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Help me figure out how to deal with ds Tourette's


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Background: I homeschooled my ds from K-2 then put him in brick and mortar starting in third grade. I had some medical issues and he wanted to try. At the time he had one motor tic, which he had for years. During third grade his tics exploded and some behavioral problems developed as the year went on. He has since been diagnosed with Tourette's, HFA, OCD, anxiety, and sensory issues.

 

I pulled him out of school just before Christmas, which was half way through fourth grade. He was constantly needing to leave his classroom for tics. He now has severe Tourette's Syndrome. He has simple tics, complex tics, echoalia, coprolalia (yes he swears) and even coprolgraphia (he writes bad words on his papers). The school tried valiantly to accomadate him but his tics were just so bad.

 

We began homeschooling last week. Most of the days have been successful, but he requires a lot of breaks. Yesterday was so bad and we did school from 9 am to 8 pm because he just needed so many breaks. Today his tics were so bad immediately when we started school that we took a break before we even started.

 

My questions are for anyone with experience schooling a Tourette's kid or anyone with advice to share. Have you found any strategy that helps? Do you just call it a day when things are that bad? My concerns are not providing him the best education he can get vs not meeting his medical needs. He is fortunate to not have any of the learning disabilities so common with Tourette kids. His IQ was actually very high except for his processing speed and in one of the language categories.

 

We live in NY so that means I have to create an education plan and have it approved by the superintendent. I also have to explain if we are unable to complete 80% of what is on that plan.

He has an active IEP which takes into account his tics and processing speed issue. But his academic expectations are the same as other kids because he has no learning issues. I want to do my best for him but I'm not always sure what the right thing to do is. What has worked for you?

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I don't have a lot of advice, except to say that we have found that tics increase with stress.  What would happen if you chose a very child-led, interest-led approach.  Perhaps lots of library books, snuggling to read them together if that is something your ds enjoys, lego building while listening to audio books, playing games that have a math component, going on field trips together or with close friends, doing art projects, listening to music, etc.?  A life where your ds can explore things he's interested in, with lots of quiet, hyper-focus time and lots of time to run and play?  

As to the paperwork, I have found that if I keep my focus on doing what's best for the child, the paperwork can be figured out.

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We did rule out PANDAS with a strep test. His neurologist doesn't believe in PANDAS, says it has not been proven yet but at least he was tested. After learning more about Tourette's after the diagnosis, I realized he had more tics than we recognized. Hindsight and all.

 

At public school, he was excused from work due to tics. I was allowed to scribe for him at home for homework (he has a really bad tic in both hands sometimes) and I could use my discretion about excusing him from work due to tics. Now that his education is all on me, I feel more pressure to make sure he's learning enough. I guess I am struggling with finding the right balance for him. He's so smart, I don't want to deprive him of an education.

 

Thanks for responding. I feel the weight of his special needs and I look forward to the day when I have more confidence in my ability to both parent and educate him.

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Autism here, similar age, also high IQ, though not the tics. Agree with the others to decrease stress, increase predictability. Even though he has an IEP, do you have to implement it? I know NY is nasty, sorry. Honestly, I bring in help. For us, bringing in ABA, fresh blood, people who are just fresh in the morning with a smile and not distracted by anything else in the moment, really helps. My ds needs those breaks too.  The need for them decreases as the stress decreases. I really don't think I'd push through to 8pm like that. You're going to have to whittle it down to what's reasonable.

 

It's hogwash to say his IEP is correct. If he wasn't able to function in that school, then his IEP isn't correct. Roll with me here. They have the LEGAL RESPONSIBILITY to educate the dc. So if having the IEP as it is written currently is putting you in some kind of mental bind, then re-enroll him, tell THEM TO FIX THE IEP, then work from that. I'm not saying you should re-enroll him or that it's what is best. I'm saying the reality is the next step is a non-mainstreamed placement. Or an aide. Or something really different they weren't offering you. And once your IEP is realistic and the placement and the whole set-up acknowledges what was really happening, then you won't be trying to live up to at home standards they WOULD NOT HAVE BEEN ACHIEVING at the school either.

