Community Forum Archive

Finding triggers?? What causes developmental delays?

Tue, 11/12/2013 - 15:18
Hello, I am new to this website and have just been viewing stories, comments, etc. I recently responded to a comment, but feel I have more questions I would like to ask. I am finding it really informative to read through everything although also scary as I did not realize how complex epilepsy is. My son has been diagnosed with infant epilepsy at 6 months. He had his first 4 seizures though at 5 months. He is now 10 months and is currently still having myoclonic seizures, while on his second medication Keppra. He has had all the tests, EEGs, MRI, CT scan, blood work, urine/stool samples, the works. However the cause is still unknown. Our medical team is still looking into this. Should I be looking for triggers? Light sensitive, foods, deficiencies, constipation, etc?? Has anyone found factors that seem to help? I have been trying to find some commonality amongst all the seizures as I want to know what seems to be triggering them. There are just so many variables. A woman in my home community said her daughter had a food allergy triggering her seizures. We just had some recent blood work and his iron and vitamin B12 were low. Since all the medication his appetite has gone down and spits out/up fluids and foods. It has been hard to keep him hydrated and full of nutrients. On days when he does have a seizure he is so exhausted he sleeps most of the day and just takes in breast milk. Since our son has had so many seizures, the neurologist was expecting to see some developmental delays, however when we saw her last month he is developing appropriately for his age. I am wondering what exactly the developmental delays are from or associated with??? Is it from the seizure themselves with the lack of oxygen to the brain?? Our son's seizures are between 1 - 3min long and he comes out of them himself, although exhausted. Or is it from the decreased time to develop appropriately because they sleep so much following a seizure? Or combination of both? Also it sounds like some medications also can attribute to growth and development. Any information would be greatly appreciated. Thank you.

Comments

Re: Finding triggers?? What causes developmental delays?

Submitted by just_joe on Wed, 2013-11-13 - 17:33

I read your post and admire you for your effort. You have several questions.

I am finding it really informative to read through everything although also scary as I did not realize how complex epilepsy is... Well it can get more complex and scary if it were you rather than your son. But at least you have the web and are trying to gain knowledge and help your son. If I were to chose I would say you are the mother. Not that dads would not be trying to find out thing be I know many would read and not post. I know becasue I am a male and I check on things I want to find out about. Once I find out I do not necessarily tell others or question others.

First you need to understand that all any seizure is is an electrical impulse going off in the brain wrong and by doing that it causes a chain reaction. The seizure is a chain reaction and until the chain stops the person will be in the seizure. An easy way to look at it is using dominoes. Picture a set of dominoes all lined up next to each other then tapp the first (electrical impulse hitting wrong). That domino falls into the next which falls into the next until all the dominos have fallen. The end of the chain reaction. Now what happens if you put your finger between the 2nd and 3rd domino? It does not hit the 3rd which means your finger (medication) stopped the chain reaction.

Now as for him being tired. He should be considering all the activity his brain went thru. Even an absence seizure takes energy out of someone.

Developmet is another issue but I have heard some say one thing and others say differently. About 3 days ago there was a post about a baby who was developing at normal rates and the lady was surprised to see that because she too had been told the baby might not.

I would not try to find triggers yet. It isn't easy to find them and triggeres are different with each person. Just like seizures are different with each person. They can be put in types but the same seizure type with one person might not be the same with another. I know some of my triggers and I watch out for them but until you know that type of seizures and their cause trying to find triggers would be like finding a needle in a hay stack.

Many people have had tests which came up normal. I was one of them. It took about 15 EEG's before they saw any abnormality (seizure activity). In that EEG they located the area in my brain it came from and went to what was a test like the MRI today. In viewing the area they found faint area which showed scared brain tissue which came from a blow to the head which should have knocked me out. But that test was done over a year after my first grande mal seizure.

son has had so many seizures??? My question is you posted 4 which can be a low number to many of us. I have several types of seizures and I have had 3-5 a day now those are partial or complex partial but when I was a teen I had 1-3 focal motor seizures which looked like grande mal seixures. In other words full blown convulsions. My seizure count was generally 5-8 a week other tham the convulsive ones.

Medications today are being created to work on types of seizures. As for Keppra I am currently on keppra and have been using it for many years. I can say that it have been the best medication I have taken in the 50+ years I have been living with epilepsy. It has not only reduced the number of seizures but it has also reducet the time in the seizure as well as the time to get back to normal.

