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Re: [Families of Angelman Syndrome] Sharing Kean's EEG...please share your childs.

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  • Karla Dostal
    Melissa, I am sorry to hear that Bryson is having seizures. I completely understand how stressful it is. Can you tell me what skills Bryson has...can he
    Message 1 of 5 , Jul 15, 2006
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      Melissa,

      I am sorry to hear that Bryson is having seizures. I completely understand how stressful it is. Can you tell me what skills Bryson has...can he walk?, feed himself?, communicate?, tell me anything and everything.

      My son Kean is also 9 yrs old (July 1st). His seizures have slowed down alot. He had alot between the ages of 3-5. He is on Topamax and Depakote. He's been on those meds since 1999 & 2000 respectively.

      Kean's skills are he can walk with a walker and with hand held assistance...not on his own at all. He can feed himself with utensils when he wants to....he mainly does this at school. He is starting to communicate a lot more with gestures he does not use any augmentitive devices. He attends his local elementary school where he will be a 3rd grader this fall. He spends the majority of his day with his general ed peers and some time with his special needs peers. Kean has an older brother named Jace who will be 11 in September.

      I am sorry I cannot be much help regarding the seizures. Here are some suggestions...please do not hesitate to ask me anything else.

      Have the Dr's considered the Keto Diet? Do they think he may have Lennox Gastaut Syndrome. I copied information about it below.
      Lennox-Gastaut Syndrome
      Lennox-Gastaut syndrome is an extremely destructive disorder which still has many physicians baffled. It affects between 3-10% of children with epilepsy, more commonly males. The peak age for onset is between 3 to 5 years of age with extreme incidence occurring in the first and tenth years of life. There is commonly a history of epilepsy in the family of the affected individual, though there is no known case of familial Lennox-Gastaut syndrome.

      The most characteristic manifestation of the Lennox-Gastaut syndrome is in a large variety of seizures.

      Tonic seizures, the most inherent kind associated with the syndrome, may occur at any time, both day and night. Such seizures may be axial, axorhizomelic, and global. They are usually brief and consciousness is often impaired. Those cases which do appear nocturnally usually occur during the periods of slow-wave sleep in the latter part of the night.

      Atypical absence seizures are also present in many cases of the syndrome. Such seizures can begin and end gradually; consciousness may be only partially affected. The patient may continue to be active, however distant or abstracted his/her thoughts may seem. Often, there is a loss of tone in the face and neck muscles of the patient accompanied by impaired balance and an abnormal posture. The patient may lean forward with his/her mouth open and signs of myoclonic epileptiform activity may become evident in a twitching of the eyelids and mouth. In such cases, massive myoclonic jerks, myoclonic-atonic attacks, as well as atonic seizures may occur, though much less frequent and severe than the other manifestations.

      Tonic-clonic, clonic, or partial seizures are also characteristic of the syndrome and, thereby, symptomatic of an underlying cerebral disorder.

      Though such a multitude of disorders can be problematic, an even greater threat to Lennox-Gastaut syndrome patients exists. Severe cases of status epilepticus may develop, disabling one's consciousness and causing a continuous array of atonic and myoclonic-atonic seizures. Such seizures may persist through days, weeks, or even months, causing possible mental and physical repercussions and ultimately, death. Furthermore, the associated destruction and subsistent effects of status epilepticus are resistant to therapy and possibly recurrent.

      Approximately 5% of Lennox-Gastaut syndrome patients die from inherent problems and complications within 10 years of its onset. The disorder often persists into adulthood causing a multi-faceted array of emotional problems in up to 25% of patients. Almost all patients continue to have disabilities varying from learning arrest, loss of previously-developed skills, language difficulties, and impaired organization of movement. Approximately 50% of chronically-affected adults are completely dependent; only 17% are completely independent. Unfortunately, the syndrome is resistant to therapy, complicating the possibilities of rehabilitation.