 

Like say they changed his placement. Do you REALLY think they'd accomplish everything on that list you have that you think you must do? Nope. They'd work on behavior and motivation and anxiety and try to squeeze in some math and LA. The balance would totally shift. So I want to ask why YOU are feeling you have to implement that list, when they would have to change it and change the placement if he were in school???  My ds has an IEP, and it ain't pretty, and it ain't a mainstreamed, oh so sweet placement. I have no delusions about what would be axed and what he wouldn't get to do and what it wold really be like if he were put into the ps to implement the IEP. 

 

So when my workers come, they actually record how many breaks, how long the breaks have to be, how many delay/escape behaviors, etc. etc. That's your ABA. Fight for some ABA. I'd be toast, crispy burnt up black and thrown in the trash, without my ABA team. What you're really saying is you need ABA. And, unfortunately, to get things toned down it's going to take a while.

 

To me, my best cover my butt is bringing in professionals. No one questions me now that I have an ABA team. They don't say you suck or you're not doing enough. I have no clue what NY would say, but I'm just saying there's probably some path there.

 

Did he start or drop any meds during that time? I've heard of some kids having tics exacerbated by ADHD meds. If he's not on the meds you could, conversely, look into meds. ADHD isn't on your list. That's kind of interesting. Definitely needs some ABA or behavioral intervention to work on anxiety and calming skills and strategies. There's a LOT they can do, if you can get funding to make it happen.

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If you can bring in a BCBA, one of the things they can help you do is create programs that hit your academic areas but are within reach. Our behaviorist specializes in homeschooling and has experience with autism in homeschooling, so she's really good with it. But they'll help you find things that diffuse tensions, that increase predictability, that are HIGHLY MOTIVATING, that increase interaction and work on behavioral goals, while quietly hitting your academic goals.

 

For instance, with my ds we used Highlights hidden picture books. That's reading! He read the words, he interacted, he found the pictures. He circled the pictures! That's fine motor work. Like seriously, it was a $6 workbook from Walmart, something he really, really, really liked, but it was school for a chunk of time for us. It took us many months of that kind of stuff before we could move on to more traditional school work. If a dc is not in green zone (Zones of Regulation), not stable, he's not in ready to learn. If he's not in ready to learn, it's not attainable to say you're going to force it behaviorally. We had to build habits of calmness, interaction, etc. We had to use things in non-traditional ways.

 

It's ok to take the breaks and use them as motivators. You want your most awesome break to be last, and you really want an end time for this. You want to end on a good foot. Nobody is ending on a good foot at 8pm at night! Like just tell him hey we'll start when you're ready, but we're only doing 3 hours, and if you take all your breaks nicely and work expeditiously, our last break will be 10 minutes early and will be X awesome thing. Could be a pillow fight or hot cocoa or a trip someplace or air hockey or foam sword fighing or anything, kwim?

 

On your breaks, are they breaks on his terms (run off) or are they pre-emptive breaks using calming strategies? The team worked really hard to find effective calming strategies with ds, things that they could do for breaks that would get him back to that place of calm after the hard work of interacting together. For him, it's a really simple thing like tossing beanie babies back and forth. I kid you not. Super simple, very calming, easy to implement.

 

Where do you homeschool? We had to set up an office with a door. I know some people are like oh that's horrible. Well fine, but for my ds the closed space and predictability is very calming! We took a bedroom and divided it into spaces with furniture. That way he can do table work in one space, read in a nook of crates and pillows in another, stand at a whiteboard with some open space for toss games, AND have a floor rug to sit with a bin of toys. Four spaces, one typically sized bedroom. I made it all with inexpensive stuff you'd find at Walmart. I have 4 whiteboards up (yeah, I'm a little excessive, lol), etc. My ds finds nooks of space very calming. Think through what your ds finds calming and create a space that harnesses that.

 

Fwiw, I was extremely careful about color in the space. It's largely monochromatic and all blue. So the walls are blue, curtains blue, cushions blue, etc. His area rugs are cream and the tile is cream. But just very, very calm. He gets in there and he totally calms down, no more screaming. And he's used to what the space is for and what he does there. Now today we did some spelling dictation out in the play area in the basement. He played with playmobil while he spelled words aloud, and that worked. But that's a fledgling skill for us. We had to do a lot with just calming things down, lessening escape behaviors, etc.  We've been doing all his work in his office diligently for months and months now. We started that in May of 2016 I think. Hard to believe in May it will have been a year, wow!

