Instead of re-writing my email to my yahoo support groups, I just decided to copy and paste it into my journal today.
We got home today. Like some of you all said, he added Keppra and plans to take him off of the Lamictal in two weeks. He just had a cocktail of Keppra,Lamictal,baclofen,phenylbarbitol,Kolopin and Levoxyl. Poor thing is so crashed, It worries me. His blood pressure was really low last night and the night before but the neuro didn't seem to think it was low enough to worry about. It's hard for me because I can't sleep for getting up and checking on him every few minutes to see if he's still breathing. He sleeps so sound. We will be talking to him to see if we can wean him off of the phenylbarbitol too since it hasn't been upped in over a year so it's probably not helping anyway. He's only had two laughing seizures in two days and his jerks are not nearly as hard and not lasting as long so maybe the keppra is helping. He's not groggy or sleepy during the day but he's VERY IRRATABLE. My arms and back hurt so much yesterday from holding and trying to keep him happy that they are sore today. Like I have been lifting weights for two days straight. We had the sweetest nurses this time. One was a pediactric nurse student and she picked matthew as her patient. She said as soon as she saw him she told everyone else that he was HERS . lol She has a daughter with brain malformation. One side is smaller than the other and has a missing corpus collosum (not sure if it's spelled right) Her daughter is blind too. She brought pictures and they even have the same "facial" looks and expressions about them. We plan to keep in touch by email. We have not had very many nice nurses in a while and it's about time we did. I am still shocked at how nice and helpful everyone was. Thanks to the Donnelly's for your information. Im glad we are taking him off the Lamictal. I never liked that stuff in the first place. I just hope he has a better day tomorrow. I need a few good days. Especially with tendon release surgery coming up next month.I better go check on him again. Thanks
Ganny Charlotte
Ok, I've done everything I know to do and still no luck getting the myoclonics under control. Now we are dealing with myoclonics AND laughing seizures. The lamictal has not done anything to help. All I have been noticing is that the jerks were getting harder and now it's a mix of jerks and laughing siezures. I wanted to avoid the hospital as much as possible for our little man but the neuro says to bring him in for another EEG and then he can either up the lamictal more or add another seizure med. Im going to tell him that I don't want matthew like a Zombie. He said that a few of the jerks don't bother him so I am much willing to deal with a few of the jerks than having him totally zonked out all day and night. That's no way for a little boy to have to live. What little bit we can do with him is out of the picture if he is sleeping all the time. THat also leaves room for him to get sick and possibly get pneumonia, especially in this weather.
I guess I better go to bed since we have to get up early. I don't even have everything ready to go. Even packing his stuff and mine for an overnight stay can take a while. He uses more bibs than diapers so I have to make sure I have them all ready and the baby food and feederbottle juice, babylax, diapers, diaper doublers, his fav pillows, toys, and of course meds. Im sure I'll forget something though.
I caught myself eating everything I could get my hands on and realized that it was stress and nervousness. I really don't want to gain my weight back but in times like these I over eat before I realize it. I ate 7 of the small york peppermint patties, about 8 lemon cookies, 5 low fat pringles, 2 sloppy joes, a cucumber, 2 frozen sausage biscuits before I knew what happened!!!!
Good Night.
I guess I better go to bed since we have to get up early. I don't even have everything ready to go. Even packing his stuff and mine for an overnight stay can take a while. He uses more bibs than diapers so I have to make sure I have them all ready and the baby food and feederbottle juice, babylax, diapers, diaper doublers, his fav pillows, toys, and of course meds. Im sure I'll forget something though.
I caught myself eating everything I could get my hands on and realized that it was stress and nervousness. I really don't want to gain my weight back but in times like these I over eat before I realize it. I ate 7 of the small york peppermint patties, about 8 lemon cookies, 5 low fat pringles, 2 sloppy joes, a cucumber, 2 frozen sausage biscuits before I knew what happened!!!!
Good Night.
This really happened this morning, at least the part about too many bubbles in the bathtub.
We put too many bubbles in the bathtub, two feet of bubbles in the bathtub, three feet of bubbles in the bathtub, please tell us what to do!
Scoop em up and put em in the toilet, four feet of bubbles in the toilet, five feet of bubbles in the toilet, please tell us what to do
Scoop em up and pour them out the window, six feet of bubbles in the back yard, seven feet of bubbles in the back yard, please tell us what to do.
Scoop em up and put em in the dog's bowl, eight feet of bubbles in the dog's bowl, nine feet of bubbles in the dog's bowl, please tell us what to do.
Ten feet of bubbles in my doggie, ten feet of bubbles in my doggie, ten feet of bubbles in my doggies, please tell me what to do.
Pick him up and take him to the doctor, pick him up and take him to the doctor, pick him up and take him to the doctor, He'll tell us what to do.
(sing this part sadly with a frown)
No more bubbles in the bathtub, not one tiny bubble in the bathtub, Not a single bubble in the bathtub, ganny grounded me and you!
Cute but kind of silly. lol
We put too many bubbles in the bathtub, two feet of bubbles in the bathtub, three feet of bubbles in the bathtub, please tell us what to do!
Scoop em up and put em in the toilet, four feet of bubbles in the toilet, five feet of bubbles in the toilet, please tell us what to do
Scoop em up and pour them out the window, six feet of bubbles in the back yard, seven feet of bubbles in the back yard, please tell us what to do.
Scoop em up and put em in the dog's bowl, eight feet of bubbles in the dog's bowl, nine feet of bubbles in the dog's bowl, please tell us what to do.
Ten feet of bubbles in my doggie, ten feet of bubbles in my doggie, ten feet of bubbles in my doggies, please tell me what to do.
Pick him up and take him to the doctor, pick him up and take him to the doctor, pick him up and take him to the doctor, He'll tell us what to do.
(sing this part sadly with a frown)
No more bubbles in the bathtub, not one tiny bubble in the bathtub, Not a single bubble in the bathtub, ganny grounded me and you!
Cute but kind of silly. lol
These are some older entries I am transferring from my AOL Journal.
What Does He Have to Smile About?
