Introduction and looking for stroller recommendation

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Joined: 12/01/05
Posts: 1000
Introduction and looking for stroller recommendation

Hi. My name is Deb. I have 5 kids. One of them has dystonia, which is a neurological disorder that affects muscle movement. He has gone downhill quite a bit over the past several months and is now unable to walk on his own for a good portion of each day. We are having him fitted for a power wheelchair, but we need a stroller to use in the meantime and for outings for which a power chair just won't work. Can anyone recommend a fairly lightweight and portable, inexpensive stroller? He is small for an almost 7 year old (42 inches tall and 32 pounds).

betsy0040's picture
Joined: 03/28/08
Posts: 121

The only recommendation I can make is the Cybex Callisto. Cybex makes other models which are cheaper but I got mine on a daily deal site so it was considerably less expensive than it usually is. It has a 55lb weight capacity. At the time my son wasn't walking yet and we didn't know when he would be so I was looking for one with a higher weight capacity than the one I had. It's a great stroller, easy to maneuver and good for my DH since the handles are high and extend even higher. The site I got it from puts it out every so often and you may find it somewhere else for a reasonable price as well, it was mamabargains.com. They also make onyx and ruby models which also go to 55lbs.

Joined: 12/01/05
Posts: 1000

Thanks. I don't think it will work for him. He's too tall for most infant strollers. I think we will need an adaptive stroller, anyway, for the foot support.

Joined: 05/05/04
Posts: 435

We have an older Combi stroller (purchased in 2005, I think). I think my approximately 49" tall 6-year-old could use it but she'd have trouble keeping her feet on the foot rest. It's possible you guys could adjust that somehow, but if they make strollers geared towards bigger kids that'd probably be a better idea.

I looked on amazon and they look pricey but at least one qualifies for Amazon Mom. After my trial ran out I signed up my husband. Then we bought a booster for Sam ($100) and got an additional 3 months. Then we bought another booster for the other car and got 3 more months. So if you buy it on amazon then sign up for amazon mom first. You would end up with a huge Amazon Mom membership, which gets you free Amazon Prime (streaming video, free shipping on orders less than $25, etc). Very handy.

Then again, you might be able to get insurance to cover it.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

First I wanted to welcome you to our group. I'm Angela. I have 2 special needs kiddos. One with mild autism and one with lots of congenital heart defects.

I actually had to look for a stroller for my guy with they heart defects (he's 5 and only about 2 inches shorter than your guy and same weight) because he has a hard time if we go somewhere that we end up walking a lot (ie the zoo, etc.) Unfortunately I could never find anything that was large enough and cheap. Anything that was cheaper wouldn't have lasted very long and we were looking for something to last a while and that would fit in our van (SUV at the time) with limited storage space. We ended up getting this one.

http://www.babyjogger.com/summit_xc_lp.aspx

But it's NOT cheap. And my 41 lb, 48" tall 6 year old actually fits in it fine (I remove the canopy though). How long is it going to take to get the electric chair? I know it takes a while. If it's going to be a while it might be worth it since he'd be using it every day.

I'm not sure that helps, but that is the option we had to go with since our insurance won't pay for anything unless they need it 24/7 or at least the majority of every day so it beat the $1000 medical grade ones.

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

Hello!
I have a recommendation for a stroller, but it's not cheap. We have the BOBB Revolution and my 6 (almost 7) year old, 63 lbs can ride it in quite easily. It's also easy to push with him in it. He's only 46" tall but there is quite a bit of room before he's too tall for it.

Joined: 12/01/05
Posts: 1000

Thanks for the warm welcome and all of the suggestions. I think I'm still leaning toward an adaptive stroller. There are some out there in the $500 range, but many of them are cumbersome and take up a lot of space when folded. I'm new to this whole thing, but I'm looking for something that is going to last him 2-3 years at least, and hopefully he will be growing in that time. There are going to be times when taking a motorized wheelchair just isn't going to work, so it will need to be something handy that we can use on a regular basis.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

That's what I like about the BCJS they literally fold by picking up a handle. They have video's on the site I posted above and I can fit it in the back of an Ford Expedition with the 3rd row in use. I did have to take off the front wheel, but again it's literally one push of a button. It has adjustable handles, goes up to 100 lbs and the seat height was a bit bigger than the BOBB (we considered that one too, but seat height was the issue) AND it's less than $500. You might be able to find a store within driving distance to test it out.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Just found this one too.

http://www.adaptivemall.com/sptojo1.html

It mentions "quick release wheels" which is what mine has. AND it's $500. Just an option and it has a free medical necessaties bag if you enter the promo code.

