Nate started out doing great on his medicine until....... they changed it to 2 a day. The first day, he laid in bed all day. We couldn't get him up. He said that he just felt like it was a lazy day and he didn't feel like getting up. The second day, he tried to do the same thing but Matt and I decided to get him out of the house and take him to the IMAX to see Transformers 2. That was great until that night. I guess it was too much excitement and he had 2 seizures during the night. So, he slept all day the next day. This week has been terrible. He is sooooo scared of EVERYTHING and I do mean EVERYTHING. He will not even go to the bathroom by himself. So, that means Mommy can't go by herself either. I find myself getting aggravated at him a lot, but I just have to keep telling myself "He can't help it" I just really wish he could be his old self. Before he was so mischievous. Now, he's a couch potato. It amazes me that one day everything is fine and the next, your whole world and way of living is turned up side down. The fits that the doctor warned us about has started. He has moment where he gets sooooo upset about the smallest of things. One minute he's fine and the next he has these rages of anger. And I think he has started to realize it too. Tonight he got upset and started to scream and stomp around and he looked at me and said, "Mommy just hold me down". What do I do? It is so hard. I am SCARED TO DEATH to send him to school in 3 weeks. He starts to school on the 11th and then the 13th he goes to Children's Hospital for more tests. Keep your fingers crossed that when we go to Children's we will get answers.
NIKOLAS: is doing great. I haven't even mentioned him in a while. (I know, I'm a bad Mom) He is 19 months old and the last few day he has used to potty more times than his diaper. He will run through the house yelling "Potty Mommy" It is so cute and sad at the same time. He is sooo smart. My goal is to have him completely out of diapers by his 2nd birthday. And right now his big thing is Nate's Nintendo DS. He really thinks he's playing the games and he cries for it when Nate has it. And he cries to go and see my Mom and Dad every morning. I forgot my camera at my Moms but as soon as I get it back I will post recent pictures of him and Nate.
Thursday, July 23, 2009
Saturday, July 4, 2009
BAD DAY (for Mommy)
Since finding out what was wrong with Nate. He has been so excited to start taking his new medicine. When Dr. Dabbs was telling us about the Topamax he said, "I am going to prescribe him the Topamax Sprinkles, they are capsules that you can break open and sprinkle on ice cream." Well, I don't think he quite had Nate's attention until the moment he said ICE-CREAM!!! After that, He was ALL EARS
After we left the doctors office we went to absolutely every pharmacy in Jasper and NO ONE had it and said it would be next week until they could get it. SO we came home and I called around and still couldn't find it. Luckily Matt's aunt works at the Son's Pharmacy in Parrish and I called her and she said they would have it the next day. I went to pick it up and guess what? THEY DON'T ACCEPT OUR INSURANCE!!!!!!! The pharmacist said, "You could just pay for if you would like." I said, "Sure, how much is it?" I have a flex card with a $1500 dollar limit so I thought hey, a hundred dollars maybe even two won't be so bad. She said "SEVEN-HUNDRED EIGHT -FOUR DOLLARS." I could have died. I was SO upset... So I took the prescription back and went home. Matt's mom does a ladies nails from the Jasper store so she called her. I called them and gave them all of Nate's information and it went right through. So, they sent someone to the Parrish store to pick it up. She called me and said, "Its here run up here, give me the prescription and I will run it through and you will be in and out in no time." So I did and when I got there she was gone and they told me it would be an hour and a half wait. So I waited..... and waited ..... and waited..... Finally, they called me up there and I gave them my flex card and GUESS WHAT????? They don't accept them!!!! I mean it was only $41.30. But all I had was my flex card. No wallet. I forgot it at home. I was devastated. I ran to the car, got my cell phone and called Matt I was crying and SO upset I could barely talk. He said, "Baby, just come on home its 7:30 and they close in 15 minutes and I don't have time to get there. He will be okay tonight and we will get it tomorrow. CALM DOWN" Well, I turned around to look to see if there were any cars coming so I could leave and guess who drove up? My MOM AND DAD!!!! He had been to Urgent Care and was stopping by to get water. I don't think I had ever been so happy to see anyone. So I jumped out of the car and ran over there and he said, "What is wrong?" So I tried to tell them, while crying, by this time I was crying because I was so glad to see them. My Dad said, "Come on, lets go and get my little buddy's sprinkles." When I got home, Nate met me at the car because he was ready for some ice cream with SPRINKLES. So we came inside and I got it out of the bottle and he said, "WHAT? That's not sprinkles, that's medicine. Don't them crazy people know that if they would make those sprinkles different colors little kids might like them?" (these were solid white) We got so tickled at him. He decided that he would be a big boy and just swallow it because he thinks bedtime is not a good time to be eating ice cream. I couldn't believe those words just came out of his mouth. Matt checked his forehead for fever! :) and said "Did he just say that?" And he did he popped it right in and swallowed it. Just like a BIG BOY!