 

It doesn't feel good to be out of control. As we've gotten things calmed down and more predictable, my ds' self-confidence and self-concept has improved. I don't think it's a step to skip. These basics really matter. The more advanced stuff like doing history or doing grammar or whatever really *flow out* of the foundation of the calm, ready to learn state.

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OhElizabeth - wow! Thank you for taking such time to address some of my concerns. You have so much wisdom and experience in those posts.

 

Yesterday took so long because we had to go to his school for services. Twice a week we go for a social group for ASD kids program. Also, ds has OCD about taking videos of school buses and he just had to get all the buses yesterday. That takes over two hours of in and out of the house. His dad came home and took him to Lowe's for a while too so all that added to the breaks made us take forever to do school. Most days should not be so long!

 

We school in a spare bedroom that has been converted to a school room. We love it in there! He loves to feel cozy and snug so we did that. He sometimes has a rolling tic so we provided some space for that too. I like your comment about color. It is a yellow cream room with burgundy drapes. He has mentioned wanting to make it darker and perhaps I should listen to him.

 

I have no idea how to even ask to receive ABA services. I once tried to look online and there weren't any listed within a two hour drive - I'm rural NY. How do I find someone? Does insurance pay for it?

 

About the IEP...He was still mainstream at school when I realized we needed to bring him home. We discussed alternative options but none seemed right for him. He has echoalia and echopraxia. He will literally copy anything said or any behavior he sees. Putting him with other children with physical disabilities or behavior problems would likely result in him copying them, perhaps even making others feel bad. So there wasn't anyplace better for him than home and I'm confidant in that decision at least. His IEP basically made allowances for bathroom breaks (anxiety makes him go frequently), ability to use a keyboard or have me scribe, extra time for tests, ASD services and physical therapy. Nothing regarding academics except he can be excused from work when tics are severe. And you are totally correct that the work wasn't getting done at school. He was practically learning nothing, another reason I brought him home. He deserves a good education.

 

You've got me thinking and I appreciate it. Hopefully we will settle in here in a few weeks. It's so different now with all the tics then when he was younger.

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I really don't know about getting services in other places. Here in Ohio, because we have the disability scholarships, we have lists of providers that have registered with the program. So I can search the directory by county, find providers in the category I'm looking for, allocate scholarship money to them, and boom. But I think in general most people would use their insurance to pay for it. My insurance has a high deductible, so we'd have to pay out of pocket. Really though, the benefits are so strong, if you have to pay, it would be worth it.

 

There are credentials for behaviorists, so a certified is called a BCBA. There are people who were in it before BCBA (like ours) who didn't get BCBA, but in general you're looking for BCBA. The workers under BCBA are RBT. Our workers are not RBT because our behaviorist is not BCBA. Sometimes your insurance will only pay BCBA/RBT. 

 

If you were able to get in-home services, maybe you could drop the social skills group. Or maybe it's really awesome? I hear you on the time lost going to things. It's always a quandry, because you're balancing the worth of the thing and the time lost and *transitions* to go to and from the thing. And sometimes we do things a while and then go ok, the effect on our overall plan just isn't worth it. I really highly value when providers will come to my home, because it eliminates transitions. It sounds like you lost 2-4 hours with transitions, kwim? And for my ds, once he's out, it's REALLY hard to get him to transition back. So basically, things need to be done before we go out.

 

I think if you could get funding and get a BCBA, it would help you get more in-home, give you more strategies, and get him some one-on-one instruction to work on his behaviors. And a lot of it is imitating them. So if the behaviorist handles something a certain way, I try to use her wording or her techniques, kwim? 

 

Even if you searched for BCBA's using the BCBA directory in the past, try again. I just did it again, and someone got certified just in the last couple months that I didn't know about. And maybe a newbie is fine, maybe not. But really, a newbie BCBA isn't newbie/green. That certification means they have a lot under their belt on the way to getting there! 

