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.