When my little angel wakes up in the morning, he usually just lays there in his bed cooing and saying mama with his hands. (He makes a noise and pats his mouth with his hands so it sounds like he’s saying mama). When I go to say Good Morning, he smiles so big you can see every tooth in his mouth. I take his clothes and diaper off because he loves to lay naked waiting on the bath water to run. As soon as he hears me turn on the whirlpool he squeals with delight. He’ll lay there for a while waiting on his bath. You can peek at him and he’s still smiling and patting his mouth.
When I get undressed, I pick him up and we both get in the whirlpool. He starts kicking his legs and squealing some more. He has the biggest grin you ever saw and is looking over his shoulder to his right at me and try to give me kisses.
After I have stretched his legs and opened his tight little fists, he gets to lay with the water jets on his shoulders. He absolutely loves that part. Then he gets to "swim". I hold his head up and he kicks his legs like a frog. Smiling all the way. Before we get out of the tub he knows he’ll get to splash ten times then it’s over. By that I mean I stand up and let him up and down into the water ten times. He laughs and smiles hysterically every time we do that. I Hurt my back yesterday doing that.
I put the towel on his face and he giggles and smiles because he thinks Im playing peekaboo. I rub his head with the towel to dry his hair and he giggles so much he can hardly catch his breath.
I rub lotion all over his body and message his muscles. He really squeals when you message his belly. Then we get dressed and head to the kitchen for breakfast.
Matthew has never rolled over, crawled, sat up, talked or walked and is blind. What does he have to smile about? Well Im just glad that he was born this way and it didn’t happen after he was born. He never knew how to see, walk, talk, crawl or any of those things so he doesn’t miss it. It’s hard to say that but it’s true. Yea, I wish he could do some or all of those things but that’s how I have to look at it.
When I see people with scowls on their faces or someone that is constantly complaining, it really bothers me. Especially if they have never experienced having a disabled child. Sure, they may have other problems but Im talking about the people that make the biggest mountains out of mole hills. If anyone has the right to walk around with a frown and be mad at the world it would be I and my family but that’s not the case with us. There are some parents of disabled children that blame God and walk around angry and sad all the time. Matthew feels everything I feel. He is part of me. If I walk around mad at the world, then what kind of disposition would he have? I couldn’t be angry or mad anyway because living with Matthew is like living with an angel. He keeps my spirits up by his smiles and the way he looks for me over his shoulder, trying his hardest to see me with those big blue eyes is a blessing in itself because we were told he would probably never "know" or "recognize" people.
Now what do you have to smile about?
Good Night?
What Does He Have to Smile About?
When my little angel wakes up in the morning, he usually just lays there in his bed cooing and saying mama with his hands. (He makes a noise and pats his mouth with his hands so it sounds like he’s saying mama). When I go to say Good Morning, he smiles so big you can see every tooth in his mouth. I take his clothes and diaper off because he loves to lay naked waiting on the bath water to run. As soon as he hears me turn on the whirlpool he squeals with delight. He’ll lay there for a while waiting on his bath. You can peek at him and he’s still smiling and patting his mouth.
When I get undressed, I pick him up and we both get in the whirlpool. He starts kicking his legs and squealing some more. He has the biggest grin you ever saw and is looking over his shoulder to his right at me and try to give me kisses.
After I have stretched his legs and opened his tight little fists, he gets to lay with the water jets on his shoulders. He absolutely loves that part. Then he gets to "swim". I hold his head up and he kicks his legs like a frog. Smiling all the way. Before we get out of the tub he knows he’ll get to splash ten times then it’s over. By that I mean I stand up and let him up and down into the water ten times. He laughs and smiles hysterically every time we do that. I Hurt my back yesterday doing that.
I put the towel on his face and he giggles and smiles because he thinks Im playing peekaboo. I rub his head with the towel to dry his hair and he giggles so much he can hardly catch his breath.
I rub lotion all over his body and message his muscles. He really squeals when you message his belly. Then we get dressed and head to the kitchen for breakfast.
Matthew has never rolled over, crawled, sat up, talked or walked and is blind. What does he have to smile about? Well Im just glad that he was born this way and it didn’t happen after he was born. He never knew how to see, walk, talk, crawl or any of those things so he doesn’t miss it. It’s hard to say that but it’s true. Yea, I wish he could do some or all of those things but that’s how I have to look at it.
When I see people with scowls on their faces or someone that is constantly complaining, it really bothers me. Especially if they have never experienced having a disabled child. Sure, they may have other problems but Im talking about the people that make the biggest mountains out of mole hills. If anyone has the right to walk around with a frown and be mad at the world it would be I and my family but that’s not the case with us. There are some parents of disabled children that blame God and walk around angry and sad all the time. Matthew feels everything I feel. He is part of me. If I walk around mad at the world, then what kind of disposition would he have? I couldn’t be angry or mad anyway because living with Matthew is like living with an angel. He keeps my spirits up by his smiles and the way he looks for me over his shoulder, trying his hardest to see me with those big blue eyes is a blessing in itself because we were told he would probably never "know" or "recognize" people.
Now what do you have to smile about?
Good Night?
Well, not good news today. I have called the neuro several times telling them the Lamictal is not working for Matthew's Myoclonic siezures. So far we have not changed meds, but we have upped the dosage. I have just been feeling that something is going to happen but not sure what because Matthew has not been acting right.
Well, Yesterday Matthew started having "Laughing Siezures". You may say that sound wierd or crazy but it's true. There are such seizures. Matthew can be just sitting or standing and all of a sudden, he'll started laughing like he was being tickled. Not just a "ha, ha" laugh but I mean a real gut wrenching laugh. It's cute if you don't know what you are looking at. He tolerated the first few because he wasn't sure what was going on. After the fourth or fifth one he would whine and cry (no tears) in between. He gets very irratable. You can't talk to him or soothe him. Only way to calm him is to get in the whirlpool. Even swinging on the front porch didn't help.
He probably had about 30 throughout the day yesterday before the neuro called and said to give him his bedtime pill, kolonopin, now. It was about 5:00 pm. He went to bed shortly thereafter and slept all night. Today he did much better. Only about five of the laughing seizures but the myoclonic jerks were really bad after he woke of from his naps. Still waiting to hear from his neuro to see if we are going to change medicines or up the dosage on the Lamictal.
Right now he's asleep and doing okay. Myoclonics jerks is the hardest type of seizure to get under control. They say the laughing siezure accompany myoclonics in most cases but this is the first time we've seen them since he started having the myo's about six months ago. We did see him have one in the hosptial when he was two years old but it was only one laugh, then a big seizure.
