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October 14, 2005, 10:41 pm PDT

Raising a Special Needs Child

I recently gave birth to my third child. My first one was healthy, but now has emotional problems. My second one was emergency c-section and almost died, but is now a healthy, vibrant child. My third girl, seemed to be healthy at birth, no problems, but at eight hours old she developed blisters and scabs all over her face, hands, feet, ears and bottom. The skin on her bottom fell off. The staff at the hospital had no idea what was wrong. Immediately following our discharge from the hospital, we were rushed to Children's Mercy Hospital, a local pediatric hospital in our state. Izabellah's doctor diagnosed her with EB, a rare genetic skin disease, in which children has a shortened life expectancy, almost always ending in death. They don't die from EB, they die from complications, infections, especially staph infections. The doctor told us to count our days with her, that he believed she had one of the worst forms, where she would not live to see her second birthday. He said she would need to have skin biopsies to determine her exact sub-type of EB. In order to do so, she had to have a blister that was intact. We came back two weeks later where we discovered she had no recurrences of blisters, the doctor was unable to biopsy. That was four months ago, and I still don't know the fate of my child. The doctor has then since said that he doesn't believe she has a fatal case, but it isn't definite. My main purpose for writing is to get the word out about EB, which I believe is one of the silent epidemics. There is a website you can go on to learn more, and it is www.debra.org Thank you for reading and feel free to respond

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tutumonstr

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October 14, 2005, 10:44 pm PDT

whoops

Quote From: tutumonstr

I recently gave birth to my third child. My first one was healthy, but now has emotional problems. My second one was emergency c-section and almost died, but is now a healthy, vibrant child. My third girl, seemed to be healthy at birth, no problems, but at eight hours old she developed blisters and scabs all over her face, hands, feet, ears and bottom. The skin on her bottom fell off. The staff at the hospital had no idea what was wrong. Immediately following our discharge from the hospital, we were rushed to Children's Mercy Hospital, a local pediatric hospital in our state. Izabellah's doctor diagnosed her with EB, a rare genetic skin disease, in which children has a shortened life expectancy, almost always ending in death. They don't die from EB, they die from complications, infections, especially staph infections. The doctor told us to count our days with her, that he believed she had one of the worst forms, where she would not live to see her second birthday. He said she would need to have skin biopsies to determine her exact sub-type of EB. In order to do so, she had to have a blister that was intact. We came back two weeks later where we discovered she had no recurrences of blisters, the doctor was unable to biopsy. That was four months ago, and I still don't know the fate of my child. The doctor has then since said that he doesn't believe she has a fatal case, but it isn't definite. My main purpose for writing is to get the word out about EB, which I believe is one of the silent epidemics. There is a website you can go on to learn more, and it is www.debra.org Thank you for reading and feel free to respond

I didn't realize my mood claimed I was angry. Sorry, not angry.

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aspiemom1

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October 15, 2005, 10:04 am PDT

Bless your heart!

Quote From: tutumonstr

I recently gave birth to my third child. My first one was healthy, but now has emotional problems. My second one was emergency c-section and almost died, but is now a healthy, vibrant child. My third girl, seemed to be healthy at birth, no problems, but at eight hours old she developed blisters and scabs all over her face, hands, feet, ears and bottom. The skin on her bottom fell off. The staff at the hospital had no idea what was wrong. Immediately following our discharge from the hospital, we were rushed to Children's Mercy Hospital, a local pediatric hospital in our state. Izabellah's doctor diagnosed her with EB, a rare genetic skin disease, in which children has a shortened life expectancy, almost always ending in death. They don't die from EB, they die from complications, infections, especially staph infections. The doctor told us to count our days with her, that he believed she had one of the worst forms, where she would not live to see her second birthday. He said she would need to have skin biopsies to determine her exact sub-type of EB. In order to do so, she had to have a blister that was intact. We came back two weeks later where we discovered she had no recurrences of blisters, the doctor was unable to biopsy. That was four months ago, and I still don't know the fate of my child. The doctor has then since said that he doesn't believe she has a fatal case, but it isn't definite. My main purpose for writing is to get the word out about EB, which I believe is one of the silent epidemics. There is a website you can go on to learn more, and it is www.debra.org Thank you for reading and feel free to respond

