Let's help each other learn about disabilities

[Figment1964]

Originally posted by mommie2angels
Figment1964, has the diet been good for your DS? Was it hard to get him started on it? Our dd#2 is autistic but because of her other medical problems we have not tried the diet.

Yes, the diet has been extremely helpful! Initially it was a bit overwhelming to start out but as we've gone on (it's almost a year now) it's gotten much easier. We're seeing a naturopath who adheres to the DAN! (Defeat Autism Now!) protocol for diet and vitamin supplementation (also a huge help!) and having him give us direction has been very helpful to us. It took me the longest time to get to the point where I felt that I could/would do it, but once I got to the end of my rope, so to speak, and knew there wasn't anything else to try, I made the leap. I only wish I'd done it sooner. A great website is gfcfdiet.com. A helpful book is Children with Starving Brains by Dr. Jacqueline McCandless.

We see him be way less verbally aggressive and he is much calmer when he is eating as he should. When he has infractions we see the old stuff come back and we're reminded how far he's come.

Feel free to PM me if you'd like more info...always happy to help however I can!

 

[Chuck-PA]

I have Multiple Sclerosis, Neurocardiogenic Syncope, Barrett's Esophaegous.
Multiple Scerlosis is a disease that attacks the nervous system and your immune system. Sometimes causes pain, vision trouble, ability to use your limbs. I am newly diagnosed (1 year) and rigth now it is affecting my vision. I do have pains from time to time but not too bad. Each person is different in their symptons. I take a daily injection for this.
Neurocardiogenic Syncope is a miscommunication between the brain and the heart about the blood flow. When they work too hard, I pass out every 6-8 weeks. Take heart meds for this.
Barrett's Esophaegous is at the pre-cancer stage from too much acid reflux. Take stomach meds for this.

My son has Cystic Fibrosis. He is 16 yrs old (when diagnosed we were told lucky if he lived to age 12) CF is a genetic disease that affects the lungs and digestive system. It is life threatening.
The mucous becomes sticky and clogs breathing tubes. We need to do "clapping " on this lungs several times a day. He is tube fed at nght only and eats normally during the day. He has to take pills before eating to help keep the calories and nutrients in his body. He takes about 20 medications a day(pills and aerasol treatments) but he still is an active normal 16 year old. He plays flag football and is the best player on his team. He is just reaching the 10 percentile on the growth chart. He is 5'4" and 110 lbs. He also has ADHD and has allergies.

As for my wife, she has asthma. She also has lots of energy to take care of my son and I.
Our medicine cabinet looks like we can start our own pharmacy.

 

[Anne MN]

My DD who is a twin and is 9 yr old was born with a congenital heart defect. She was born without a mitral valve. (that is the right side, it pumps blood thru to the lungs to get oxygenated) She has had5 open hearts now (she just got home today from having a pacemaker put in) they had to crack the chest again to get good lead placement. She has had her bllod supply re-routed- has had her inferior vena cava( IVC lower half of body) and her Superior vena cava(SVC upper half of body) hooked into her pulminary artery. she also has "extra" plumbing she has two SVC's. You might have herd the term blue baby. that is where they get dusky or bluish around the mouth and nose. this is caused by not getting enough oxygen.
She also has a coloboma. or keyhole pupil. did not completly form.
she is near sighted in one eye and far sighted in the other

She has been delayed since birth. she has been slow to grow, has grown at the below the 5th percentile chart the whole time.

she has fine motor skills problems, small and her stamina is not very good.

she has had one of her diaphrams paralyzed during surgery, and is more prone to respirotory problems.

she is such a trooper- she has so much fun at the hospital- she plays games with the nurses and most of the DR know her.
She has her favorite nurses and there is a show at the hospital that she watches when she is there that all the kids love!
we are going back in Dec. it is her treat- she picked and we get to go and pay for it LOL

 

[LMC]

luvmarypoppins:
A high arched palate can be a number of things or maybe nothing (I have been told that my palate is high...and I think that I am relatively "normal" but some may argue). My oldest DS has a high arched palate and was diagnosed w/ a rare genetic syndrome a year ago. I believe there are a few syndromes that the arched palate can go with. For the first 8 years of his life, the doctors just said it was a high arch but after lots of other findings, we finally received a diagnosis. There is also an expander that the dentist can put in to help widen the palate. Good luck in your search! I know from experience how frustrating it can be looking for answers.

