Periventricular Nodular Heterotopia

[will&samsmum]

Hi. My name is Emma. My son was diagnosed with a rare brain condition called Periventricular Nodular Heterotopia at 10 weeks of age. He is now 13 months old. So far this has lead to complex epilepsy. He is on Phenobarbitone, Dilantin, Topiramate & Clonazapam three times a day. When he has a seizure with give him intra nasal midazolam. I am very interested in talking with any other parents who have a child with PNH. I would also like to talk to other parents who have children with epilepsy.

I look forward to hearing from you.

Kind Regards
Emma.

[mummyb]

hi Emma
thankfully neither of my children have seizures but i had them from the age of 13.
i just thought you'd like to know that the most important thing when you have seizures is having someone there to just love you for all and everything you are .it sounds like your llittle one is off to a good start .
i wish you all the best in all you and your family do in the future .kind regards mummy b :)

[Amanda Hanna]

Hi Emma,
My beautiful little boy, Luke, has PH too. We knew something was wrong from birth as he was gagging throughout the night and was diagnosed with feeding problems at 3 months (mild reflux and aspiration). He was initially treated with Losec and was great for 6 months. He began to show signs of Developmental Delay around 6 months and seizures began at 9 months. He is currently on Vigabatrin and Topiramate - the Vigabatrin is being weaned, and we haven't seen any seizures in a month and are praying they don't return. He has a gastrostomy through which he drinks as the medications affect his swallow, but is growing big and strong. Would love to hear from you. All the best for your beautiful little boy.
Mandy

[julief]

Hi,
My daughter was diagnoised as having infantile epliepsy at 4 1/2 months old she is now on phenobarbatone and hasnt had a seizure since thank god, but the meds make it so hard for her she has some horrible side effects. If you want to talk you can email me anytime. Julie

[will&samsmum]

Hi Julie, Mandy and Mummy B,

Thanks for your reply guys........I thought no-one was ever going to reply.

Julie - I'm so glad to hear that the phenobarbitone has held off your daughters seizures but am not so happy to hear that she has bad side effects from them - what sort of side effects. Have they thought about swapping to another med like Topomax for example. I have met a lady who's son had bad side effects to Phenobarb and they slowly weaned him off and put him on Topomax and now all is good. He was irritable and yelled all the tim and now she says he seems at peace. Here name is Elle - mum to Charlie - she is on Bub Hub too. Will her condition go away or will she always have it? How are you coping? Lovely to hear from you. Kind REgrads Emma. :)

Mandy - I wrote you a private email. Kind Regards Emma :)

Mummy b - Thank you for your words of wisdom and kind thoughts. Kind Regards Emma :)

[MamaRabbit]

Hi Gals, haven't been on this site for awhile, we seem to have quite the little group going now don't we!

Thanks Emma, I dropped Julie a private email about the side effects. All I can say is it is just wonderful to have my little boy back now that we have stopped the dreaded Phenobarbitone. The laughter and smiles are magic.

Talk soon,
Elle

[julief]

Makayla wakes up in the night absolutally terrified and just screams and screams nothing helps except for the breast talking singing rocking nothing she just looks so scared. She is really restless of a night and can sleep for more than a few hours at a time without waking, and cant get back to sleep right away without tossing and turning and throwing herself around for what seems like hours I havent had a full nights sleep since all this happened 4 months ago. She is really hyper but I cant be sure if its just her or the meds. We go back to the neuro in a few weeks to see what he wants to do, I think they will start to weam her off them and see what happens , hopefully she will have grown ou of them by then. Hope everyone is doing great ttys Julie

[will&samsmum]

Thats not good to hear about poor little Makayla's restlessness. Maybe she has a headache? Sometimes William gets restless like that and I am sure that it is because there is some sort of activity going on there. Has she had any seizures lately? Good luck at the Neuro's....make sure you let us know what is happening. I hope you have got i contact with Elle she is a lovely lady. TTYS. Take care of you. Big cuddle to Makayla. Emma :)

[oliversdad]

Hi,

My son was diagnosed with PVNH at the age of 10months approx. We have not been able to find out much about this condition and this is the first site I have found with others who have children with this condition.

Fortunately for us Oliver has not yet suffered a seizure, but he is also showing autistic traits. Is this the case with anyone else out there?