The neuro told us when matthew was born to expect seizures. Different types of seizures as he got older. So far he's been right. Matthew's little brain is trying it's best to be normal and happy and do things and learn but the bad part of his brain is misfiring onto the good part and causing these seizures. That's the only way I can explain it. As we get older and learn more, different parts of our brain starts transmitting neurotransmitters and that's what's happening with Matthew. The only way to keep him from having the siezure is to sedate him or find a good seizure med that will slow down the neurotransmitters in the area of the brain that is doing the misfiring. In the laughing siezures, it's the part of the brain that controls the hypothalamus.
I'm not real worried right now but if I don't see some progress soon, I may change my mind. Most kids like Matthew have a very grim prognosis and usually get too weak to fight off infections like pneumonia but I know that as long as I am around, I'll be there to keep him active and pneumonia is the least of our worries. My worry is that his brain is so malformed that the doctors may never be able to control all of his seizures. That would mean being almost totally sedated if they get to that point. So far God has helped Matthew make it this far and we'll just have to keep on praying because I know Matthew's work is not done here on earth yet. There are still to many people that have not opened their eyes and "saw the light" and too many that have not totally excepted him the way he is. And I'm not ready to give him back yet because I need more teaching from him on life, patients, caring and unconditional love. Keep him in your prayers.
Here is some information on the siezures. Did you know there are all different kinds of seizures?
It just depends where the misfiring in the brain is happeneing. Here are some examples. (Imagine these in a more exaggerated state, not the normal yawning, hiccupping, etc)
Yawning, hiccupping , eye twitiching, outbursts, leg tremors, arms, fingers and of course laughing.
HISTORICAL NOTE AND NOMENCLATUREDaly and Mulder coined the term "gelastic epilepsy" from the Greek word gelos, laughter, to emphasize the main character of these seizures (Daly and Mulder 1957). The possibility of sudden emotions as a manifestation of an epileptic seizure had been recognized since the end of the 19th century. These emotions were usually characterized as unpleasant; emotions of fear were most often described. Laughing seizures were first described by Trousseau (Trousseau 1877). Gowers observed emotions "with a cheerful character" as part of a seizure (Gowers 1881). Since then, ictal laughing or gelastic seizures has been described in different epileptic conditions associated with the temporal or frontal lobes. Gelastic seizures have been described most often in association with hypothalamic hamartomas. Gascon and Lombroso suggested the following criteria for the diagnosis of gelastic epilepsy: stereotyped recurrence; absence of external precipitants; concomitance of other manifestations generally accepted as epileptic; presence of interictal or interictal EEG epileptiform discharges; and absence of conditions in which pathological laughter might occur (Gascon and Lombroso 1971). Some patients have experienced both gelastic and crying seizures, termed "dacrystic" or "quiritarian" seizures (Sethi and Rao 1976).CLINICAL MANIFESTATIONS The clinical manifestations of gelastic seizures depend on the associated pathology. Laughter is usually a short manifestation (about 30s), particularly when it occurs as an isolated event. Although inappropriate, it can be so similar to the patients natural laughter that it can go without diagnosis for a long period of time. It has been recognized as part of a manifestation of several kinds of seizures such as partial seizures with motor symptoms, myoclonic seizures, axial tonic seizures, flexor spasms, generalized convulsive seizures, and petit mal absences (Loiseau et al 1971). The laughter is often prolonged if it is part of a more complex seizure disorder; occasional cases of gelastic status epilepticus have also been reported (Glassman et al 1986). The laughing component of the seizure can be differentiated regarding possible manifestations of mirth during the seizure (or sorrow during a crying seizure) as well as the affected level of consciousness. Such manifestations seem to be more commonly associated with focalities other than hypothalamic hamartoma (mirth generated from a temporal focus). Uncomplicated gelastic seizures generated from hypothalamic hamartoma, however, usually neither show components of mirth or altered level of consciousness (Arroyo et al 1993). Age of onset of gelastic seizures also varies depending on the associated pathology. If related to hypothalamic hamartoma, the main distribution seems to be from neonate 5 years, and the gelastic manifestations start before other later appearing seizure types. If associated with frontal lobe or temporal lobe seizures, onset is usually above the age of 5 years; gelastic seizures usually start in connection to or later than other seizure types. Gelastic seizures associated with hypothalamic hamartoma often appear several times daily or even hourly. This differs from the less frequently appearing gelastic seizures associated with other localizations. Although occurring frequently, gelastic seizures with hypothalamic hamartoma appear benign in infancy . Subsequently, during school-age years, the seizures usually become more complicated, other seizure types develop, and cognitive deterioration occurs. Severe behavior problems are common, and the seizures are usually intractable (Berkovic et al 1988; Valdueza et al 1994; Sturm et al 2000).
LOCALIZATION It has been suggested that normal laughter is the result of an interaction of several different brain structures: the frontal and temporal neocortex; the temporo-basal cortex; the visual, olfactorial, and auditorial associative areas; the limbic system with the cingulate gyrus; and the brainstem. The motor manifestations of laughter and the feeling of amusement or mirth have been claimed to be separable functions and, consequently, neurologically dissociated (Lopes da Silva et al 1990; Arroyo et al 1993). Gelastic seizures have been observed to be associated with many different conditions: mainly hypothalamic hamartomas, but also as a seizure manifestation in connection with temporal and frontal lobe lesions as well as other focalities. Hypothalamic hamartoma. Non-neoplastic malformations resembling gray matter. Temporal lobe lesions
Well, Yesterday Matthew started having "Laughing Siezures". You may say that sound wierd or crazy but it's true. There are such seizures. Matthew can be just sitting or standing and all of a sudden, he'll started laughing like he was being tickled. Not just a "ha, ha" laugh but I mean a real gut wrenching laugh. It's cute if you don't know what you are looking at. He tolerated the first few because he wasn't sure what was going on. After the fourth or fifth one he would whine and cry (no tears) in between. He gets very irratable. You can't talk to him or soothe him. Only way to calm him is to get in the whirlpool. Even swinging on the front porch didn't help.
He probably had about 30 throughout the day yesterday before the neuro called and said to give him his bedtime pill, kolonopin, now. It was about 5:00 pm. He went to bed shortly thereafter and slept all night. Today he did much better. Only about five of the laughing seizures but the myoclonic jerks were really bad after he woke of from his naps. Still waiting to hear from his neuro to see if we are going to change medicines or up the dosage on the Lamictal.