 

There are some terms that you're using a certain way that aren't maybe how I would have understood them. I could be wrong. I'm just thinking you'd probably get a lot of help and refinement and clarity and perspective (more words, more strategies, more helps with behavior) if you could get some in-home help. 

 

And yes, I would listen to him on the room. Maybe I'll take pics of our room, but it doesn't matter. That high contrast sounds really jarring to work in. Might have been energizing for a bedroom, but it might not be what you want for a peaceful office/work space. Do you have any autism charter schools near you? Because of the way Ohio funds things, we actually have LOTS of options within a 45 minute drive of me. So I've had the chance to go in, tour, see the rooms. That's what I was trying to imitate. They have open spaces, with things shoved to the walls. When people are having behaviors, you need some space, kwim? And very calming. The lights are low, always like. LIke adequate, but not blaring. And they'll screen/curtain the windows. I put up heavy, insulated drapes (a shade darker than the walls but same color) and the workers keep them drawn. We're just trying to keep it very calm, very peaceful. 

 

I have to make a phone call, but we can talk more. It's challenging. Our tendency is to do things *to* our dc, but we also need to do them *with* our dc and interact and listen. 

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DS12 has some tics and has an upcoming appointment to determine if he might have Tourettes. Dealing with tics is a new thing for us, so I don't have much experience to offer. He does have multiple challenges and an IEP, but his IEP goals are in academic (several LDs) and social areas.

 

I think if you can separate out your issues into categories, it might help you to address them.

 

1) The tics. Is he getting therapy? If not, it seems a priority to get that set up. Hopefully a professional can give you tips to manage dealing with the tics and provide documentation for any additional services or help that you might want to add to his education plan. 

 

2) The IEP. Now that he is homeschooled, will the IEP still be active, or is this homeschool plan that you submit to the superintendent something different? If you will be continuing to update the IEP annually, you are now his teacher. You should be able to bring proof of his academic needs to the next meeting. Think about what his classroom teachers contributed last year to make sure that you keep records similar to what the school will expect to see.

 

3) Academic goals. So he doesn't have any diagnosed learning disabilities. But his tics DO interfere with his ability to advance in his academics. His IEP and/or education plan should take this into consideration and set reasonable academic goals. I don't see how it is appropriate for the school to say that he can be excused from academics if his tics are interfering and yet still expect him to progress at the same rate as the other students. My kids' IEPs include academic goals for areas of weakness, even if they do not have an official SLD in that area. IEPs can consider "patterns of strengths and weaknesses" and should address them. So even though he has no SLDs, it sounds like he should have some academic issues addressed in his IEP.

 

To get ideas about what you think should be amended in his IEP, you can do some research online to see what other people have in their IEPs. I did this, and it was really helpful.

 

***Hopefully with homeschooling his academic needs will be addressed more effectively, but his education plan should reflect that fact that he may not progress as quickly as his peers. Because the superintendent holds you accountable somehow, you need to make sure that the goals that you set are ones that you can meet. For this first year of homeschooling, I would be very cautious about how much you expect him to achieve. If he goes above and beyond, excellent!! But don't EXPECT that. Expect that he will struggle, because that is the actuality that you are experiencing. ***

 

Do you write this education plan yourself? Be sure to look at the minimum legal requirements for documentation and ONLY PROVIDE THE MINIMUM. For example, if you have to list what curriculum you will do for math, and you are the kind of person who supplements and adds all sorts of additional materials, do not include those additional things on your plan. Just give them the BASICS that they LEGALLY need.

 

4) The autism. OhElizabeth's advice about behaviorists addresses this area.

 

5) Social. This overlaps with the autism and the tics areas. But it's worth it's own category, because social deficits impact employability. I assume with autism he has social deficits, and it is important to try to untangle those from the tics. Here is what I do know about Tourette's so far...The teen years are often the time when the individual is most effected, and the tics become more manageable in later years for most people. However, the social deficits that are connected to autism are NOT likely to be outgrown or diminish over time on their own. Actually, social deficits tend to become a greater problem with age. I would guess that someone needs to be working specifically on social goals with him. In our case, DS gets social skills help from a speech therapist, but I think a behaviorist would work on similar things.