He has now had 2 doses and I don't know how long it should take it to really get into his system and start working but, we only got up once last night. Yay!!! And today he was layed back and easy going. He wasn't hyper at all. Matt said that when he stared taking it, He could tell a difference in the way he felt immediately. Keep your fingers crossed that he will respond to it like they are hoping.
Friday, July 3, 2009
All about Nate
Nate had a special visitor today. Since Nate started school I could not tell you how many times I had to go and pick him up because he had a migraine. Mrs. Norris, his teacher has a son (12 years old) who has them so she knew when he was really sick. Every week she would ask have you found out anything about his headaches? And each week I would say No. Well, Wednesday morning I called her to let her know that we finally had answers. She was so excited and told me to tell Nate that she would be praying for him and she loved him. Well, yesterday morning she called and said, "I'm at Wal-Mart. I thought I would pick Nate up a few things that he could do inside the house since he can't spend a lot of time outside. Do you mind if I come by to see him?" I thought that was a great idea because he has been asking when he could go and see her. She came and he was so happy. She brought a gift back packed full of goodies. Coloring books, crayons, dinosaurs, cowboys and Indians, books and puzzles. She even had a surprise for Nikolas.
She sat and talked with Nate for a few minutes and told him that she had put him on the prayer list at church. He said I really appreciate that because I have been worrying and worrying and worrying. I still don't think he quite understand any of this. But he does enjoy the attention and the inside toys he's been getting.
Mrs. Norris turned out to be a wonderful teacher and we love her so much. I just pray that his first grade teacher will be as understanding with the things that Nate is dealing with.
She sat and talked with Nate for a few minutes and told him that she had put him on the prayer list at church. He said I really appreciate that because I have been worrying and worrying and worrying. I still don't think he quite understand any of this. But he does enjoy the attention and the inside toys he's been getting.
Mrs. Norris turned out to be a wonderful teacher and we love her so much. I just pray that his first grade teacher will be as understanding with the things that Nate is dealing with.
Wednesday, July 1, 2009
"Benign Occipital Epilepsy"
I know I have been a terrible blogger, I can't believe its been so long since I have posted. But we have had a pretty busy/rough few months. After alot of sleepless nights and wonderful doctors and tests. We finally have a diagnosis for Nate.... I never posted about this when it happened but....
