My friend Christine writes this week’s post about her six year old son with brain injuries that makes for extreme challenges raising him. Read their difficult story, see her amazing improvement data, and sing this information out to everyone you know!!
Four and a half years ago my husband and I adopted two little boys. They were 23 months and 3 years old when they moved in with us permanently. Our youngest child, Caleb, received a head injury when he was only four months old. You may not be familiar with traumatic brain injuries but they are devastating not just to the injured but to everyone around them.
Caleb’s TBI (Traumatic Brain Injury) has caused many challenges. The initial injury caused bleeding, swelling, seizures, and cerebral palsy on his right side. His official diagnoses are Traumatic Brain Injury, Cortical Visual Impairment, Severe Development Delay. Among Caleb’s difficulties he can be a very frustrated little boy. My son has a severe vision impairment which makes navigating difficult. He is also sensory seeker/avoider which means that some things scare him or he has an excessive need to feel/hear/taste to learn about his environment. Communication is also a great challenge. From a parenting side of things, we never know quite what to expect or how to help Caleb. We have 5 children whose ages are 18, 15, 8, 7 and 6. We are no strangers to children, but Caleb is different.
This all sounds very medical, so let me put it in more understandable terms. Caleb’s brain is not normal. He doesn’t think normal or act normal. His eyes are “googly”. They do not work together. His depth perception is very poor which means he has difficulty grabbing things and with spatial concepts. I believe that he can only see details of objects if they are 1 to 3 inches from his face. He also cannot see much of anything past about 6 feet unless it is moving.
Undiagnosed, I believe he also has speech Apraxia. He cannot lift his tongue up or stick it out of his mouth. The result is that his vocabulary is extremely limited as far as he can verbalize. He has great trouble putting sounds together which makes words very difficult. His understanding, however, is quite good. We have a speech device which helps some, but his visual challenges make using the device difficult. Caleb has his own language that only people who spend a great deal of time with him can understand. Not being able to communicate must be very frustrating for someone who understands. He cries and screams often because of his speech challenges.
What comes easily to other children, we have had to teach Caleb with much more intervention. Walking is an example of that. He didn’t learn how to walk until he was two. I can’t even begin to tell you how many hours we helped him with walking. Initially, we would hold his hands and encourage him to walk. He would scream and hold both of his legs off the ground. Two weeks after he started living us permanently he finally figured it out and what a joyous moment it was! He walked around the house (with his hands still in the air) laughing and laughing and laughing. We were fortunate enough to capture that moment on video. The video is a treasure to help us remember to persevere even in the toughest moments.
With all of this said, I haven’t even scratched the surface on our frustrations as parents. Caleb makes life interesting, difficult, challenging and rewarding. I usually don’t bring him in public if I can help it. He gets aggravated by people, noises, and movements which results in crying, screaming, yelling, or hitting things. There is something called a CVI meltdown which is way more intense than a normal child’s tantrum. It is not motivated by a child not getting what they want but by sensory issues (sounds, sights, touch). We never know what to expect or what will set him off. There are some things that he is terrified of: the leaves on the ground in the fall, seeds in the air floating, bubbles, Chinese checkers, things that move unpredictably. It is not a normal fear but a deathly fear that consists of running and screaming like the world has ended.”
A few weeks ago, I read in Facebook group for parents of kids with Cortical Visual Impairment about CBD oil. I was very curious about what it was and could it help Caleb? The very next day a friend mentioned to me that she was taking CBD for chronic migraines, so I stared researching. What I found was that CBD oil is from a hybrid hemp (marijuana) plant. I do not support recreational drugs, so I was concerned. This hybrid does not have the negative side effects (getting high, food cravings) and has been ruled by the Federal government as a food supplement that is perfectly safe to take. I did lots of reading on the internet and watched YouTube videos with testimonies of different people. CBD oil is said to help with brain injuries, cerebral palsy, autism, and anxiety among other things. Caleb has all that I mentioned but he is not diagnosed autism, though autistic like behaviors are often associated with Cortical Visual Impairment.
My husband and I decided to try the CBD oil for Caleb. I want to share what we have done and found with its use because there isn’t much information available about CBD oil and children. We started Caleb on 1 drop and increased 2 drops per day and holding the dose steady when we have reached a plateau of his behaviors in comparison to dose size. The drops are given three times per day to spread out the effects. CBD oil differs in concentration and form, so dosing depends on the individual product. We started small and worked our way up.
I wanted to know for sure: is it working? I have been tracking his undesirable behaviors which fall in to these categories: yelling (not provoked by surroundings), whining and crying (because he doesn’t get his way), CVI meltdown (different from whining and crying), body impact (this is hitting, slamming, ramming), bathroom behaviors (slamming toilet seat, hitting toilet paper, crying), and having bathroom accidents.
|yelling||whining crying||cvi meltdown||body impact||bathroom behaviors||bathroom accident|
|week 1 totals||142||362||6||153||2||7|
|Average per day week 1||20.3||51.7||0.9||21.9||0.3||1.0|
|week 2 totals||69||181||1||39||0||4|
|Average per day week 2||11.5||30.2||0.2||6.5||0.0||0.7|
|week 1-week 2||73||181||5||114||2||3|
What is my conclusion? I know why I get a little cranky sometimes! There were 723 undesirable behaviors in the first week dropping dramatically to 442 bad behaviors in the second week. I think that one of the most meaningful changes was the drop in what I call “body impact” behaviors. These are things like slamming doors, breaking toys, hitting furniture, or anything to get a forceful impact on his body. It is disturbing when you can’t walk past an open or closed door without Caleb messing with it, or walk by a table and chairs without him ramming the chair into the table.
total behaviors per week
|103||average behaviors per day|
|442||total behaviors per week|
|73||average behaviors per day|
There have been other changes that can’t really be tracked as easily. It seems as if Caleb’s appetite has been positively impacted. He used to gobble his food down so fast not even tasting, but now he is eating slower in a more reasonable manner. Listening and obeying seems to have improved as well. He has more tendency to obey right away. Cognitive (thinking) ability seems also to be improving because he could sort colored blocks which is a task we have been working on for at least a year and never done successfully. Another benefit is a calmer attitude especially around lots of people and noise.
Are we going to continue CBD oil for Caleb? Absolutely! I can’t wait to see what the future holds for my little guy. The dose will be hard to determine because there just isn’t much information available especially about children, but we will closely monitor the behaviors in respect to how much oil he is taking. I would not be so bold as to suggest dosing or is it right for other children. Careful consideration, research and caution is advised. As a parent who wants the best and most meaningful life for my child I am greatly encouraged with what CBD oil has to offer my child.
Just imagine if CBD oil helped this little boy and family how it may help another family with other types of mind challenges like depression, anxiety, seizures, migraines, epilepsy, inflammatory diseases, dimentia, Alzheimer’s, or more.
Buy it online at Target. Charlotte’s Web brand from Stanley Brothers. $75 for 1 oz. Mint chocolate is Caleb’s favorite.
Sing this out to everyone! Share it all around. Everyone knows a person or family or themselves that has issues of the brain in some degree or another. Maybe CBD oil could help them too in some small way or like Caleb, a HUGE way.