We will be looking at the new Recaros...(long)

So after Ali's freak out incident the other day I've watched her really closely. The next day she did okay... still not her usual happy self but she did okay. However she still complained...

Then Friday morning she woke up screaming at 4am and again at 6am and was up for the day at 6... now she is afraid of her bed too.

A little bit of background if you need it:

I'm still in denial.. but, she started with nocturnal seizures that we thought were nightmares right around the time her sister was born in 2003... and, we didn't realize they were seizures until she started having them during the day... the first time that happened was in the car 2 months after her sister was hospitalized for seizures. She totally freaked out in the car and while I was pulled over calming her down she had another one... then, came out of it screaming. (The same scream as at night, so that's how we made the connection.) We soon figured out that the sun triggered her seizures in the car but with RF in the Wizards/Boulevards she just kept her head out of the sun. She was on seizure meds until her 4th birthday 3 months ago... and I will only put her back on them as a last resort. If the seizures are affecting her development or getting worse... until then we try everything else.

It looks like we will be looking at the new Recaros because hopefully those head wings will keep the sun out of her eyes. (She wears a hat and sunglasses but on those sensory days they give her a headache so they only work about half the time.)

So I'm hoping we get the new Recaro's here soon... and that we can get her comfortable in one without legs hurting or falling asleep.

We have headrests so the Apex is an option too if that is more comfortable for her... she usually folds her legs up in the Regent. The Radian is too narrow and not deep enough and I'm worried the Recaro will be too. But I don't think the head wings in the Apex are comparable to the Recaro. I plan to go to BRU and USA Baby to try them all in the near future. But I think the only option would be the Recaro and then like a styrofoam cooler for her to put her feet on. I'm going to try those window clings again and we may end up getting the suction cup ones if we get desperate. Unfortunately they are very strict about the window tint around here...even with a dr's note saying the sun triggers my child's seizures and I needed the window tint they still ticketed me. So unfortunately I can't even do that again, but my van does have some that helps.

Any other ideas?

Oh gosh

Yeah, the Apex wings are kind of a joke

They really ticket you for the BACK windows being tinted? What state I've only heard of tickets for the FRONT windows being tinted....

I agree, I've only ever heard that the front windows cannot be tinted too darkly.
I'd contact whoever at the police department that can help you with this, and petition to get your back windows tinted darkly.

I'm so sorry you're having to deal with this and that your daughter is having such a bad reaction to the sun.

Hmm...looks legal to me... http://highwaypatrol.utah.gov/faq.html#Window Tinting

state laws vary quite a bit regarding window tint and percentage of light transmission allowed. here is a link to look up the tinting laws by state:

http://www.tintcenter.com/laws/

Yeah the tinting thing is a hodge-podge. I live near the border and in one state you can tint the sides but NOT back. In the other state, you can tint the back-sides and the back, but NOT the front-sides. Makes for lots of problems if you buy a car in the other state.

My relatives live in a different area and bought their two teenagers used cars in another state. They both got tickets within the first week for improper tinting.

BUT, I believe in all the states in question, you can get a medical letter for an exception. You just need to carry it in your glovebox in case you get pulled over.

Best of luck to you.

Yes, check on medical exceptions for darker tinting. We used to know someone who was allergic to the sun and she had her windows tinted beyond what the state allows.

((((Hugs))))

I hope you figure out something that works soon. Poor Ali!

I will double check but here the windows can only be tinted to a certain point, which my van already is. I wouldn't tint the front windows just the back ones next to her. But I will look into it again and see if they will do it. I have a friend who can do the tint but to do it and pay for it, then have to get it taken off for the ticket was very aggravating before. And here if you get a ticket for the tint you go in and prove you took it off, you don't just pay a ticket. (Which might be worth it.)

And before when I had the letter with me and the windows tinted in the Sienna, the cop said "Dr's can't change the laws, take off the tint and make the kid wear sunglasses". He wasn't the nicest cop in the world... but I don't tend to get pulled over by the nice ones.

I will see though what I can find out. I have a friend who works at the police department I can ask. Problem is that to go to the Dr I drive through at least 6 different cities, plus the Highway Patrol and 2 Counties for Sheriffs'... every police force is totally different.

Just ONE time I want to get pulled over by a NICE cop with a kid with seizures... just once!

I'll let you guys know what I find out.

PS...not that I was trying to talk you out of buying Recaros

SingleMomTo2Girls said:

It looks like we will be looking at the new Recaros because hopefully those head wings will keep the sun out of her eyes.

<snip>

The Radian is too narrow and not deep enough and I'm worried the Recaro will be too.

<snip

But I don't think the head wings in the Apex are comparable to the Recaro.

Click to expand...

as much as i LOVE our recaro YS, i can't say that the side wings really help with our DD2 complaining about the sun... our DD2 has complained about sun in her eyes (she's sensitive to it, more than some other kids) in every carseat she's been in, and she complains in the recaro as well. you wouldn't think so, right? her head is practically buried in those things, but alas... (that's why we're getting tint soon).

if the radian is too narrow, my *guess* is the new recaro *may* also be too narrow... the YS works better for taller, narrower children, and the new recaros as supposed to be about an inch *narrower* than the YS overall. whether that means the seating area specifically will be narrower, nobody knows yet.

and yes, the headwings in the APEX are a joke. they may as well not even be there.

Don't worry if I wanted the new Recaro no one would talk me out of them.

Maybe it was the combination of RF and the head wings then..... crap.

Well hmmm we will make a trip up to see the Young Sport again Ali fit in it okay now but probably wouldn't for long. So if the new Recaro is the same size that could be a problem.

With the Radian it was the combination of it being too narrow and the straps coming in to close to the neck that made me decide against it. Plus in this case we are looking for the head wings and it has none. I think I prefer Recaro so much because it's similar to Britax. Chest clip, LATCH connectors, harness straps, ect.

