katiebug74
06-05-2006, 02:06 AM
Hi, I am Kate. Or as my son's friends call me "Robbie's Mom". We started Depakote sprinkles after the dr.decided to wean off of Carbatrol. We are completely off the Carbatrol now. But my son isn't eating, sleeping,his behavior is different, he wants to just sit on my lap. He has Cerebal Palsy (Right Hemiplegia), and vision problems also. He is a miracle. He was never supposed to walk or talk. He is 7 and going into the first grade with help. He usually runs and jumps. His seizures are usually 30 min long and sometimes longer. I give him diastat to make them stop, but it takes a few of them. He only has about 6 or 7 a year. I have kept him at a good level on the Carbatrol but I don't understand this Depakote sprinkles. He also takes concerta for ADHD but he has been on that a long time. These problems are new. We go to a dr in Iowa that I really don't like. Looks down on me and only likes to talk to my husband. I am the one that went to nursing school and I sub in special ed so I can learn more to help my son, and I only do that on my husbands days off so one of us is home if Robbie needs us. I am very frustrated. People say you have to deal with somethings, but he doesn't deserve to be miserable. Every day I work with him, hours and hours, in a playful way. It is like I am supposed to give up. But how can anyone give up? This is one of the 2 most precious people in my life (his sister Alice, oops better include hubby) . It is my job to be his #1 advocate, and I know him better than anyone. I just feel so frustrated. Has anyone been to mayo's with a younger child for seizure control? Or similar problems with Depakote sprinkles? Thank you so much.
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Steffers2318
06-05-2006, 01:21 PM
Hi, I can't help you with your question but I just wanted to say DON'T give up! You sound like you are doing a great job. If I were you I'd definately try to find a new doctor!
Funky Dynamite
06-07-2006, 02:12 AM
Hello Kate,
Please take into consideration that this is only my opinion....
It pleases me to hear a mom cares for her son so much. You sound better than some parents, that's for sure....
Let me say something to begin with: Doctors ultimately know...jack squat. They are not God (despite what some of them may lead you to think). They can only make guesses based upon their experience. It seems to me that why your son got to the point is because he has the love, support, and help he needed. Predictions like "he will never walk," in some cases, most that I have seen anyway, are kind of silly. They don't really know.
I have never heard of these Medicines you mention but I do know a bit about seizures. My friend, who I have known since high school, roughly for 20 years, has them, and so does my wife. First can I ask you some questions about your son's seizures? How violent are they? I mean all seizures are violent, but what exactly happens? In my experience seizures cannot be controlled, only lessened. My friend's doctors have switched her seizure medication so much that I fear she has suffered long term damage to her memory and understanding skills. In my experience you can only comfort the person until the seizure is over, ride it out as it were, and keep them from hurting themselves (or anybody else).
Also when it comes to medications I'm a firm believer in the phrase: Less is more. Doctors have a nasty habit of overmedicating their patients these days. They want to go for meds instead of real work and working things out with, and actually listening to, their patients. This is only an example but my mother-in-law takes about 6 meds. One to stablize moods, and the other 5 to counteract the side effects of the first. Ridiculous. Naturally I do understand that some meds are necessary however, especially cases like your son. But I would wary of that.
Yeah, I'm with Steffers: Kick that doctor to the curb if possible and find another, one that listen to your concerns.
God bless you and keep your son safe.
Please take into consideration that this is only my opinion....
It pleases me to hear a mom cares for her son so much. You sound better than some parents, that's for sure....
Let me say something to begin with: Doctors ultimately know...jack squat. They are not God (despite what some of them may lead you to think). They can only make guesses based upon their experience. It seems to me that why your son got to the point is because he has the love, support, and help he needed. Predictions like "he will never walk," in some cases, most that I have seen anyway, are kind of silly. They don't really know.
I have never heard of these Medicines you mention but I do know a bit about seizures. My friend, who I have known since high school, roughly for 20 years, has them, and so does my wife. First can I ask you some questions about your son's seizures? How violent are they? I mean all seizures are violent, but what exactly happens? In my experience seizures cannot be controlled, only lessened. My friend's doctors have switched her seizure medication so much that I fear she has suffered long term damage to her memory and understanding skills. In my experience you can only comfort the person until the seizure is over, ride it out as it were, and keep them from hurting themselves (or anybody else).