 

[mrsmom]

Hi, My dd 10 (My third child)was born with Pierre robin Syndrome, a combination of birth defect including cleft palete and small bottom jaw, she has had heart surgery and is going through her third palete surgery this fall, she had kidney reflux (repaired) and heart surgery and hearing loss. she is on a CPAP machine now she has alot more surgeries to go through but she's trooper , .

Kim

 

[SandrainNC]

Hi everybody! My DS who is 3 years old has Down syndrome. He is behind in his gross motor skills and fine motor skills (but not as much). He finally started walking this past November. He has low muscle tone which causes the delays in his motor skills. He still isn't verbal (except for his one real word - ma ma). We are looking forward to our first family trip to WDW in late November/early December. I know he won't get out of it what a typical almost 4 year old will get out of it, but I'm hoping he still has a lot of fun! He has not needed heart surgery for his very very small ASD (teeny hole between the atria in his heart - 45% of children with DS are born with heart defects). He gets asthma like symptoms when he gets colds and it is harder for him to get over colds than other children. He has been on breathing treatments since he was one, but we are getting ready to go off of them to see how he does. My little sweety is delayed mentally, but he is a smart little guy! Because he can't communicate verbally, it is hard to know sometimes what he wants or why he is upset and that can be very frustrating for us and for him. He knows a couple of signs, so that helps a little bit. He is definitely a sweet little boy, but when people say "people with Down syndrome are always so sweet" they do not know what they are talking about! Everybody with Down syndrome is an individual with a unique personality just like everybody else. My little sweety has quite a temper!

 

[Ducky4Disney]

This is a great thread. I love learning about all these conditions. I will have a different view of WDW and the people who visit.

My Mother is the disabled one in my family. The core of her problem is APLAS (anti-phospholipid anti-body syndrome). Years ago, my DM had a heel spur that her podiatrist recommended surgery for (in the office). The podiatrist botched the procedure and a few years and MANY surgeries later, she is an amputee (below the knee on the left).

The APLAS is a blood clotting disorder related to Lupus. Cell membranes are made up of phospholipids, if you have an antibody, that is ANTI-phosolipid - then it attacks your own cells. There are three basic types, one that causes venous clots (my DM has that), one that causes arterial clots, and a combination one. Women who develop this early (it's auto-immune) often suffer many miscarriages as their first symptom. DVT (deep vein thrombosis), PE (pulmonary embolism), and bleeding are all complications of APLAS. Wound healing is a problem because the capillary blood flow around the wound, clots off and closes down causing necrosis.

After the malpractice, DM underwent many surgeries to correct the wound and it wouldn't heal - no, she's not a diabetic. When amputation was the best option, that didn't even go well. She suffered a phlegmagia curlea dolens blood clot which is usually fatal - but she survived it. My DM can clot and bleed at the same time. She can have a PE and be hemorrhaging at the same time. She has to be kept anti-coagulated at all times, and if she is cut, may bleed to death.

WHEW! My DM is the strongest person I know. She has survived everything that has been thrown at her and isn't done yet. We have been to WDW together once and now that I own DVC, I look forward to taking her again. She can't walk or stand for long periods and we have to careful that she doesn't get bumped too hard or cut. Her meds bag could be a whole different carry on!

Thank you for this thread and for this wonderful outlet of information!

D4D

 

[autumnblue]

I have Limb Girdle Muscular Dysdrophy (Calpain 3), this type mainly affects the limbs but I do have some back and stomach muscle weakness. I was diagnosed at the age of 11 although I didn't have any real functioning problems until high school , I was a dancer since the age of 2 so it slowed the progression. After college I started using a wheelchair which really allows me to do alot more. I'm currently learning how to drive an adapted minivan and I'm longing for the independence that it will bring. I work at a college and one of my many job functions is providing accommodations to students with disabilities.