 

Question -- does he have social goals in his IEP? Did they test his pragmatics? It would have been a speech therapist with the school who would test pragmatics and social skills. It's not uncommon for the school to skip this evaluation if the parent does not make sure that they do it. It is easy for parents to miss, because you have to social falls under the category of SPEECH for the IEP, and if the child does not have a speech issue, parents may not know to ask for a SLP to do an evaluation.

 

If he doesn't currently have social goals in his IEP, it seems an obvious thing that should be added. Whoever works with him on social skills, though, needs to be very aware of how to deal with the verbal tics. Someone without experience with Tourette's is going to have a hard time working with him.

 

6) Getting work done at home. I know this can be really challenging. Generally, our kids respond well to LOTS of structure. Probably more than is naturally comfortable for you. Because you have to leave the home for therapy at the school a couple of times a week, you are going to have to work around that. I would recommend making a schedule for your week that provides for enough schoolwork time and regular scheduled break times. I know OhElizabeth has really worked to have her son's break times be something that provides the sensory input he needs but still be structured. This takes an incredible amount of effort from the parent, which is why it can be helpful to have help come to your home if you can arrange that somehow.

 

It's nice that your son got to do an outing with his dad, but you are probably going to have to either limit things like that that interfere with academic time OR make sure that they are scheduled into your weekly plan. For some kids, that kind of thing can be a GOOD break, but for others it can be really hard to get back on track with schoolwork when something fun interrupts the flow of the day. I think you will just need to plan very carefully what will be best.

 

:grouphug:

 

 

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Also, I think it is awesome that your school is going to keep providing some services to him, even though you are homeschooling. This may be good in that it can give him a sense of continuity and allow him to keep working with the people that he already knows.

 

BUT just because the school is providing some services does not mean that those are the BEST services for him. Schools do not legally have to provide the BEST services. And the school's goals are not going to be comprehensive; they will only be whatever they think he needs to be able to GET BY in SCHOOL.

 

Now that you are homeschooling, you can go BEYOND what the school is willing to provide by looking at getting private help, if you are not already doing so. At minimum, I think you should have a private provider helping you with the Tourette's issues, because the school is not going to be well-versed in addressing that whole complicated aspect.

 

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Just to follow up with Story's wise advice. On the outings, I like to have people do that with ds. I have dh and sometimes my SIL. I find there's a flow. Like, in general, I wouldn't let it be just an oh whenever kind of thing. That is really disruptive! In the afternoons, after he finishes his work, after or between other appts. Use the outings as a motivator, kwim? Like don't just have it be automatic. Make demands. (I want you to be able to go on this outing, but I need you to get done these two things first.) Using motivators is an ABA thing, and it's really essential.

 

You have a weekly calendar? Seeing the plan, reviewing the plan at the start of the week, these are good strategies for reducing stress. Your social thinking materials from Social Thinking.com will help you teach (or help the behaviorist teach) about group plan, people having thoughts, etc. Group plan is a concept missing, missing, missing from our kids. So when we help them SEE the plan and get on board with the plan, we reduce stress. I use a 7 day whiteboard with my ds. It's around $10 at walmart. Then he has another whiteboard that is bigger with the plan for the day written out, every step, including breaks. That's why we have so many whiteboards in our office, lol. One for each worker and some for general instruction and making notes. 

 

Some of this is protection of your school time that you'd have to do anyway. And it's challenging, because you want to nurture those relationships! You can, but make some demands, weave them in the flow. You can even do the inverse, and ask your dh to take him on outings when YOU need a break. You may find that tends to happen on certain days, so it becomes more routine.

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I have two with Tourette's - high IQ but with learning disabilities. 

 

First of all, you are dealing with a lot right now. As much as you are able, I would try to change your mindset to first work on learning to live with/deal with/control the various issues. We've got a good Tourette's doctor and did a bunch of behavioral therapy as well. Working on this takes TIME and it takes time away from school. Pare down as much of school as you can so that you prioritized the minimum and try to include some low-stress learning (videos, reading, listening to books, etc.). Spending all day working on issues and school isn't healthy either. You and he need some down time to just have fun and be a kid.