Also when it comes to medications I'm a firm believer in the phrase: Less is more. Doctors have a nasty habit of overmedicating their patients these days. They want to go for meds instead of real work and working things out with, and actually listening to, their patients. This is only an example but my mother-in-law takes about 6 meds. One to stablize moods, and the other 5 to counteract the side effects of the first. Ridiculous. Naturally I do understand that some meds are necessary however, especially cases like your son. But I would wary of that.
Yeah, I'm with Steffers: Kick that doctor to the curb if possible and find another, one that listen to your concerns.
God bless you and keep your son safe.
katiebug74
06-09-2006, 06:50 PM
Thank you for your reply! :-) Robbie's seizures are about 30-45minutes long. They are grand mal. He loses control over bowel and bladder, he vomits, and his whole body is involved. His eye brows twitch, his eyes go back and forth. He is usually post ictal for hours and hours. They don't happen very often, when he has grown and his blood level is low, or his is sick. ( his pediatrician and I have his blood taken about every 6-8 wks to keep it at level since he is a growning boy.) It turns out when we first started the change over to Depakote he was in the beginning phase of mono. I told his doctor that since this virus was in his system why couldn't that provoke a seizure? He wouldn't listen and treated me like I was dumb. So we started this Depakote sprinkles. I told you all the symptoms he has had. No one would listen, they got a level to make me stop and guess what. His liver enzymes were elevated. Then the doctor says I don't think he should be on this anymore. So he wanted to switch us to Lamictal. I said well we know the Carbatrol was working until he had mono. He said, but he was not symptomatic yet. And I said true, but the virus is still there and holds the capacity to cause the same problem as a symptomatic virus. I mean, and I don't mean to offend anyone, but if someone had aids, but they weren't symptomatic, would you still use the same precautions? The answer is yes. Because the same possiblilty is there. So after a long drawn out fight, Robbie is to start Carbatrol again. And we will see how that goes. I was so scared. My Robbie was not himself at all. And I know how bad it can get if the liver enzymes get to high. And I wanted something to not inhibit his learning like the phenobarbital did. That stuff is awful. He is able to write his name, first and last, he does so much. His biggest limitation is his vision. He is VERY smart. But that is another fight I have. :-) It is like they don't get that the biggest goal is to control as best we can and let this kid do what he is able to do. Robbie is amazing, everything he does is such a miracle. I just can't let them put a limit on it. I made my own seizure monitor for him. His seizures take place when he is sleeping. So, I got a bedwetting monitor that beeps for under his sheet then a baby monitor under his bed by the alarm and the reciever in my room on the table by my head. So I hear them when they happen,I am a light sleeper and I hear if he breathes funny. :-) The seizures scare me, and I don't want him to have them if he doesn't have to, but, I think dosing him heavy for when he is sick, which is not very often at all, is silly. If he is sick , I know to watch for them, and if we need to we can up the meds temporarily, or have him sleep with me, or I sleep with him. I am glad someone else believes as I do. My husband and I were feeling a little alone. But I did get him to call in an order for therapy this summer for his fine motor skills. At least that wasn't too hard. I learned my lesson on the meds. I had was on hormones for a number of hormone related issues. I took one hormone, at one point they had me at 14 pills a day for the side effects. But no one in my town would give me a hysterectomy, they say I was too young. So I went out of town, got a hysterectomy and now I only take my pill for reflux. I am better than I have been in years,I was having migraines for 2 wks at a time from the hormones.
Now I am on the hunt for a very good Pediatric Neurologist and a Neuro-Opthomologist in Illinois or Iowa if anyone knows any! :-)
Thank you so much everyone. God Bless You All! :angel:
Now I am on the hunt for a very good Pediatric Neurologist and a Neuro-Opthomologist in Illinois or Iowa if anyone knows any! :-)
Thank you so much everyone. God Bless You All! :angel: