Guest guest Posted May 29, 2012 Report Share Posted May 29, 2012 Kenan,  Welcome to the group. Sorry I have not used the theratog suits. My daughter has cerebral palsy and more neglect or tight muscles. I have experience with knesio tape that has helped my daughter. You could learn it from a book or some therapist know more functional uses. It really helped her core muscles to activate. The better control you get of the seizures the better development you will get. Have you looked at diets keto or is the EEG an infantile spasm pattern. Do you have a doctor that specializes in epilepsy? Seizures are the worst part and we have our issues with them too. Learning about neuro inflammation has helped us. Diane Sent from Samsung Conquer™ 4G kenan asmaz wrote: Hello everybody, I am Kenan from İstanbul/Turkey. My little angel Kerem is 15 moths old. Diagnosed with PMG when he was 3 months. He had his first seizure those days. It came with harlequin effect. The left side of his face was red, the other side was normal. A few days later, after MRI we learned that he is a PMG kid. It was really hard to slow down the seizures. At the beginning we had two or three in a week. We started with Luminaletten, then Depakin, Keppra, Topamax etc. Now it seems that we have seizures once in a month. But we use Luminaletten 60 mg/day, Frisium 30 mg/day and Topamax 75 mg/day. Like most of the kids he has hypotania. He can not sit up or crawl. But he can roll an smile to his dad. He is very handsome by the way.. Our physician told about Theratogs. I know that it is produced in US. Does anybody use it?  Does it really work or any comments else? It is great to find you and i will be very pleased if anybody post something about it Thanks Kenan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2012 Report Share Posted May 29, 2012 HI kenan, Our daughter is now almost 9; we used theratogs when she was younger, intermittently, to see if it made a difference. They need to be used under the supervision and guidance of a physical therapist, as they are more complicated to put on correctly than it seems. I think it made some difference. We also do aquatic therapy, and horseback riding therapy, and TONS of physio and OT etc at school. So, weeding out what helped and what didn't is hard. But...she sat up at 18 months and started walking at 4! So, we are grateful and very proud of her. I think most therapeutic modalities are worth a try. Good luck! Thea in NY theratogs Hello everybody, I am Kenan from Ä°stanbul/Turkey. My little angel Kerem is 15 moths old. Diagnosed with PMG when he was 3 months. He had his first seizure those days. It came with harlequin effect. The left side of his face was red, the other side was normal. A few days later, after MRI we learned that he is a PMG kid. It was really hard to slow down the seizures. At the beginning we had two or three in a week. We started with Luminaletten, then Depakin, Keppra, Topamax etc. Now it seems that we have seizures once in a month. But we use Luminaletten 60 mg/day, Frisium 30 mg/day and Topamax 75 mg/day. Like most of the kids he has hypotania. He can not sit up or crawl. But he can roll an smile to his dad. He is very handsome by the way.. Our physician told about Theratogs. I know that it is produced in US. Does anybody use it? Does it really work or any comments else? It is great to find you and i will be very pleased if anybody post something about it Thanks Kenan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2012 Report Share Posted May 29, 2012 Thank you all for your help, Diane, i heard about ketogenic diet but i want to try it as the last chance. Kerem has milk allergy and can not eat everything. So it may be very hard for him. Above all seizures seem to slow down. I hope they will be over soon. So far we had 3 neuros. All of them are known as the best at pediatric neurology. But couldnt stop the seizures entirely we are using a different kind of tape but i talked to our PT today. he said that they are using knesio for CP kids but they are going to try it for Kerem also.. Sara i am trying to find a place for aquatic therapy. Our PT also advices it. Water is the only thing makes Kerem crazy. I think he can spend all the day in water if i let him go Thanks, Kenan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2012 Report Share Posted May 29, 2012 When did your daughter start horseback riding? My son is 13 months and on the keto diet. His seizures were hard to control. He is doing great on it and all, but a few spasms have been controlled. And, now we are slowly taking meds away. He does not like all the foods, but was told there were alternatives. So far worth it. Julissa Sent from my iPad > > HI kenan, > Our daughter is now almost 9; we used theratogs when she was younger, intermittently, to see if it made a difference. They need to be used under the supervision and guidance of a physical therapist, as they are more complicated to put on correctly than it seems. I think it made some difference. We also do aquatic therapy, and horseback riding therapy, and TONS of physio and OT etc at school. So, weeding out what helped and what didn't is hard. But...she sat up at 18 months and started walking at 4! So, we are grateful and very proud of her. > I think most therapeutic modalities are worth a try. > Good luck! > Thea in NY > > theratogs > > Hello everybody, > > I am Kenan from Ä°stanbul/Turkey. My little angel Kerem is 15 moths old. > Diagnosed with PMG when he was 3 months. He had his first seizure those days. It came with harlequin effect. The left side of his face > was red, the other side was normal. A few days later, after MRI we learned that he is a PMG kid. It was really hard to slow down > the seizures. At the beginning we had two or three in a week. We started with Luminaletten, then Depakin, Keppra, Topamax etc. > > Now it seems that we have seizures once in a month. But we use Luminaletten 60 mg/day, Frisium 30 mg/day and Topamax 75 mg/day. > Like most of the kids he has hypotania. He can not sit up or crawl. But he can roll an smile to his dad. He is very handsome by the way.. > > Our physician told about Theratogs. I know that it is produced in US. > Does anybody use it? Does it really work or any comments else? > > It is great to find you and i will be very pleased if anybody post something about it > > Thanks > Kenan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2012 