any moms whose kid has subpendymal heterotopia grey matter nodules

Kelley - posted on 12/30/2009 ( 21 moms have responded )

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My son has a rare chromosome abnormality 18psubtelomeric duplication 18p11.32. After investigations and an MRI he was found to have subpendymal heterotopia grey matter nodules on his brain.(mainly the left side) Although he has developemental delays and moderate learning difficulties he is comming along great and improving all the time. I dont know much about the grey matter nodules except that the main side effect is seizures. My son is 4 and a half and thus far has not suffered any seizures. I have read on the internet that the seizures usually start in the second decade of life. Now I constantly live in fear of him starting to fit. Is it possible that he may never have a seizure? Is there anyone whose child has this same condition and how is it effecting them. Thankyou Kelley

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Joanna - posted on 04/02/2011

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Hi Kelley,
My 13 year old son and I both have subependymal heterotopia, along with others in our extended family. His is considerably worse than mine, But neither of us currently have seizures. He is 13 years old and has not had obvious seizures except for a few during infancy, which resolved. He is very bright, but has a learning disability, with visual spatial and organizational deficits.
It is very possible that your son may never have seizures.

Leah - posted on 01/30/2010

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My daughter (now 8) has the same - she developed epilepsy (absence seizures) when she was 4. When they started it wasn't really clear what was happening - generally we thought she was just ignoring us (bit of a free spirit to begin with). It was quite the journey going from "ignoring" to "epilepsy" and then the MRI diagnosing grey matter heterotopia after no meds would work for any period of time. She is medication resistant, and has a learning disability and behaviour "issues".

It is a scary time when you're waiting for the other shoe to drop, and overwhelming when you realize that what you planned for their and your lives has changed so drastically with a few words from the Dr. My husband (her step dad) still clings to the initial diagnosis that suggested that her seizures would cease with puberty. The diagnosis changed, but sometimes it's too much to accept it.

My best advice to you is to take each day one at a time, and enjoy it. Try not to worry too much about what the future may hold because our kids will all carve out their own spots in the world where they are meant to be. It's not easy, but it's worse to make yourself sick from the stress (speaking from experience) then you are no good to anyone :)

Do all the reading you can, gather information so if things start to change you recognize it and check out the bc epilepsy society website, it is full of interesting information - there are more kids out there than you would guess living with epilepsy...

Take care, and good luck.

Leah

Yolaine - posted on 07/11/2012

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I moderate an online group of families (adults affected by heterotopia and parents with children who have heterotopia). we now have more than 80 families worldwide supporting each other. The group is on facebook - just search for x-linked periventricular nodular heterotopia or go to the website i created www.pvnhsupport.com for more info. Yolaine

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Jenny - posted on 10/02/2013

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Hello, my name is Jenny
I adopted a little boy who was 5 (told he had hydrocephulus) but he was just diagnosed with subependymal nodules, hetertopia. He has behaviors much like Torretts sydrome. Do any of your children have that. He actually giggles for no reason, seems to have headaches or pain at times as noted by his rare screams or holding his head. he is now 6. Can you relate to any of the above? Is there a clinic or doctor who specializes in this? thank you

Kelly - posted on 08/02/2013

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Hi kelley.
My little girl is 6 now. She had her 1st sezure just before xmas. Her second 5 weeks later. She has just had am mri found out she now has grey matter heterotopia. She also has learning difficulties. She is doing well. Im hopeful for the future. The sezures are scarry but try and keep calm and dial 999 straight away. They have always been so good. Hope he gets on ok.xxx

Kelly - posted on 08/02/2013

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Hi. Im new to this. My daughter has just turned 6. She has just been diognised with grey matter heterotpia. Subependymal. She has had two seizures so far. Is very restless in the evenings and suffers from dizzyness.
Im looking for a little advice as what to maybe expect in the future. Or how i might help her live with it. Many thanks kelly

Angel - posted on 07/10/2013

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My son is 2 now but at a year and half he was diagnosted with nodular gray matter hetertopia and has seizures and there not really controlled still on three meds and still having them every thirteen days...