You are right to educate all of us about EB. I never heard of it. I saw recently where some people have allergic reactions to antibiotics where they lose their skin, but didn't know of the genetic disease you are talking of. That is so sad and I hope the doctors are able to give you encouragement soon. You've been through a lot of heartache in your life. Have you been able to meet parents of other children with EB?

I try to get people educated about glyconutrition. These nutrition supplements have been a God-send to our family and I'm so glad someone told me about them. In turn, I try to risk being ridiculed and tell others about them when I hear of these diseases and illnesses. Especially when people have little hope from the medical world. (I have Adult CF, which is genetic, and my son as Aspergers/ADHD) I know people come out of the wood-work with all kinds of remedies they are sure will help - we've gone through that. The medical field is learning more and more about glyconutrition and the wonders it does in giving the body the tools it needs to repair itself. If you would like more info you can check out www.glycoscience.com and you may always email me.

With three children and two having difficulties (emotional and physical), you certainly have your hands full. Come to the board whenever you can!

Blessings, Deb

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calliegal

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October 15, 2005, 6:50 pm PDT

Sorry Aspie Mom

Quote From: aspiemom1

I think you need to work on your approach a little. I am not new to this. I am very educated about it. (I am educated, period!) I also know what is best for my child and home schooling is working great for us. You can't say, across board, that Asperger children should not be homeschooled. Each person needs to evaluate their situation, what is available and decide what is best for their child and family. You are not very educated about homeschooling, by the way. My child is not socially deficit. Some people seem to think that formal schools are the only way for a social life. If bullying my child, teaching him obsene things, forcing him to learn in ways that he does not learn so he is beside himself with frustration, we can do w/o that kind of socialization. We belong to a homeschool group and he is with those kids when we meet as a group, he also has play dates we set up. Maybe at the time I posted things were different - I know it was a while ago.

There is a large group of people who homeschool their Aspie children. I belong to a Yahoo Group that is full of them. It is only for people who homeschool their Aspie kids and there are hundreds of members. And they all seem happy with how it's working for them. We can teach our children in a way that they are wired. My son's doctors think it's great that I am homeschooling him, by the way, and they are specialists in Autistic Spectrum children.

My son has seen a counselor once a week for the last few years. She helps him act out different situations and ways that things can be addressed, plus he can talk to her about his feelings. And I HAVE been seeing the counselor on my own about once a month for quite a while.

My son is also taking glyco-nutritional products and I've seen a huge difference since taking these. He used to be on anti-depression/anxiety medicine and was on Strattera. He is now free of all pharmaceutical medicine, with his drs. blessing. He is no longer hyper, rarely impulsive, he is no longer depressed, doesn't get frustrated very easily anymore. He is no longer obsessive compulsive, he can handle changes, he can follow more than one direction at a time now - he's doing great.

I think you meant to be helpful to me after reading an old post. However, you came across as having all of the answers and I took offense to that. I especially have a hard time with anyone telling me that I shouldn't be homeschooling my son. We've homeschooled for 4 years now and it's the best answer for us.

Then I don't understand what your original problem was about. You sounded upset, frustrated and at ends. This is what I was responding to. In this big world, there will always be people who have a counter opinion to yours. I gave mine. It was up to you to let it roll off your back, or make assumptions about me and attack me. And you have. I don't have all the answers. You made that assumption, not me.

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tutumonstr

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October 15, 2005, 8:05 pm PDT

Thank you for responding

Quote From: aspiemom1

You are right to educate all of us about EB. I never heard of it. I saw recently where some people have allergic reactions to antibiotics where they lose their skin, but didn't know of the genetic disease you are talking of. That is so sad and I hope the doctors are able to give you encouragement soon. You've been through a lot of heartache in your life. Have you been able to meet parents of other children with EB?

