No, we still don't do sugar! Happy Halloween

Jack was on the ketogenic diet for epilepsy for 3 years, starting when he was 14 months old.  People hear keto and say "oh, I do that" and let me tell you, NO YOU DON'T!  What you do is Atkins or low carb.  Which is great and a good way to cut back on carbs and processed foods (if you do it the way to cut back on processed foods).  But until you weight every speck of food on a gram scale to a 10th of a gram, have to be hospitalized to start the diet, have blood work every 3 months to monitor, check ketones to make sure you aren't acidic, and be closely monitored by a dietiatian, you aren't really doing what is known as the ketogenic diet.

Okay, I'm off my soap box about that.

But while he was on that we went to a play date that was also a fundraiser for a friend of ours.  It was quite large, with at least 25 other mom's and their babies through preschool aged kids.  I was doing my best to keep up with Jack, but it was super crowded and I was having trouble not stepping on small people.  This was after he was walking but pre-surgery.  He went around a corner and I was quickly following, but another toddler followed by her mom was coming the opposite direction so I let them through.  That 30 seconds or so was enough time.  Another mom gave him a raisin.  I dug it out of his mouth and as I did he went limp in my arms and then stiff and started to seize.  I scooped him up and did my best to scramble for an open space.  I get slightly claustrophobic, plus I didn't know anyone there and everyone was completely ignoring me.  I was screaming his name and it was as if we were invisible.  Of all the seizures he had, it's one that really sticks out.  One stupid raisin, 25 other mom's around all unwilling to help, I felt so alone and helpless.  I pretty much stopped going out with anyone who didn't have a special needs child after that for a very long time.  I was traumatized by the lack of response from anyone.  I laid my seizing child down on the floor and was checking his breathing, yelling his name, timing a seizure, and no one even asked if there was anything they could do to help.

(Yes this is an old video, but his seizures still look pretty much like this with the blinking, I just don't try to catch them on video anymore because he tries to hide them from me now.) 

So all of that was leading up to why we don't do candy at all.  Well, if he has a seizure from a raisin, what do you think actual sugar will do?  There was another time on keto that he had a piece of cantalope and a few cheerio's at lab school and he had 3 seizures that afternoon and I could not figure out why.  The teacher told me the next day that he got into that snack.  She felt pretty awful when I told her about those seizures, because yes, it does have that big of an impact.

He has been off keto for a long long time.  He has cake at birthday parties!  And pizza!  And the child can eat.  He eats a TON!  But cake at least has eggs and fat and other things besides just sugar.  candy is pretty much just sugar.  So on Halloween he will get to trade his candy for a small toy, and get some sugar-free candy (made with xylitol and stevia, we don't do crummy artificial sweeteners either as those can sometimes be a seizure trigger for some people).

So no, we don't do candy on Halloween, or Christmas, or Easter, or any other holiday.  Seizures don't care that it's a holiday.  Holding my child while he seizes is the most helpless, worst feeling in the world and I will do whatever it takes to protect him.  I tend to have to spend a lot more (both money wise and energy wise) than the average parent to make it so that my kiddo doesn't feel like he is horribly different than everyone else.  So that he still gets enjoyment out of it, but hopefully doesn't have brain damage because of seizures.

But tomorrow we will get together with friends!  We will get all dressed up, go trick-or-treating!  The kids will trade their candy for sugar-free candy and a small thing they picked out off of Amazon and they will have a blast running around with friends!

      

Service Dog and the list of diagnoses and a very long overdue update on Jack!

Hey, I figured out how to long into the blog!  and it only took me a few weeks.  Really, it took me weeks to figure it out.  oops.

Jack is a feisty little thing.  Full of life, love, and an amazing amount of silliness.

TSC (Tuberous Sclerosis Complex) is part of every day life for us.  Jack has a very small brain tumor that has been stable but still requires yearly MRI’s for monitoring.  His heart tumors are stable as well and we don’t have to scan those for another 2 years.  But we are worried about those growing possibly at puberty.  Eye tumors were added to our list of tumor growths this past summer in a very off-handed way as if it should have been expected and I had to stop the doctor and ask questions. 

Then there is the fun behavioral stuff that comes with TSC.  I’m just going to link to the TAND check list stuff and you are welcome to go look at all of that fun stuff. 

I have a funny story about running into one of the leading experts in all of it in the halls of congress and having a meeting and we have run into each at several conferences now too and she is phenomenal.  So, my point to that side story is that if we decide to have further testing done, I have the inside scoop and know exactly who to go to! 

Okay, so onto Jack! 

First on the list is ADHD – something like 84% of kids with epilepsy also have ADHD.  He is on meds for it and they do work.  I was shocked that we gave him a med that worked!  LOL!  The neurologist got a kick out of my reaction!  And it’s amazing the difference it makes.  Without his meds, he really can’t do one task without being told at least 5 times. 

Epilepsy

Yes, the beast that won’t die.  But here is where you will read the best news, and hopefully where I won’t curse myself too!  Jack’s seizures are super short.  Like 5 – 20 seconds.  He tries to hide them from me though because he knows that I watch and worry.   He still has many tubers in his brain that could become active at any time and start causing more issue and bigger seizures and because he is having pretty frequent small ones, this is a concern.  I’m also concerned about this at night!  This is a big concern at night while he is sleeping and while he is at school, which is a huge reason for the service dog. 

Sensory Processing Disorder

This has been a big problem since surgery really.  People clapping and cheering is usually the worst, though it has gotten easier for him to manage lately.  Hearing protection helps him manage, but not always.  He even managed to talk us into taking him to a UT football game and is such a football fan that he did great cheering like a crazy longhorn!  He has trouble in his classroom managing noise, but does much better now with singing happy birthday.

Autism

60% of people with TSC have autism.  We had Jack tested because he just has some quirkiness that makes us wonder.  He gets stuck on things and will NOT LET THINGS GO and it makes us crazy sometimes.  If something at school doesn’t go exactly as he thinks it should, he gets really upset about it, sometimes to the point of crying for hours.  The funny thing about the testing is that even with the testing, he was right on the border.  He gets when we are getting mad and he makes good eye contact.  He makes friends pretty easily and communicates with people pretty well.  The thing is, he is always right on the border of every test and always has been.  The neuropsychologists who did the testing said that she has never debated so much as to weather or not to give a kiddo this diagnosis or not.  So when I say mild autism, I mean really, really mild!  But there are also some times when we can’t deny that he does have autism.  It’s all because of stupid TSC.  The obsessing, the epilepsy, the autism, the meltdowns, the reason we have to have an escape plan, is all because of TSC.  

So, Please don't try to tell us that our kid doesn't have autism, that isn't helpful.  I had a parent at school try to tell me that Jack was fine and didn't need any assistance at school and I thankfully have grown enough that I just took a deep breath and turned and walked away because while I could have stood there and argued with her, there was absolutely no point in explaining to her why my child is the most severally affectedly child on campus.  While compared to a population of TSC children he is doing amazingly well and is thriving and we are so proud of him, if you compare him to his same age peers, he is significantly delayed.    

But we are hoping that this service dog helps him to have more independence, especially as he gets older and turns into a teenager.  We hope that he is able to be more confident at school and transition easier there.  If things don’t go as planned and he starts to melt down that his dog can do some silly tricks and help him to laugh and distract him and transition into a different activity or nuzzle him and cuddle him and hopefully avoid the meltdown altogether.    

Here is a tiny clip of his happy dance after building a tower taller than him while waiting for his sister after dance class.
 

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 Help Us Raise $17,000 to get Jack a Service Dog!!!