      Treatment with phenytoin, carbamazepine, and phenobarbital is almost always ineffective. Research with sodium valproate, benzodiazepines (particularly nitrazepam and clonazepam), lamotrigine, vigabatrin, intravenous immunoglobulin therapy, and the ketogenic diet are slowly breaking the barriers to a successful treatment for Lennox-Gastaut syndrome patients.




      melissa triplett <melissadtriplett@...> wrote:
      Karla,

      Hey my name is melissa , I have a child with angelman syndrome he just turned 9 on June 27 . He started having seizures when he was 3 years old, but only when he had a fever. He has been having them since but last june he started having about 30 a day , they put him in the hospital so they could do the video eeg, which didn;t help us much they said it ws very abnormal , which was very typical for angelman syndrome, they put him on topamax and depokote, which did seem to help , but in the last week he has started having seizures again, we had to call the ambulance wed. because he had one that lasted for over 5 min we couldn't get him to come out of it. It is so frustrating when they tell you that there is nothingn they can do they are no micracle drug that will make everything stop they said they will just have to find the right dose and the right medicine for him, you just want to make everything better , it makes you feel so helpless. I was wandering if your
      child had alot of seizures, and what they put him on if he did. Bryson is my son's name he has a brother that is 7 and a sister that is 11 , he is a joy to have in our family, there are never a boring moment he likes to be center of attention, he laughs all the time , he loves to wrestle with his brother, and loves to give slobbery kisses . Well thanks for listening to me.

      Melissa triplett
      lenoir


      Karla Dostal <mom_angelboy@...> wrote:
      I am sharing the results of 2 of Kean's EEG's. Please share with me
      the results of your children's EEG's if you have them. I am curious
      about the comparison of your Childs EEG to Kean's. Thank you.

      The first one was his first EEG he was 16 months old.
      EEG October 1998..Kean 16 months old (2 days after EEG).
      EEG is strikingly abnormal. The background is relatively symmetric
      with a 5-6 hertz rhythm. When awake, he develops robust, extremely
      high amplitude, primary generalized spike-wave discharge, which is
      slow at 1-2 hertz. Discharges last 20-40 seconds without clinical
      correlate. Focal slowing is not seen afterwards. When the patient
      begins to sleep, a spike wave discharge originates in the right
      temporal region and almost immediately spikes to again a generalized
      slow spiking wave at 1-2 hertz. These discharges are sustained for
      several minutes at a stretch. These discharges have a correlate of
      arrhythmic right hand and foot twitching. Intubation procedures
      were not performed. EKG was a regular rhythm.

      Between these 2 EEG's he was Diagnosed with Angelman Syndrome.

      The second EEG was done by a different Neurologist. He had used
      Phenobarbital to control his seizures starting at 16 months. He
      then started Topamax in 1999 at 26 months. He had just started
      taking Depakote (3 yrs of age) 2 months before this EEG and we were
      weaning him off of the Phenobarbital.

      EEG October 2000..Kean 39 months (3 yrs & 3 months)
      Abnormal EEG awake and drowsy with slow occipital background
      activity (3-4 Hertz) There were diffuse delta-theta slow waves and
      generalized high amplitude bursts of spike wave activity. Spike
      discharges were most pronounced in the posterior quadrants
      bilaterally. The findings indicate multifocal seizure tendency.

      Since those EEG's Kean has had many more and we were given the results over the phone. The results however were the same as the EEG's I shared. The Neurologist said it looks like his brain is having a seizure every half a second to every second...to put it in layman terms.