Julie - posted on 08/12/2012

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Hi Im new only just found this site whilst googling my 17 yr old daughters condition. She has neuronal displacement disorder (bilateral periventricular heterotopia ) thinning of the corpus collosum and an arachnoid cist at the back of her brain, (where it didnt develop). She had her first tonic clonic at 16yrs, 18mths ago is now on tegretol, keppra and topomax, she still seizes and has her auras which are awful and all the medication side effects...we are in Australia. i have had trouble finding others with this and getting information. So it may seem weird but feel a bit reieved to find others here..all her life i just thought she was "off with the fairies" so it now makes sense, she struggled at school and socially, very quiet, easily manipulated, never played sport, I think too she had lots of absence type seizures ..just vagues out. I could go on and on but leave it here for now.
thanks. Julie

Katina - posted on 12/30/2010

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Hi, I am new here. My name is Katina. My daughter is 9. She was just diagnosed with heterotopia. She also has nodules. She is not having any seizures. She is having learning problems. She started out life with Verbal Apraxia. She didn't talk until she was close to 4 years old. Sign language was our means of communicating with her. Now she is better from that but now since she's started 3rd grade, her grades are continually dropping. I did find out that it is affecting her frontal lobe. Comprehension, reasoning, ability to lower her voice when she is too loud is not there. We constantly have to tell her to quiet down. also coordination is also affected. We nick named her crash not knowing she had this. She could be running or walking and trip over air. She is very bright, loving, and caring. Sometimes she tends to be too affectionate. She sees a friend from school and she starts yelling their name and jumping up and down and runs to hug them.And I have to tell her "That's enough, let go". She sometimes giggles inappropriately. I also have noticed she acts more immature than other 9 year olds. Both her neurologist and the physician at Wallace Kettering Neuro Institiute said all of this is because of the heterotopia. Her neurologist at Childrens Hospital referred her to this Wallace Kettering place. She is going to do IQ testing, and other developmental testing to see where she what age she is mentally and see where she needs help at so she can do better in school. Then they are going to give a report to her school psychologist and they are going to either put her on a 504 plan or IEP and modify her work to her level. Example: Math class, the class is moved passed multiplication and division and she is still stuck on subtraction. So we need to know what kind of help to give her at school. She is not having seizures but her doctor said that she will probably develop them and to monitor her for them. This is all I know. I am looking for other parents to gain support and learn what might I expect or what other things I can do to help her.

Deanna - posted on 07/11/2010

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Hey all, Can you give me any advice or suggestions?? I'm taking KEPPRA... 500mg and i'm taking 1 tablet in the moring and bedtime but taking 1 in a half @ supper. i'm also taking diffrent drugs for my seizures. i was born with having sezuires since i was a baby, but my first one was scary when i was 13 yrs old. i had a granmol sezuires.. having these staring ones or abscent dont work either!

Jeanna - posted on 06/30/2010

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I received about the same advice as you about my son. He is 4 now and has grey matter heterotopia. I am wondering if he will be able to drive later on and live a normal life, or if the risk of the seizures will hold him back?

Jeanna - posted on 06/30/2010

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I have a son who was diagnosed with grey matter heterotopia. He just turned 4. I am currently seeking any and all advice about what to expect in the future, and how I can best help him now. For him, he has trouble swallowing, speech difficulties, balance issues. He also has behavioral issues. Any advice on how to get through and if and how to discipline would be great!

Elisa - posted on 05/19/2010

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Hi !
Hi Kelly
I also have a son who has nodular heterotopias. He is 9 and a half and was a rather difficult child when he was younger. The main problems were impulsivity:over reacting, (getting angry very quickly)° and some moderate learning difficulties mainly in maths although he has a good QI. he must have had all the psychological tests that were invented !! He also has fine motors skills probmems / it took him longer than other children to be able toput his socks on, button his shirt etc;; . his hand writing was terrible but has improved a lot. Now things are better , and he is doing fine although he still gets angry quickly.
I also; leave in fear of epilepsy seizur especialaly because I read that often for this type of epilepsia medicine don' t work-but the case of Leslie's son proves it is not always true. I read so much about it in the past yeqr and a half but never found any mums with children with the same problem.
I wonder if my child will be able to have a normal life when epilepsy starts
elisa

Kelley - posted on 02/20/2010

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Hi Courtney. My son had the basic chromosome tests done first and they did not show anything. Since then, they have done the micro karotype testing and this showed his abnormality in chromo 18. Because your son has some dysmorphic features, there may well be a small abnormality. It is so good to hear that he does not have any learning difficulties. I hope that he is doing well and thankyou for responding. Take care

Kelley - posted on 02/20/2010

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Val it sounds like your daughter has basically the same problems that Paul has. Moderate learning difficulties and of course some behavioural issues. Our neurologist also told us that he may never have seizure activity and I was also told the older he gets without them the less chance of them being severe would be if he did start to seizure. Who knows. I try to stay focused on all the positive things that has happened with Paul. Will deal with seizures if and when they come. Hope your daughter is doing well.