Right now he's asleep and doing okay. Myoclonics jerks is the hardest type of seizure to get under control. They say the laughing siezure accompany myoclonics in most cases but this is the first time we've seen them since he started having the myo's about six months ago. We did see him have one in the hosptial when he was two years old but it was only one laugh, then a big seizure.
The neuro told us when matthew was born to expect seizures. Different types of seizures as he got older. So far he's been right. Matthew's little brain is trying it's best to be normal and happy and do things and learn but the bad part of his brain is misfiring onto the good part and causing these seizures. That's the only way I can explain it. As we get older and learn more, different parts of our brain starts transmitting neurotransmitters and that's what's happening with Matthew. The only way to keep him from having the siezure is to sedate him or find a good seizure med that will slow down the neurotransmitters in the area of the brain that is doing the misfiring. In the laughing siezures, it's the part of the brain that controls the hypothalamus.
I'm not real worried right now but if I don't see some progress soon, I may change my mind. Most kids like Matthew have a very grim prognosis and usually get too weak to fight off infections like pneumonia but I know that as long as I am around, I'll be there to keep him active and pneumonia is the least of our worries. My worry is that his brain is so malformed that the doctors may never be able to control all of his seizures. That would mean being almost totally sedated if they get to that point. So far God has helped Matthew make it this far and we'll just have to keep on praying because I know Matthew's work is not done here on earth yet. There are still to many people that have not opened their eyes and "saw the light" and too many that have not totally excepted him the way he is. And I'm not ready to give him back yet because I need more teaching from him on life, patients, caring and unconditional love. Keep him in your prayers.
Here is some information on the siezures. Did you know there are all different kinds of seizures?
It just depends where the misfiring in the brain is happeneing. Here are some examples. (Imagine these in a more exaggerated state, not the normal yawning, hiccupping, etc)
Yawning, hiccupping , eye twitiching, outbursts, leg tremors, arms, fingers and of course laughing.
HISTORICAL NOTE AND NOMENCLATUREDaly and Mulder coined the term "gelastic epilepsy" from the Greek word gelos, laughter, to emphasize the main character of these seizures (Daly and Mulder 1957). The possibility of sudden emotions as a manifestation of an epileptic seizure had been recognized since the end of the 19th century. These emotions were usually characterized as unpleasant; emotions of fear were most often described. Laughing seizures were first described by Trousseau (Trousseau 1877). Gowers observed emotions "with a cheerful character" as part of a seizure (Gowers 1881). Since then, ictal laughing or gelastic seizures has been described in different epileptic conditions associated with the temporal or frontal lobes. Gelastic seizures have been described most often in association with hypothalamic hamartomas. Gascon and Lombroso suggested the following criteria for the diagnosis of gelastic epilepsy: stereotyped recurrence; absence of external precipitants; concomitance of other manifestations generally accepted as epileptic; presence of interictal or interictal EEG epileptiform discharges; and absence of conditions in which pathological laughter might occur (Gascon and Lombroso 1971). Some patients have experienced both gelastic and crying seizures, termed "dacrystic" or "quiritarian" seizures (Sethi and Rao 1976).CLINICAL MANIFESTATIONS The clinical manifestations of gelastic seizures depend on the associated pathology. Laughter is usually a short manifestation (about 30s), particularly when it occurs as an isolated event. Although inappropriate, it can be so similar to the patients natural laughter that it can go without diagnosis for a long period of time. It has been recognized as part of a manifestation of several kinds of seizures such as partial seizures with motor symptoms, myoclonic seizures, axial tonic seizures, flexor spasms, generalized convulsive seizures, and petit mal absences (Loiseau et al 1971). The laughter is often prolonged if it is part of a more complex seizure disorder; occasional cases of gelastic status epilepticus have also been reported (Glassman et al 1986). The laughing component of the seizure can be differentiated regarding possible manifestations of mirth during the seizure (or sorrow during a crying seizure) as well as the affected level of consciousness. Such manifestations seem to be more commonly associated with focalities other than hypothalamic hamartoma (mirth generated from a temporal focus). Uncomplicated gelastic seizures generated from hypothalamic hamartoma, however, usually neither show components of mirth or altered level of consciousness (Arroyo et al 1993). Age of onset of gelastic seizures also varies depending on the associated pathology. If related to hypothalamic hamartoma, the main distribution seems to be from neonate 5 years, and the gelastic manifestations start before other later appearing seizure types. If associated with frontal lobe or temporal lobe seizures, onset is usually above the age of 5 years; gelastic seizures usually start in connection to or later than other seizure types. Gelastic seizures associated with hypothalamic hamartoma often appear several times daily or even hourly. This differs from the less frequently appearing gelastic seizures associated with other localizations. Although occurring frequently, gelastic seizures with hypothalamic hamartoma appear benign in infancy . Subsequently, during school-age years, the seizures usually become more complicated, other seizure types develop, and cognitive deterioration occurs. Severe behavior problems are common, and the seizures are usually intractable (Berkovic et al 1988; Valdueza et al 1994; Sturm et al 2000).
LOCALIZATION It has been suggested that normal laughter is the result of an interaction of several different brain structures: the frontal and temporal neocortex; the temporo-basal cortex; the visual, olfactorial, and auditorial associative areas; the limbic system with the cingulate gyrus; and the brainstem. The motor manifestations of laughter and the feeling of amusement or mirth have been claimed to be separable functions and, consequently, neurologically dissociated (Lopes da Silva et al 1990; Arroyo et al 1993). Gelastic seizures have been observed to be associated with many different conditions: mainly hypothalamic hamartomas, but also as a seizure manifestation in connection with temporal and frontal lobe lesions as well as other focalities. Hypothalamic hamartoma. Non-neoplastic malformations resembling gray matter. Temporal lobe lesions
It's strange how some people "Cringe" at the thought of going to the dentist. I Cringe at the thought of having a tooth ache! I had two teeth pulled today, hopefully I can get them all fixed very soon since I found an affordable dentist.