And of course the Safeguard. I'd love an excuse to get that seat. Lol.

Maybe it's a stupid question, but would a broad-brimmed sun hat help

She wears these hats (we have them in 5 colors)

http://render2.snapfish.com/render2...?*KUp7BHSHqqy7XH6gXPGn|Rup6lQQ|/of=50,590,442

We use them to cover her bald spots and to keep the sun out. That is the only type of hat she will wear. (Otherwise a baseball cap would be perfect!)

We also have sunglasses too. These do help except on the days she can't wear them. On days like she's had lately wear she is so sensory defensive she can't wear the hat or sunglasses. It quite literally "hurts" her skin. Kind of like when you are sick and have body aches and it hurts to have anything touch your skin?

I'm also looking for the bandana type hats, that tie under the chin. Except we want them with headbands instead. Those would be great for covering the bald spots.

Thank you!

I don't like aftermarket carseat products, but perhaps this sunshade which attaches onto a carseat might might help a little. Even though it's pictured on a Radian, the description says "It fits all car seats".

My 2 1/2 yr old neice has seizures as well. She's getting behind on her speech and other develoments. They've tried various meds. So now she's getting ready to go into John's Hopkins to start the Ketogenic diet on Monday. Actually that's where she goes regularly to see her nuerologist. There's another mom my SIL has developed a relationship with that's daughter went from 50 seizures a day down to about 10/day the last I heard.
They go to the same doctor.

Here's a link about the diet if you're interested.

http://www.epipro.com/k_diet.html

Susan

I may have to start looking at aftermarket products and just pick the least dangerous. The window tint thing is looking promising though, it's been a year or so since I got pulled over with it and it looks like things might have changed a little.

Oh yes, we know about the Ketogenic diet. Ali's seizures can be controlled with medication and vitamins. She and her sister used to seize constantly... Sadi was really bad. 50+ seizures a day. She barely had time to eat because she was constantly seizing, she almost ended up with a feeding tube. We've got them both under control at this point which is why a few seizures in a week is not causing a panic... I'd just like to stop it. Especially since many of her triggers happen in the summer.

My girls have other health issues, ect which make the Ketogenic diet not an option at this point.

You can also mention to your SIL that there are some herbs and amino acids that have done amazing things for seizures. The amino acid DMG brought Ali seizures to almost nothing while we researched further. It only helped tonic clonic seizures though. GABA, Passion Flower, Skullcap are all also very good for seizures. Whenever we have run out of any of the above, seizures immediatly return. They help more than the medication did. Let me know if she would like more information. It's much easier than the Ketogenic diet if it works.

Thanks!

Judge trumps cop any day. Here's my suggestion. Go ahead and get your windows tinted, and if you get a ticket just smile as you sign and tell the officer, "Thanks, see you later". Then fight the ticket. When you get into court show the judge your doctors order. By law you are allowed to present your case (Due process). It would be even better if you could get a second letter from another doctor or if your doctor could accompany you to court. Most likely, the judge will have way too full of a docket to want to waste a couple of hours on something as minor as a tinting ticket. Also don't forget, if you fight the ticket and the ticketing officer does not appear, the ticket will be dismissed.(Right to face your accuser) Once the judge rules in your favor, keep a copy of the court proceeding along with the doctor's letter in your car. That way the next time some cop with his drawers in a wad decides to pick on you, you can just smile and say," well you could give me a ticket for my window tinting, but here is what the judge said the last time this happened."

It would be a bit time consuming, I know, but it might be the only way.

Kim

safeinthecar@mac.com said:

Judge trumps cop any day. Here's my suggestion. Go ahead and get your windows tinted, and if you get a ticket just smile as you sign and tell the officer, "Thanks, see you later". Then fight the ticket. When you get into court show the judge your doctors order. By law you are allowed to present your case (Due process). It would be even better if you could get a second letter from another doctor or if your doctor could accompany you to court. Most likely, the judge will have way too full of a docket to want to waste a couple of hours on something as minor as a tinting ticket. Also don't forget, if you fight the ticket and the ticketing officer does not appear, the ticket will be dismissed.(Right to face your accuser) Once the judge rules in your favor, keep a copy of the court proceeding along with the doctor's letter in your car. That way the next time some cop with his drawers in a wad decides to pick on you, you can just smile and say," well you could give me a ticket for my window tinting, but here is what the judge said the last time this happened."

It would be a bit time consuming, I know, but it might be the only way.

Kim

Click to expand...

yes, agreed. most judges would throw a ticket like that out if presented with a medical document justifying the offending modification. but why not just keep that document in the car and use that to persuade the cop not to write the ticket in the first place? that may greatly reduce the chances of getting a ticket in the first place...

and if the ticket is received hours away from home, you're pretty much screwed, since you have to contest tickets in the precinct/county in which they are received.

oh, and nice to have another mac user on board. :thumbsup:

Well since she gets admitted tomorrow, I don't think they are backing off the diet. I had to go hunt down toothpaste for her because she couldn't find it in my rinky dink home town. But oddly enough I found the right kind at Wal-Mart. My hometown doesn't even have wal-mart(the clostest ones are an hour away).

I think they are actually excited to try this diet since it means improving life for Hannah. Hannah seems to have spells every few weeks now. She used to go months in between, until she hit a growth spurt and then the med levels would need to be adjusted. Her seizures are very mild looking, so unless you knew what they looked like, you probably wouldn't think much of it...until she gets dusky looking. She missed her 1st birthday party because she ended up in the ER.

Thanks for the info about the amino acids and such. I'm hoping to get my SIL to take her out of the Crappy Sport and get her into at least an Apex while she's still seizing.

Susan