[MamaRabbit]

Hello,

My boy is only 10 months old, diagnosed with PNH at just 6 weeks, no one has mentioned autism to us at this stage and I haven't spotted anything to worry about however I would be interested to hear from you about any signs to look for in the future.

It might also be handy to swap a few notes about the PNH as you mentioned not having found much - I am no expert but have been fortunate enough to be in touch with a very good specialist and hospital system....it beats reading the horror stories on the internet which I did to start with and all turned out to be false in our case. Swapping information and stories with the other people on this site has been a great, what our specialist offers is sometimes different to others in Australia and of course different to the UK again. Please feel free to drop me an email on elenawalmsley@hotmail.com.

Cheers,
Elle

[sydsma&pop]

Hello,
Our little girl is now 23 months and has had PV Nodular Heterotopia since she was about 3 mos. Unfortunately, we didn't have a dx until she was just over a year old, and we have now been trying to deal with this since then. It seems that meds are the balancing act. We have been giving her Tripletal for about 5 -6 months and it is now just beginning to no longer have the anti-seizure effect. Syd suffers from migraines after an episode. Her seizure is petit mal (absence) and then she immediately has a migraine with all the symptoms. My big question to anyone: Keppra is her new med and we have been experiencing a little girl who is hallucinating, dizzy (can't walk), sad, and confused. We don't know if this will really go away and we are obviously concerned. Any experience with this or any other meds?

Here is our email. We would welcome others experiencing this in their life. jeffjhenn@yahoo.com

[will&samsmum]

Hi Sydsma&pa.......I have sent you a private email.

Emma

[ljones4521]

My daughter too has Bilateral Periventricular Nodular Heterotopia. We haven't experienced any seizures. She is on medication for reflux. Not sure if the reflux is due to her disorder or being born 3 months early. She is also on oxygen due to chronic lung disease. This they feel is due to her prematurity.

BTW many of you mention diagnosis after birth. I thought this disorder was commonly diagnosed in utero. Am I mistaken?

I'd love to hear of others day to day challenges and learn what is being tried in an effort to help our children attain higher levels of learning.

Lisa in MD
United States

[MamaRabbit]

Hi Lisa, welcome! I think I may have emailed you somewhere along the way. I hope you have been keeping well. How old is your daughter now? I wasn't aware BPNH could be picked up in utero. I've been told it is fairly rare but I suppose if the doctors know what they are looking for it could no doubt be picked up early. We were not diagnosed until my son had an MRI scan. He will be 3 in January.

We spend alot of time on therapy - physio, speech, ot - mind you the services we receive are not great, so I do plenty of research online, educating myself in one way or another. After all I am his greatest teacher. I can't say it is easy, but on the flip side my son adds a whole new dimension to our family life, he is a great personality and displays so much courage, strength and determination.

I have met quite a few parents of BPNH'ers via the internet and the childrens development level seems to vary quite dramatically. Some very mild in comparison to others but the plus side is they all seem to make progress it is just about finding the best learning and/or early intervention technique for your daughter.

My son does not walk, talk or crawl. He cannot feed himself however he does try to help me do these things for him and there is definitely alot more to him than those key development milestones. He is very happy, motivated to learn, enjoys interaction, playing, music and is generally a very switched on alert little boy and his eyes speak a thousand words.
He teaches us something new every day. My little soldier.

Hope to hear from you soon.

Hi to all others on this thread too :wave:

Elle.

[ljones4521]

Hi there,

Elle, I searched my email but I can't find anything. What's your email address or daughter's name?

I am so happy you responded so soon. The thread is really old, but I wanted to add my name in case others come along and need encouragement. I could not have made it without the encouragement of many of my internet friends.

Jennifer is nearly 9 months old, 6 months adjusted. She is a little behind developmentally as she doesn't sit up unassisted, doesn't roll over onto her stomach, doesn't take solids, doesn't make consonant sounds, buuuuuttt.....she does roll side to side (learned this on her own, grabs and holds her 4oz bottle, babbles all day long, smiles constantly, is very very alert, reaches for anything in front of her, tastes anything she can get her hands on and grabs for her feet!). Yesterday, she was discharged from the hospital. Her first hospitalization since June's discharge. She was admitted with pneumonia and respiratory distress. The doctor stated her lungs were pretty much shut down, yet she didn't present with any signs of distress.

Where have you learned about therapies and any other treatments that might help us with assisting our little ones to achieve their potential. I researched infant massage but have yet to find a site that lists the exercises free.

Talk to you later!

