Bout #3 - March 2011 in Round Rock, TX

On Friday, March 18^th, 2011 - not two weeks since our "final" visit with Dr. Fernandez" - my wife and I are sitting on the couch late at night about to start a movie.  Ben walks up and says his ankle hurts.  We look down at it and can't believe our eyes.  It's noticably swollen and hot to the touch. 

I called Dr. Prince's on call number the next day.  Monday morning we are in Dr. Fernandez's office again.  She has no explanation for the recurrence.  We have several days of bloodwork, tests, x-rays, another MRI, etc. 

Within 5 minutes of Ben showing me his ankle Friday night I start searching Google again for any possible osteomyelitis treatements.  After telling our extended familes about this 3rd recurrence I got an email from an Aunt asking me to look at some alternative "cures" for MRSA (skin staph infection). 

Like all the times before, Ben's infection was internal to his leg bones (lower tips of the Tibia and Fibula).  This makes treating any infection there very difficult (very little access to infected areas by blood flow - not much oxygen gets in there - that's why standard antibiotics don't work well - these areas internal to the bone are hard to reach).   Also, we did not know what type of infection Ben had.  All previous biopsies/tests had been inclusive.  It could have been staph - but it could have been something else too. 

My Aunt's suggesting looking at the MRSA info was interesting because it led to some online research where I read about many people taking the same kinds of antibiotics Ben had taken but they did not work because the bacteria was resistent.  It had built up a tolerance that made the antibiotics less effective.  I had also learned from the docs in Salt Lake that the Austin, TX area is famous for resistent staph infections.  Almost all staph infections in Austin are initially assumed to be of a resistent strain. 

Some of the people I researched and began talking to had NOT been helped by antibiotics but a few had been "helped" by some natural cures.  I ran across a book by Michelle Moore on "secrets" for treating resistent MRSA.  I thought the book had a lot of info that was applicable to Ben's osteomyelitis.  Some of her notes and other sites pointed to Allimed - a garlic derivative developed in the UK that appeared to show positive results for many though it was not used widespread in the U.S.  



I called and spoke with an online source for Allimed about using it for Ben.  That conversation was positive though there was no real history of someone doing that before for our specific situation.  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.

We saw Dr. Prince on March 23rd and she confirmed our test results showed some infection.  Ben's pain was consistent and substantial by this period.  We had been giving him adult doses of Advil and Aleve around the clock but eventually Dr. Prince had to prescribe us some Tylenol with Codeine.  



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 28^th 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 said was that she was "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.

Dr. Prince had confirmed what we had hoped - that something very positive had been happening.  What a wonderful thing it was.  Dr. Prince said that based on what she had seen in the x-ray and her examination, plus the fact Ben had no pain, that she did not need to see us till August 2011 - 3 months from now - for a routine check up.  I gave Dr. Prince an empty bottle of Allimed and some medical & nutritional white papers I had printed out that supported the supplement.  She seemed interested to read about them and she did acknowledge that something had indeed happened to keep Ben from deteriorating as was expected.

Ben, my wife and I were elated.  We walked out knowing feeling like we had experienced something miraculous...but one good day out of a 3 year fight is not a cure - it's a battle won.  We had avoided major invasive surgery for the time being but our son still needed time to heal completely and make sure the bacteria was completely destroyed.


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.

Monday and Tuesday Ben’s fever continued between 100 and 100.7.  His muscle cramps were growing in intensity and spreading to his right shoulder and both knees below the kneecap.  He appeared very stiff overall and "waddled" slowly whenever he walked.  I spoke with Dr. Fernandez's nurse and after consulting between Dr. Kahn, Dr. Prince and Dr. Fernandez they decided his bloodwork sed rate from Sunday was concerning and they wanted more bloodwork Wed. to compare.  If that was still bad they’d want a MRI.  Based on MRI results they may want a bone biopsy.

While we waited for Wed to take more blood, Ben's walking worsened to the point that I took him to his pediatrician on Tuesday (6/28) afternoon.  He was miserable without Motrin.  He could hardly walk and we were very concerned something neurological may be happening.  Going upstairs was painful for him.  Standing up from a sitting position or taking any step up hurt him a lot around his knees.