I try to get people educated about glyconutrition. These nutrition supplements have been a God-send to our family and I'm so glad someone told me about them. In turn, I try to risk being ridiculed and tell others about them when I hear of these diseases and illnesses. Especially when people have little hope from the medical world. (I have Adult CF, which is genetic, and my son as Aspergers/ADHD) I know people come out of the wood-work with all kinds of remedies they are sure will help - we've gone through that. The medical field is learning more and more about glyconutrition and the wonders it does in giving the body the tools it needs to repair itself. If you would like more info you can check out www.glycoscience.com and you may always email me.

With three children and two having difficulties (emotional and physical), you certainly have your hands full. Come to the board whenever you can!

Blessings, Deb

Thank you for responding. I was actually kind of nervous to post anything, not knowing what to expect. I sincerely believe the quote "What doesn't kill us, makes us stronger". My husband and I have gone through quite a few trying times. Our oldest Celeste is the one with the emotional concerns. Her pediatrician says she has an offensive disorder and a reactive disorder, but since my husband recently joined the army, our insurance is kind of up in the air for any type of treatment. Miss Faith was the emergency c-section, when she was being pulled out she inhaled her meconium, and in turn, was under an oxygen tent and IV. She was 2 weeks early and only weighed 4lbs. 15.9 oz. They performed the c-section because her heartrate dropped from 160 to 80 with every contraction. I do pray for Izabellah to live and be a healthy happy child. It hurts so bad to see a 4month old in pain so often, and if I could, I would take this disease on in a hearbeat. Unfortunately, she stayed the night at her grandma's last night (my mother in law) and she wiggled herself up to the top of a queen size bed and fell off and hit her head on the bed frame. Why she wasn't in her playpen(which she has one there), I don't know. Last weekend she put elastic socks on her and caused a blister to form. Any type of tight clothing, friction, rubbing, fragrances, pretty much anything that we use, or even baby cleansing items can cause blisters. At each diaper change she must be slothed in vaseline, her clothes have to be a size bigger than what she is in to prevent blisters. She is my miracle, but it's hard to see my other two girls want to touch her and love on her and I really don't let them for fear of her getting hurt.

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101160

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October 15, 2005, 8:38 pm PDT

Raising a Special Needs Child

Hi i saw this and right away wanted to post here.my sister in law has to be the strongest woman live today.her and her husband have ten kids .they all have gone through school except for two.she has had it hard also .one of her kids almost dies from menigitis and wass left a little slower to progress .now she looks after everything at home her husband is no help whats soever but wants the glory of the way his kids are raised not his doing for dam sure.It was all her after she had her second last bably ,her dr. told her not to have anymore because she was at risk of dying or the child not being born without anyhandy cap.well what does she do gets pregnant and not her fault either he does not believe in birth control so they were just cautious ,huh !not cautious enough.well her last baby was born with downs first off.then when she was 8 months old had open heart surgury new this when she was born with a heart defect.then if that was not enough she (the baby)gets a bacteria ecoli poisoning not much older maybe a year or so now her husband takes her to hospital baby was airlifted to hospital out of province ,he takes her there waits for some of us to get there and he leaves and comes home.Now his child is fighting for her life and the docs said because she had downs thats what saved her they fight harder than any normal child would so she my SIL is there herself at hospital and hes home working .can leave when he wants has no excuse not to be there the other 9 kids at home were all well looked after and he stays home.anyhow she escaped that one by the skin of her teeth.but thats not all than because she was so sick from ecoli she is now a diabetic inssulin 4times daily maybe a little less now that she is older.M y SIL has to learn how to give her needles and manage her diet and look after the house and other kids he comes home from work go to bedroom and watches tv.now this little walking miracle has just the fight to live ans she wasn't going out without a fight either.now she's in grade1 almost can talk quite a few words thaanks to my SIL goes to school knowing her ABC'S THANKS TO MY SIL, KNOWS NO#UP TO TWENTY THANKS TO GUESS WHO AND LOOKS AFTER ALL THE REST IN BETWEEN.BOY WOULD I EVER LOVE TO OWN HIM FOR A DAY HE'D LAY IN BED AND WATCH TV ALRIGHT.BUT YET IF THERE IS ANY FUSS MADE TOWARDS THEIR LITTLE MIRACLE HE IS RIGHT THERE TO GRAB THE GLORY.NOW THATS A MOTHER.