      I am just trying to see if Kean being lower functioning has to do with his severely abnormal EEG. He had Infantile Spasms when he was an Infant and they went untreated until he was 16 months old. They weren't even diagnosed as that until then and that was after the first Neurologist read his EEG and we shared some past information with him about Kean. He then diagnosed what we were seeing months early..Infantile Spasms

      Karla & Kean 9 AS Del+
      Iowa

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      Karla & Kean 9 AS Del+
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    • melissa triplett
      Karla, Thanks for writing back . Bryson started walking when he was 19 months old, which took alot of work he would walk everywhere on his knees, we had to
      Message 2 of 5 , Jul 17, 2006
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        Karla,
        Thanks for writing back . Bryson started walking when he was 19 months old, which took alot of work he would walk everywhere on his knees, we had to keep knee pads on him because he would get blisters on his knees from walking on them and jumping up and down on them. We finally got a physical therpaists to come in they told us it wasn't good for him to walk around on his knees , so we had to get in the floor and make him stand up hold his hips and walk behind him we done that for awhile and one day he just let go and took off. WE WERE SO EXCITED.But that was just the start of everything , our next step was getting him to walk outside it seemed like when he got outside he would freeze up , the therapist said that the outside looked so big to him that it scared him to be a big opened space, we bought a playground that had a tunnel and plenty of things to crawl up on and slides to slide down on, we had to put outdoor carpet down under the play yard because he wouldn't
        touch the ground. After a few months of working with the therapists, he got over the fear of being outside. Bryson had his first seizure when he was 3 , he had a fever, which spiked really quick. The second one was when he was about 4 he had another fever but, this time the seizure lasted about 45 min they had to put him the hospital, and every since them he has had them everytime he got sick. Then last june he started having them without a fever just out of the blue , he was having about 30 a day, they put him on depokote to start with , but that didn't help so they thought they would try zonagram , which made things alot worse he started having drop attacks and was having seizures it seemes like every 5 min , for about 4 days. That was the worse I ever saw him, he got so weak that he couldn't walk up steps , and he couldn't get in the car by himself anymore, we had to do alot for him. Bryson can feed himself with a spoon , but spills alot, but we are working on the
        spilage part and the scooping up part , he can feed himself finger food the best, but we have to make sure things are cut into small pieces because he gets chocked very easily, because he stuffs his mouth and sometimes I think he forgets to chew. we have used communication boards he has several he has a big mack which is a one button board , he has a tech talk which had eight places to put pitchures , and he has one that holds two pitchures. He does good with four pitchures at a time , but does better with actual pitchures instead of the ones you can make with the boardmaker. we also use pitchures through out the house like on our pantry we have a capri sun pouch , and a empty fruit snack pack with velcro on the door of the pantry, when he wants something to drink or a snack he will go get it off the door and bring it to us . We also have pitchures on his closet door in his room, like his favorite toys he likes to play with he will pick a pitchure and we will get the toy
        down that he wants to play with, his speech therapists , said the key for him to communicate what he wants it has to be up where he has to ask for it, which is hard to do sometime. We also are working with sign language , we have him doing more, but not with is hands he will take your hands and do more when he wants more of something which is a start that is the only sign he knows. We use his big mack when we take him to the bathroom, it has a pitchure of a toilet, we push it and tell him that it is time to go to the bathroom he doesn't always want to go , but were trying to get him in the habit of going, he is doing pretty good.Bryson can't dress himself , but he will help, he loves baths, he want help wash himself we will give him the wash cloth but he wants to throw in out of the bath tub, it is like a game with him . We have a hard time getting him out of the bath tub, because he loves it so much. Well I can go on and on, I hope this will help you, thanks so much for
        the information you gave me, his doctor had asked the same thing about lennox gastaut syndrome, because he has alot and different types, we have appoitment aug 7 , that is the earliest one that we could het things are not looking good he had 5 seizures today , he is waking up in the middle on the night in seizures to, I just wish they could help he I fel so helpless, I wish I caould do something for him, Thanks for listening.
        Melissa triplett


        Karla Dostal <mom_angelboy@...> wrote:
        Melissa,

        I am sorry to hear that Bryson is having seizures. I completely understand how stressful it is. Can you tell me what skills Bryson has...can he walk?, feed himself?, communicate?, tell me anything and everything.

        My son Kean is also 9 yrs old (July 1st). His seizures have slowed down alot. He had alot between the ages of 3-5. He is on Topamax and Depakote. He's been on those meds since 1999 & 2000 respectively.