Ben's family pediatrician thought his pain and fever were NOT related to his osteomyelitis at all but that he was severely dehydrated.  We had never thought of this given all the other more serious diagnoses we were consistently presented with.  Apparently, dehydration can also cause a mild fever.  Dehydration made sense to us because Ben never has been one to drink a lot.  The Allimed always seems to keep him full.  We also liked the idea of dehydration because it was reversible...though I could not understand why, as bad as Ben was, they put him in the hospital and start giving him IV's immediately.  Regardless, we took him home and began having him take a lot of Gatorade, Pedialyte and Pentawater.

We also stopped the Allimed on Tuesday 6/28 (3TSP that morning was the last dose he had).  If the super concentrated nature of the Allimed was contributing to the dehydration we had to stop it.  Ben was so weak the dehydration became far more of a threat to him than the osteomyelitis. We also knew we were stopping the Allimed in a month anyway so we went ahead and stopped it now.  

Wed. morning (6/29) we took him to get his bloodwork done and kept him on fluids and motrin.  He appeared better but still has a fever and without the Motrin he would not be doing well.

Last night he woke us up at 4pm in the morning sweating a lot, very thirsty and he could hardly walk to the bathroom and back.  He had no complaints other than a large cramp in his right glute muscle that made it painful for him to move that leg.

On Thursday (6/30) morning calls from the docs indicated higher sed rates than they'd like to see.  We were scheduled for an MRI the following day.  They did a 2 hour MRI (one pass with contrast - one without).  That night we got a call from the Dell Children's Infectious Disease doc (someone on call - not Dr. Fernandez) who indicated the MRI did NOT show osteomyelitis.  We were relieved but frustrated that Dell Children's never acknowledged what he was suffering from.  The docs that had been associated with Ben's osteomyelitis were content to say it wasn't osteomyelitis and that's all.  We still had a kid who struggled to walk.  Not their problem I guess.  It was something else.  Luckily we had been to the pediatrician and were pursuing re-hydration on our own.  

By Saturday 7/2, Ben was very weak but not in a lot of pain and most of the cramping had stopped.  We stopped giving him Motrin (we found out somewhere that ibuprofen is bad for folks with dehydration).  We were about two weeks late leaving for Utah to visit my wife's family for a few weeks.  Ben was anxious to go because many of his cousins live there.  He wanted to play for a change (no more docs/hospitals).  We'd been through quite a bit as a family recently so I suggested my wife and other kids go ahead and leave Sunday 7/3 for Utah.  Ben and I would fly out a few days later to give him more recovery time.  I was concerned I could not get him through the airport at that time given his extreme weakness.  A wheelchair would help in places but I'd still have to get him into the plane on his own.  

7-8-2011  Ben and I flew to Utah late on 7/4 to join the family.  Ben was and still is very weak but he is clearly improving.  He cannot run with his cousins in the backyard yet.  He can walk better though.  We are sleeping in some rooms downstairs (basement level) and Ben has a hard time getting up the strairs but he has no cramping or weakness.  It's purely strength related at this point.  

7-26-2011  We return to Austin from Utah today.  Ben is now getting around fine - as if the whole dehydration thing never happened.  It took about two weeks of nonstop fluids before his strength started returning.  I learned something about dehydration I did not know.  I assumed that he would do better immediately after getting more fluids in him...but he was so weak it took much longer than I thought.   What a scare that was.  For a week or so there we did not know what was happening or how to fix it.  Not much help from some of the docs either on that.  The last few weeks we have kept Ben as full of Gatorade & water as we can.


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.

Bout #2 - July 2010 - We're on Vacation in Island Park, ID

While on vacation in Island Park, ID Ben came to my wife and I the night before our week long vacation was over and said his ankle hurts.  We had him sit up on the bed so we could look at it and we immediately see that it is very swollen and noticably hot to the touch.  We instantly recognize that osteomyleitis had returned. 

Earlier that day his ankle looked fine.  We had been on scenic rafting trip in some very cold water but Ben had not fallen or damaged his ankle in any way. Like last time there was no real trigger or event we could identify that caused it. 

The next day we drive to Highland, UT (where Ben's grandparents live).   We make it to an InstaCare in Alpine, UT around 5pm and recount his medical history for the staff there.  They take some blood, x-rays and arrange for an immediate MRI at the local American Fork hospital around 7:00pm.  

By 10:00pm that night we had an osteomyelitis confirmation from the MRI.  It's in the same place as before.  We are asked to drive immediately up to Primary Children's Hospital in Salt Lake City, UT.  Ben and I are there at the Emergency Entrance by midnight all packed and ready for a week long stay just like last time.

