Chiari Syrinx-my son

momh135

Earning My Ears
Joined
Feb 22, 2013
Messages
20
My ds is 4. He has a brain malformation called Arnold Chiari Type 1 and a spinal cord disease called Syringomyelia. he is truly a miracle. he suffers from eye sensitivity to heat and light that makes his eyes burn,amongst a host of other things. But, I think the eyes will b the thing that wil bother him in dis. anyone familiar or have any suggestions other than cool rags and a portable fan?
:flower3::flower3:
 
they sell the misting fans in the parks, do you think he would like the misting part? not sure where they sell them, but they have those bandana sort of things that you wet with water and then tie them around your neck and they keep you cool. not long ago, someone wrote about cooling vests. don't know much about them, but looked at them online and I wondered if they would actually make you hotter by covering you up? plus the ones I saw weren't too cheap, but if it made him more comfortable, it would be worth whatever it costs. could also take breaks in the first aid station, to get him out of the heat and bright sun.
 
Thank you so much for all of the ideas! He wouldn't like misting. But the bandana sounds great.i am going to look online. Great idea about breaks too! Do you know someone with Chiari?
 
no, I don't know anyone with it, I have never heard of it before. I have a grand daughter with problems and she doesn't tolerate heat well, and I hate to see her uncomfortable. just breaks my heart if the little ones are suffering.

the bandana things, we saw them before at a fair. but I think my sister got one at a sporting goods store.
 

Not sure how he gets around, but there are stroller and wheelchair "cooling pads". Might be worth looking into. Also, Sports Authority has the bandanas...
 
cooling pads for stroller/wheel chair, I have never seen them. I will definitely have to look into that. do you know where they have them?
 
I've seen the stroller ones on Amazon. I have never researched the wheel chair ones. But a friend said patients of hers have had them. Maybe a medical supply store?
 
I'm post-Chiari decompression. I have heat and photo sensitivity for other reasons. I wasn't diagnosed until I was an adult, but I'll give you my recommendations based on my experiences.

1) If he has fatigue, you may want to look into being able to use his stroller (assuming you're bringing one) as a wheelchair (which means getting a GAC from guest services).

2) Sunglasses. The majority of the sun you're going to be exposed to at WDW is going to be walking between things. There's nothing WDW can do about that. If you do have him in a stroller, a sunshade would also help. If he'll wear hats, a hat with a good brim would be another thing to try.

3) You can buy cooling bandanas. They're more affordable than cooling vests and will be colder than just using wet rags. I'm fairly certain REI sells them, but they're available many places. Last I looked they were under $20.

4) Misting fan. These are fans that have attached water bottles. As the fan turns, it also lets out a mist of cold water.

5) Make sure he's drinking loads of cold water. You can get cups of ice water from pretty much any CS (should be free AFAIK), or bring a cooler with your own. Water is going to be better than anything else because it won't dehydrate him.

6) You didn't say whether he has any skin photosensitivity (whether he burns easily), but at least 30spf suncream (once you're past 30spf there isn't a huge difference in efficacy between different strengths, but a minimum 30 is probably good).

I'm not sure when you're going to WDW, but it may be worth looking at clothing that has maximum coverage, but is flowy so that it blocks most of the sun, but isn't so tight it gets sticky.

You may find it most helpful to go to the parks for rope drop, spend a few hours, then go back to the hotel for a nap and maybe some pool time during the afternoon when it's hottest and sunniest and then going back in the evening. That will reduce his sun exposure and also build in a rest time, which I'm sure he'll need. It's easiest to do if you stay on-property, but is possible if you're not too far off property. You could also use First Aid if he needs to lie down and you don't have time or can't get back to your room for whatever reason.

It's also worth checking with his neurologist/neurosurgeon for any additional restrictions. He probably won't be tall enough for rides that have height restrictions so being jerked around is probably less of a concern, but his doctor may either have more suggestions relating to his specific symptoms or some sort of restriction that I'm not thinking of myself.
 
