Healing of Rebekah's Immune System

In the winter of 2006, we spent a lot of time praying and caring for a very sick daughter who was hospitalized for IV's on a couple of occasions. It was during this same time period that her immune system was tested and we were strongly encouraged to start her on IVIG treatments to boost her immune system. Even though we had the doctors from the University of Utah, Pocatello Children's Clinic, and John's Hopkins pushing us to start these treatments, we just never felt right about it (please note that we have a lot of respect for all of our doctors and we do realize and understand that they do have our children's best interest in mind). We simply never could feel right about these treatments. Like most desperate parents, we tried everything - from nutrition boosting with a Vita-Mix, to high doses of vitamins, to foot zoning to essential oils. We really felt strongly that we would find a natural answer with fewer side effects and risks.

In 2007, we were introduced to Protandim (a natural supplement) that was invented by a world renowned scientist, Dr. Joe McCord. My friend had a boy, the same age as Benjamin, who had MD. In 2006, the MD Parent's Project paid for a study of Protandim in MD children. They were seeing some very positive results with the use of Protandim and she thought it might be helpful for our twins. I contacted Dr. McCord via e-mail and he indicated that he thought that there was strong rational that Protandim would provide positive results for our A-T children. He also indicated that to his knowledge Protandim had never been used in any A-T children. It is also important to note that Dr. McCord was already familiar with A-T as he had written a paper in 2002 about the rationale for the use of PARP inhibitors to reduce oxidative stress in A-T cells (we looked into using PARP inhibitors also, but where it was unknown what the side effects of turning off the PARP inhibitors would be we chose not to use them.) We were excited about Protandim and its few if any side effects, so we began giving it to our twins.

In March 2010, we returned to the John's Hopkins hospital in Baltimore, Maryland for our 3 year check-up. The immunologist there was very upset with us for not starting Bekah on the IVIG treatments. We explained to him that we actually thought that she was getting better and asked him to please test her again. We agreed that if her immune tests came back low again, we would once again consider the treatments. When we received our report back from the A-T clinic in April it stated: “Rebekah's immunologic findings are quite unusual...I do not believe that she needs replacement gamma globulin at this time...”

We recently contacted Dr. McCord to ask him if he believes that Protandim would have helped Bekah's immune system. He felt that it was a possibility as Protandim is scientifically proven to be a powerful NRF2 activator.

You can go to pubmed.gov (the website that the medical community uses to validate medical information) and search for the word Protandim. You can also search A-T and oxidative stress - there are about 200 studies out about how A-T is effected by oxidative stress which is significantly lowered by Protandim. Protandim has been clinically proven to reduce oxidative stress in 100% of the people 100% of the time by 40-70%. 

Ben & Bekah's Eye Appointment

Today I took Ben and Bekah to the eye doctor in Pocatello.  Ben especially has been having some symptoms of eye problems.  He appears to have a hard time seeing the computer screen at times and some of the words in books at times.  I know that this can be a symptom of A-T as they start to lose control of their eye muscles.  The doctor said that Ben's eyes looked great as far as vision, but he could tell that Ben was struggling to be able to focus on what he was looking at and would move his head to try and compensate for that struggle.  Of coarse I was hoping that it was just a vision problem, but we will just have to make some accommodations as needed.  Bekah, on the other hand, is still doing well with both her vision and ability to control her eye muscles.

Rachel's AFP Levels Come Back High

Today was an interesting day.  I was driving Dallin and Spencer to Pocatello for a roller skating activity with their home-school group when I had the thought to call the Pocatello Children's Clinic and get Rachel's ears checked.  She had been showing signs of an ear infection and it seemed like a perfect opportunity to have her checked out while the boys were at their activity.

I called the clinic and asked if there was any way that they could see her in the next hour or two. They told me that she would not be able to get in with her regular doctor as he was out of the office for the day. I told them that I would be willing to visit with any of the doctors, so I was able to get an appointment.

When I was called back for Rachel's check-up, I was surprised to pass Rachel's regular pedicatrician in the hallway. We both gave each other a surprised look, but I didn't think much about it until he came walking into the room 5 minutes later. He said that I was one of the most inspired ladies that he knew, because he had been wanting to talk to me in person, but had been unable to get in touch with me. He went on to say that he had just stepped into the office for a few minutes and when I had passed him in the hall he had just been looking at Rachel's file.

He informed me that all of the blood tests that they had run had come back normal, except for her AFP levels that were still reading higher than normal. This is not as conclusive of a test for A-T until after age two, but that test, coupled with all of the other A-T symptoms that Rachel had been displaying, and the fact that she has two siblings with A-T, was enough for the doctor to tell me that I really should be preparing for the worst.

I became very emotional and teary-eyed, because I had thought we were out of the woods since I had not heard back from him. But at the same time, I had a feeling of peace come into my heart that everything was going to be okay. I also realized that the Lord had been very merciful with me in this situation, considering that the doctor had not been able to get in contact with me to make an appointment, so I didn't have to stew about the matter for days in anticipation of a bad-news appointment.  I also realized the tender mercies of the Lord because when I left the doctor's office, I was going back to the company of some of my most supportive friends - the other moms in the home-school group, so I would have someone to share my burden with. Even though this was a hard news to receive, I was so grateful to see the Lord's hand in my life once again.

My Family Today

Family Picture Fall 2010

Back Row: Larry Middle Row: Rebekah, Jill, Ben Enoch, & Dallin

Front Row: Spencer holding Rachel

Ben, Bekah, & Rachel are my three children who show Ataxia-Telangiectasia (A-T) symptoms. Ben & Bekah have a confirmed diagnosis and we do not have a confirmed diagnosis on Rachel, but she is showing all of the signs.

Rachel's Dr. Visit Regarding A-T Symptoms

I took Rachel to the Pocatello Children's Clinic today because of concerns that I have about her. She has started to wobble quite a bit, she doesn't seem to be gaining weight, tires quickly, and she has been falling off of things more than I believe is normal. Of course I am paranoid about her having A-T and  I need to put the issue to rest. The doctor told me that I had reason to be concerned, but I didn't need to get too worried until we had more conclusive evidence. Her lack of weight gain was a concern however, since she was 16 months old and only weighing in at 17 lbs. He then took an alpha-fetoprotein (AFP) level test to see if hers was still coming in high. He told me that no news was good news, so if I didn't hear from him in a few days to assume that everything was normal.