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aspiemom1

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October 16, 2005, 12:13 pm PDT

Callielegal

My apologies that I came across so strongly. You are right that we each have the right to our opinions and we've both stated ours now. Mostly I was set off by the inference on the board that homeschooling is wrong for someone parenting an Aspergers child. I don't want anyone reading that and writing it off because there are many pro's and we're very happy with our decision.

My post that you were responding to was dated back in July, some 3 mos. ago. Back then we were going through a rough time. The adjustment in nutrition is what helped us back out of that hole. I had another post later that month that you may not have read.

I hope your diary will be helpful to many. Best wishes.

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aspiemom1

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October 16, 2005, 12:16 pm PDT

lucky child

Quote From: 101160

Hi i saw this and right away wanted to post here.my sister in law has to be the strongest woman live today.her and her husband have ten kids .they all have gone through school except for two.she has had it hard also .one of her kids almost dies from menigitis and wass left a little slower to progress .now she looks after everything at home her husband is no help whats soever but wants the glory of the way his kids are raised not his doing for dam sure.It was all her after she had her second last bably ,her dr. told her not to have anymore because she was at risk of dying or the child not being born without anyhandy cap.well what does she do gets pregnant and not her fault either he does not believe in birth control so they were just cautious ,huh !not cautious enough.well her last baby was born with downs first off.then when she was 8 months old had open heart surgury new this when she was born with a heart defect.then if that was not enough she (the baby)gets a bacteria ecoli poisoning not much older maybe a year or so now her husband takes her to hospital baby was airlifted to hospital out of province ,he takes her there waits for some of us to get there and he leaves and comes home.Now his child is fighting for her life and the docs said because she had downs thats what saved her they fight harder than any normal child would so she my SIL is there herself at hospital and hes home working .can leave when he wants has no excuse not to be there the other 9 kids at home were all well looked after and he stays home.anyhow she escaped that one by the skin of her teeth.but thats not all than because she was so sick from ecoli she is now a diabetic inssulin 4times daily maybe a little less now that she is older.M y SIL has to learn how to give her needles and manage her diet and look after the house and other kids he comes home from work go to bedroom and watches tv.now this little walking miracle has just the fight to live ans she wasn't going out without a fight either.now she's in grade1 almost can talk quite a few words thaanks to my SIL goes to school knowing her ABC'S THANKS TO MY SIL, KNOWS NO#UP TO TWENTY THANKS TO GUESS WHO AND LOOKS AFTER ALL THE REST IN BETWEEN.BOY WOULD I EVER LOVE TO OWN HIM FOR A DAY HE'D LAY IN BED AND WATCH TV ALRIGHT.BUT YET IF THERE IS ANY FUSS MADE TOWARDS THEIR LITTLE MIRACLE HE IS RIGHT THERE TO GRAB THE GLORY.NOW THATS A MOTHER.

It sounds like your niece is very fortunate to have your SIL for a mother. She sounds like a mother that has a lot on her plate and yet she will do whatever needs to be done. It is very unfortunate that her husband is not a participating member of the family. Sounds like a situation for a Dr. P show!!!