Lisa

[MamaRabbit]

Hi Lisa, my name is Elle and my son is Charlie (in Australia). We had a few emails back in May. I just have to rush to an appointment but will respond to you when I return later today.

Cheers,
Elle

[will&samsmum]

Hi Lisa....my 3 year old little boy called William has PNH as you know as I started this thread. Great to hear from you. When I was 32 weeks pregnant they picked up an abnormality in the ventricles in Williams brain. They were too wide apart. They scanned us every week until 1 week before he came and the ventricles had gone back to the normal size so they said don't worry all is good. William had his first seizure at 10 weeks old and after numerous test the MRI picked up the PNH. William had reflux when he was little but it went away at about 1 years old. William has been having Physiotherapy since he was 4 months old. He has been having Occupational Therapy since he was 6 months old and Speech Therapy since he was one year old. We attend a program called Conductive Education at a Special Needs School and we also attend a program there called Gross Motor Skills. Every day William has some sort of therapy. we have a standing frame for William and a Walker. If you email me at lindberg@aapt.net.au I will email you some photos of the standing frame and walker. William cannot walk or talk or feed himself. He is totally dependant on me. William has complex uncontrolled epilepsy as an outcome of his PNH and is on lots of epileptic medication. PNH is rare in boys. 80% of cases of PNH are usually girls. We have been guided with all of Williams therapies by the Childrens Hospital and a visiting teacher who has been coming to see William since he was 6 months old. I highly recommend Conductive Education. It has really helped William along. There are some really great people out there that we have met due to PNH.....HI Elle!!!!!! William is a happy gentle little soul and we just adore him. I am so happy that your little girl does not suffer with seizures. Anyway...I have raved on enough.....lovely to hear from you and please contact us anytime to chat. :wave: Emma

[gpxbarad]

Hello! I care for a child with PNH for the last two years and would be interested in developmental delay issues. The child has seizures controled well with medication but aimed at lowest dose needed. Trying to teach him to walk and learn to eat. he likes being sung to, especially the wheels on the bus. He has cerebral palsy also and some other medical issues. When did other children with PNH crawl, walk, learning issues? What is Conductive Education? Thanks

[MamaRabbit]

Hello - welcome :wave:

My son will be 3 in January and does not yet crawl, walk or talk...however he is a bright spark, very alert, loves music and any sort of interaction, he laughs when his sister is being tickled and laughs twice as much when he is being tickled. He tries hard to do the things he can't, the want is there! He recognises familiar songs or television programs and I'm fairly certain he understands more than most of us give him credit for given his lack of speech - his eyes and body language speak a thousand words. He loves to be upright, in standing or kneeling position and really comes to life when I get him out of his seat to play. He needs help at the moment but we are working hard at improving his balance. He has a walking frame (a meyland miniwalk) and some AFO's (ankle foot orthoses) to help with foot positioning and lengthening the calf muscle. We are getting a wheelchair for him by year-end and also some "second-skin" www.secondskin.com.au to help with his balance. We are also purchasing a communication device, which allows him to press a button and a pre-recorded word will be spoken - the word "more" for example will be said when he presses the button. (thanks Emma for that tip).

Conductive Education is a teaching method "learning to learn" so to speak. Lots of repetition, and gross motor positioning. It is particularly good for children with CP. We did it for 6 months and loved it, unfortunately there are not many places that run the course in Sydney and the 3 hour round trip was proving to be difficult. If there is a centre near you I would certainly consider giving it a try.
http://www.thespasticcentre.org.au/services/conded/whatis.htm

It's a challenging road we have ahead that is for certain but incredibly rewarding (and educational) too. My little boy is a one in a million and I am amazed by his determination and motivation each and every day.

Hope to hear from you again.

As always "hi" to all the other BPNH'ers, it's quite a club :thumbsup:

[gpxbarad]

Thank you for your reply!!!!!! Oh---the second skin site looks interesting but here in California I haven't heard of it nor have any of the therapists mentioned it. Will look into it and asking many questions. The leg wraps would work so well. He was approved to have a trail of a prone stander but that was a month ago and nothing so far. Also approved for AFO's but they are slow generating I guess the proper paperwork. A couple of days ago he tried to take a few steps while I held him!!!!!!! Oh MY! Been waiting for two years. The steps were ever so light but they happened! He had two doctor appts today so he was one tired little boy. Have to go--bedtime before work tomorrow. Thank you! Barb

[Antje und Rachel]

Hello at all,
I am Antje from Germany, and I also have a 8- year- old girl with PNVH.
Pleace excuse first my bad english, I hope you will all understand.

