Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Kat, Welcome to the group. My son is now 15 ½ yrs old with moderate PMG and BPNH and several other medical conditions. He too has seizures. First one I noticed was at 6 months of age. 2nd one was at 2 ½ yrs old but I believe he was having them in between but we just wasn’t seeing them. At this point, he was put on seizure meds. He still has them to date….which stinks. 2-3 every 7-10 days. The type has changed over time. Simple staring to grand mals…. We’ve tried many meds (probably around 10….none control them). We looked into possible surgery but he has multiple focal spots so that wasn’t an option. Have you tried or looked into the KETO diet? She is still young….that could be a possibility. It wasn’t for my son because he is such a fickle eater and only eats just a few things. We tried the VNS also. It malfunctioned less than a year and didn’t control seizures anyway, damaged his vocal cord so we had it removed. Now, I’ve pretty much accepted it is what it is until something new comes along. Trevor is considered moderate mentally impaired. At 13 months old a developmental ped told me he would probably be mentally about ½ of his age. That is kind of true but not. He doesn’t act like a typical 7-8 yr old. He held his head up at 8 months, I believe. Had to be taught how to crawl at 15 months because he couldn’t do it on his own. He pulled to stand and cruised from 11 months until 22 months. Only said 3 words until just before 3 yrs old. Now he talk in short sentences that we can understand….some people can’t. He has hydro so holding his head up was hard. He did not get shunted until age 2 ½ yrs old. He was borderline and the docs wanted to wait and see. Funny thing with our kids is that they are all so different. You can’t look at one and think this is what my child will be like. Your daughter will write her own unique story. J I did go on to have a 2nd son who is now 12 yrs old. He is typical developing but did have a high alpha protein level (similar to what alerted us that we had a problem with our 1st son) but the repeat came back lower so that was a relief. I had to have emergency C sec because of ruptured uterus and was told to really consider not having anymore children. That was fine with me. I had a lot on my plate with a special needs child, husband in the military and a baby to take care of. Dr. Dobyns and I have been in contact for 8 years. We are in his study but he hasn’t found a genetic link as of yet. He has left the U of Chicago and moved to Washington state. If you haven’t been in contact, you should. He is one of 2 go to guys on PMG. The other is Dr. Walsh, I believe. Therapy, therapy, therapy is what your daughter would benefit from. I believe it has helped my son the most in his life. Take care, Donna Virginia, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Re: Genetic Testing. I've taken Maureen to 5 different geneticists, and so far nothing's come up on the testing. I'm curious how many people here have a syndrome diagnosis, or a " cause " for their kid's PMG? Kat, I'd recommend going to a geneticist, and having a microarray done. It may not come up with anything, but it might. If you enroll in the various studies of the doctors that people have mentioned (Dobyns, Walsh, and Sherr), they also do genetic testing. Be aware, that usually nothing comes up though. That being said, in our case, it probably is genetic, they just don't know what it is. I don't know how much you know about genetics, so forgive me if this is too simple, but even if it is genetic, that doesn't necessarily mean it's hereditary. Genetic abnormalities can arise spontaneously. In our circumstance, the doctors have agreed that they feel it probably IS genetic, even though it hasn't come up on a test, but probably not hereditary, so the the risk of it occurring again is fairly low. To: polymicrogyria From: cutekat@... Date: Mon, 16 May 2011 07:27:52 +0000 Subject: New to Board Hi I've replied to another post but just wanted to say hi to everyone. Our baby girl started having seizures from 11 weeks and after two weeks of extensive testing we were told she has Neural Migration Disorder. Named polymicrogria, on the left side. She suffers from daily infantile spasms and is heavily medicated. These meds help but she has daily break through spasms. At 4 months she also had a tumour removed from her cerebellem. She is now 8mths old, is yet to hold her head up on her own. She is very vocal and with the help of an OT is now stronger on her right side. She has cortical impairment but I've been told they won't know until shes older how well she can see, but I definetly know that she can, so we are working with a visual resource teacher aswell. She is a beautiful girl and tries so hard every day. I'm interested in hearing how others are doing, especially with development. Also have other parents gone on to have more children, or had genetic testing done? Our girl is our first and we are wanting more but are scared this could happen again. Thanks for your time. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Welcome to the group. I have 4 kids and only one with PMG. Nisha was seen by Dr. Dobyns and it was unknown cause for the PMG but said that the other kids had 5% chance of having it since it was unilateral. Diane To: polymicrogyria From: cutekat@... Date: Mon, 16 May 2011 07:27:52 +0000 Subject: New to Board Hi I've replied to another post but just wanted to say hi to everyone. Our baby girl started having seizures from 11 weeks and after two weeks of extensive testing we were told she has Neural Migration Disorder. Named polymicrogria, on the left side. She suffers from daily infantile spasms and is heavily medicated. These meds help but she has daily break through spasms. At 4 months she also had a tumour removed from her cerebellem. She is now 8mths old, is yet to hold her head up on her own. She is very vocal and with the help of an OT is now stronger on her right side. She has cortical impairment but I've been told they won't know until shes older how well she can see, but I definetly know that she can, so we are working with a visual resource teacher aswell. She is a beautiful girl and tries so hard every day. I'm interested in hearing how others are doing, especially with development. Also have other parents gone on to have more children, or had genetic testing done? Our girl is our first and we are wanting more but are scared this could happen again. Thanks for your time. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Our daughter Ella had infantile spasms too caused by PMG. She is 2 1/2 years old now, and she has been spasms-free since 6 months of age after a course of ACTH. What medications is your daughter taking? Ella went a long time without any seizures at all, but in March, she started having some complex partial seizures a few times a month that we are still trying to get under control. She goes to a full-time day treatment clinic that provides therapy on site. She graduated from PT, but is still in OT & speech. She has an increasing vocabulary, and her swallowing & self-help skills are improving all the time. She is social, charming, smart, and a handful . We are proud of her progress and hope she continues to beat the odds. Feel free to email me if you have any questions, Kat. Sincerely, -- Quote Link to comment Share on other sites More sharing options...
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