does anyone have a child with epilpsy,developmental delay and abnormal white matter on the brain

[deleted account] ( 22 moms have responded )

hi this is the second group ive joined im also on the seizures mums circle.i have a 16 mnth old boy who has epilepsy,developmental delay and on his mri scans there is a show of abnormal white matter on his brain.he has all the tests going and still so more to go its so hard to see a little one go through so much.i jus wanted to knw if anyone has a child that has been or going through this ,the doctors have told us things wont be diagnosed until he is alot older around the age of 3-4,if any one can give us and information or help and suport that would be great.thanks

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Donna - posted on 09/04/2009

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Hello! I have 2 wonderful children a very handsome typical 16 year old and an absolutely precious daughter with several disabilities. My daughter began having seizures at 4 months old(infantile spasms-increased white matter on the brain). Today she is 11 and still has 6-8 seizures a day, is cortically vision impaired,is tube fed,non verbal and unable to walk. She has profound mental retardation. Until 18 months ago she had no diagnosis. Our neurologist said and I've read in many places, that when 3 systems,organs,etc are involved and there is no diagnosis THINK MITOCHONDRIAL. Annelizabeth was diagnosed through a muscle biopsy with a complex 3 mitochondrial disorder. There is no cure,but the 2 supplements they have given her have helped her. NO great changes,but she's more alert.less floppy, and and focusing a little better.Because I knew someone who knew someone, Annelizabeth's services have come without much advocating,but that seems to be the answer.Get prepared,have all your facts and information in order and then never give up advocating for your little-or big -one.

Though it won 't help with your services or changing the fact that your child has several challenges,keeping my faith is what has kept me sane. I really believe that my daughter is a sign of God's' grace in the world. She is so simple and beautiful that she puts smiles on the faces of everyone she meets.

Julie - posted on 08/27/2009

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Morning,

My name is Julie Venner from South Africa. In 1998 I had a little boy by the name of Tristan he was a very healthy strong boy... In the December of 1999 my son got sick. One morning I went to check on him cause it was strange he was still sleeping.. He wasn't he was just lying there, so I picked him up and well he couldn't evern sit.. I tried to give him some rice cereal.. Then I phoned the doctor and went striaght there.. His first fit I saw was luckily in the doctor's rooms.. And boy it was tough... After up and down during the Christmas season and specialist being away and being numb, I was lost.

Then a lovely doctor one day turned to me honestly and said I can't help you, you need to see a serious specialist..

Which he put us onto. After medication after medication, test after test, blood test and more blood test and nothing working and the sizures still bad I was loosing hope.. Unfortunatley I was married but well my husband wasn't a big part of all of this..

Then the day came that my son got diagnosed with the Lennox Gasto Syndrome.. All it really means is that when he's relax he fits.. Opposite to most other epaleptics..

The druggs got more and more and eventually we wouldn't up any doses anymore..

The next step the ketogenic diet.. It's not easy but it works and I believe in it.. Watch the movie Lorenzo's Oil, it helps.

Unfortunatley for me my son passed away the morning of the 2nd of June 2000.

I was unprepared for it and one thing that nobody ever told me was that little people can die from Epalepsy

I know that everone did there best for him and i would like to help and Mom or Dad that needs help.

I have kept all the info on the diet and worked out plenty of meals for him.The dietitians that we saw gave us meals that were uneatable.. But being a mom I spent many hpurs researching it and came up with a large file full of daily planned meals.

I am her for any Mom who needs to chat or would like some help on the Ketogentic diet.. I believe in it and believe it gave us a little extra time with Tristan.

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Davina - posted on 09/03/2009

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hi my name is davina im a mum of 2 girls chloe 7 soon who has a unsteady git and lucy whos 6 soon who as an deve delay the docters have stop seein here now n are goin get a nurser person come out now n again to help me thats the only help me n my partner r goin get carers take chloe out for 2 hours once a month its very hard to look after lucy cuz she hurts her self she slaps pinces n punches her self n head butts wall do u have help from carers davina x

Rhonda - posted on 09/03/2009

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Quoting teigan:

does anyone have a child with epilpsy,developmental delay and abnormal white matter on the brain

hi this is the second group ive joined im also on the seizures mums circle.i have a 16 mnth old boy who has epilepsy,developmental delay and on his mri scans there is a show of abnormal white matter on his brain.he has all the tests going and still so more to go its so hard to see a little one go through so much.i jus wanted to knw if anyone has a child that has been or going through this ,the doctors have told us things wont be diagnosed until he is alot older around the age of 3-4,if any one can give us and information or help and suport that would be great.thanks



yes teigan hi im rhonda fuller i do have 3 children and my husb all with epilepsy a 16 years old boy with brain damiage in the hepercampal (the learning area , a 12 year old b a bit slow learning, and a 5 year old girl thats just been dieanosed 12 month ago so i know how you fill i need help too rhonda