Seven shots! He shot me twice on each side, pulled the right one but the other one would not get dead enough for him to pull. I ended up getting seven shots before he could pull it. He said I had a rare nerve "thang". I forgot what he called it. Ha.ha. Right now Im feeling pretty good, Thanks to Loritab. Ha.ha.
Poor mom had to entertain Matthew for almost two hours. He was in one of his playing moods. He wanted to walk and be bounced and tickled or he would whine. She had to chance his diaper on the magazine table in the waiting room. Two hours later when I came out, there was a lady holding him. Ha.ha and it wasn't grandma Ruth! I thought that was funny too. I thought she had given him away but she said the lady offered to hold him.
He's asleep now. Still having those Myoclonic Jerks! I am at my wits end with those things. I am going to check into the Neuro Diet again. I have already emailed the lady and she emailed me back. We are going to start with one thing at a time changing his diet. When I first spoke to her, I was just overwhelmed with what to do first so she offered to help me. It's got to do with getting him on Organic foods, low sugar, no preservatives, etc. The organic foods are sometimes hard to find and when you do find them they are very expensive but I am going to do it even if I have to raise the money.
He had a runny nose and congestion but he's a lot better today. I usually keep him indoors but I decided the last two days to take him to the Indoor pool and I believe it helped him loosen up the crud and he's a lot better. I thought it may make him sicker but looks like it's helped him.
You should have seen him today. He showed off most of the day and was a little angel of course. The way he turns his head and struggles to seem my face and smiles, showing all his teeth just makes my heart melt..
He's so spoiled. I am happy about that because he shouldn't be able to show attachment of know voices with all his brain abnormalities but there is no doubt he knows me and a lot of other people.
I notice how sometimes my boys come in from school and they just walk by him and don't say anything to him. I have been telling them that they need to speak to him everytime they can so he can get more familiar with their voices. When the boys get in from school, I 'll say, OH NO they're home! Lets get out of here! And Matthew will just laugh. He loves to hear me scream at korey or threaten him when he doesn't do homework. Matthew laughs as if to say, Ha, ha, you are in trouble. It's really funny.
When papa John drives up, I'll say Papaw's home Matthew and he gets real excited and smiles.
The door at the indoor pool at the YMCA squeaks really loud when you open it. When he hears that squeaking door, he gets all excited because he know's he's going swimming and he immediately tries to get out of his chair and he squeels in the dressing room like a little girl and all the time he turning to the right with his eyes wide open trying to see me. Makes me want to cry just thinking about it.
He is such a sweet little boy. If God said I could go back in time and exchange him for another "normal" little boy I believe I would say no. If he said I could go back in time and have Matthew over again as a normal baby I would have to say, yes. But If I did I could have never learned what life was all about and how fulfilling it could be. Matthew doesn't seem to be suffering or in any pain, but If he was, I may look at it differently. He is normal to himself because he doesn't know how to be any other way. I think he is just wonderful. You know lots of kids with the same brain malformations can be screamers, hitters, very irratable, or unsociable, and some can't even smile or laugh. I couldn't imagine not ever seeing Matthew smile but I know if I had to his eyes can say a billion words.
I guess I better quit my braggin and go to bed.
Good Night
Seven shots! He shot me twice on each side, pulled the right one but the other one would not get dead enough for him to pull. I ended up getting seven shots before he could pull it. He said I had a rare nerve "thang". I forgot what he called it. Ha.ha. Right now Im feeling pretty good, Thanks to Loritab. Ha.ha.
Poor mom had to entertain Matthew for almost two hours. He was in one of his playing moods. He wanted to walk and be bounced and tickled or he would whine. She had to chance his diaper on the magazine table in the waiting room. Two hours later when I came out, there was a lady holding him. Ha.ha and it wasn't grandma Ruth! I thought that was funny too. I thought she had given him away but she said the lady offered to hold him.
He's asleep now. Still having those Myoclonic Jerks! I am at my wits end with those things. I am going to check into the Neuro Diet again. I have already emailed the lady and she emailed me back. We are going to start with one thing at a time changing his diet. When I first spoke to her, I was just overwhelmed with what to do first so she offered to help me. It's got to do with getting him on Organic foods, low sugar, no preservatives, etc. The organic foods are sometimes hard to find and when you do find them they are very expensive but I am going to do it even if I have to raise the money.
He had a runny nose and congestion but he's a lot better today. I usually keep him indoors but I decided the last two days to take him to the Indoor pool and I believe it helped him loosen up the crud and he's a lot better. I thought it may make him sicker but looks like it's helped him.
You should have seen him today. He showed off most of the day and was a little angel of course. The way he turns his head and struggles to seem my face and smiles, showing all his teeth just makes my heart melt..
He's so spoiled. I am happy about that because he shouldn't be able to show attachment of know voices with all his brain abnormalities but there is no doubt he knows me and a lot of other people.
I notice how sometimes my boys come in from school and they just walk by him and don't say anything to him. I have been telling them that they need to speak to him everytime they can so he can get more familiar with their voices. When the boys get in from school, I 'll say, OH NO they're home! Lets get out of here! And Matthew will just laugh. He loves to hear me scream at korey or threaten him when he doesn't do homework. Matthew laughs as if to say, Ha, ha, you are in trouble. It's really funny.
When papa John drives up, I'll say Papaw's home Matthew and he gets real excited and smiles.
The door at the indoor pool at the YMCA squeaks really loud when you open it. When he hears that squeaking door, he gets all excited because he know's he's going swimming and he immediately tries to get out of his chair and he squeels in the dressing room like a little girl and all the time he turning to the right with his eyes wide open trying to see me. Makes me want to cry just thinking about it.
He is such a sweet little boy. If God said I could go back in time and exchange him for another "normal" little boy I believe I would say no. If he said I could go back in time and have Matthew over again as a normal baby I would have to say, yes. But If I did I could have never learned what life was all about and how fulfilling it could be. Matthew doesn't seem to be suffering or in any pain, but If he was, I may look at it differently. He is normal to himself because he doesn't know how to be any other way. I think he is just wonderful. You know lots of kids with the same brain malformations can be screamers, hitters, very irratable, or unsociable, and some can't even smile or laugh. I couldn't imagine not ever seeing Matthew smile but I know if I had to his eyes can say a billion words.
I guess I better quit my braggin and go to bed.
Good Night
What is an Oddyssey?
