Periventricular Nodular Heterotopia

**will&samsmum** · 04-07-2005 14:47

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** · 30-07-2005 19:00

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** · 05-08-2005 21:14

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** · 09-08-2005 22:36

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** · 15-08-2005 17:32

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** · 27-08-2005 23:06

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** · 28-08-2005 14:00

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** · 04-09-2005 23:13

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** · 03-11-2005 21:21

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** · 21-11-2005 07:12

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