I sincerly hope this helps and do come back and let us know how he is doing. If yo uhave more questions by all means post them

Joe

I read your post and admire you for your effort. You have several questions.

I am finding it really informative to read through everything although also scary as I did not realize how complex epilepsy is... Well it can get more complex and scary if it were you rather than your son. But at least you have the web and are trying to gain knowledge and help your son. If I were to chose I would say you are the mother. Not that dads would not be trying to find out thing be I know many would read and not post. I know becasue I am a male and I check on things I want to find out about. Once I find out I do not necessarily tell others or question others.

First you need to understand that all any seizure is is an electrical impulse going off in the brain wrong and by doing that it causes a chain reaction. The seizure is a chain reaction and until the chain stops the person will be in the seizure. An easy way to look at it is using dominoes. Picture a set of dominoes all lined up next to each other then tapp the first (electrical impulse hitting wrong). That domino falls into the next which falls into the next until all the dominos have fallen. The end of the chain reaction. Now what happens if you put your finger between the 2nd and 3rd domino? It does not hit the 3rd which means your finger (medication) stopped the chain reaction.

Now as for him being tired. He should be considering all the activity his brain went thru. Even an absence seizure takes energy out of someone.

Developmet is another issue but I have heard some say one thing and others say differently. About 3 days ago there was a post about a baby who was developing at normal rates and the lady was surprised to see that because she too had been told the baby might not.

I would not try to find triggers yet. It isn't easy to find them and triggeres are different with each person. Just like seizures are different with each person. They can be put in types but the same seizure type with one person might not be the same with another. I know some of my triggers and I watch out for them but until you know that type of seizures and their cause trying to find triggers would be like finding a needle in a hay stack.

Many people have had tests which came up normal. I was one of them. It took about 15 EEG's before they saw any abnormality (seizure activity). In that EEG they located the area in my brain it came from and went to what was a test like the MRI today. In viewing the area they found faint area which showed scared brain tissue which came from a blow to the head which should have knocked me out. But that test was done over a year after my first grande mal seizure.

son has had so many seizures??? My question is you posted 4 which can be a low number to many of us. I have several types of seizures and I have had 3-5 a day now those are partial or complex partial but when I was a teen I had 1-3 focal motor seizures which looked like grande mal seixures. In other words full blown convulsions. My seizure count was generally 5-8 a week other tham the convulsive ones.

Medications today are being created to work on types of seizures. As for Keppra I am currently on keppra and have been using it for many years. I can say that it have been the best medication I have taken in the 50+ years I have been living with epilepsy. It has not only reduced the number of seizures but it has also reducet the time in the seizure as well as the time to get back to normal.

I sincerly hope this helps and do come back and let us know how he is doing. If yo uhave more questions by all means post them

Joe

Re: Finding triggers?? What causes developmental delays?

Submitted by aprilrunge on Thu, 2013-11-14 - 15:05

Have you ever considered the Ketogenic Diet? John Hopkins just posted a video about curing infantile spasms with dietary therapy. It is also a first line treatment for that type of seizure.

With your son being so young, quick eradication of seizures Hopkins mentions as being important.  In terms of developmental delays, seizures interfere with learning....it is like the pause button being pushed each time they occur. Medications also slow the brain, so the speed in learning is also impaired.  My daughter suffered from uncontrolled epilepsy for over 1 year while we tried and failed meds. Despite being in status twice and hundred of thousands of seizures, she is academically okay.  I agree, I would tried to get the seizures stopped before worrying about triggers.  And if you have not done so already, I would check into dietary therapy especially if your child has failed 2 or more meds or is currently on 2 medications...from one mom to another. 

Good luck to you and I hope you find your magical treatment whatever it may be. 

April Runge mom to Nevin, Doose Syndrome, seizure free, med free and diet free co-author, www.gordyandthemagicdiet.com

Have you ever considered the Ketogenic Diet? John Hopkins just posted a video about curing infantile spasms with dietary therapy. It is also a first line treatment for that type of seizure.

