This is a long awaited post and more than a month overdue!! Things got busy and so much has changed in the last few months including the fact that Abram started pre-school in an integrated classroom with a one-on-one aide, he started and finished a 12 week MNRI program and began another one and we celebrated a huge milestone of being FIVE HUNDRED DAYS seizure free!!
Election Day marked this much anticipated milestone but of even more importance is the fact that in addition to the year-and-a-half of seizure freedom, Abram's Neurologist agreed to let us wean the last and final doses of his benzodiazepine from his system.
As I write this today, my son is pharmaceutical-free and seizure-free on cannabis alone. Please know that we did NOT do this on our own. We are very lucky to have a Neurologist and a Pharmacist who helped us along the way knowing when it was time to wean, how much to wean and what to be worried about. Weaning a benzo can CAUSE seizures so we were VERY careful about how we weaned this highly addictive medication and have been doing so since May of 2015. It was very slow going - only weaning .25 of a mL at a time and holding for at least two weeks before going down on the next dose. We also held the last wean for 6 months to ensure that he had no ill effects from it. So, if you are a parent hoping to be pharmaceutical-free - please do not do so unless your Neurologist is on board and if you are given a weaning schedule - do not hurry it. We were told how to wean and then we doubled the time because our son is so sensitive to things that we didn't want to trigger seizures or cause him any harm.
We finally weaned the last tiny .25mL dose (just .25mg of clonazepam) within three weeks last month and the only issue we have seen is a little bit of fussiness and NO physical seizures! This is a HUGE DEAL to my family and I can only hope that as Abram's body adjusts to having no benzos that it continues to be this way for us. Our son had words before the benzo worsened his seizures and caused him to regress so we are hopeful that he will once again be able to say "mama" or "papa".
In the 18 months since we started cannabis oil, our life as we knew it changed for the better. Our son is able to BE a little boy and he can now run, jump, ride an adaptive trike, do an 8 piece puzzle, string beads, stack blocks, he's learned about 50 signs (as he is totally non-verbal) and he's beginning to make eye-contact and engage in play with his classmates at preschool. We couldn't be more thankful!!
However, the Medical Cannabidiol Law in Iowa, the law that keeps us safe and free from arrest by allowing families like mine to posses this oil, expires on July 1st. I am hopeful that the Iowa Legislature will do the right thing this session by passing a meaningful piece of cannabis legislation that allows for access to this plant in Iowa to Iowans with a Medical Advisory Board. If you or someone you know could benefit from medical cannabis, please write to your legislators, senators and congressman and ask them for their support.
Thanks for reading this!
Well friends, it's been a while since I've been able to update Abe's page! We have been crazy busy as usual with all the things Abram needs and I feel a bit guilty for not posting and celebrating all the big things (and scary things!) that have gone on and will be coming up this spring!
We just got back from yet another trip to Mayo Clinic in Rochester, MN. This appointment was basically a follow-up from last year when Abram had an abnormal sleep study and it was recommended then that we do a surgery to remove his tonsils and adenoids. My husband and I at that time decided to put it off for a year in hopes that feeding therapy would enable Abram to eat the required foods for the surgery but here we are a full year later and he still won't even touch soft, cold or squishy foods.
This Sleep Study came back showing that he wakes up 13 times an hour due to obstructive sleep apnea. His last MRI showed that his adenoids were quite large and we've known since birth that his air passageway is narrow so his Sleep Medicine Neurologist and the ENT at Mayo agreed that removing his tonsils and adenoids *might* help improve sleep for Abram. With his Neurological issues, this surgery is daunting for our family but we realize that Abram getting healthy sleep is vital to his dailing functioning so his dad and I are hopeful that we are making the right choice in going through with this surgery.
For typically developing children, this type of surgery is hard but is usually an outpatient surgery and the kiddos are allowed to go home the same day. For Abram, the surgery is of course a big deal for so many reasons including the fact that he has stopped breathing while under anesthesia before so he'll have to have a machine breathe for him while he is under anesthesia, with his neurological issues things can go wrong and I was worned that many of these kiddos "regress" after the surgery, his risk of bleeding is extremely high so not only will he be in the PICU after the surgery, our family is required (Yes, REQUIRED) to stay in Minnesota for 14 days to make sure that he doesn't bleed and so that we can be close to the Mayo ER incase something goes wrong - which is an expense my family wasn't expecting and a bit of an issue since my husband has minimal vacation days left and we've only got one car! We'll have to figure out the car situation later but the good news is - lots of people rent out their homes on Air BNB and we've found a nice house for 1/2 the price of a hotel so we'll be able to have our family stay with us to help us for a few days and we'll have a kitchen so we can cook!
Luckily, the surgery isn't scheduled until March so we've got time to figure out the car situation and just how my husband will get to MN and back while we have to stay there! That gives us time to work more on getting him to eat a few soft/squishy foods (we just re-started feeding therapy with a new therapist he enjoys) and hopefully all goes well! It was an unexpected bump in the road but I'm sure hopeful that it will only help and not harm him. Surgery in general makes me nervous but breathing is super important.... so... the tonsils and adenoids have gotta go!
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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