She have in december 2006 an MRI an there they found a singular noduar heterotophia in the left ventricel.
She have seizures since april 2005, and we need 4 changes to found the right medikament. Now the take lamotrigin and she had no seizures since february 2007.

She started in live as an "small-for-date" baby (SGA)with "Kaiserschnitt"( you take a narkose and the doctors make a cut, to born the baby).
Her first Problem was a muscular hypotonica.
She was not able to take her head.
We have started with theraphy with 6 weeks, and she learned with "Vojta" to turn on, to go away and to stand. with 18 month she go the first time.
She also had an Reflux, as baby often the milk goes by, but the grow and feel good, every time.
We tread this with an medicament, but not for long time, she had and have often an "hicks".
Other Problems:
a mild handicap of learning, she is in a specially school, who the childs learn slowlier than the others.
Great Problems with the new coming dents in the mouth, it is not enough place, and we must delay 4 dents, for having some more place.

We have, and we had a lot of therapys: physio, speek, behaviour, therapy with animals(dog, horse).

Her devellopment was very good because we take a lot of time in therapy.

In Germany we have also Forum and in this tread we are searching for all persons and childs with PNVH, take a look:
http://www.rehakids.de/phpBB2/ftopic26651.html

Thank you for reading.
Best regards from Antje

[Monja]

Hello!
We are mummy Monja, dad Dirk, Nadja(15 J.), Jacqueline(10J.) our concern child and Leon(6J.).We live in germany too. We are a merry arranged family, since we took up our three sun lights with us as foster child and care children! Jacqueline came along straight two years from a children's home to us already there much it with a large development disturbance as well as a strong muscular hypotonica, motor problems and extreme kneeling hitting a corner feet and hyperflexible joints!We began with all possible therapies, without large priority.Im opposite Jacquelines state of health worsened itself-constantly vomited it, had diarrhoea without end (gastric immotlity),problem with the feeding, weight reduction and infections.Wir fought to us through from physician to physician possibly when they found a cantankerous fom milk,sugar and fruits, gastrooesophagealen Reflux, epigastische hernien,problem with biscuspid aortic valve, later than v.a. zoeliakie (glutenfri).After glow-free Diaet, went it it was somewhat good remarkable it in the nursery school they wanted to never play, was always reduced and tired.November 2003 we found our child with rotated eyes and breath misfires inti the bed.Man found a periventikulaere nodulaere Heterotopia!Jacqueline had epilepsy (Grand mal).She became Ospolot and at the moment Keppra.To coincidence one found also still another tertiary disease Addison.She have suffering from a disease of the pituitary-adrenal system.The physical nut/mother deceased in Dezember . A human-genetic investigation did not result in now a gene defect on filamin a with own Mutation.This defect is still new and it is not research.It is probably with the Lissenzephaly!The genetics thinks that Jacqueline has PVNH with Ehlers Danlos variant.We have in germany a link of "REHAkids".Here can you found the stories our kids with PVHN and Lissencephaly.In german give it 8 kids with PVNH of filamin a and in the world 40 kids.Despite many problems love we our child of hearts and we is grateful correctly, over the fact that it is with us!!!
My medical english words are not very good but i hope you can reading and understanding it.

Thank you for reading! Its a nice forum with a lot of information!

Monja and Jacqueline from germany

[mel80]

Hello! I am from the US and have a 3 year old with this condition. She was dx at 6 months. She is non verbal, can not yet walk (although she took her first steps last weekend:D!!!!), has had lots of feeding issues, muscular issues, etc. She has been crawling and cruising for over a year and has not had any seizures yet. She also has a rare form of kidney disease. I have 2 other children with no issues. It is great getting info from other parents with this rare condition, and it is crazy how the same dx can lead to so many differences in these kids. Anyone that would like to contact me just email me. I have a site with all of my daughters info on it. caringbridge.org/visit/paigeadkins

[ebailey]