The next few hours stretch into days as we begin an intense regimine of tests.  Some are the same as before but some new ones are added (e.g., tests for Chronic Recurring Multifocal Osteomyelitis or CRMO as well as bone cancer are added this time around). 

I put the doctors in Salt Lake in touch with the docs in Austin to “share notes” (though not much of that seemed to happen).  The Primary Children’s docs insisted on another bone biopsy which we did not want Ben to have (see the pain from the earlier episode and the test revealed nothing to help Ben). 

Ultimately, we relented after their voicing concerns that seeing and testing the bone would help them rule out cancer.  That was, of course, VERY concerning to us (cancer had never really been mentioned as a possibility before)...but even more frustrating was the fact that the hospital lost the bone samples after they did the biopsy.  The bone samples were never tested.  We were furious over this – especially after they began downplaying the need for the biopsy since they had lost it.  Interestingly, it took about 3 days for them to admit they had lost it.  I was asking them for test results about every 3 hours during that period and became increasingly vocal in response to their having nothing to share.

The good news was that the Osteosurgeon told me that, after visually inspecting Ben’s bones during surgery, he was sure it was not cancer (he’d seen that many times before and he said this looked nothing like it).   

Big tip here.  We had told the docs before the biopsy surgery how much pain Ben had the first time.  They offered to do a pain block (shot up his leg about halfway up his calf with A LOT of pain medicine 360 degrees around the leg).  The doc said Ben wouldn't even know he had a foot for about 3 days.  This turned out to be a wonderful thing.  Ben had virtually no pain after the surgery and, by the time he could start feeling his foot days later, more standard types of pain medication worked well for him.  Definitely ask for your child to have a "pain block" if they have to have any kind of bone biopsy or bone marrow extraction. 

Another tip.  We asked them to install the pic line at the time of the biopsy surgery (this time they put a pic line in Ben's arm for the IV antibiotics instead of a broviac line in his chest).  This way Ben would only have to have one surgery - not two like before.  This also worked out great and reduced the perceived stress that both Ben and we as his parents were under.

When this surgery was over, my wife and I again received training on how to administer the same IV antibiotics as before through Ben's pic line.  We were pros and could easily remember everything from the last time. 

After a week in the hospital we were home again going through the same regimine of care as before and on pretty much the same round the clock schedule.  

It was amazing to us that we were going to repeat the same course of therapy which had not worked the first time.  This did not seem to bother the docs but it really bothered us.  Whenever we brought it up our concerns were dismissed.  I had spent hours and hours online the first time Ben had this and now this second time but nothing promising turned up.  There seemed to be very little course of action but to comply with the doctors.  We did what we could nutritionally but that was about it.

We spent about 2 more weeks in Utah.  I rented a wheelchair for Ben so we could finish up our vacation as much as possible.  We rolled him around to take in a few additional sites but we had to get back to Texas for school to start.

One Friday morning in August 2010 we loaded up the car and left for Texas.  It's a 20 hour drive and we changed Ben's meds in the car as we drove.

The week after getting home to Round Rock, TX we went down to Dell Children's Hospital to rekindle our relationships there with Dr. Fernandez and Dr. Prince. 

Ultimately, we finished out the 8 weeks of antibiotics (have to take out the PIC line at 6 to 8 weeks because risks of infection/clotting increase after that length of time) and Dr. Ferndandez started us on 6 months of oral antibiotics “to make sure we get rid of the infection this time.”

The first time I got the prescription filled the pharmacist said “I hope you have a baby elephant with an ear infection.  This is an extreme amount of antibiotics for a person to be taking.”  I told him it was for a 10 year old kid and after seeing the distressed look on his face I called Dr. Fernandez’ office on the way home from the pharmacy just to confirm that I had the right medicine and the right dose.  They did not like the pharmacist questioning their medication and told me to tell the pharmacist to call them if it had questions and not be worrying us, etc. 

Ben took the medicine (oral Bacitracin) every day, twice a day for 6 months until March 10^th 2011.  That was the last day.  After that day Ben was so excited to come home and throw away all the medicine and syringes we did not need.  

Dr. Fernandez told us Ben looked great and we wouldn't be seeing her again.  Ben could walk around without issue.  

We were all very happy.

5 days pass and then....Bout #3