Samantha - posted on 08/28/2009

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hi teigan ,

my daughter Brooke has epilepsy and developmental delay she is now nine and out the other end of most scans!!this is a scarey time and now how you feel my girl was finally diagnosed earlier this year with a genetic abnormality that is so rare at this time they belive she is the only child in the world diagnosed at this time and atthis time has no name!! so 4 many yrs know i've felt very alone!! but the good news is there is light at the end of the tunnel,between seizuresand dislocated hips and just trying to get her to talk it's been a very long rd but were getting there and u will tooo!! good luck !!!

sam Gillen

ANDREA - posted on 08/24/2009

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HI MY SON IS SEVEN NOW HAE STARTED HAVING SEIZURES AT AGE 2. HE WAS DIAGNOSED WITH EPILEPSY AT AGE 2. HE IS SEVERELY DEVELOPMENTALLY DELAYED AND HAS A SPEECH DELAY.. HE DOESNT TALK. HE TO HAS WHITE MATTER ON HIS BRAIN. THEY CALL IT A BRAIN MYLENATION. I WAS TOLD THE CONDITION IS NEVER GOING TO CHANGE,

[deleted account]

I don't know if this helps, but I'm 45 years old and have lived with epilepsy since I was 13. I am on a low dose of phenobarbital and have been for 32 years. My last seizure was 13 years ago, but I stay on the meds because the three times I tried to reduce/go off them, I seized. I live a normal, happy life and my condition does not affect me. It is just part and parcel of being me. Epilepsy is not the end of the world.

[deleted account]

thank you to everyone who has left me a post,u all have given me and my family hope that things will be achieved if we jus makesure that we are heard bythe right people were taking all ur advice and looking into and researching all possibilities.thanks again to u all for the kind words and support.

Cheri - posted on 08/23/2009

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I have a 19 year son with cerebal palsy. When he was around a year old a neurologist at Children's hospital diagnosed him with leukodystrophy d/t what was shown on the MRI, he was then referred to PT,OT and speech therapy(my son also has a profound hearing loss). After several months of all these therapies he began to show improvement, therefore his diagnosis was changed to CP.He does well now, walks, rides a 3 wheeled bike, he recognizes and writes a few words.

All I can say is keep pushing until you get what your child needs. My son was 11 months old before anyone(Doctors) would even acknowledge that everything was not perfectly normal. Which delayed him receiving the therapies, and getting enrolled early intervention programs.

Jennifer - posted on 08/21/2009

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My son is 6 and has all the above and is also medically complex. He has had two strokes, but has finally received a Mitochondrial Myopathy DX (non-specific). The brain is a bit tricky to fully dx, because there is still a lot that is not understood about it. Hugs to you and hope the process to finding answers is quick. Def. check early intervention in your area and get him into therapies.

Gretchen - posted on 08/21/2009

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Hi my name is Gretchen and I have 2 year twins. My son Caleb has been through all of that so I totally understand. This is the first group I have joined and I have been in need of support myself it is a very hard and long process. Part of his brain never fully developed and because of that he has constant seizures and his development is at a 3-6 month stage. I have fought so hard to get the few answers that I have and they don't know what to say. They told me he may never walk or talk so I do it all for him. It is so hard to see what he goes through and than to watch his twin sister thrive and look at him with those eyes of confusion when she just wants to play with her brother. It amazes me how strong our little ones are much stronger than I sometimes. I am so happy that I joined.

Lacey - posted on 08/20/2009

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 Quoting teigan:

does anyone have a child with epilpsy,developmental delay and abnormal white matter on the brain

hi this is the second group ive joined im also on the seizures mums circle.i have a 16 mnth old boy who has epilepsy,developmental delay and on his mri scans there is a show of abnormal white matter on his brain.he has all the tests going and still so more to go its so hard to see a little one go through so much.i jus wanted to knw if anyone has a child that has been or going through this ,the doctors have told us things wont be diagnosed until he is alot older around the age of 3-4,if any one can give us and information or help and suport that would be great.thanks



My daughter is a 19 month old that has been diagnosed with Congental Cytomegalovirus (cCMV) She has white matter on the brain, CP and is Deaf in both ears. Have your son been tested for CMV?

Beth - posted on 08/12/2009

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There is also Moms of epileptic/seizure disorder kids. That might be helpful as well!

Beth - posted on 08/12/2009

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Hi Teigan,
I have a 15 month old, Gage, that stated having seizures at 6 months old. His MRI showed white matter on his brain as well, but his Neurologist at the time called them Leisions. He is also a very medically complex child, with numerous medical issues, not just the seizures. I have read in many places that a large percentage of people with seizures never have an exact diagnosis for the seizures. My little man is on 4 different seizure medications that he takes twice a day, and still continues to have seizures almost daily. He is very delayed in his milestones. He still does not have full head control, doesnt sit on his own, and a very weak upper body. It is heart breaking as a parent to see everything that your child is going through, and feel absolutely helpless because there is nothing I can do to take his pain away. I search the internet daily looking for as much information as I can, not only for his seizures, but his other conditions as well. There are alot of options out there, and I will not give up. Good luck with your little guy, and just take one day at a time!

