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Old 03-28-2007, 03:15 PM   #136 (permalink)
 
Join Date: Jan 2007
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me too! me too!

Yay, I get to add the first * to Ehlers Danlos Syndrome

Yep, EDS and Chronic Fatigue
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Old 04-11-2007, 12:57 AM   #137 (permalink)
Community Rank: Day-Tripper
 
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Join Date: Apr 2007
Location: Missouri
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Hi I am new here...

My youngest son has CP and Epilepesey and Sensory Integration Dysfunction. He is also non-verbal and uses an augmentative communication device. Last Sunday he had 3 seizures, and we leave in two weeks. He is our sunshine (his brother and sister too, not just his mom and dad )

My middle son has ADHD and CoughVariant Asthma.

My daughter, who is the oldest, has pre-teen-itis.

I have Rheumatoid Arthritis and Fibromyalgia.

We are so hopeful that we can get through the week with no seizures, that is our main concern.
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Old 04-14-2007, 03:10 PM   #138 (permalink)
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We travel with 2 children with food allergies, asthma, and allergies - indoor, outdoor and environmental. DD also has CVID(Common Variable Immune Deficiency), I'm not sure if that qualifies as a disability. Also in our travel party are 2 adults with asthma and allergies, 1 with high blood pressure and ulcers-which means no Motrin or pain medicine. Every time I start packing and end up with an entire suitcase of medical equipment and medicine plus a small cooler for DD's infusion medicines, I think that we are nuts for traveling! Going through security with the new rules takes forever, I always feel bad for the people stuck behind us.
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Old 04-21-2007, 04:18 PM   #139 (permalink)
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When we travel to WDW in May we will be traveling with

two of my children with severe life threatening food allergies (specifically peanut and nut). (Meaning we get to carry epi-pens)

I also have a child who has a neurological birth defect of her cerabellar tonsils. (mild cerebellar tonsillar ectopia) It makes it so that she has numbness in her extremities and she has no sensation of having to go to the bathroom. It also means that she cannot empty her bladder more than 50% and consequently gets a TON of UTIs without treatment. That means she is continually on a preventative antibiotic.

One of my children also has asthma. (That is the one with the worst food allergies.)

My youngest child has vision problems and regularily sees an opthamologist. She had double vision for the first 3 years of her life and we did not know it. She has had one corrective surgery and may need more. She is now five and has barely any depth perception so she bumps into a lot of things and falls quite a bit. (I personally think this is what has made her such a fearful child.)
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Old 05-07-2007, 03:56 PM   #140 (permalink)
 
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My son has autism/pdd-nos(pervasive developmental syndrome-not otherwise specified), Fragile X syndrome, sensory integration dysfunction, developmental delays.

My daughter has SDD (severe diva disorder) lol. j/k
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Old 05-07-2007, 09:17 PM   #141 (permalink)
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Join Date: May 2007
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eosinophilic gastroenteritits

hI Everyone .
My 3 year old son has a rare and incureable disease called Eosinophilic Gastroenteritits. It is triggered by all dairy. any who we took him to Disney last year and what a magical time we all had. His trigger is dairy . He also is anaphylaxis as well. I can not tell how well the Chefs took great care of my son. For the first he felt normal. We have just booked another trip this Sept. Disney world is the best place for any person or child even more better for one with a disease. We are making Disney our offical vacation spot.
Sincerley,
Alicia & family

Last edited by alishalouwho; 05-14-2007 at 02:40 PM..
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Old 05-14-2007, 10:13 PM   #142 (permalink)
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Join Date: Mar 2007
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Howdy,
Have you visited Disneyworld lately? My son was in a car accident June 2006. Originally he was rehabbing from 2 severly broken legs and bruised ribs. He wasn't able to rehab until the legs healed more and there was no bed available at the hospital, so they sent him home with phuemonia and blood clots and one bypassed his heart and caused a stroke. He has recovered farther than the predictions of the doctors and didn't want to celebrate the anniversary of the wreck, but celebrate his love for his family. He is able to transfer so we are hoping he will be able to ride most of the rides. NO coasters or tower of terror, like he says I'm not stupid! If you have any tips, give us a holler! God Bless~Txmamamarsh
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Old 05-14-2007, 10:17 PM   #143 (permalink)
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Howdy, again!
We are trying to decide if we should use the bus system or rent a van since my son is in a wheelchair. If someone has any tips, we would appreciate hearing from you!
Thanks,
God Bless~Txmamammarsh
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Old 05-29-2007, 06:13 PM   #144 (permalink)
 
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Celiac which means no gluten, wheat, rye, barley, oats or malt.
Arthritis
Allergies to soy, wheat, eggs, dairy, chocolate, some aerosol sprays and odours.
Disintegrating disc
Morbid obesity
Social skills and other problems due to problems with me being born.
Astigmatism so bad I am almost legally blind in the left eye without glasss
Anemia and other problems from not absorbing fats, minerals and vitamins due to celiac
Scoliosis is getting worse and my hips and shoulders go right while my ribs go left.
Various falls and injuries that have caused some sort of damage
My wrist is getting very painful, who knows.
TMJ

That is all I can rememeber.

As for using busses, that is fine but I would prefer a van so that I could visit off site places and run down to grocery stores for food and Wal-Mart.
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Old 07-31-2007, 10:47 PM   #145 (permalink)
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Wink

Add to the list of disabilities, Traumatic Brain Injury.

This is caused by trauma to the brian and can manifest itself in many different ways... my 6 year old was in a car accident 2 years ago and is still recovering. (will be for many many more years!). He is mentally and emotionally a 2 year old. Suffers from ADHD; sensory problems; frontal lobe syndrome; situational seizures; severe fits of rage; and uncontrollable violent trantrums.

Other than that he is a joy to be treasured every day!

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Old 07-31-2007, 11:00 PM   #146 (permalink)
 
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I too suffer from chronic on going Migraines. I never not have a head-ache. High blood pressure also.
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Old 08-03-2007, 05:06 AM   #147 (permalink)
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During our last visit, our son's injuries required him to remain in his wheelchair-so mobility was our foremost concern. He also had a stroke and brain surgery which he was still healing from. This required the handicap accessible room and companion rest rooms. Our most difficulty was pre-determining where the companion rest rooms were and revolving our park touring around their accessiblity. Eventhough I wish there had been more restrooms available, the parks were far better than even a trip to the movies is at home-without a companion rest room it is a nightmare! My son had to be assisted in and out of the buses and the rides. The CMs were great and allowed us full access to him. We got the guest pass and went through the fast lanes with no problems and we had 7 in our party. There was only one ride we were let down on and that was Pirates. We had to go down the alley and were shown in the back-no atmosphere at all, but we were shown where to wait and treated very nice by the cms. Overall WDW experience was #1
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Old 08-07-2007, 01:10 PM   #148 (permalink)
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Location: Windsor Locks, CT
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We have been to WDW several times and are going on Disney Cruise Line next. Here's our rundown for the list:

My 4.5 year old son suffers from:
Pediatric GERD (reflux)
Von Willebrand's Disease (Bleeding disorder)
Soy Allergy
Benign Paroxysmal Torticollis/Migraines
Cyclic Vomiting Syndrome
Asthma
Seasonal Allergies
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Old 09-08-2007, 09:26 AM   #149 (permalink)
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Celiac disease.
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Old 09-08-2007, 04:37 PM   #150 (permalink)
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Thought I'd posted here already.... Both DS and DD have cystic fibrosis and gastrostomy tubes. DH is practically perfect, and I have BAD Disneyitis.
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