X-linked reticulate pigmentary disorder

with systemic manifestations
Tyler Vansyckle
Administrator 06 February 2011 PDF Print E-mail

Tyler is Tom's Vansyckle older son. He was born 12 october 1990.

tyler-03Tom says about Tyler:

Tyler came into this world with back swept hair, his fingers and toes were webbed, as well as a bad case of jondus. He was in the hospital for two weeks and out for two with pneumonia. This went on for two yrs. With only being home a couple of times for a month or two during that time. The doctors tried to do sweat tests, but they couldn't get a good test. Threw all of this we were told he had CF. When Tyler was about 4 he started to have this blotchy skin color on the truck of his body. He had always had to watch the heat of the day as he never sweats and the light hurt his eyes. Just about this time he started to be more healthy and was doing very well. He was about 7 yrs. old when we realized he was not seeing what he should. He had many surgerys but when he was 13 he was leagally blind. Around that time we were very greatful to meet Dr.Robin Carder, who finally told us that this wasn't CF but X-linked pdr. Tyler goes into the hospital once a yr. for a pulmonary tune up.

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As I think back on my kids medical history, it's easy to point out mistakes that have been made. Things that should have been done or that should not have been done. Doctors that sometimes treat you like your just the dumb parent. Gilt for not being a strong enough advocate for your child. I wish that I had all of the answers, heck I wish I knew the question sometimes. (lol) For every doctor that has not been there for me and my children. There has been 10 times that standing there wanting to help and do right by my family. Somethings work some don't, some have great results and others do not. If things that my family have gone throgh can help in anyway we are here. Rather it is that this medication worked or didn't, this surgery did or didn't. Or just the feeling that your not the only one in the world. That is going threw this or has ever felt this certain way.

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Tyler the oldest has more problems then spencer. We over the years before we knew better would have lazer surgery on tylers eyes. Before that we had several cornia scrapings done to clear his vision. Spencer has never had any of this done. The Doc. that we see now for his eyes has been treating both boys now for almost 10 yrs. As a result both boys have lost some ground in vision, but not near what they might have.

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The thin layer of skin that covers our eyes protects the cornia. Tyler and Spencers are not tacted down on the eye. So as result the tissue slides around on the eye. Sometimes this rolls on its self and causes nodules. Small bumps that then harden and blocks the line of sight. The treatment for this is to keep the eyes moist. To prolong the life of the cornia. So that beter techonolgy can be developed and less chance of a cornia transplant rejection. Therefore the treament that we follow is.

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Tyler was having reflux so bad when he was two, that he was given a gastric tube(g-tube). He had been given gi meds before that, but didn't seem to help. After the g-tube was put in we started the night feedings. 2 cans of formula a night on a kangaroo pump. This was almost 600 calories a night. He finally got the tube taken out when he was 13 yrs old. When he was about 5 or so we would just boulis feed him through the tube. This is where you just let gravity pour it in his belly instead of the k-pump. Ty is now 5' 11" tall and weights about 160 lbs. When he is at his best he is as strong as I am. He is still on a high carorie diet as he burns more calories than many do just breathing. Spencer has had a silmular fight but not with the same results. As i said he is still very skinny but he hasn't had all of the reflux. Spencer got a g-tube for about 2 yrs but didn't do any good so it was removed. This Tyler didn't think was fair, but was happy for his brother.lol

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When Tyler was about Alex's age. He got to where if he saw you coming towards him with a spoon he would just have a fit. He connected that the spoon was what made him get sick and throw up. We would give him small flavored lollipops,but they were made from different textures. More like spounge pops. He started to get use to chewing on them. From that we gave him a spoon of peanut butter,spoon dipped in chip dip. Just anything that would get him to put food in his mouth. We had a lot of finger food like celery,carrots and radishes. Then one day he just started eating like the rest of us. There are supplements such as boost, pediasure,and scadical. What really worked for Spencer was the Carnation instant breakfast power.

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The boys do not have any ceiling fans or fans of any kind in their room. They ware sealed sunglasses to keep the wind from drying out their eyes. They take omega 3 fish oil twice a day. They do a lot of eye drops RESTASIS, AZASITE, LOTEMAX, THERATEARS, AND THERATEARS GEL. The Azasite is 1 drop in each eye in the am. The Restasis and Lotemax is 1 drop each eye twice aday alternating them. The Theratears and Theratears gel are over the counter meds and are both givin 1 drop in each eye 4 times a day, doing the gel last everytime. We have found that keeping the gel cool it stays on he eye longer so we keep it in the refrigerator.

 

tyler-04Tyler says about himself:

Hi everyone my name is tyler vansyckle i have XL PDR you are welcome to ask me anything you want. I am very open about my disease. (...) Well my name is tyler vansyckle. You have been talking to my dad (tom vansyckle) about XL PDR. I am a very active person. I like tylersFootThumbto swim. I like to draw. I love animals. Mostly dogs. Lol. I like to skateboard and ride bikes and basically explore the world when i have nothing to do. Im a very adventureous person. I like to make people laugh and smile. I have a very good sense of humor. I do not let my disease hold me back. My brother and I deal with our disease differently. Everybody has a body and every body has a certant way of dealing with diseases. I hope i have helped. Ask me anything anytime ^_^

(...) i you guys an see my four toes are webbed togather as my dad was explaining

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Click here to see Tyler's pictures

Note: this story is a work in progress. We thank Tom to post updates on our facebook group. Every information about Tyler has been taken from the Facebook group.