Before I forget everything from today I think may be important, I decided to write it down and share with everyone. So to catch everyone up –
Brandon was diagnosed with severe osteoporosis. If you look at my last blog I give an overview of recommended treatment to get him back on track. Below is a good example of what normal bone health versus poor bone health looks like. This shows how fragile the bone is with osteoporosis.
We have seen 4 new physicians to develop a great treatment plan for Brandon. A new neurologist, a new orthopedist, a new endocrinologist and a new kind of physician – integrative medicine. From all of these visits with the new team we have put together a great plan to move seizure medications (Keppra to Briviact), add supplements to boost the seizure threshold level, a new drug to rebuild bone (forteo), new supplements to boost vitamin D and bone health, and future use of CBD oil (cannabis) to possibly lower seizure medication levels. In addition, we found out that we can no longer put off treatment for Brandon’s scoliosis requiring surgery on Brandon’s back as soon as possible.
But we were missing nutrition. Nutrition plays a large role in Brandon’s recovery. Today we met with the new nutritionist. She came highly recommended from several families. She was refreshing. Brandon has been drinking smoothies each morning. Up until this year we had been giving him boost. This year we have moved him to smoothies in the morning. After researching what base to use for the smoothies we decided to use “Vega One All in One Shake”. It is plant based and has an excellent mix of nutrients. We have been mixing it with soy because Brandon seems to react negatively to any milk based product. However, the nutritionist recommended moving to Flax Milk to help with absorption. In addition, she recommends we add addition ingredients for an overall boost to his nutrition. The good news – as long as it has chocolate, Brandon usually drinks it. I will post below the complete mix. I am not saying this is the smoothie for everyone, but it has been blessed as a general great mix by several physicians for Brandon.
As I suspected, she also is strongly suggesting that Brandon move to a Gluten free diet. This is for several reasons. First, it is excellent for seizure control and may help reduce the level of seizure medication. But second, Brandon has quite a few indications he may have Celiac’s Disease. The treatment for this is a gluten free diet. I don’t think there is any downside to moving to it, so this week we will start transitioning to a gluten free diet. The good news he can still have cheese. She also recommended adding a probiotic and daily vitamin D. We will be testing for several other deficiencies and may add Replesta which is recommended to treat vitamin D deficiency. I will let you all know after we do a few more tests. All good.
So how is the plan going?. We are 5 weeks in.
FORTEO - The Forteo injections are tougher on those giving the daily injections than probably on Brandon. He doesn’t seem to have any side effects at this point. He did have some muscle pain in the first week. Unitedhealthcare approved the drug, but the Brandon’s Medicare part D plan has not and we are almost out. So today I worked on trying to get the drug filled and moving forward approvals. This drug must come from a specialty pharmacy. I hope this goes smoothly and I don’t have to write another crazy blog on how frustrated I am getting approval for this drug. But I do understand that this drug is really the only drug that rebuilds bone. Hopefully the Part D plan will understand it as well. Let me say, I don’t love that Brandon has to take this serious medication, but I don’t want a major break that can’t be repaired and therefore leaving Brandon with long term pain.
SUPPLEMENTS - Brandon has been taking the supplements to raise the threshold for seizures and the weekly dose of 50,000 IU of vitamin D3. I have found the best way to give them to him is to mash them up and combine in some very yummy yogurt with a little honey. I decided not to add any more supplements until Brandon is fully moved to his new seizure medicine, Otherwise, I wont know which medicine or supplement is a problem. I will add the rest of the supplements in December. The picture is my Sunday night routine with a glass of wine, what seems like 100 capsules and preparing packets for the week.
BRIVIACT – That leads me to seizures. I was anticipating that the move to Keppra was going to be hard both for insurance approval and possible seizure activity. But the medicine was approved quickly and so far, the transition is going smoothly. Brandon was a little sleepy the first week, but he is getting more active as we move more to Briviact. I believe that between the supplements and the new medicine Brandon is much more alert, engaged and interactive. We will watch for the next month to see where he lands on the new medicine and any improvements in those awful side effects.
CBD Oil (Cannabis oil) – I have purchased the recommended CBD oil (Charlottes Web) for Brandon. But I decided not to start this until he is stable under the new seizure medicine (Briviact). I don’t want too many changes. Once we start the CBD oil we will modify the Briviact and lower the dose. He could also become unstable with this change. I didn’t want to do this until he has a good level using his new medicine. Lots of change sometimes is not good.
I think so far the whole plan is going very well. We won’t test Brandon again for vitamin D levels until next year. The doctors believe it will take at least 6 months to get his vitamin D level back to normal. It will take at least 2 years to build back bone health. I have no idea what we will be able to do to help Brandon with seizures, but I am willing to take a risk and I think Brandon is as well. So far so good. Just a little crazy trying to keep all the medications and supplements organized for now. More later.
Otherwise, gluten free diet. Foods Brandon can eat:
Brandon’s favorite foods - Evol mac and cheese; Amys gluten free enchiladas, VIA 313 Gluten free pizza, Austin Pizza (gluten free), trader joes has lots of gluten free pasta, corn tortillas instead of flour. Alvocados are fine.