R-Lawrence - my journal here

[R-Lawrence]

Thank you, Saving. Does he get them often? Is he on medication?

I researched most of the day today and found a lot of autistic-driven seizures can be "lessened" by increasing Vitamin B-6 and magnesium in the diet. Gonna try that. Son helped me today by writing the food sources of these on little stickies then we placed them on a huge 7-day calendar chart I made so he can get a little each day by certain foods. To help not get bored with the foods. Stuck it on the kitchen wall.

Today he had raw baby spinach (just a handful), eggs (from our girls, of course), a pear, apple slices, dried blueberries, dried mango, and sunflower seeds. In addition to other food. And three pain relievers (must have hit his head when he fell, I guess).

Was VERY clingy today. Didn't want to leave my sight. This from a 14 year old I'm-too-old-for-night-kisses teen.

 

[Denim Deb]

All it takes is for them to get sick, and they forget they're "all grown up."

 

[R-Lawrence]

Thank you, Deb. Already opened the link and will read. Good to be able to do more research. I feel so helpless.

Will contact Abi. Thanks.

 

[Denim Deb]

You're welcome.

 

[savingdogs]

They told my Hubby the same thing, to try to prevent a second seizure. It has been about two years now and he has been successful. He gets a weird feeling every now and then, usually when he has forgotten to take his medication. He has felt like lying down or resting his head a couple times but never had another grand mal. For a while he was having this feeling fairly frequently but then they did a "blood level" test for his dilantin and decided he needed a higher dose. Since he has been on the higher dose he has done much better.

They said he might never ever have another seizure again, some people have only one and they don't know why. I don't know how this relates with autism however, my husband is not autistic. Abi would be the one to ask.

 

[R-Lawrence]

I pm'd Abi this afternoon. Hoping she might have some insight from her unique perspective.

Good to know that a second seizure can be prevented. I just wish it didn't take so long to get appointments for all of these tests and evaluations!

We were just invited by in-law's family to an easter thing but I'm declining for me and my kid. Their kids like to play video games and it just wouldn't be fair for them to play while my kid has to sit in another room. Or have them stop until we leave. Hubby might go.

That's ok. We mom's make all kinds of sacrifices, don't we?

 

[abifae]

Heard the thud and found him seizing on the floor by the computer. Hubby and I had already finished working on the goat pen or we might not have found him for an hour or two.

Answered you in PM but more detail here so I'll reply here too

If it reassures you... With NO medical attention, my grand mals subsided to petit mals all on their own. So with attention, I'd think there's a good chance to get them under control.

He slept a lot last night ... more sound sleep than in years. I've moved him to the bedroom next to ours for the next month. And we're gonna be joined at the hip until we get answers.

I sleep a LOT when I've been having a lot of small seizures. They take it out of you. It's like degaussing your brain LOL.

He has very little memory of anything since yesterday afternoon. Bits and pieces. And part of his memories in other areas is gone.

Perfectly normal, also. My memory shreds the more severe and/or more frequent mine are. There's great info about them if you google epilepsy. I think you'll find it reassuring. Seizures are not the life sentence they used to be. Heck, for nursing, they don't even care that I have seizures. It's not a block to anything but driving and that's only if you have had one recently.

ER doc said probably autism related (abi?). Could have been the vid game he was playing. Meanwhile, if my son has another seizure, the ER doc said chances are he'll always have them. So we need to do everything possible to prevent the second one.

Yeh. Overstim creates, I believe (and would love to study this in depth, I've only seen a few articles on it and not well researched) too much brain activity for the brain to handle and can cause seizures. Many autistics develop epilepsy by their mid 20s. There are studies showing autistics have a higher incidence of the epilepsy gene.

However, low carb diets have helped a lot of epileptics and a lot of autistics, and seems to do well for the combo. All the diet info on autism is anecdotal, but there are some great studies done on seizures and ketosis.

Definitely keep that second seizure from happening if you can, but don't despair if he has another. Keep the stim low, especially flashy lights, fast movements on tv/games, and too many different sounds at once. I'd seriously limit sugar and caffeine, too. Get PLENTY of sleep. I know early bedtime and 14 don't match, but fatigue is a massive trigger.

My seizures went untreated until I was 30 and are mostly under control just through diet. They started grand mal and now appear to be complex absence seizures. No insurance so I haven't had any fancy tests, but the ER doc said it seemed like LOL. And from what I've read, it matches. But even all those years of severe seizures, diet has them to a very small number now. I'm pretty sure if I went on the diet when I was in high school, I'd be seizure free now.

 

[R-Lawrence]

Thanks for all the help. It's one battle after another here.

My kid's getting really bored without being able to get on the computer. EEG scheduled for Tue. Wed has appt with insurance autism coordinator. Still waiting for neuro doc office to return my call for appt there.

Not sleeping. Not eating correctly. Goat still hasn't kidded. Chicken pop increasing.

And...

I see a divorce in my future. I brought one child to this marriage a few years ago; didn't think I was marrying another.

Hubby is jealous of the attention my kid is getting. For real?!?!?!


Please keep us in your thoughts.

 

[savingdogs]

I'd be real temped to have a real heart-to-heart with your hubby.

Your child has to come first, that is just mother nature and how we moms are built. He has to get that into his head. When your kid has this kind of issue, it is just something he has to accept as the total package that comes with having YOU. Ask him to man-up or bug off, essentially.

I'd give him the message that he needs to step up to the plate and be on the team or get off the bus, and cut your losses and move on. I'd have different advice for you if this was baby-daddy but since he is not.....

My friend with an autistic child had to go for extended custody after she was 18, as her daughter, while doing well (for her) is more like a 13-year-old child and gets herself into trouble if left to her own devices, so my friend will need to be her "mom" for an extended period of time. Her own dad is not in the picture any longer, he could not deal with it, but my friend has found new, more mature people with which to spend her time. There is no use wasting your precious self on someone who can't deal with the issues that have been thrust upon your life. The Lord knew YOU could handle it or he would not have given them to you, but you seem to be saying that you know your current man cannot handle it.

This is all, of course, based on what you have told us. It might be a good idea for something so important for you to suggest to your husband that he needs to go to some marriage counseling with you so that you can get more professional advice than provided by friends in a forum format. Or short of that, agree to talk it over with a sympathetic mutual friend who can help you guys discuss this issue with someone impartial. Someone who actually knows the three of you.

It is hard to give accurate advice sometimes based solely on hearing one person's side of the story. There are probably things all three of you could be doing to make things better. It might make it easier for you to decide what to do, as well, when you see the things that come to light during that type of discussion. You might find your husband cares but is overwhelmed and just needs to find ways to reconnect with you.

 

[R-Lawrence]

Thanks, SD. We're calling this week to set up marriage counseling. He's not hearing me when I tell him my kid comes first. Sometimes he acts like such a child ... throwing tantrums, fighting with my kid over who gets to change the channel or close the garage door. Expecting me to do all of the cooking and cleaning and laundry and animal care and still have energy and time for "marital relations" with a man who acts like a boy.

So, yeah, marriage counseling as soon as possible. Because I don't have the time or energy for two children.

I wonder if there's a SS. com person in Colorado that has a couple of rooms to rent? So we can bring our chickens and goats.

If needed.