Well, the word means a difficult but significant journey. I decided to name it that because that's what we've been going through since February 18, 2002. Not to say it is all a difficult journey because there are many things we have been taught by our Little Oddyssey. His name is Matthew, AKA Peekaboo Man. He is almost three years old now.. He was born with several brain malformations and is a very special little boy.
Matthew's Story: (Matthew is 3 years and 4 mos old now!)
It's kind of hard to start from the begining since matthew is almost two and a half now. Matthew was born with 4 brain malformations, he can't walk, crawl, talk or see but has the soul and spirit of an Angel. I am his grandmother at age 39 and am raising him and trying hard to give him the very best in care and my goal is to help him live the best quality life he deserves. But you can read his old web pages at www.geocities.com/secretadmirer021802 and www.babiesonline.com and at this site you have to look up his name, matthew sanderson.Well, first of all, I've been a grandma since I was 37 years old. Daughter, Matthew's mom was 19. He was born Feb. 18, 2002. No problems during pregnancy and was told the day he was born, he was a healthy, 6lb 7 oz baby boy. He had hair shiny like moondust gold and twilight eyes of blue. Perfect in everyway. Ten fingers, ten toes. Little did we know our lives were about to change forever on Feb. 19th. 2002 I had decided to go home the next day s and shower and change since the baby was okay and so was mom. The nurses had kept him a lot longer than they did the day before so I figured Mary could get some rest. I came back about two hours later and was on the elevator to go up to her room when I bumped in to an old friend of mine on the elevator, she said she just delievered flowers to my grandbaby's room. She looked really upset and I saw something in her eyes that just didn't look right.. Anyway when I walked into the room, Mary was in tears, Big Matt was sitting on the floor crying hysterically with his dad holding on to him and his mom crying too. I thought matthew had died but he was in his moms arms sound asleep. I said What? What? Whats wrong? Someone please tell me. All Mary could say was "something's wrong with baby matt". I was about to go bezerk because no one could tell me beccause they were crying so hard. Finally, Mary told me "some of what the doctor had said". All I heard was, mental retardation, never walk and some kind of fluid filled cysts in Matthew's brain. I could not believe my ears. How could this happen? How could the doctor give news like this anyway without Mary's parents or grandparents around to help her? Anyway, I took Matthew from Mary's arms and began to pray. This is where Matthew's Journey begins and also when my life changed forever. Have you ever just cried so much your throat hurt and your eyes stayed swollen? You couldn't listen to almost any songs or watch any TV programs because you would just start crying. Does the sight of a little blonde haired blue eyed child running in front of you in Walmart bring you to tears? Have you ever had so many thoughts running through your mind that you just couldn't concentrate? I can remember driving to work in Jackson and crying all the way to work and all the way home. Since then, I have learned that when families get bad news of a loved one, even in Matthew's case, the way I was acting was part of a grieving process. It's like Matthew had already died. I know now that I may have been grieving over the part of matthews life that he would never have, like the walking and talking and being able to see his grandma and mommy's face. Well that's part of how I felt for about a long time after we got Matthew's official diagnosis from a neurologist. It's was even harder then because we all had prayeed and prayed and were looking for a miracle when we went to the neurologist two weeks later but it just didn't happen. 4 of us went with Mary and Matt to the neurologist and got even worse news. Blindness, Mental Retardation, most likely severe, never walking, totally dependant the rest of his life. I knew then in my heart that if we prayed that God may let our Angel do what the doctors say he never would but I know now that some of it's just not going to be a part of God's wonderful plan for sending Matthew to us. I never knew how to look at the "soul" of a person until Matthew came along. He is a beautiful little boy that can't do what other kids can but his soul and his spirit is such a blessing to me. Just seeing that beautiful smile every morning is what keeps grandma strong and ready to face each day on my Journey with Peekaboo Man. :
Diagnosis: Microcephaly, Shitzencephaly, Pachygyria, Polymicrogyria, Hypotonia, Septo Optic Dysplasia.
The tendons are very tight. Even with physical therapy, Botox, hippotherapy and water therapy they have not gotten worse but not better. The doctor at Shriners said that she could guarantee that they would eventually pop all the way out of socket as he got older. The ball joints are actually further apart from the hip sockets that I could draw them. When he stands, you can't hardly get a flat palm between them.
We've been avoiding the surgery because of the seriousness of it. It will mean 3-4 days hospital stay. He will be put in a hip Spika cast. That's going to be a nighmare in itself. After six weeks we go back and stay for two weeks of intense physical therapy.
I am comfortable with the surgery being done at Shriners. They know what they are doing and If I had any questions they answered them all and then some. Unlike the hospital in Jackson where they sent Matthew home with Pneumonia and a fever. I also found out that they never consulted with his Neurologist or Endochrinoligist or even did a levels test on all the seizure meds he has to take. That is a MUST for me before Matthew has any type of surgery but I had to learn the hard way. Shriners requires a Consent form from both of those doctors before they will do any type of surgery on a child. They have to have a levels test exactly seven days before surgery.
I feel everthing is going to be fine but I know from what I have heard that its going to be rough but it's going to be worth it. He's a tough little guy and I have no doubt he'll do more than we ever thought he would after the surgery. Even if it just keeps him out of pain or makes him able to sit or walk better in his walker it will be worth it.
Im going to bed. Im not feeling well. Hope Im not getting sick. I don't have time for it.
Charlotte
We've been avoiding the surgery because of the seriousness of it. It will mean 3-4 days hospital stay. He will be put in a hip Spika cast. That's going to be a nighmare in itself. After six weeks we go back and stay for two weeks of intense physical therapy.
I am comfortable with the surgery being done at Shriners. They know what they are doing and If I had any questions they answered them all and then some. Unlike the hospital in Jackson where they sent Matthew home with Pneumonia and a fever. I also found out that they never consulted with his Neurologist or Endochrinoligist or even did a levels test on all the seizure meds he has to take. That is a MUST for me before Matthew has any type of surgery but I had to learn the hard way. Shriners requires a Consent form from both of those doctors before they will do any type of surgery on a child. They have to have a levels test exactly seven days before surgery.
I feel everthing is going to be fine but I know from what I have heard that its going to be rough but it's going to be worth it. He's a tough little guy and I have no doubt he'll do more than we ever thought he would after the surgery. Even if it just keeps him out of pain or makes him able to sit or walk better in his walker it will be worth it.
