multiple children with multiple conditions

Karen - posted on 05/14/2011 ( 9 moms have responded )

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Hi, I have 3 children aged 10yrs, 3yrs and 2 yrs.

All of my children have Ehlers Danlos Syndrome type 3, Hypotonia, Multiple allergies, Bowel problems, Vonwillebrands Disease.

My 10 yr old son also has Asperges and dyspraxia and is being assessed for paddymal epilepsy and photosensitivity epilepsy.

My 3yr old son has Global developmental delay, High functioning autism, bells palsy.

My 2 yr old daughter has floppy laryanx disorder.

I was wondering if there was anyone out there that has children with any of these conditions. I dont know anyone else who has Ehlers Danlos syndrome type 3 and i am new to Global developmental delay.

Just feel alone at the moment and feel like im flying blind trying to help my kids.

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Dorothea - posted on 05/17/2011

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I have a 6 yr. old with CP, and global delays. I'm sorry I don't have any information on the other disability's, so I can't speak about them. I know that with Mike, the delays have been more of a pain for me than him. He's developmentally between 3 and 5 depending on what we're looking for. We see a developmental pediatrician at our local children's hospital. The Dr. has been very helpful in finding the right therapies and things for Mike. Good luck and know you are not alone.

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Karen - posted on 05/17/2011

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try a simple organic clean diet, esp gluten free, casein free, along with good filtered water, fresh air and exercise to help our disabled kids. There are no known bad side effects for that! Add some good therapeutic activities, prayer and get a support team together--a good pediatrician, biomedical intervention specialist, communication specialist, good pediatric neurologist and child development team. School districts should provide early intervention and state should provide care assistants and respite. Get SSI started and medicaid. These complicated children need lots of experienced eyes and you need help. Remember to celebrate small victories and give yourself some space to breathe. My prayers are with you....

Sherry - posted on 05/17/2011

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It is when the urine backs up into the kidneys when the bladder gets full, she is on a constant antibiotic to prevent infection.

Amy - posted on 05/17/2011

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Sherry ~ we deal with PKD & 34 kidney tumors both causing kidney failure. So I'm wondering what is "reflux of the kidneys"? Also had acid reflux, with no meds working, so tried & cured with ingestable liquid Aloe concentrate.

Sherry - posted on 05/17/2011

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I am also a mother of multiple children w/disabilities. My 13yr old has Asperger syndrome, dermographic uticaria, asthma, arthritis of the joints. My 12yr old has epilepsy. My 9yr old has Pervasive developmental disorder- NOS, stage 3 reflux of the kidneys, bowel problems, dermographic uticaria, and severe nose bleeds

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go to the National Center for Rare Disorders, and you will most likely be able to find other families with similar disorders.

Amy - posted on 05/17/2011

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I have 2 kids with a disorder called Tuberous Sclerosis Complex (TSC) and they are NOT Alike in most ways. My son looks pretty much normal but he has Aspbergers, OCD, learning disabilities, heart arithmias, low self esteem, skin issues, sleeping disfunctions and a benign tumor in his brain called a SEGA. His sister is "globally delayed" with daily seizures, non-verbal, wheelchair bound, scoliosis, feeding tube, diapers, kidney failure & 2 eye tumors that might someday effect her vision. I understand the layers you juggle. It helps to have the "umbrella diagnosis" even though we often stump the doctors. We travel across the country right now (about twice a year) to see specialists. Therapies are the saving grace in our household. Don't feel so alone & know that you are the most valuable part of the kid's medical team.

Erica - posted on 05/16/2011

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Hi, I think it's a good idea to get the genetic testing done. They can tell so much from them. It was really the one thing that gave us any answers - well, sort of! I'm not sure where you live but we live in New York and someone recommended to us that we ask our service coordinator if there were any services for at home respite. We did and we now get 20 hours of respite services in our house from a home health aide (who we found on our own and referred to the agency). It has been so wonderful to have the help. Maybe where you live they have something like that? Since I work full time it has really saved me. Today I couldn't send my daughter to school because she has been crying for 2 days and unconsolable. My respite aide was able to come over so that I could go to work for a few hours (so I don't lose my job!!). Hope you are having a better day today!

Karen - posted on 05/16/2011

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Hi Erica,

Thankyou so much for replying. Unfortunately I cant take anytime out as my 3yr old son is so emotionally attached that if im not around he has massive melt downs and self harms, the repercussion last for weeks so its not worth having the time out. My family isnt very supportive as the 2 boys are very full on and my 2 yr old daughter is constantly competing for attention so they wont watch the kids. Im am trying to get a doctor to give me a referal for genetic testing as my 3 kids have different dads and im the only link and just want to make sure that there is nothing else going on.

I take my hat off to you, your life must be very full on but i know that no matter what is thrown our way we love our children and will go to the ends of the earth for them.

Erica - posted on 05/15/2011

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Hi, I am so sorry you feel alone and I know some of what you are going through. I have 3 children (6,8,10) and my 6 year old is extremely disabled with multiple medical problems. There is no name for what she has but we know she has a rare chromosome disorder and she is still developmentally like a newborn, has epilepsy, chronic digestion issues, etc..I know how hard it is to want so badly to help your child but feel at times so helpless. I hope you can take some time each week just for yourself - even if its only for an hour to do something by yourself that you enjoy - that will help you re-charge so you can be strong for your children. Do you have family and/or friends around to help or give support?

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