With your son being so young, quick eradication of seizures Hopkins mentions as being important.  In terms of developmental delays, seizures interfere with learning....it is like the pause button being pushed each time they occur. Medications also slow the brain, so the speed in learning is also impaired.  My daughter suffered from uncontrolled epilepsy for over 1 year while we tried and failed meds. Despite being in status twice and hundred of thousands of seizures, she is academically okay.  I agree, I would tried to get the seizures stopped before worrying about triggers.  And if you have not done so already, I would check into dietary therapy especially if your child has failed 2 or more meds or is currently on 2 medications...from one mom to another. 

Good luck to you and I hope you find your magical treatment whatever it may be. 

April Runge mom to Nevin, Doose Syndrome, seizure free, med free and diet free co-author, www.gordyandthemagicdiet.com

Re: Finding triggers?? What causes developmental delays?

Submitted by just_joe on Fri, 2013-11-15 - 12:47

April

I have discussed the diet with my neurologist. He was the one that brought it up. I do know that it can and has helped many. I also know that the diet will not work on me because I would not stay on it. I have craving for many different things and once on it you are there for some time. When I am the one that cooks I also follow directions. I also change recipes to suite those that I am cooking for.

My epilepsy is due to scared brain tissue which is in more then one lobe. I have been under pretty good control but we have also added another medication and the number of seizures are going down again. We (my neuro and I ) are wanting to see if I can become seizure free again. I say again becasue I had been seizure free for 3+ years at one time in my life.

So I am not against the diet and by all means if it is a baby then it can be controlled better but after 40 years people may not stay on it and it does not mean it isn't a good diet it just means I know myself and I now I would eat something that is not on the diet. Oh and as for changing food and cooking. I have done that because my other half had a heart attack. The first thing was the diet. If you want a diet that will work for people with heart conditions or diabeties by all means get the American Heart Ass, cook book.

Take care April

Joe

April

I have discussed the diet with my neurologist. He was the one that brought it up. I do know that it can and has helped many. I also know that the diet will not work on me because I would not stay on it. I have craving for many different things and once on it you are there for some time. When I am the one that cooks I also follow directions. I also change recipes to suite those that I am cooking for.

My epilepsy is due to scared brain tissue which is in more then one lobe. I have been under pretty good control but we have also added another medication and the number of seizures are going down again. We (my neuro and I ) are wanting to see if I can become seizure free again. I say again becasue I had been seizure free for 3+ years at one time in my life.

So I am not against the diet and by all means if it is a baby then it can be controlled better but after 40 years people may not stay on it and it does not mean it isn't a good diet it just means I know myself and I now I would eat something that is not on the diet. Oh and as for changing food and cooking. I have done that because my other half had a heart attack. The first thing was the diet. If you want a diet that will work for people with heart conditions or diabeties by all means get the American Heart Ass, cook book.

Take care April

Joe

Re: Finding triggers?? What causes developmental delays?

Submitted by mereloaded on Fri, 2013-11-15 - 13:49
Unfortunately, for most there are no causes for epilepsy. Neurology is a vastly unknown field and the only epilepsy tests available are not comprehensive or definitive at all. There is ugh thing as idiopathic epilepsy, that is epilepsy due to unknown causes. Some can be genetic, metabolic... Some others because of a very difficult birth. Since he is very young, it would be impossible to determine triggers. With that being said, it would be a good idea to keep him from toys tht have flashing lights, avoid sudden loud noises to wake him abruptly and also make sure that he doesn't get too hot too fast. Last, keep an watchful eye on fevers as they bring on the seizures. Developmental delays may be exhibited at A later time. Right now since he is so young it is difficult to stablish developmental delays if any. Typically developmental delays can be seen by age two. Typical signs is delayed reach of motor milestones such as walking and poor verbal communication comparatively with peers. Epilepsy may or may not affect your child developmentally. It depends of the type of epilepsy, where in the brain, how long in betwwen seizures. Children brains are instantly growing, adapting and changing, so for some e spontaneous remission is possible, some are only child onset and are grown out, but agin, this is NOT the norm. Why epilepsy affects development. Because the nervous system controls ll functions and when the vein has abnormal activity it may temporarily affect cognitive functions. If the brain has, say, a faulty area, the brin then have to ind other ways to function resulting in possible disfunction in learning or symply learning a different way. Please know that is very possible to have a normal intellect and still have epilepsy. Epilepsy is a very broad condition and it encompasses many different types and severities. Best wishes!

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