Im going to bed. Im not feeling well. Hope Im not getting sick. I don't have time for it.
Charlotte
(Warning, you may not want to read if you are not ready to read about funerals).
Another funeral today. This time for a 38 year old man. Someone I knew a long time ago, about 20 years but someone I had met again about a year ago. He had heart failure, diabetes, lung problems, blood clots, etc. He had come to our church to "get things right". We are happy to know that he did make things right with God before he was called home.
I really try to avoid funerals, especially since Matthew was born. In my mind I don’t won’t to go near a funeral home, much less to a funeral of someone so young. I was very upset whenever a new funeral home was built not far from my house. I have to pass by it every time I go anywhere. It never fails that whenever I go towards the casket at a funeral, my mind starts racing and I immediately start thinking about Matthew. Imagining it’s Matthew’s funeral. I know that’s awful but It’s the truth. I can’t help it. I didn’t have to sing at this funeral but I have sang at many during the last few years. Each funeral it gets harder and harder for me to say I’ll go. I will not go to a funeral where there is a death of a young child. Now, I say that but who knows what I’ll do if I ever have to make that choice.
My best friend since I was about three years old died at age 30 about 7 or 8 years ago. That was the hardest funeral I had to attend. He had a wife, and two very young children. He had a blood clot go to his heart from complications of a laser surgery used on his knee. It was a great loss for everyone. He was a wonderful man.
One thing that I noticed was that when I made my way to the casket at his funeral,was that it looked like him but it wasn’t. I then realized what it meant when the Bible talks about the soul of a man and the shell of that man. The shell is just something his soul lives in until God calls them home. That’s what it looked like, a shell. I could see or feel none of his spirit that I felt when I was around him. Kind of like when you see the locust shell stuck on tree, just a shell, no life or spirit. The only thing that really shocked me was the BIG smile the morticians had put on his face. It was really too big of a smile, but that was how he was when he was alive. He had always had a smile that went from ear to ear. That’s really the only thing that made the shell in the casket look like my best friend and that's what made the funeral so hard for me.
It was the same today after I cleared my mind. Just another shell. No smiles this time.
It’s good to know that the my faith in God and His Word helps me in times like these. What about people that don't know or believe in the soul and the shell of man? How do they cope?
Another thing. What do I want people to remember me for when I die? I mean, I could die tonight. We are not promised tomorrow. I don’t want to leave this world without knowing I made a difference in someone’s life. Not remembered for my material possessions because I surely don’t have a lot of those. When should we prepare for death? When we are older? No way, not me. It’s now or it could be never. It’s hard to prepare ourselves for something we don’t even like to talk about. I can say now that If Matthew goes home before I do, it won’t be like a traditional funeral. It will be sad but it will be filled with Balloons, NO FLOWERS that only die after a few days, Teddy Bears and Bells. His little soul and sweet spirit will be all around us and he'll see us celebrating his life even though we will mourn his beautiful "shells" death. Not a lot of sad music, maybe The Wiggles, Head Shoulders, Knees and Toes and Angel Among Us. I’ll read all the poems he inspired me to write and try to sing the songs he gave me and other people can share memories they made with him. Maybe like the time he bit them because Im pretty sure he has bitten everyone now, including me again tonight on my shoulder. Or how he always smiles every morning when he wakes up with the biggest toothiest smiles you've ever seen. I have lots of things I want to do like make a short film on his life, his happy times and how he made it through when no one thought he could. I hope my funeral can be more of a celebration than a funeral. It’s hard to think of it that way but I believe it can be done. A happy and a sad time instead of all sad.
Good Night
Charlotte
Another funeral today. This time for a 38 year old man. Someone I knew a long time ago, about 20 years but someone I had met again about a year ago. He had heart failure, diabetes, lung problems, blood clots, etc. He had come to our church to "get things right". We are happy to know that he did make things right with God before he was called home.
I really try to avoid funerals, especially since Matthew was born. In my mind I don’t won’t to go near a funeral home, much less to a funeral of someone so young. I was very upset whenever a new funeral home was built not far from my house. I have to pass by it every time I go anywhere. It never fails that whenever I go towards the casket at a funeral, my mind starts racing and I immediately start thinking about Matthew. Imagining it’s Matthew’s funeral. I know that’s awful but It’s the truth. I can’t help it. I didn’t have to sing at this funeral but I have sang at many during the last few years. Each funeral it gets harder and harder for me to say I’ll go. I will not go to a funeral where there is a death of a young child. Now, I say that but who knows what I’ll do if I ever have to make that choice.
My best friend since I was about three years old died at age 30 about 7 or 8 years ago. That was the hardest funeral I had to attend. He had a wife, and two very young children. He had a blood clot go to his heart from complications of a laser surgery used on his knee. It was a great loss for everyone. He was a wonderful man.
One thing that I noticed was that when I made my way to the casket at his funeral,was that it looked like him but it wasn’t. I then realized what it meant when the Bible talks about the soul of a man and the shell of that man. The shell is just something his soul lives in until God calls them home. That’s what it looked like, a shell. I could see or feel none of his spirit that I felt when I was around him. Kind of like when you see the locust shell stuck on tree, just a shell, no life or spirit. The only thing that really shocked me was the BIG smile the morticians had put on his face. It was really too big of a smile, but that was how he was when he was alive. He had always had a smile that went from ear to ear. That’s really the only thing that made the shell in the casket look like my best friend and that's what made the funeral so hard for me.
It was the same today after I cleared my mind. Just another shell. No smiles this time.
It’s good to know that the my faith in God and His Word helps me in times like these. What about people that don't know or believe in the soul and the shell of man? How do they cope?
Another thing. What do I want people to remember me for when I die? I mean, I could die tonight. We are not promised tomorrow. I don’t want to leave this world without knowing I made a difference in someone’s life. Not remembered for my material possessions because I surely don’t have a lot of those. When should we prepare for death? When we are older? No way, not me. It’s now or it could be never. It’s hard to prepare ourselves for something we don’t even like to talk about. I can say now that If Matthew goes home before I do, it won’t be like a traditional funeral. It will be sad but it will be filled with Balloons, NO FLOWERS that only die after a few days, Teddy Bears and Bells. His little soul and sweet spirit will be all around us and he'll see us celebrating his life even though we will mourn his beautiful "shells" death. Not a lot of sad music, maybe The Wiggles, Head Shoulders, Knees and Toes and Angel Among Us. I’ll read all the poems he inspired me to write and try to sing the songs he gave me and other people can share memories they made with him. Maybe like the time he bit them because Im pretty sure he has bitten everyone now, including me again tonight on my shoulder. Or how he always smiles every morning when he wakes up with the biggest toothiest smiles you've ever seen. I have lots of things I want to do like make a short film on his life, his happy times and how he made it through when no one thought he could. I hope my funeral can be more of a celebration than a funeral. It’s hard to think of it that way but I believe it can be done. A happy and a sad time instead of all sad.