[deleted account]

Our son was dx at age 1 with peri-ventricular heterotopia in the left lateral ventricle (he has quite a few nodules lining the inside of the ventricle). It was an incidental finding as they were checking his brain to make sure he didnt have an AVM (he has an AVM in his esophagus and is GT fed) His neuro said our son has a 98% chance of developing seizures between 8-12 years old and is certain to develop them after age 12 (because 98% isnt a certainty?) we have found very little info on his type of heterotopia and the little we have found is horrible! Our guy is 4 1/2 now and is developmentally good. His IQ was tested (for school purposes) and he scored 120. Doesnt mean he wont have learning difficulties, but so far is great. He DOES have some ASD features and is being monitored for Aspergers. He has social/emotional issues and pretty moderate anxiety.
He also has mildly delayed mylienation and very mild cortical dysplasia (seen as fuzzy spots on MRI) in his frontal right lobe (could be why he has the anxiety and emotional issues) We were told by a neuroradiologist who dx him that it was a neuron migration problem when the brain develops, some pieces just go where they shouldnt. Heterotopia translates to "misplaced organ" and can occur anywhere in the body, but is more common in the brain. They did do a basic karotype of chromosomes and it was normal. He has subtle dysmorphic features (1 epicanthal fold, almond shaped eyes that are down going, flatter than typical nasal bridge, frontal bossing etc..)

Valarie - posted on 02/17/2010

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My daughter is almost 11 y.o. and has subpendymal GMH. She has not had any seizure activity yet. I, like you, have to watch and worry. Unfortunately, almost all information and support groups for GMH are focused on the seizures.... according to our daughter's neurologist it's quite possible she'll develop them but it's also possible she won't. What has happened is a marked cognitive impairment that leaves her with several behavioral and learning issues.

Anyhow, please, if you need someone to vent to or what not - just let me know. I know that the waiting and worrying can eat you alive.

Take care,
Val

Kelley - posted on 02/04/2010

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Thanks for responding Leah. Is your daughter still having absent seizures. Which part of her brain is effected by the nodules? What are absent seizures? I have so many questions..My son has learning disability and some behavioral issues also. It can be tough and I try not to worry about him developing seizures. After all, he may never. Hope this finds you and your family well. take care. Kelley

Kelley - posted on 01/16/2010

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Thankyou for responding Leslie. Is it subpendymal heterotopias that they found on your sons brain. Apparently these are normal brain matter that has been misplaced when the brain forms in utero..The fact that your son had his first seizure at 14 stands up to it usually being in the second decade and usually around 13 years old that seizure start. This off course worries me. I can only pray that Paul does not start these seizures but i think the odds are stacked against him. It is so good to hear that with meds he has been seizure free for a year.Take care and hope to hear again from you.

[deleted account]

Hi Kelley,



I'm so brand new to this facebook ...and new to seizures. I'm not sure its the same but my son, at 14, was getting headaches(that i wasn't concerned about) until one day his vision was affected rather drastically. We ended up at the emergency , did a CT scan and found a congenital abnormality on the lower left side of his brain. Further testing & MRI's confirmed that in utero his brain, during development, did its own thing and the cells developed wrong. He was soooo perfect as a baby and toddler and pre teen. then WHAM.... 14 and had a major seizure that scarred the hell out of us. He's been seizure free now for just over a year. A few adjustments in meds, but seems to be doing so far so great.

He did have some learning difficulties as a young kid and pre teen...we never could figure that out until through reading and some research found that some heterotopia's can cause learning problems.

Anyhow.... keep positive, be a voice for him, ask tons of questions and don't forget that woman's intuition that we all have.

Best of luck

Leslie

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