 

Don't do school from 9a-8pm - it doesn't do anyone any good. He's a fourth grader. Most subjects he could do nothing in and be fine for next year. Math is incremental and you can't just skip it so I'd definitely keep working on math. English skills are important, but there is no one thing that has to be taught at a specific age. So you don't do any spelling or grammar - pick off where you left off in the fall. Oh yeah - it needs to be in your plan, so maybe say you are going to work on spelling and grammar by doing copywork and discuss the grammar. On days you need to scribe, you can still discuss the grammar and even do a few spelling words orally. Science and history can completely be snuggle on the couch and read and discuss books. Be creative and don't think you have to "do school" like in public school. A bright kid will keep learning no matter what you put in front of him and if you take some of the stress off school, you will have time and energy to work on everything else.

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Popsicle, something that you could look into, now or in the future?

Is a trial of 'medical cannabis'.

As numerous trials over the past 10 years, have shown it to be effective with Tourette's.

In reducing the Tics, the OCD and the Anxiety.

 

But an important recent change, is methods to extract the separate active elements have been developed.

So that the element of THC can be removed, which causes one to get 'high'.

Where the element that helps with Tourette's, is CBD (Cannabidiol).

Which doesn't cause a 'high', and also has no other side effects.

 

CBD, has also been shown to be effective in treating 'Chronic Seizures', ' Chronic Muscle Spasms' and 'Peripheral Nerve Pain'.

How it works, is related to to how our 'nerves sends signals'. 

Which is a 2-way process.

A signal is sent from a neuron.

When the neuron at the other end recieves it?

It sends a signal back.

Which has what is termed as an 'inhibitory effect'.

That basically, 'turns off the signal'.

 

But when their is a 'problem with this return signal'?

The neuron isn't switched off, and will keep repeatedly sending the signal.

 

Though the key factor in relation to Tourette's, is the lack of the ability at a 'neuron level'.

To inhibit responses.  

But importantly, it has been identified that our neurons have. What are termed as CBD Receptors.

That when supplied with CBD (Cannabidiol), will enable this 'inhibition' to occur.

Which will stop seizures, muscle spasms and tics from happening.

 

So that with Tourette's, it gives one the ability to inhibit and regulate their actions.

 

Where fortunately, CBD doesn't have any 'side effects'.

Also as a naturally occurring substance, it can't be patented by any drug company.

So that it will never cost more than a vitamin tablet.

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OhE, rather than manufactured, it is extracted.  Where the approval process, requires a 'Certificate of Analysis'. Which is a full analysis of all elements in it, and the precise amounts.

This is important, as research has shown that CBD needs to be used at a precise dosage. As too much, will have the opposite effect.  

Also their needs to be a guarantee, that their is no THC in it, which causes the 'high'. 

 

This is a major problem, with people using the 'plant'. As the amount of CBD, will constantly vary.  Also the plant matter, contains THC, and will cause a high.  Which really negates its 'medical use'.  As it would impair the function of adults. Also it's use with children would be questionable, if it makes them 'high'.

 

With CBD at a controlled dosage, it has been shown to have no side effects. 

CBD can be used to control 'Seizures', which is in stark contrast, to medications that are currently used to control seizures.  Which have serious side effects.

It's use for 'pain relief', is also crucial, in being able to avoid the serious side effects of pain relief medications.

 

One thing that I speculate on, is that it may be helpful with the 'H' Hyperactive part of ADHD ?

 

Though CBD presents a problem for 'drug companies' ? As they can't patent it, and control its distribution and price.

I'll attach a link to one company that is producing it.   Where their current price is $99 for 60 capsules, or less than $2 a day.

 

https://elixinol.com/product/cbd-capsules/

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Thanks for explaining that, geodob. What is the reason the CBD would help with ADHD? 

 

We have a history, in my family, of blackouts as people age, and one neurologist told one of the family members it was due to their brain constantly being *on*. They put that family member on Depakote, a seizure medication, and it stopped the blackouts. Interestingly, other family members have been diagnosed with other things and put on Depakote also. Like that whole idea of a seizure medication that is actually affecting more in the brain than we realize is interesting to me. And nobody has ever really explained that family history or put a name to it. They're pretty weird. Like one time, my grandma was driving and her body kept going and she was just not there. They found her parked in another town, out.

 

Depakote has side effects, so it's pretty nasty stuff to need to be on. :(

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