Aspergers and head injuries?

[saveaquarter]

Hey everyone, it's been a long time since I've posted! We've been crazy busy around here. I have a bit of a left field question, but with the number of people and amount of knowledge to draw on from all of you, maybe someone reading this has some advice to offer.

My husband recently sustained a "moderate" brain injury (which is really like saying he's suffering from "moderate" paralysis for all the modifier means) in an accident, and it's changing our whole world. He has a brain bleed, and a possible depression fracture that's come to attention now that the actual wound in his head is making progress with healing (as in, the monstrous piece of volcanic rock of a scab fell off).

It's been just over a month and a half since the injury, and the amount of changes that have taken place are uncountable. His vision has changed, how he hears, how he tastes, his anxieties are through the roof, not to mention his sensory sensitivities being ramped up, along with a fear of all things involving parking lots and cars...

But my question is this. Do any of you have any experience with someone on the spectrum sustaining a brain injury? Or a traumatic head injury of any sort? How did you manage things? What changes did you need to make? We're getting some excellent guidance from our doctors, but I firmly believe experience can be the world's best teacher, and I'd love to hear from anyone who's been somewhere close to where we are now, especially considering the wonderful advice I've gained from you all in the past.

Thank you

 

[LMC]

My DH sustained a severe head injury when he was a 10 yo. He takes two medications daily. He must take them religiously or he sleeps all the time and can't function. When I met him many years ago, he was on a different drug therapy than he is now. It started to fail. They tried litium, which I thought worked GREAT but the levels would get too high. So he is now on the two drugs he uses now (been so for about 15 yrs) but they have recently started to fail so they are adjusting doses again. If the adjustment doesn't work, they will have to switch drugs entirely and that is no fun.
He can function, drive, work.

 

[MinnieVanMom]

Sending you a PM.

 

[saveaquarter]

My DH sustained a severe head injury when he was a 10 yo. He takes two medications daily. He must take them religiously or he sleeps all the time and can't function. When I met him many years ago, he was on a different drug therapy than he is now. It started to fail. They tried litium, which I thought worked GREAT but the levels would get too high. So he is now on the two drugs he uses now (been so for about 15 yrs) but they have recently started to fail so they are adjusting doses again. If the adjustment doesn't work, they will have to switch drugs entirely and that is no fun.
He can function, drive, work.

I'm glad to hear your husband does well in spite of his challenges. I hope my husband can reach that point as well. Good luck to you both while they find a new medication balance for him.

Sending you a PM.

Thank you, I'll keep an eye out for it.

 

[SoonerSarah]

My baby had a TBI and stroke 4.5 months ago. She was in the hosital for 2 months. She has been through the wringer but is improving. We don't know to what degree she will be able to improve, but she will never be Neuro-Typical. She sees a lot of specialists, and because of her age, it's hard to know exactly what her problems are, since she is regaining her speech, but is still a toddler. She does have anxiety and some serious sleep issues. Essentially, her accident effected just about every system of her body.

Have you begun the process of applying for Social Security Disability? If not, you might want to look into it. My daughter has been approved for SSI, we were lucky in that her approval process did not ake long at all, and she was approved on the first try.

I will come back later with some links of different information for you, it's all on my computer. The majority of my research has been in the pediatric aspect, but some of it overlaps, and there certainly is a lot more info for adults.

Technically, all head injuries, including concussions, are Traumatic Brain Injuries.

Oh, and you said moderate paralysis, do you mean hemiparisis? My daughter was not able to move her right side of her body originally, but has regained some movement , but she has right sided hemiparisis.

 

[SoonerSarah]

I also meant to say that from the beginning we were told that for the first year, the best things to help her recover from her injury is sleep, calories and intensive therapy.

 

[saveaquarter]

My baby had a TBI and stroke 4.5 months ago. She was in the hosital for 2 months. She has been through the wringer but is improving. We don't know to what degree she will be able to improve, but she will never be Neuro-Typical. She sees a lot of specialists, and because of her age, it's hard to know exactly what her problems are, since she is regaining her speech, but is still a toddler. She does have anxiety and some serious sleep issues. Essentially, her accident effected just about every system of her body.