Good Night
Charlotte
Some of the jerks start off looking like "startles" or "falling" reactions. Kind of like when you lay a newborn on his/her back with no clothes on. They look like they are falling and there arms and legs fly up in the air. They throw their hands up as if they need to grab on to something. Well that's how Matthew's started out when he was one year old. The neuro didn't call them Myoclonic then, he called them something else I can't recall the name. He was put on 60 mg of topomax. It stopped them because it kept Matthew groggy and like a zombie.
HE started this six months ago: Any little noise would scare him so bad, he would jerk. Most of his was noticed when waking up in the morning or from a nap. You have to be really quiet when you first go to his bed to get him up. It's the least we can do for him considering his blindness. I thought that was why he was having the jerks because we were not letting him know we were coming or just touching him would scare him if we didn't say something to let him know we were close by.
Well, this turned into more jerks every morning, every time he woke up, even from his naps. Jerk after Jerk after Jerk. Sometimes as many as 50 in an hours time.
When he has the jerk, he looks up over his shoulder as if he was looking to see who was "plucking" him on his head. IF he's in his walker or standing up, his knees buckle and his head drops. He never loses consciousness and the doctor says they arn't hurting him but they make Matthew irratable.
Next he started having them when he was going to bed at night or going to sleep for a nap. Not as many when falling asleep but enough to keep him from going to sleep sometimes.
I did some research and found that diet has a lot to do with seizures. Some are even treated with a high fat no sugar diet. That got me to thinking. The same time we switched from infant formular to pediasure was about the time his jerks started.
Pediasure is loaded with sugar! He was on it about 4 mos before I realized the connection. I took him off the pediausure for two weeks. His jerks were less and less every day. We switched back to infant formular, added Polyvisol vitamin drops and one half tums with calcium to make up for some of the vitamins missing when I stopped the pediasure. The neuro also put him on Lamictal an he is totally weaned from the Topomax after about 4 months of slowly reducing it.
To confirm my experiment, I gave him a bottle of pediasure before nap time after he had been off of it for two weeks. When he woke up he had about 45 jerks. That told me it had something to do with the sugar.
The less sugar I give him the lesser the jerks. I took him off the pediasure before the full dosage of Lamictal was given so I am positive it was all the sugar in the pediasure.
We have switched back to the infant formular, as only a suppliment and he's doing much better.
If I could get him totally off the sugar, I believe he would be seizure free. That's what Im working on now. I use Splenda (made from sugar) in most of his food and drinks. His phenylbarbitol is loaded with sugar too but there's not any thing I can do about that.
Things like diet and sugar were never mentioned to me by his neuro. I wonder why? I'll be asking next time we go back.
I have learned to always try home rememdies before loading your child up on antibiotics or seizure medicines. Of course I had to learn the hard way. His croup virus is almost gone except for a little runny nose.
Well I am exhausted. We are heading to Shriners Hospital tomorrow for more botox shots. Maybe. Last time we were there they said his legs were not worse but not better either. I plan to ask them about casting.. Something else that could delay tendon release surgery as long as possible.
I am going to bed now. Good Night.
HE started this six months ago: Any little noise would scare him so bad, he would jerk. Most of his was noticed when waking up in the morning or from a nap. You have to be really quiet when you first go to his bed to get him up. It's the least we can do for him considering his blindness. I thought that was why he was having the jerks because we were not letting him know we were coming or just touching him would scare him if we didn't say something to let him know we were close by.
Well, this turned into more jerks every morning, every time he woke up, even from his naps. Jerk after Jerk after Jerk. Sometimes as many as 50 in an hours time.
When he has the jerk, he looks up over his shoulder as if he was looking to see who was "plucking" him on his head. IF he's in his walker or standing up, his knees buckle and his head drops. He never loses consciousness and the doctor says they arn't hurting him but they make Matthew irratable.
Next he started having them when he was going to bed at night or going to sleep for a nap. Not as many when falling asleep but enough to keep him from going to sleep sometimes.
I did some research and found that diet has a lot to do with seizures. Some are even treated with a high fat no sugar diet. That got me to thinking. The same time we switched from infant formular to pediasure was about the time his jerks started.
Pediasure is loaded with sugar! He was on it about 4 mos before I realized the connection. I took him off the pediausure for two weeks. His jerks were less and less every day. We switched back to infant formular, added Polyvisol vitamin drops and one half tums with calcium to make up for some of the vitamins missing when I stopped the pediasure. The neuro also put him on Lamictal an he is totally weaned from the Topomax after about 4 months of slowly reducing it.
To confirm my experiment, I gave him a bottle of pediasure before nap time after he had been off of it for two weeks. When he woke up he had about 45 jerks. That told me it had something to do with the sugar.
The less sugar I give him the lesser the jerks. I took him off the pediasure before the full dosage of Lamictal was given so I am positive it was all the sugar in the pediasure.
We have switched back to the infant formular, as only a suppliment and he's doing much better.
If I could get him totally off the sugar, I believe he would be seizure free. That's what Im working on now. I use Splenda (made from sugar) in most of his food and drinks. His phenylbarbitol is loaded with sugar too but there's not any thing I can do about that.
Things like diet and sugar were never mentioned to me by his neuro. I wonder why? I'll be asking next time we go back.
I have learned to always try home rememdies before loading your child up on antibiotics or seizure medicines. Of course I had to learn the hard way. His croup virus is almost gone except for a little runny nose.
Well I am exhausted. We are heading to Shriners Hospital tomorrow for more botox shots. Maybe. Last time we were there they said his legs were not worse but not better either. I plan to ask them about casting.. Something else that could delay tendon release surgery as long as possible.
I am going to bed now. Good Night.
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