 

[coachYO & my 3 girls]

My DD 8 is my personal hero (I know many of us have heroes just like mine)

She has Tuberous Sclerosis

It is a genetic disorder which is benign tumors which can involve vital organs of the body, ie... your brain, heart, kidney, lungs, eyes and skin. The tumors may cause other health problems that are associated with epilepsy, autism, heart disease, cancer, facial skin deformities and developmental disabilites. TS is the largest know genetic cause of epilepsy and is the 2nd largest identifiabel genetic cause of autism. TS occurs in approximately 1 out of every 5,800 live births. Some people have gone their most of their life without ever having a diagnosis. Their is a very wide range of how people are effected. Some people have no negative symptoms at all as the tumors they do have are in positions that have no affect on them, others the positions are devastating. People who have had undiagnosed TS quite often find out because they have a child who is affected and is diagnosed and then that is when the parent finds out they have TS. Most TS people have seizures and depending on size and positioning they can be controlled well with meds, some people now are going the brain surgery route, the problem with this is that when the tumors are identified as the reasons for the seizures and are removed there may be others waiting to start again now that the stronger ones have been removed and these start causing seizures again.

My DD has many tumors in her brain and a few in her kidneys. She also has the tumors on her face called facial angiofibromas. Her siezures are not completly controlled with meds. We have done several med studies at Childrens Hospital here without any real improvement. She ahs had 7 laser surgeries on her face and we have one just scheduled today for the tues after we return from our trip in June. She is in a self contained special ed class and doing great! ADD and ADHD are also issues that accompany TS, which she also has.

Thats just a little info about TS and my little hero.

YO

 

[momof3disneyholics]

Wow, I am really learning alot here!
My 4 year old Ian, is autistic. He has a twin sister, Rachel, that is perfectly normal and is actually very advanced with her speech.
When Ian was 4 months old, he was diagnosed with tortocolis (spelling?). Basically, his muscles were really tight on one side of his neck and he would only face one way, like he couldn't turn his neck. He had OT till he was a year and was then was assessed and that was cured, but he wasn't reaching developmental milestones like he should. I figured he was just slow because he was 2 months early and had to deal with the whole tortocolis issues so I was happy that he was making milestones. When he started walking at 16 months I was so proud, I cried, but the therapist never had anything good to say. She was always being very critical and concentrating on what he wasn't doing as opposed to what he was doing. So shortly after, I quit services and worked with him on my own.
At about 2 years old, I noticed he wasn't talking, and doing things like walking around flapping his arms and spinning his sipping cups on the floor. When we moved to a new house that had ceiling fans he would just sit there for hours watching them. We were in the process of moving from Germany back to the U.S. when I saw a Dateline type program that had a segment on autism. They talked about the stereotypical symptoms of autism and what hey were describing was Ian exactly.
When we moved, I got him into OT, PT, and ST. At, 4 years old he now attends a pre-k that has a class just for autistic children.
He still doesn't talk, but coos and moans and laughs and cries. He knows a few signs. He knows how to tell me he is hungry and he hands me his sippy cup when he is thirsty. He is usually an easy going little kid, but like alot of autistic kids certain things will set him off. He hates to hear other kids screaming. We can't watch Blues Clues because he will get set off when they start singing. He can't handle being in a car seat for very long or sitting in one place like a high chait for very long. If he gets too tired he'll go off too. When he gets set off he will either bang his head till he bleeds, or if we grab him and try to hold him down he'll bite and scratch with all of his might. We can usually calm him down very quickly with a sucker or a paci, but sometimes we just have to hold him down till he stops.
His brother and sister are very understanding and are very helpful with keeping an eye on him if they are in the same room as him. They know he is different, but they don't say anything about it, because they know he is just their brother, and they always want to include him in things they are doing. He is like a toddler mentally, he still puts everything in his mouth, and he is still in diapers. He also craves sensory things. A therapist showed me how to rub his gums with a brush and how to massage his skin and how to hug him tight like he likes. He loves that.
He has recently learned how to hold a crayon and color and it just tickles him to do that. Contrary to alot of autistic kids, Ian loves hugs and gives us alot of eye contact.
I often wonder what the future holds for him. I wonder if he'll ever snap out of the cloud of autism. I like to describe autism as a switch that needs to be flipped on in their heads. If I could just figure out how to do it, he'd be a normal kid.
Thanks for reading, this is a great thread.