Hi, my name is Ellen and my son was diagnosed with Bilateral Periventricular Nodular Heterotopia in utero at 21 weeks. He is now 16 months old and so far has had 3 partial seizures, which he is currently taking epilem for. He also has a subarachnoid cyst and hand and feet abnormailites caused by his genetic condition and also amniotic band sydrome. He has cortical vision impairment which also makes it hard, as he has rapid eye movement and we dont know if that is more seizures or a symptom of the cortical vision. He has just started to some what commano crawl, is babbling, but has increased tone in both arms and legs, which is making this difficult for him. We are currently waiting on genetic testing to find out where this has come from. He is our inspiration every day but I would be lieing if I didnt say it has been the most stressful time of our lives! Its so nice to read other families stories about this condition. Doesnt make you feel like you are so alone :)

[Nannysprincess]

I have a new grand-daughter who has just been diagnosed with PNH. She was diagnosed with gastriosis during pregnancy. Immediately after a natural birth, she had her intestines put back into her tummy cavity.
She has sucking and swallowing problems and is on oxygen for central apnea (she forgets to breathe occasionally. Doctors did a routine MRI looking for a reason for the apnea and found the PNH. As she is only 6 weeks old now, we are only at the beginning of our journey.
Your stories are an inspiration and shows the strength of mums coping with all sorts of problems.

[roztelford]

I'm so relieved to finaly find a forum on BPNH!!

My 5 year old son was dx with BPNH after suffering infantile spasms (8 - 10 seizures per day) when he was 10 months old. Drugs were ineffective and we were told to expect he would be profoundly retarded. Aggressive steroid therapy stopped the seizures (to date) and his development is now absolutely normal.

I'm now going through minor behavioural but extreme anxiety issues with him. I'm interested to see if anyone has a son of similar age who may be experiencing any type of severe anxiety issues to see if they're related to BPNH or are simply age and environmentally appropriate. As so little is known about this condition the medical professional can shed no light.

Any reply would be most useful!

Thanks
Roz

[snowfall]

Have just found this site, and am pleased to have found it!
my son is 4 and has PVNH.He doesn't have seizures, and has just started at a mainstream school.He is anxious at night, and does wake frequently.He also has problems with his feet, and wears AFO splints.
He was diagnosed at 15 months after a MRI.He didn't walk till he was about 2 and a half, and was very slow at learning to talk. He has developmental delay, and learning to eat solids took a long time.But now the differences are much less noticeable.He eats all foods normally,walks normally, and talks perfectly well.I am not sure how behind he is with his development, but everything seems to be getting better with time.He has achieved all that a normal child would, it has just taken him a lot longer! It is like i forget that he is different, and only now and again do I remember.None of the other parents at the school have noticed he is a bit different.But I would love to hear from any other parents with children with this condition.
:)x

[MamaKatie]

My 7 Month old daughter also has BPNH and was dx after having infantile spasms. I would love to connect with other people that has children with this condition.

[MamaRabbit]

Hi everyone - wow, I haven't been on this site for a long time and am amazed by how many people have joined. 4 years ago I struggled to find any information or parents. My son is 4 y/o and BPNH is the only diagnosis we have at the moment. He has a pretty severe level of delay, not walking, talking etc and requires alot of help but is just the most gorgeous little boy you will set your eyes on.

His EEGs have always been clear (aside from 6weeks of age when he had a few seizures) and as far as we know has been seizure free for the past 4 years but we recently discovered he has some "energy" on the sleep EEG so have started a course of medication to see if this helps with his development, if not we will try steroids. I was interested to read Roz had undergone agressive course of steroids and wonder if this may assist with our development and the epileptic "energy" he experiences when he sleeps. He doesn't seem to have seizures, and sleeps through the night, but often wakes with bags under his eyes.

Anyway, it would be great to swap notes with you all.

[roztelford]

Hi there

I'm in NZ and would love to make contact with you to swap PVNH stories. My email is rozmason@live.com or you can find me on Facebook under Roz Mason.
Hope to hear from you.

Roz x

[debbiedove]

I am so glad to find you! I live in the US and found out today that my 19 yr old severely autistic son's MRI a year ago revealed that he has PNH. No one told me.

We have been dealing with the autism since his diagnosis at 2 and a half, but the seizures did not start until he was about 17. He is currently on Lamictal and Keppra, and the seizures are less severe, but he still is having them. It is really hard since he can't talk.

I don't know whether there is a firm link, but apparently people with PNH have a higher incidence of various other neurological problems. I haven't had much time to research, but I will pass along any information I can find to this group. Thank you for being here!