Maybe avoid the hotter months of travel (May through October). I've had that feeling of burning eyes (thanks to MS) and it is awful. If it can be avoided by going in a cooler month, then I wouldn't think twice about that. Cool rags really can't do the trick considering how hot FL gets.
 
Hi. May I ask where is your son's syrinx? I have Cervical SM c2-c6, but my syrinx is wide, blocking 82% of my CSF flow.

Have you thought of a cooling belt or vest or wrist/arm bands? Very adjustable for him being so small, they secure with velcro and also the website I use (Polar Products) the people are GREAT and could probably adjust their items to fit a child. They have done some extra stuff to the "belt" I use. I use them rather than the mist as it basically SUCKS to be hot and wet all the time. The items I mentioned uses cool packs that can be frozen.

If you would like you can inbox me, I would certainly love to help with any advice or info or just some support. It's such a rare disease, hard to find people who "get it" .:thumbsup2
 
Thank you all so much for your ideas and support. Cynzilla- My son's syrinx covers almost all of his thoracic spine, and slightly into lumbar. It has caused him bowel immotility. Do you also have Chiari? It is so hard to find anyone who understands and since he can't explain how he is feeling to me, it is good to have an adult who can relate. Did you have a shunt or decompression surgery? My DS had decompression with lamienectomy and duraplasty two years ago. He is doing exceptionally well except for tingling in hands, eye problems, and the bowel thing. I would love to keep in touch. :wave2:
 
We have various heat issues here.

Various suggestions-
Sunglasses and hats with wide brims help a lot.
I also found the cooling neck ties at Dollar tree a few days ago.
I freeze washcloths and take ice packs into the parks.

Most counter service places with give you a cup of ice just for asking.

You can rest in First Aid to help bring down body temp.
 
Could you go to WDW during the summer and take advantage of the late night park hours? That would help avoid the sun and heat. You could rest during the middle of the day in your resort room.

Renting a car may help - waiting 20 minutes for a bus can be brutal for someone with sun/light/heat issues. Or stay on the monorail loop?
 
My son also has Chiari but no Syrinx. He was decompressed on 2004. We did fine in Disney the couple of times he went after surgery. Keep him hydrated - with water and powerade - alternating throughout the day.

Also be careful with the rides. DS can't ride any rides with out it "popping" a whole in his spine and having to go get blood patches put in - As he has grown and gotten older his spine has stabled and he is able to do more.

Rides DS COULD tolerate are: Peter Pan, Winnie the Pooh, Buzz Lightyear,People Mover, Pirates, The Seas with Nemo and friends, Figment, Spaceship Earth,

Never tried - Star Tours, ANY roller coaster.

I am assuming that your child has a shunt (b\c of syrinx) I would talk to his Neurologist and Neurosurgeon to see what they say also. Take AS MUCH info into them as you can to see what they think he can/can't do.

Best of luck to you. I worried for years every time DD had pain or headache, but I can tell you after almost 10 years post op - my child is doing well.

Fell free to PM if you have any questions
 
I have Chiari (but not Syringomyelia) and was decompressed 11 years ago. Probably the best thing I ever did was to join an online support group. I've learned so much just by reading the daily postings, plus I can ask questions when my own concerns pop up.
I belong to WACMA, but the American Syringomyelia & Chiari Alliance Project or ASAP might be a better fit for you. Once you join you won't feel so alone, and lots of people will understand. I really have no one where I live I can talk to about Chiari, I even have to educate the doctors here, so the support group has been a huge help to me!

I saw the cooling neck wraps at Walgreens last week.
 
I may have Chiari (doctors disagree) and I am post C2-Occ fusion and have many of the same issues your son has.

My lifesaver is First Aid. It is air conditioned, quiet, has a place to lay down and even take a nap. I found being horizantal very helpful for my condition and even my tilt/recline powerchair was not as good as relaxing in First Aid.

In fact, I am there so often now that the nurses know me!
 











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