A few weeks ago we went to my nephew Conner's 1st Birthday party. It was on Sunday afternoon and it was really hot but a beautiful day and Micky and Amy decided to have it outside so that all of the kids could just play and have fun. We got there and Nate started to play with all of the other kids. He played for about an hour and I noticed he was sitting on the golf cart with his Uncle Mick Mick. They were talking and I thought everything was fine. And before I knew it..... Nate was standing beside me saying that he didn't feel so well. He said, "My tummy hurts, I think I am going to be sick." My Mom asked him if his head hurt and he said "Yes really bad" (His migraines hit him all at once. No warning he goes from not having a headache at all to a full blown make him throw up Migraine) Then my mom said "Jana look at that baby, get him." He was turning really pale. Then before I could get to him, he fell over onto my Moms lap and I thought he was throwing up so I ran around to him and his eyes were rolled back into his head and he was BLUE. I scooped him up and started screaming for Amy (she's an RN) He went as limp as a dishrag and I almost dropped him. Micky ran to get him from me and he got REALLY REALLY STIFF. We ran in the house where Amy was and she said, "Lay him down he's having a seizure." He laid there just staring for a few minutes and he finally started to talk to us. He couldn't raise his arms or legs he could just talk. He was SO tired and wanted to go to sleep so I carried him to the tub to cool him off and he still couldn't walk and was still SO pale no color what so ever his lips were so white. I was SO scared. We went to the ER and after we were there for about 30 minutes he finally started getting his color back. They had no answers for us. They just said watch him and if it happens again call 911. Which wasn't good enough. I put him between Matt and me and I watched him all night. I think I got maybe 2 hours of sleep. Monday morning we were at Dr Dabbs office first thing because I wanted answers.. He checked him over really good and said that we need to go to Children's Hospital for test. So we did.....
They did an EEG and we got the results yesterday. He has Benign Occipital Epilepsy. It is in the back lower part of his brain. The epilepsy causes him to have migraines because of where its at. And the migraines causes him to have seizures. He said that its like the Migraine and the Epilepsy are butting heads constantly. He said that on a scale of 1 to 10 Nate's migraines are a 15....completely off the chart. During the EEG, Nate had 3 seizures. 90% of his seizures happen while he is sleeping. And they cause hallucinations. (Which explains ALOT) He woke up last night screaming for me to come and help him because there were snakes everywhere in the house. And I keep telling him No baby there are no snakes and after about 15 minutes he started to calm down. I could not tell you how many times he has woke me up because he has seen things. I thought he was dreaming but now we know he was having seizures and he really thinks these things are real. I have also noticed that some nights he would go to bed early and sleep really late, and still lay around the rest of the day. I thought it was because he was just tired. Dr. Dabbs said that it was probably because he had seized most of the night and his body was just so drained. We go back to Children's Hospital next week for a MRI. They just want to be 100% sure that there is nothing else back there causing him to seize. He starts taking Topamax 25 mg tomorrow night. He will take that for 2 weeks and then they will increase it to 50 mg a day. Which is really scary because Matt takes 50 mg a day. He's 28 and Nate's only 6. The neurologist at Children's said that he has never prescribed it to anyone as young as Nate and it has not even been approved by the FDA for children. But Nate needs it because it treats the migraine and the epilepsy. He said, "We will be trying to kill two birds with one stone, so to speak." He will take this for 2 months and then we will go back to Children's for another EEG to determine whether or not the Topamax is controlling the seizures. While on this medicine, they don't want him to get too hot because it could cause a Heat Stroke. Nate has always been one to play outside from dawn to dusk but since the seizure at Micky's house, he has been scared to go outside and play. He goes out for about 15 to 20 minutes at a time and comes inside to lay down. Thank the Good Lord above he hasn't had another "awake seizure" as he calls it.
I feel so bad, because after reading about all of the symptoms and side effects of BOE, I now understand a lot of the different things I have noticed about Nate.
Please keep him in your prayers. Pray that the meds will do what the Doctors want them to do. And pray that Matt and I will be the parents that Nate needs us to be. And that we will make the best decisions for him.