Have you begun the process of applying for Social Security Disability? If not, you might want to look into it. My daughter has been approved for SSI, we were lucky in that her approval process did not ake long at all, and she was approved on the first try.

I will come back later with some links of different information for you, it's all on my computer. The majority of my research has been in the pediatric aspect, but some of it overlaps, and there certainly is a lot more info for adults.

Technically, all head injuries, including concussions, are Traumatic Brain Injuries.

Oh, and you said moderate paralysis, do you mean hemiparisis? My daughter was not able to move her right side of her body originally, but has regained some movement , but she has right sided hemiparisis.

I also meant to say that from the beginning we were told that for the first year, the best things to help her recover from her injury is sleep, calories and intensive therapy.

Oh my gosh, that is absolutely heartbreaking. I'm so sorry for you and your family, I can't even imagine what it's like to go through something like that with a child, it's difficult enough with an adult. You and your family will be in our prayers, and I hope for the best for all of you.

We have, the application has been taken care of, and now we're just waiting for the response. We're hoping it will go smoothly, but the lawyer handling the personal injury case for us has already advised we seek out an SSI lawyer as well.

Any help you can provide will be wonderful, I'd truly appreciate it. And I was trying to make a comparison between the two terms, when people who have no experience with brain injuries hear 'moderate' they assume it's not bad and he's fine. While he isn't facing the difficulties your daughter is, he has a long way to go before he's 'fine'. And while I know concussions can be quite serious, it drives us all crazy that those without experience tend to equate all but the most dire injuries with a simple concussion. It's quite sad. My husbands injuries are largely internal, he has a subdural hemorrhage and an epidural hematoma, because they don't show on the outside, he's had some well meaning people say hurtful things.

I'm relieved to hear sleeping is good, he does it constantly. He must have slept 20 of 24 hours on Friday. Calories though, are trickier. He was a picky eater before and it's only gotten worse.

 

[SoonerSarah]

There is a lot of info out there on SSD and attorneys, such as amounts that they are allowed to charge. That is a subject that I know nothing about, but I have seen info out there.

The first website I was going to point you to is www.brainline.org

I know there is info on there about hypersomnia (excessive sleeping). I'm sure there are guidelines, but in Kenley's first 3-4 weeks after coming off sedation, she was taking around 4 naps a day, plus some cat naps here and there. Around 2.5 months post accident, she would still take 2 or 3 long naps a day. Now she's usually only taking one nap a day. We have troubles getting her to sleep and it's pointing more towards some PTSD.

If you are on FB, a great resourse is this page, they will post a lot of info.
http://www.facebook.com/#!/DustinsTbiAwareness

Brain Injury Association of America
http://www.biausa.org/About-Us/contact.htm

Also, I would check with local hospitals and rehab centers for support groups. For him and for you. There is a LOT of info out there, and while I have learned a great deal, I learn new things every week.

Oh, as for calories....would he drink something instead of eating? Something along the lines of Ensure? I don't know what all of the options are for adults. A young man that we know that suffered a TBI when he was 18, he wouldn't eat properly until 9 months after his accident. He essentially survived on Ensure. Kenley was given a g-tube because she had a tonic bite, her stroke was effecting her chewing ability on her right side, the damage to her throat effected her swallowing, and she refused to eat/drink for a while. She also has reflux and has problems with gagging, choking and is at a higher risk for aspirating (which she did in the hospital and that caused a ton of problems for her). But, in the last week she has done a lot better eating and we are weaning her off of her appetite stimulant and working on weaning her off of the g-tube feeds.

It takes time. And it's certainly frustrating. People don't understand, especially when they can not "see" a disability. I have met a lot of families whose situations are vastly worse than ours, and sometimes that causes me to think that I shouldn't bother a particular doctor about whatever issue. But, you have to remember (as do I), that although there are others with injuries far worse, your husband still needs to get the best care possible so that he has the best possibility of making the best recovery possible.

You guys are certainly in my prayers!