 

[dizzyintx]

This is a great thread. Thanks! My wonderful DH has neurofribromatosis. In his case it was inherited from his mother. He has many tumor including a plexiform on his neck and cheek causing a facial difference. He also has a plexiform tumor on his sciatic nerve behind his knee, which he is fixing to have taken out. So far (knock on wood) they have all been benigh.

I have secondary progressive ms and diabetes. I am on a chemo to stop or slow the progression and it is working.

We have 3 men whp live with us in fostercare. They have lived with us the last 7 years. They are all in the 40's and are developmentally delayed.

People stare when they see us, but we're use to it. We the ones that don't even care anymore. We are the ones having the most fun.

 

[SueM in MN]

I finally had time to readd this thread again, but I still don't have time to post. (anyone who has read my posts knows they go on for a while).
It is very interesting to read about everyone. I have to say as a nurse, that you are all doing a super job of explaining your/your children's conditons. You are all doing a great job of explaining really complicated things in an easy to understand way and also explaining how it affects your family as individuals.
Most medical people could not do as good of a job.

 

[mamajoan]

First off, I have learned SO VERY MUCH from all of your personal stories-case histories. Thank you so very much for sharing them with us.

I too have a pharmacy in my kitchen cabinet/refridgerator... lots of stuff going on or NOT going on in my body. Multiple health issues for me... However;
My mobility-disability is not congenital... it is due to survival of a horrendous auto accident nearly 5 years ago.

You see I was on my way to see a Physical Therapy Home Care patient in a very rural foothill area in California. Short story.. I hit a tree while reaching for a fallen chart and cell phone... I ended up on the side of a hill in a deep ravine for 3 hours with open fractures of my legs... it was 103 out on that lovely July day. I kept saying Our Fathers and blowing the flies away from my open wounds, in between screams for help of course... An angel found me and called EMS It was a difficult rescue but by midnight I was awaiting surgery at Stanford. I was pretty broken up all over my body.. multiple fractures,torn muscles, internal injuries and deep lacerations. The docs were going to amputate both of my legs.. which I had ok'd. I was surprised to find both my legs attached ... the docs said I would never walk again. Multiple surgeries, infections and Lots of rehab~ a year later I was able to walk very short distances with a walker or a cane and took my family to Disneyworld for the very first time.. and I utilized an ECV.. thanks to the folks on the DIS!!
Today I am able to use hand controls to drive my minivan. I use a powerchair for shopping etc. I am able to care for my family but I get alot of help from them for ADL's. My PT career is over. I have not re-entered the work force... maybe when the kids finish school. I move very slowly and deal with pain issues 24-7. I miss seeing patients, I still enjoy helping others with health issues. People ask me how I keep smiling... with all I have been thru in my life. There is so much in this world to be happy about and I am still enjoying life.

again.. thank you for taking the time to share yourselves.
Gotta hobble!
Joan

 

[alohacousin]

Our daughter, Kelsey has angelman syndrome. She has a microdeletion on the 15th chromsome 11-13q. She has severe mental retardation, ataxia, gtube, low muscle tone with the throat, seizures, under developed cerebellum,microcephaly, sensory difficulties, heat intolerable but her best trait is the constant happy demeanor. She doesnt feel toes stubbs, blood drawn, little mishaps but will cry if she falls hard. usually when we go out we do get the stares but most of the time its because of her laughter or constant chewing on her tubbie. We meet more people because of kels she just draws you in she can walk if she holds your hand but a very wide gait, but mostly we use her chair to transport. She is very active so we have trouble with weight even though she has a gtube. I was told by a therapist that kelsey probably couldn't handle the noice/crowds at wdw but its the opposite she is so happy, bounces on her bum with characters and MK/mgm rides. The character breakfasts are the best so disney is where we go , we just received her first special needs car seat for our trip to wdw on sunday and she loves it.

 

[Mike Bartenhagen]

Our son Broc has Infantile Spasms. He is now 2 and was diagnosed with Infantile Spasms at 5 and 1/2 months. IS is a form of pediatirc epilpsy. Broc has had 30 to 100 seizures per day for nearly two years but within the last month we have found a medication that appears to have given him seizure control. We are very excited about this. You can read more about him and see pictures at his website which is at infantilespasms.com

Mike

 

[mommie2angels]

Mike, HUGE hugs to you!!! Our dd#2 also had IS. We eventually got them under control. Vigabatrin and Lamictal were our miracle drugs. Hope you continue to have wonderful control!