"I can do all things through Christ which strengthens me" Phil. 4:13
A few weeks ago we went to my nephew Conner's 1st Birthday party. It was on Sunday afternoon and it was really hot but a beautiful day and Micky and Amy decided to have it outside so that all of the kids could just play and have fun. We got there and Nate started to play with all of the other kids. He played for about an hour and I noticed he was sitting on the golf cart with his Uncle Mick Mick. They were talking and I thought everything was fine. And before I knew it..... Nate was standing beside me saying that he didn't feel so well. He said, "My tummy hurts, I think I am going to be sick." My Mom asked him if his head hurt and he said "Yes really bad" (His migraines hit him all at once. No warning he goes from not having a headache at all to a full blown make him throw up Migraine) Then my mom said "Jana look at that baby, get him." He was turning really pale. Then before I could get to him, he fell over onto my Moms lap and I thought he was throwing up so I ran around to him and his eyes were rolled back into his head and he was BLUE. I scooped him up and started screaming for Amy (she's an RN) He went as limp as a dishrag and I almost dropped him. Micky ran to get him from me and he got REALLY REALLY STIFF. We ran in the house where Amy was and she said, "Lay him down he's having a seizure." He laid there just staring for a few minutes and he finally started to talk to us. He couldn't raise his arms or legs he could just talk. He was SO tired and wanted to go to sleep so I carried him to the tub to cool him off and he still couldn't walk and was still SO pale no color what so ever his lips were so white. I was SO scared. We went to the ER and after we were there for about 30 minutes he finally started getting his color back. They had no answers for us. They just said watch him and if it happens again call 911. Which wasn't good enough. I put him between Matt and me and I watched him all night. I think I got maybe 2 hours of sleep. Monday morning we were at Dr Dabbs office first thing because I wanted answers.. He checked him over really good and said that we need to go to Children's Hospital for test. So we did.....
They did an EEG and we got the results yesterday. He has Benign Occipital Epilepsy. It is in the back lower part of his brain. The epilepsy causes him to have migraines because of where its at. And the migraines causes him to have seizures. He said that its like the Migraine and the Epilepsy are butting heads constantly. He said that on a scale of 1 to 10 Nate's migraines are a 15....completely off the chart. During the EEG, Nate had 3 seizures. 90% of his seizures happen while he is sleeping. And they cause hallucinations. (Which explains ALOT) He woke up last night screaming for me to come and help him because there were snakes everywhere in the house. And I keep telling him No baby there are no snakes and after about 15 minutes he started to calm down. I could not tell you how many times he has woke me up because he has seen things. I thought he was dreaming but now we know he was having seizures and he really thinks these things are real. I have also noticed that some nights he would go to bed early and sleep really late, and still lay around the rest of the day. I thought it was because he was just tired. Dr. Dabbs said that it was probably because he had seized most of the night and his body was just so drained. We go back to Children's Hospital next week for a MRI. They just want to be 100% sure that there is nothing else back there causing him to seize. He starts taking Topamax 25 mg tomorrow night. He will take that for 2 weeks and then they will increase it to 50 mg a day. Which is really scary because Matt takes 50 mg a day. He's 28 and Nate's only 6. The neurologist at Children's said that he has never prescribed it to anyone as young as Nate and it has not even been approved by the FDA for children. But Nate needs it because it treats the migraine and the epilepsy. He said, "We will be trying to kill two birds with one stone, so to speak." He will take this for 2 months and then we will go back to Children's for another EEG to determine whether or not the Topamax is controlling the seizures. While on this medicine, they don't want him to get too hot because it could cause a Heat Stroke. Nate has always been one to play outside from dawn to dusk but since the seizure at Micky's house, he has been scared to go outside and play. He goes out for about 15 to 20 minutes at a time and comes inside to lay down. Thank the Good Lord above he hasn't had another "awake seizure" as he calls it.
I feel so bad, because after reading about all of the symptoms and side effects of BOE, I now understand a lot of the different things I have noticed about Nate.
Please keep him in your prayers. Pray that the meds will do what the Doctors want them to do. And pray that Matt and I will be the parents that Nate needs us to be. And that we will make the best decisions for him.
"I can do all things through Christ which strengthens me" Phil. 4:13
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