Ã…se - posted on 08/11/2009

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My daughter has abnormal white matter on her brain and a cerebral pares to .the doctor told us that the white matter was a sign of CVI. a kind of braindamage that makes your eyes bad. you can see but not understand fully . Hard for me to explain in english. hope you understand and can learn some more . Hang in there. Åse

Amy - posted on 08/09/2009

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What is abnormal about the white matter? My daughter has Leukodystrophy, and all those things are part of that.

[deleted account]

Teigan,

I work with children who have similar health concerns daily! As hard as it seems now, just take it day by day! You can not try to guess what will happen tomorrow. A friend of mine told me "You never know how strong you are until strong is your only option"! Hang in there.

Karen - posted on 08/09/2009

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Hi. My lilman is 2 and a half. He had infantile spasms at 9 months which were controlled relatively quickly. However, he regressed and now has a developmental delay (he's around 15 months old developmentally). He hasn't got white matter on his brain but is missing the membrane that seperates the left and right. The doctors have diagnosed a midline defect and can't give us any indication of how he will be in years to come. Although our boys aren't exactly the same I just wanted to offer some support. Alfie is the cheekiest, most loving lil angel and come what may, we will fight his corner and ensure he has the best possible start. The doctors always paint the blackest possible picture and I have found it hard to stay positive at times. All I can say is to make the most of the support available and try everything they suggest - that way you can pick and choose what you feel is best for you and your family. Our health visitor has been fabulous and she has referred us for any support she can! Take care and keep smiling :-)

User - posted on 08/07/2009

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My son had an mri at 15 months and there is abnormal white matter between both ventricles of his brain. He has partial complex seizures as well. My guy is 8 and is a medically complex child. Don't let that scare you. It just means James has many different things that make up what's different about him. James was developmentally delayed. He was a 31 weeker and the Dr.s kept trying to tell me that he would just catch up by the time he turned 2. I really began to worry when he wasn't sitting up by 13 months. I began to get James plugged into the Early Intervention Program in our area. We spent many, many hours in physical, speech and occupational therapy. I found a doctor who would work "with" me in developing a plan for my son. There were many dark days for me then. I was a young mom in a town where I had no family. I am thankful I have a good husband. The days that were so hard were so worth it to see my little man walk, talk, tell jokes and laugh his head off! James has become a quirky kid who tries so hard to keep up with all the other kids. He knows he's different...we never kept that from him. We cling to a quote in our family. "It's not our fault it's our challenge." We continually remind Jamie...we dont' use the word can't..we use the word different. I will leave you with this encouraging story. Jamie is unable to hula hoop because he lacks the gross motor skills to do so. He is mainstreamed and in 1st grade that was part of the curriculum. Because of our slogan...different...he used the hula hoop as a jump rope. Before he knew it all the kids were watching him and wanted to learn how to jump the hula like him. That year the hula hoop curriculum was changed! James taught the class how HE hula hooped!!! Encourage you little one and never ever give up hope or lose your dream for him!!! Hang in there

[deleted account]

thanks ever so much to u sandi and deanna,its so good to knw im not alone!!!!will be looking into the advice you have given.thanks again

Deanna - posted on 08/07/2009

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Hi,
Recently my child had under gone an mri testing which came to show abnormal white matter in the brain. My child is 7 years old and has other medical issues but we are still under going testing but her doctors are leaning toward Luekodystrophy. There are several different types. She has the developmental delays but no seizures. I hope this can give you some in sight and helpful.. Don't give up and keep searching for the answers till you get them. Such a beautiful baby boy.

Sandi - posted on 08/06/2009

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Hi,



My daughter used to have seizures. Her seizure medication gave her blood sugar problems too and nothing they prescribed seem to work well at all plus all the side effects were not good. We decided to incorporate natural things into her regime and it worked for us, she hasn't had them for several years now and is medication free. Not saying it would work for your child because everyone is different but what we did is we got her acupuncture and upper cervical treatments once a week for 3 months, you can find an upper cervical doctor at http://uppercervical.org and some of the things the natural therapist had us give her was magnesium, omegas and gaba. We avoided white sugar, processed foods and hydrogenated fat in her diet. It isn't easy to do, I know, especially with a child plus it can get expensive. There is this cherry bomb energy drink that has a lot of these ingredients in it plus much more that may make it easier to get several of those supplements in him at

http://lhninternational.com/incomeadder My daughter didn't have any abnormal white matter on her brain but I am wondering if that could be plaque. I know lecithin helps reduce plaque on the brain. Lecithin granules taste pretty good stirred into pineapple juice there is a product called moducare that is supposed to help with that too at http://moducare.com and I noticed you can get it in a grape chewable. Not saying that is it, I am probably wrong, just a guess and wondering. My heart aches for you, I know the anxiety I lived with on a daily basis about my daughter. Your little boy is so cute All of these things are very gentle and my daughter thought they were fun. Our acupuncturist had a special machine he used so he didn't have to use needles and the upper cervical there is no popping of any bones, they use gentle pressure movements on the neck. I hope that maybe I provided some help to you.

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