Report Share Posted May 30, 2012 Hi, She started riding crazy young, when she was 18 months old! She looked very tiny on the horse, but we were lucky enough to have a PT through EI that was certified to do hippotherapy. And our daughter also had infantile spasms. For us, what worked was a 5 week course of ACTH injections. Scary, but it took away the spasms. I understand from her current neuro in NYC that what is now being used is the drug Vigabitrin. Did you guys try that? Keto diet is challenging. Good luck! ( : thea theratogs > > Hello everybody, > > I am Kenan from Ä°stanbul/Turkey. My little angel Kerem is 15 moths old. > Diagnosed with PMG when he was 3 months. He had his first seizure those days. It came with harlequin effect. The left side of his face > was red, the other side was normal. A few days later, after MRI we learned that he is a PMG kid. It was really hard to slow down > the seizures. At the beginning we had two or three in a week. We started with Luminaletten, then Depakin, Keppra, Topamax etc. > > Now it seems that we have seizures once in a month. But we use Luminaletten 60 mg/day, Frisium 30 mg/day and Topamax 75 mg/day. > Like most of the kids he has hypotania. He can not sit up or crawl. But he can roll an smile to his dad. He is very handsome by the way.. > > Our physician told about Theratogs. I know that it is produced in US. > Does anybody use it? Does it really work or any comments else? > > It is great to find you and i will be very pleased if anybody post something about it > > Thanks > Kenan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2012 Report Share Posted May 30, 2012 Thea, Did your daughter do horse therapy around or in NYC? Karla Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 5/30/2012 10:16 am To: polymicrogyria Subject: Re: theratogs Hi, She started riding crazy young, when she was 18 months old! She looked very tiny on the horse, but we were lucky enough to have a PT through EI that was certified to do hippotherapy. And our daughter also had infantile spasms. For us, what worked was a 5 week course of ACTH injections. Scary, but it took away the spasms. I understand from her current neuro in NYC that what is now being used is the drug Vigabitrin. Did you guys try that? Keto diet is challenging. Good luck! ( : thea theratogs > > Hello everybody, > > I am Kenan from Ä°stanbul/Turkey. My little angel Kerem is 15 moths old. > Diagnosed with PMG when he was 3 months. He had his first seizure those days. It came with harlequin effect. The left side of his face > was red, the other side was normal. A few days later, after MRI we learned that he is a PMG kid. It was really hard to slow down > the seizures. At the beginning we had two or three in a week. We started with Luminaletten, then Depakin, Keppra, Topamax etc. > > Now it seems that we have seizures once in a month. But we use Luminaletten 60 mg/day, Frisium 30 mg/day and Topamax 75 mg/day. > Like most of the kids he has hypotania. He can not sit up or crawl. But he can roll an smile to his dad. He is very handsome by the way.. > > Our physician told about Theratogs. I know that it is produced in US. > Does anybody use it? Does it really work or any comments else? > > It is great to find you and i will be very pleased if anybody post something about it > > Thanks > Kenan > > [Non-text portions of this message have been removed] > > [Non-text portions of this message have been removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2012 Report Share Posted May 30, 2012 NO, we are in upstate (ish) NY, but I'm sure there are facilities down there that offer hippotherapy. ( : theratogs> > Hello everybody,> > I am Kenan from Ä°stanbul/Turkey. My little angel Kerem is 15 moths old.> Diagnosed with PMG when he was 3 months. He had his first seizure those days. It came with harlequin effect. The left side of his face> was red, the other side was normal. A few days later, after MRI we learned that he is a PMG kid. It was really hard to slow down> the seizures. At the beginning we had two or three in a week. We started with Luminaletten, then Depakin, Keppra, Topamax etc. > > Now it seems that we have seizures once in a month. But we use Luminaletten 60 mg/day, Frisium 30 mg/day and Topamax 75 mg/day.> Like most of the kids he has hypotania. He can not sit up or crawl. But he can roll an smile to his dad. He is very handsome by the way..> > Our physician told about Theratogs. I know that it is produced in US. > Does anybody use it? Does it really work or any comments else? > > It is great to find you and i will be very pleased if anybody post something about it> > Thanks > Kenan > > [Non-text portions of this message have been removed]> > [Non-text portions of this message have been removed]> > [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2012 Report Share Posted May 30, 2012 We've been doing the diet for a little over a year with no seizure activity at all. At our best, with meds, we were down to about 2 a month, but now are med free. There's actually very little dairy in the diet, because the lactose is too much sugar. Well, except for butter, would butter trigger an allergy? A lot of the products are coconut based. To: polymicrogyria From: krmistanbul@... Date: Tue, 29 May 2012 19:51:11 +0100 Subject: Re: theratogs Thank you all for your help, Diane, i heard about ketogenic diet but i want to try it as the last chance. Kerem has milk allergy and can not eat everything. So it may be very hard for him. Above all seizures seem to slow down. I hope they will be over soon. So far we had 3 neuros. All of them are known as the best at pediatric neurology. But couldnt stop the seizures entirely we are using a different kind of tape but i talked to our PT today. he said that they are using knesio for CP kids but they are going to try it for Kerem also.. Sara i am trying to find a place for aquatic therapy. Our PT also advices it. Water is the only thing makes Kerem crazy. I think he can spend all the day in water if i let him go Thanks, Kenan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 Hi, We do hippo therapy in NYC- it's called Gallop and Ruby works with a PT on the horse. They have locations in Brooklyn, Queens, and Manhattan! I've also heard of aquatic therapy in the tri state area called Angelfish. Thanks! Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
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