 

[3DisneyNUTS]

My son was born with inutero strokes from complications due to Neonatal alloimmune thrombocytopenia aka NAIT. He had a severe brain hemmorrage between 36-38wks gestation and this was not detected until birth. He lost 2/3rds of his brain to the strokes. What that means is that the part of the brain that bled died from not getting any blood supply and eventually get absorbed by the body, it was replaced by cerebral spinal fluid. This gave him a secondary diagnosis of partial hydranencephaly which basically means water instead of brain.

His prognosis at birth was very bad. We were told he would be completely disabled and probably not live past 24 hours then they changed it to a year. He would die from something secondary like pneumonia. He would never see, hear, sit up, eat by mouth, walk, talk or even recognize us and everything else that a typical child would automatically do.

We were told "take him home and love him" and "enjoy the time you have with him"

We had therapists in our home the second he was out of the hospital and I nursed him hoping the brain building fats would help even if a little.

He started reaching his first year milestones on time, he even was the first to walk out of 2 cousins that were a month older and a month younger. He is now almost 4, a disney nut like his parents and he is enrolled in preschool and runs, jumps, and plays. Loves cheeseburgers,The WIGGLES, buzz lightyear, finding nemo, toy stroy.. anything Disney LOL. He has been to WDW 2 times and loved it so much we bought the DVC.

He currently has a speech delay, talks on a 2 year old level (*but his IS TALKING and started having seizures right before his 3rd birthday which are controlled with medication so they will not officially diagnose him with epilepsy, his neuro likes to say "he used to have seizures" since he will be seizure free for 1 year this Sept.

We are going through potty training hell and hope he will be trained by the time our cruise happens. Aside from what I mentioned if you saw him at a store a restaurant or at Disney you would never think he had an issue no less that he was born with only 1/3rd of the amount of brain you are supposed to have. Here is his website
http://www.babiesonline.com/babies/o/ourmiraclechris/

The one thing I have learned from him is to be more patient with a screaming baby/toddler/ 4 year old because it could be a set of parents like us who went through a devasting diagnosis with their only child who out of fear, depression or even happiness spoiled their kid rotten LOL so cut them some slack LOL

 

[CourtasanSatine]

May I pick the brain of anyone with diabetes(especially type 2).I'll know Thursday if my 18 year old brother has it but that's what I found out on Thursday

My sister has asthma and I have allergys to ragweed(usually pretty minor)

 

[BelleNBama]

I don't post here often, but I read regularly. 14 months ago I was hit head on my a drunk driver. The accident killed him and his passenger and crushed my right leg. My knee was rotated backwards, all the tendons, ligaments and muscles torn. I had a tibia plateau fracture where bone fragments were sheared into the knee cavity. My fibula was shattered vertically like several chopsticks lumped together. My foot was crushed with everything being shifted to the right side of my foot.

Going into my first surgery, there was a possibility that part of my foot would have to be amputated. They were able to save my foot but had to wire it back together. A few days later I had surgery on my leg. I had to have a complete knee replacement, a cadaver bone placed in the area of the tiba plateau fracture with an L plate. I have a regular plate on the left side of my leg. All total there are 20+ screws, rods, and pins in my leg. The orthopedic said it was the worst leg injury he had ever seen.

I was told from the beginning that my leg would never be "normal" again. I've had a few more surgeries since then and will have more in the future. I went through 10 months of physical therapy, 100 days of being non weight bearing, progressed from a wheelchair to a walker to crutches.

I can now walk unaided for short distances and short periods of time. I do walk with a limp and always will. I have constant pain in my foot/ankle joint area. Still, I consider myself very very blessed.

It's been quite an adjustment and although it would be very easy to feel sorry for myself and just give up, I refuse to do it. I'm determined to enjoy life and live each moment to the fullest. I've just had to learn to live life in a new way.

 

[3DisneyNUTS]

Belle I am so sorry this happened to you. I am so happy they were able to save your foot.