthusa.com) recommends we keep him on a least a small dose for a longer period. That makes sense to us. Stay tuned.
10-20-2011 - Ben has not had any Allimed for almost 4 months. He is doing great and has had no relapse.