Joined: 12/01/05
Posts: 1000

Good idea. I'll check.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Hi Deb!

Welcome to this board! I don't have much help on the stroller front. I haven't had to deal with that. Is this as a result of the mix-up at the pharmacy?

I just wanted to say "welcome". This board is a little sow, but everyone usualy comes back regularly to check on each other so don't dispair! Newcomers are always welcome!

Joined: 12/01/05
Posts: 1000

Hi Sara! Yes, it's due to the pharmacy mix-up. He's had nothing but trouble since then. His meds don't seem to be as effective, and he's having more side effects (probably due to the fact that he needs much higher doses, though the side effects could be directly from the Risperdal.

For those who don't know me from the Large Families board, Isaiah was given Risperdal by the pharmacy instead of Ropinirole. The names sound similar, but they do the exact opposite. The pills were actually mixed in the same bottle and look identical other than the imprint on one side. After taking unknown quantities of these meds for 9 days, Isaiah woke up from a nap and couldn't move his legs, talk, eat, etc. He ended up in the ER and then admitted to Children's, where they found the med mixup. He had so much trouble that he couldn't go more than 4-5 hours without meds or he'd wake up in pain. So we ended up getting him a feeding tube to give him meds at night. That's the abbreviated version of the story. I'm sure I will share more later.

ETA: Isaiah has a genetic disorder called dopa-responsive dystonia. He takes the same meds as someone with Parkinson's.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Deb - I'm so sorry your family has had to go through this. Dealing with a child with medical issues but dealing with someone's mistake that causes your child to be harmed further has to evoke emotions you can't put on paper. (((Hugs)))

lil96's picture
Joined: 03/27/06
Posts: 573

Sorry to hear about the difficulties from the pharmacy, that sounds really frustrating!
I love strollers, so I had to lurk on this. I have heard wonderful things about the special tomatoes strollers. There are a few different types. Here is their website: http://www.specialtomato.com/

I am pretty sure they work with insurance (but not positive?). They cost slightly under 500. I first heard of them because I follow a blog called Rhett Girl. I think she has a review somewhere on her blog.

My neighbor's son is special needs and they use a single mountain buggy urban jungle. Their son is ~6 yrs old. I don't know how big or his weight, as I have only seen him in the stroller.

Joined: 11/28/06
Posts: 848

I know next to nothing about strollers but wanted to welcome you to our board anyway. I hope you find a stroller that works for you!

My name is Tanya and I have 2 little girls - Alana is 6, Madison is 4. Alana has allergies and asthma and is currently undergoing some GI testing. Madison was born with laryngomalacia and had chronic respiratory issues but she is now medicine-free and doing well.

Joined: 12/01/05
Posts: 1000

"lil96" wrote:

Sorry to hear about the difficulties from the pharmacy, that sounds really frustrating!
I love strollers, so I had to lurk on this. I have heard wonderful things about the special tomatoes strollers. There are a few different types. Here is their website: http://www.specialtomato.com/

I am pretty sure they work with insurance (but not positive?). They cost slightly under 500. I first heard of them because I follow a blog called Rhett Girl. I think she has a review somewhere on her blog.

Thanks. We were looking at the Special Tomato strollers last night. They look pretty reasonably priced and include a lot of "accessories" that aren't included in others, like padding, 5 point harness, shopping basket. It's pretty small, though. I am not sure how much time we'd get out of it before he outgrows it. The urban jungle is even smaller, I believe. The Special Tomato might be our best bet, because anything bigger or adjustable to growth is going to cost about twice as much money at least.

Joined: 05/05/04
Posts: 435

I didn't say welcome! Sorry about that. Welcome to our group!

My name's Natalie and my son was born with an incomplete unilateral cleft lip.