[Sarahpie]

My daughter, now 22 months, was diagnosed with these things recently after having infantile spasms show up at a 18 months. She is spasm/seizure free during the day and mostly at night. She's on topamax and clonazepam now. She is in speech, occupational and physical therapies. She isn't crawling yet and barely pushing up. She's 26 pounds and has a feeding tube as well. I would love to hear what others are doing to speed up any success given the doctors say its a wait and see thing and we have to wait and see what she turns out to be.

[MamaKatie]

Found this website the other day!

www.squidoo.com/livingwithBPNH

Katie

[janehj]

Hi

I have been reading the posts about PVH on this thread. I have had epilepsy for many years, and have recently been diagnosed with an FNLA muation with PVNH and Ehlers Danlos. Like the ladies grandchild I was born with a Gastrichis. For most time problems were mild, with headaches, and fatigue major prob. My daughter became ill in her teens and has the mutation and hypermobility and fatigue and pain. MRI results are awaited
Work is unlikely for her.I appreciate that these concerns are minor compared to some of your stories, but I thought interesting as PVNH related.

Best wishes to all with dx and treament

Jane

[Antje und Rachel]

Hello at all,

we have news, please read my posting here http://www.bubhub.com.au/community/forums/showthread.php?p=3953978#post3953978

Rachel is without seizures now since 15.02.2007 but have now great problems with the gastro- esophagial- reflux, we must go to the clinic to mesuaring her acid production in 24 hours by a tube at 14.08.2009 . Her behaviour keeping is very instabile, she is more like childrens in the age 5 to 7 years and not nearly 10 years. In learning she can read and write now, not very good but she makes great progress. She can count plus(+) and minus(-) to 100 and she can do the 1x1 until 6x10. Great.
She learns slowly and she has some autism behaviour, like painting pictures, nummerating, collecting in a ordner.etc.
Okay, I´m happy that a lot of other people came to this treat.
You are not alone with your rare dicease.

Best regards from germany, Antje

[vangroovymom]

So glad to have found this thread.

My daughter Ella was diagnosed with X-linked periventricular heteropia. While I am no medical expert, I know from my research this rare disease has a very broad spectrum of symptoms and levels of acuteness.

One of the resource that has helped me better understand it was provided by our genetic counsellor here in Vancouver, BC in Canada. I found it to be quite detailed and it is best if you are able to review this with a medical professional although many may not have heard of the disease. Here is the link: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=x-pvh (http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=x-pvh)
I have just started a Facebook group in hope of collecting information, sharing stories and developping support between parents and even medical professionals:http://www.facebook.com/home.php?#/group.php?gid=195006047174&ref=search&sid=563061253.744203669..1 (http://www.facebook.com/home.php?#/group.php?gid=195006047174&ref=search&sid=563061253.744203669..1)
Hope this helps. You can always email me at yoyo_dupont@hotmail.com (yoyo_dupont@hotmail.com) with further questions or comments.
Best regards, Yolaine

[lowkate]

Hi,

Im so relived to find this site!!!! My son was diagnosed with PNH when he was a month old. They noticed something wrong when i was 4 wks pregnant. Since hes had an MRI and in Nov. he'll be having a blood test done to look at his genes in detail.

Im basically hopeing to have some kind of heads up on what to execpt. Hes fine now and he acts just like a normal baby. He eats like crazy but ive notice he gets really bloated. he eats and eats. i dunno im worried, of course but i dont know what to look for. im sure ill know what a siezure is when it happens but what signs do i watch for? if anyone has and helpful info id appreciate it. thank you.

[vangroovymom]

Hi,

Im so relived to find this site!!!! My son was diagnosed with PNH when he was a month old. They noticed something wrong when i was 4 wks pregnant. Since hes had an MRI and in Nov. he'll be having a blood test done to look at his genes in detail.

Im basically hopeing to have some kind of heads up on what to execpt. Hes fine now and he acts just like a normal baby. He eats like crazy but ive notice he gets really bloated. he eats and eats. i dunno im worried, of course but i dont know what to look for. im sure ill know what a siezure is when it happens but what signs do i watch for? if anyone has and helpful info id appreciate it. thank you.

Hi! You can find lots of support online on Facebook (Private group called X-Linked Periventricular Nodular Heterotopia). There are many families with boys with PVNH and the families are fantastic at supporting each other. I also created a website www.PVNHsupport.com (http://www.PVNHsupport.com)
Hope this helps, and please don't hesitate to look me up! Yolaine Dupont