Getting Meds into a 4 year old

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My 4 year old granddaughter had her first seizure in May. Since then we have only had a 19 day period of controlled seizures. She has Doose syndrome and is experiencing frequent drop seizures (full body, not the head drop). She is on 3 different meds and is fighting us every time to take them. we would like to try the ketogenic diet but if she is giving us such a hard time with meds, we are afraid she won't comply with the diet. It feels like a vicious cycle with no end in sight. Has anyone been here and does anyone have any encouraging advice?

Comments

WelcomeFirst seizure was last

Submitted by just_joe on Fri, 2016-08-26 - 11:43

WelcomeFirst seizure was last may. When was her last visit with her neurologist? Have you counted teh number of seizures she has had? When is her next appointment? With me I had an appointment 3 months after I had a seizure. then it was 6 months then a year. I say that because the neurologist have to give the patient time for the body to get used to the medication and the therapeutic levels to build in the body. Seizure medications are not like aspirin where once taken it goes away after a few hours. After 3 months the neurologists generally want a visit so medication dosages can be raised or decreased because they have more information on how the medication is working. It takes time to get medications and dosages set to get complete control of seizures. In that time dosages, medications and procedures can be looked at. The keto genic diet may be one of them. The person to aske would be the neurologist. It is a very strict diet and I know I wouldn't have stayed prefect on it and Doc knew it too. For me I have had months between seizures, Only to have a seizure then went a fed days then weeks then a few months. Seizures can also look like they have changed when in reality they are the same seizure but the time in them has changed. My seizures were 5-8 minutes long now those same seizures are 2-5 seconds. I can have one and the people I am around would know nothing about the seizure. The vicious cycle is there but you aree a part of it and it does take learning how to live and deal with epilepsy. It also depends on the word control. The neurologists want complete control and will work to gt that. I know I will never be completely seizure free. Doc knows it too. But that doesn't mean we haven't worked to get me there.Ask questios at every visit. Know the number of seizures she has had between visits so the neurologist can tell if the medication is reducingthe seizures. Understand that each persons seizures are different. They man have the same name. But how many Joe's are there? We are all different. So the cause and seizures are different and one medication can work for one person and not the next. Dosages are the same way.As for ways to help her ttake the medicatins. If liquid the taste is not good. Some people add it to juice like apple juice. Any way to change the bad tase might work. I would also advise you to get he My Epilepsy Diary. It can be found in the help section. Use it to make notes of the seizures she has. it has several sections time in the seizure if medicatins were taken or taken late and many other things. Give her neurologist permissin to bring it up and they can look at all the info and bring up teh graphs which would also help them determine if dosages need to be raised or lowered. There are several different types of seizures she can have. This site has a lot of information in it to help people understand more. For her type of seizures ___ https://www.epilepsy.com/learn/types-epilepsy-syndromes/doose-syndrome I hope this helps and she gets her seizures under controlJoe

WelcomeFirst seizure was last may. When was her last visit with her neurologist? Have you counted teh number of seizures she has had? When is her next appointment? With me I had an appointment 3 months after I had a seizure. then it was 6 months then a year. I say that because the neurologist have to give the patient time for the body to get used to the medication and the therapeutic levels to build in the body. Seizure medications are not like aspirin where once taken it goes away after a few hours. After 3 months the neurologists generally want a visit so medication dosages can be raised or decreased because they have more information on how the medication is working. It takes time to get medications and dosages set to get complete control of seizures. In that time dosages, medications and procedures can be looked at. The keto genic diet may be one of them. The person to aske would be the neurologist. It is a very strict diet and I know I wouldn't have stayed prefect on it and Doc knew it too. For me I have had months between seizures, Only to have a seizure then went a fed days then weeks then a few months. Seizures can also look like they have changed when in reality they are the same seizure but the time in them has changed. My seizures were 5-8 minutes long now those same seizures are 2-5 seconds. I can have one and the people I am around would know nothing about the seizure. The vicious cycle is there but you aree a part of it and it does take learning how to live and deal with epilepsy. It also depends on the word control. The neurologists want complete control and will work to gt that. I know I will never be completely seizure free. Doc knows it too. But that doesn't mean we haven't worked to get me there.Ask questios at every visit. Know the number of seizures she has had between visits so the neurologist can tell if the medication is reducingthe seizures. Understand that each persons seizures are different. They man have the same name. But how many Joe's are there? We are all different. So the cause and seizures are different and one medication can work for one person and not the next. Dosages are the same way.As for ways to help her ttake the medicatins. If liquid the taste is not good. Some people add it to juice like apple juice. Any way to change the bad tase might work. I would also advise you to get he My Epilepsy Diary. It can be found in the help section. Use it to make notes of the seizures she has. it has several sections time in the seizure if medicatins were taken or taken late and many other things. Give her neurologist permissin to bring it up and they can look at all the info and bring up teh graphs which would also help them determine if dosages need to be raised or lowered. There are several different types of seizures she can have. This site has a lot of information in it to help people understand more. For her type of seizures   ___ https://www.epilepsy.com/learn/types-epilepsy-syndromes/doose-syndrome    I hope this helps and she gets her seizures under controlJoe

WelcomeFirst seizure was last may. When was her last visit with her neurologist? Have you counted teh number of seizures she has had? When is her next appointment? With me I had an appointment 3 months after I had a seizure. then it was 6 months then a year. I say that because the neurologist have to give the patient time for the body to get used to the medication and the therapeutic levels to build in the body. Seizure medications are not like aspirin where once taken it goes away after a few hours. After 3 months the neurologists generally want a visit so medication dosages can be raised or decreased because they have more information on how the medication is working. It takes time to get medications and dosages set to get complete control of seizures. In that time dosages, medications and procedures can be looked at. The keto genic diet may be one of them. The person to aske would be the neurologist. It is a very strict diet and I know I wouldn't have stayed prefect on it and Doc knew it too. For me I have had months between seizures, Only to have a seizure then went a fed days then weeks then a few months. Seizures can also look like they have changed when in reality they are the same seizure but the time in them has changed. My seizures were 5-8 minutes long now those same seizures are 2-5 seconds. I can have one and the people I am around would know nothing about the seizure. The vicious cycle is there but you aree a part of it and it does take learning how to live and deal with epilepsy. It also depends on the word control. The neurologists want complete control and will work to gt that. I know I will never be completely seizure free. Doc knows it too. But that doesn't mean we haven't worked to get me there.Ask questios at every visit. Know the number of seizures she has had between visits so the neurologist can tell if the medication is reducingthe seizures. Understand that each persons seizures are different. They man have the same name. But how many Joe's are there? We are all different. So the cause and seizures are different and one medication can work for one person and not the next. Dosages are the same way.As for ways to help her ttake the medicatins. If liquid the taste is not good. Some people add it to juice like apple juice. Any way to change the bad tase might work. I would also advise you to get he My Epilepsy Diary. It can be found in the help section. Use it to make notes of the seizures she has. it has several sections time in the seizure if medicatins were taken or taken late and many other things. Give her neurologist permissin to bring it up and they can look at all the info and bring up teh graphs which would also help them determine if dosages need to be raised or lowered. There are several different types of seizures she can have. This site has a lot of information in it to help people understand more. For her type of seizures ___ https://www.epilepsy.com/learn/types-epilepsy-syndromes/doose-syndrome I hope this helps and she gets her seizures under controlJoe

Getting Meds into a 4 year old

Comments

WelcomeFirst seizure was last

Submitted by just_joe on Fri, 2016-08-26 - 11:43

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