        Kean's skills are he can walk with a walker and with hand held assistance...not on his own at all. He can feed himself with utensils when he wants to....he mainly does this at school. He is starting to communicate a lot more with gestures he does not use any augmentitive devices. He attends his local elementary school where he will be a 3rd grader this fall. He spends the majority of his day with his general ed peers and some time with his special needs peers. Kean has an older brother named Jace who will be 11 in September.

        I am sorry I cannot be much help regarding the seizures. Here are some suggestions...please do not hesitate to ask me anything else.

        Have the Dr's considered the Keto Diet? Do they think he may have Lennox Gastaut Syndrome. I copied information about it below.
        Lennox-Gastaut Syndrome
        Lennox-Gastaut syndrome is an extremely destructive disorder which still has many physicians baffled. It affects between 3-10% of children with epilepsy, more commonly males. The peak age for onset is between 3 to 5 years of age with extreme incidence occurring in the first and tenth years of life. There is commonly a history of epilepsy in the family of the affected individual, though there is no known case of familial Lennox-Gastaut syndrome.

        The most characteristic manifestation of the Lennox-Gastaut syndrome is in a large variety of seizures.

        Tonic seizures, the most inherent kind associated with the syndrome, may occur at any time, both day and night. Such seizures may be axial, axorhizomelic, and global. They are usually brief and consciousness is often impaired. Those cases which do appear nocturnally usually occur during the periods of slow-wave sleep in the latter part of the night.

        Atypical absence seizures are also present in many cases of the syndrome. Such seizures can begin and end gradually; consciousness may be only partially affected. The patient may continue to be active, however distant or abstracted his/her thoughts may seem. Often, there is a loss of tone in the face and neck muscles of the patient accompanied by impaired balance and an abnormal posture. The patient may lean forward with his/her mouth open and signs of myoclonic epileptiform activity may become evident in a twitching of the eyelids and mouth. In such cases, massive myoclonic jerks, myoclonic-atonic attacks, as well as atonic seizures may occur, though much less frequent and severe than the other manifestations.

        Tonic-clonic, clonic, or partial seizures are also characteristic of the syndrome and, thereby, symptomatic of an underlying cerebral disorder.

        Though such a multitude of disorders can be problematic, an even greater threat to Lennox-Gastaut syndrome patients exists. Severe cases of status epilepticus may develop, disabling one's consciousness and causing a continuous array of atonic and myoclonic-atonic seizures. Such seizures may persist through days, weeks, or even months, causing possible mental and physical repercussions and ultimately, death. Furthermore, the associated destruction and subsistent effects of status epilepticus are resistant to therapy and possibly recurrent.

        Approximately 5% of Lennox-Gastaut syndrome patients die from inherent problems and complications within 10 years of its onset. The disorder often persists into adulthood causing a multi-faceted array of emotional problems in up to 25% of patients. Almost all patients continue to have disabilities varying from learning arrest, loss of previously-developed skills, language difficulties, and impaired organization of movement. Approximately 50% of chronically-affected adults are completely dependent; only 17% are completely independent. Unfortunately, the syndrome is resistant to therapy, complicating the possibilities of rehabilitation.

        Treatment with phenytoin, carbamazepine, and phenobarbital is almost always ineffective. Research with sodium valproate, benzodiazepines (particularly nitrazepam and clonazepam), lamotrigine, vigabatrin, intravenous immunoglobulin therapy, and the ketogenic diet are slowly breaking the barriers to a successful treatment for Lennox-Gastaut syndrome patients.

        melissa triplett <melissadtriplett@...> wrote:
        Karla,

        Hey my name is melissa , I have a child with angelman syndrome he just turned 9 on June 27 . He started having seizures when he was 3 years old, but only when he had a fever. He has been having them since but last june he started having about 30 a day , they put him in the hospital so they could do the video eeg, which didn;t help us much they said it ws very abnormal , which was very typical for angelman syndrome, they put him on topamax and depokote, which did seem to help , but in the last week he has started having seizures again, we had to call the ambulance wed. because he had one that lasted for over 5 min we couldn't get him to come out of it. It is so frustrating when they tell you that there is nothingn they can do they are no micracle drug that will make everything stop they said they will just have to find the right dose and the right medicine for him, you just want to make everything better , it makes you feel so helpless. I was wandering if your
        child had alot of seizures, and what they put him on if he did. Bryson is my son's name he has a brother that is 7 and a sister that is 11 , he is a joy to have in our family, there are never a boring moment he likes to be center of attention, he laughs all the time , he loves to wrestle with his brother, and loves to give slobbery kisses . Well thanks for listening to me.

        Melissa triplett
        lenoir

        Karla Dostal <mom_angelboy@...> wrote:
        I am sharing the results of 2 of Kean's EEG's. Please share with me
        the results of your children's EEG's if you have them. I am curious
        about the comparison of your Childs EEG to Kean's. Thank you.

        The first one was his first EEG he was 16 months old.
        EEG October 1998..Kean 16 months old (2 days after EEG).
        EEG is strikingly abnormal. The background is relatively symmetric
        with a 5-6 hertz rhythm. When awake, he develops robust, extremely
        high amplitude, primary generalized spike-wave discharge, which is
        slow at 1-2 hertz. Discharges last 20-40 seconds without clinical
        correlate. Focal slowing is not seen afterwards. When the patient
        begins to sleep, a spike wave discharge originates in the right
        temporal region and almost immediately spikes to again a generalized
        slow spiking wave at 1-2 hertz. These discharges are sustained for
        several minutes at a stretch. These discharges have a correlate of
        arrhythmic right hand and foot twitching. Intubation procedures
        were not performed. EKG was a regular rhythm.

        Between these 2 EEG's he was Diagnosed with Angelman Syndrome.

        The second EEG was done by a different Neurologist. He had used
        Phenobarbital to control his seizures starting at 16 months. He
        then started Topamax in 1999 at 26 months. He had just started
        taking Depakote (3 yrs of age) 2 months before this EEG and we were
        weaning him off of the Phenobarbital.

        EEG October 2000..Kean 39 months (3 yrs & 3 months)
        Abnormal EEG awake and drowsy with slow occipital background
        activity (3-4 Hertz) There were diffuse delta-theta slow waves and
        generalized high amplitude bursts of spike wave activity. Spike
        discharges were most pronounced in the posterior quadrants
        bilaterally. The findings indicate multifocal seizure tendency.

        Since those EEG's Kean has had many more and we were given the results over the phone. The results however were the same as the EEG's I shared. The Neurologist said it looks like his brain is having a seizure every half a second to every second...to put it in layman terms.

        I am just trying to see if Kean being lower functioning has to do with his severely abnormal EEG. He had Infantile Spasms when he was an Infant and they went untreated until he was 16 months old. They weren't even diagnosed as that until then and that was after the first Neurologist read his EEG and we shared some past information with him about Kean. He then diagnosed what we were seeing months early..Infantile Spasms

        Karla & Kean 9 AS Del+
        Iowa

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        Karla & Kean 9 AS Del+
        Iowa

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      • bobbie toole
        Melissa Sorry to jump in, but read your post and wanted you to know I know just what you are going through. Kye started having seizures at 8 months and was
        Message 3 of 5 , Jul 22, 2006
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          Melissa

          Sorry to jump in, but read your post and wanted you to know I know just what you are going through. Kye started having seizures at 8 months and was having as many as 120+ a day. We spent many days and nights in the ER and in the hospital before finally getting him somewhat under control. Kye is 4 yrs old now, the longest he has gone without a seizure was 4 months and that seemed like a mirical in itself. He is on 3 different meds. for his seizures that he takes daily--Carbatrol 200mgx's 2, Depakote 125mg 2x'sam & 3xpm, and Topamax 15mg 2x'sam, 3xpm. He has been on this combo for over a year now and that has seemed to help quite a lot. I know how hard it is to have to go through trying everything, but hang in there and they will soon get the right one for your son. With Jase he didn't start having seizures until he was about 2 and has been seizure free since Feb. of this year! He is only on valproic acid so go to show different kids different needs. Good luck!

          Bobbie, grandma to Kye age 4, and Jase soon to be 3, both angles!

          melissa triplett <melissadtriplett@...> wrote:
          Karla,

          Hey my name is melissa , I have a child with angelman syndrome he just turned 9 on June 27 . He started having seizures when he was 3 years old, but only when he had a fever. He has been having them since but last june he started having about 30 a day , they put him in the hospital so they could do the video eeg, which didn;t help us much they said it ws very abnormal , which was very typical for angelman syndrome, they put him on topamax and depokote, which did seem to help , but in the last week he has started having seizures again, we had to call the ambulance wed. because he had one that lasted for over 5 min we couldn't get him to come out of it. It is so frustrating when they tell you that there is nothingn they can do they are no micracle drug that will make everything stop they said they will just have to find the right dose and the right medicine for him, you just want to make everything better , it makes you feel so helpless. I was wandering if your
          child had alot of seizures, and what they put him on if he did. Bryson is my son's name he has a brother that is 7 and a sister that is 11 , he is a joy to have in our family, there are never a boring moment he likes to be center of attention, he laughs all the time , he loves to wrestle with his brother, and loves to give slobbery kisses . Well thanks for listening to me.

          Melissa triplett
          lenoir


          Karla Dostal <mom_angelboy@...> wrote:
          I am sharing the results of 2 of Kean's EEG's. Please share with me
          the results of your children's EEG's if you have them. I am curious
          about the comparison of your Childs EEG to Kean's. Thank you.

          The first one was his first EEG he was 16 months old.
          EEG October 1998..Kean 16 months old (2 days after EEG).
          EEG is strikingly abnormal. The background is relatively symmetric
          with a 5-6 hertz rhythm. When awake, he develops robust, extremely
          high amplitude, primary generalized spike-wave discharge, which is
          slow at 1-2 hertz. Discharges last 20-40 seconds without clinical
          correlate. Focal slowing is not seen afterwards. When the patient
          begins to sleep, a spike wave discharge originates in the right
          temporal region and almost immediately spikes to again a generalized
          slow spiking wave at 1-2 hertz. These discharges are sustained for
          several minutes at a stretch. These discharges have a correlate of
          arrhythmic right hand and foot twitching. Intubation procedures
          were not performed. EKG was a regular rhythm.

          Between these 2 EEG's he was Diagnosed with Angelman Syndrome.

          The second EEG was done by a different Neurologist. He had used
          Phenobarbital to control his seizures starting at 16 months. He
          then started Topamax in 1999 at 26 months. He had just started
          taking Depakote (3 yrs of age) 2 months before this EEG and we were
          weaning him off of the Phenobarbital.

          EEG October 2000..Kean 39 months (3 yrs & 3 months)
          Abnormal EEG awake and drowsy with slow occipital background
          activity (3-4 Hertz) There were diffuse delta-theta slow waves and
          generalized high amplitude bursts of spike wave activity. Spike
          discharges were most pronounced in the posterior quadrants
          bilaterally. The findings indicate multifocal seizure tendency.

          Since those EEG's Kean has had many more and we were given the results over the phone. The results however were the same as the EEG's I shared. The Neurologist said it looks like his brain is having a seizure every half a second to every second...to put it in layman terms.

          I am just trying to see if Kean being lower functioning has to do with his severely abnormal EEG. He had Infantile Spasms when he was an Infant and they went untreated until he was 16 months old. They weren't even diagnosed as that until then and that was after the first Neurologist read his EEG and we shared some past information with him about Kean. He then diagnosed what we were seeing months early..Infantile Spasms

          Karla & Kean 9 AS Del+
          Iowa

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