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aspiemom1

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October 16, 2005, 12:25 pm PDT

Loving touch

Quote From: tutumonstr

Thank you for responding. I was actually kind of nervous to post anything, not knowing what to expect. I sincerely believe the quote "What doesn't kill us, makes us stronger". My husband and I have gone through quite a few trying times. Our oldest Celeste is the one with the emotional concerns. Her pediatrician says she has an offensive disorder and a reactive disorder, but since my husband recently joined the army, our insurance is kind of up in the air for any type of treatment. Miss Faith was the emergency c-section, when she was being pulled out she inhaled her meconium, and in turn, was under an oxygen tent and IV. She was 2 weeks early and only weighed 4lbs. 15.9 oz. They performed the c-section because her heartrate dropped from 160 to 80 with every contraction. I do pray for Izabellah to live and be a healthy happy child. It hurts so bad to see a 4month old in pain so often, and if I could, I would take this disease on in a hearbeat. Unfortunately, she stayed the night at her grandma's last night (my mother in law) and she wiggled herself up to the top of a queen size bed and fell off and hit her head on the bed frame. Why she wasn't in her playpen(which she has one there), I don't know. Last weekend she put elastic socks on her and caused a blister to form. Any type of tight clothing, friction, rubbing, fragrances, pretty much anything that we use, or even baby cleansing items can cause blisters. At each diaper change she must be slothed in vaseline, her clothes have to be a size bigger than what she is in to prevent blisters. She is my miracle, but it's hard to see my other two girls want to touch her and love on her and I really don't let them for fear of her getting hurt.

It hadn't occured to me that your baby isn't able to have all of the TLC that babies usually get. That's awful. Little innocent babies you just want to smother with affection and make them feel wanted and secure, but you can't do that with yours. You said you can't let the big sisters touch her, but can you and your husband? Are you able to pick her up much? Does she cry a lot?

I went to the site you mentioned and read a little. What an eye opener. I told my husband about it and he had never heard of it, either. That's too bad that your MIL didn't have her in a safer spot and she got hurt. Sounds like she needs some education about what can cause the blisters, too.

It is unfortunate that we live in a day and age where we have to chose between going into debt or getting the medical treatment you need, just because of health insurance. I believe health insurance was started to HELP us but somwhere along the line they have become more of a problem.

I'm glad you felt like you could post here and hope to hear from you some more.

Blessings, Deb

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tutumonstr

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October 16, 2005, 2:38 pm PDT

Raising a Special Needs Child

Quote From: aspiemom1

It hadn't occured to me that your baby isn't able to have all of the TLC that babies usually get. That's awful. Little innocent babies you just want to smother with affection and make them feel wanted and secure, but you can't do that with yours. You said you can't let the big sisters touch her, but can you and your husband? Are you able to pick her up much? Does she cry a lot?

I went to the site you mentioned and read a little. What an eye opener. I told my husband about it and he had never heard of it, either. That's too bad that your MIL didn't have her in a safer spot and she got hurt. Sounds like she needs some education about what can cause the blisters, too.

It is unfortunate that we live in a day and age where we have to chose between going into debt or getting the medical treatment you need, just because of health insurance. I believe health insurance was started to HELP us but somwhere along the line they have become more of a problem.

I'm glad you felt like you could post here and hope to hear from you some more.

Blessings, Deb

We are able to hold her and pick her up often, although there must being clothing in between her and us. As far as crying, which isn't as often now as when she was newborn, if I feel she is in pain, a bit of pain reliever does the trick. The only reason I really don't allow the other girls to play and hold is is because I am afraid they would accidently hurt her. Kind of over-protective, yes, but I have to be in order to prevent sores.

I agree about the insurance problems we have today in society. Our whole issue was switching insurance from an expensive type to a non expensive trype. Now, our insurance wasnt to diagnose us first before treatment, regardless of what our medical history states.

-Deirdre

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Topic : Raising a Special Needs Child

Raising a Special Needs Child

whoops

Bless your heart!

Sorry Aspie Mom

Thank you for responding

Raising a Special Needs Child

Callielegal

lucky child

Loving touch

Raising a Special Needs Child