My 2 year old has epileptic episodes

[milkymum]

I found out yesterday that my 2 year old has epileptic episodes. The professor neuro-consultant saw him because he knows about the case history of my family with my daughter who has a neuro-problem of a different nature and he has asked me to start recording a detailed dairy of his absence seizure episodes and any other episodes that he explained to me which I can't get my head around. Apparently rapid blinking and what looks like rapid muscle twitchers are also epiletic episodes and my son has both of these but conitnues with what he was doing will having them. The professor will see us again in January to go over the diary and hopefully by then as well he will of had his 24 hour EEG and MRI scan. He has also said that he will have to do a CT, CAT and MRA scan, blood tests and a 72 hour EEG and an x-ray later in the future. We spoke about what treatment we could look at and he feels that because my son's age he might benefit a diet called ketogenic diet were will have to do a high fat, adequate protein and low carbohydrate diet determined by the consultant and a dietician and it will have to be monitored by both of them. I have research this diet today and I feel very confident myself that this is the right route to go down but I am so nervous and full of concern. I know there was soemthing wrong with my little boy but I never thought that some-one would be willing to take notice and help us the way they are with him being so young.

Have anyon eelse do this diet with there children? If you have what have been your results?

Thank you to anyone who replies and that share there stories with epilepsy in there children and to anyone how has advice on this diet. It really is very much appreciated and I am hoping it will give me greater insight to this condition and diets that have helped other people

 

[RobinN]

My daughter is med free, and we have made nutritional changes. I can't say we follow a specific "diet", but eliminating refined foods, manufactured sugar products, additives, all has helped my daughter gain control over her seizures.

I am curious as to what neurological disorder your daughter has. I have a son on the ASD spectrum, and the same nutritional ideas are helping him as well.

BTW welcome to CWE

 

[milkymum]

My daughter is the diagnoses process of ADD and she also an elongated cerebal tonsil which could lead to her having tublara sklrosis. We are also in the process of getting that fully diagnosed. Both are neuro probelms which can take a very long time to get fully diagnosed. My eldest son is also being monitored for autism which his class teacher last year picker up on. He is a fiddler, developmental delaid by at least a year and can have episodes of acting more like a texted-book 2 year old. I findit hard to believe he has autism as he is very sensitive littl eboy so I think his out-bursts are more down to that than anything else but I could be wrong

 

[Meetz1064]

Dutch Mom, one of the other moderators here, has a son on the ketogenic diet. You might want to send her a private message to "talk" with her about it more...

 

[milkymum]

Thanks for that I will do that and talk to her about this diet

Not sure if it helps but I make all my children food myllef as my daughter is dairy intolerant so it is easier for me to deal with making things like chicken nuggets and meat-balls myself. I am just starting to adventure into making fresh pasta myself. My family and friend sthink I am mad for not just buying things from the supermarket as they just don't understand that I need to make siure that all food in the house is safe for my daughter and has not been contaminated in the making process. I think I am obsessed when it comes down ot things that can make my kids ill or trigger there illnesses that I want to control what they have and how it is made. But no matter which route I go down with my son I will do the same with his food. I also refuse to give them things like squash, fizzy pop or ready-made juice drinks I only give them fresh fruit juice diluted down to there taste and they are only allowed sweets once a week on treat-day which is a saturday

 

[Dutch mom]

Hello, welcome to CWE!

My 10-year old son is on the ketogenic diet for over 5 years.
You can read his story (in English) here http://site.matthewsfriends.org/index.php?page=joni-s-story

I would like to recommend the site www.matthewsfriends.org for information on the diet. The MF members forum is a very helpfull resource with great support for parents considering the diet. Just sign up and read all experiences of other parents in the archieves and ask any question; like here on CWE the members are very helpfull and responsive.

Take look at these threads in the nursery http://www.coping-with-epilepsy.com/forums/f42/prep-ing-4yo-keto-6292/ and http://www.coping-with-epilepsy.com/forums/f42/tweaking-keto-katie-6588/

Don't underestimate this diet; it's not a healthy diet at all. It's not easy to do, not for parents and not for kids. Your kid won't be able to eat (or not many, depending on the type of ketogenic diet, MCT or LCT/classical) no pasta, no bread, no potatoes, no rice, no fresh fruit juice. Vegetables and fruits are very limited. The diet mainly contains mayonaise, oils, cream, fat meat like bacon, eggs (70% MCT, 90% LCT is pure fat.) Snacks in between are very limited. Calories very restricted. You have to calculate and measure every ingredient on 0.1 grams. Therefore this diet - which can be very effective to control or reduce seizures in about 50-60% of children with a med resistand typ of E.- is a serious consideration when epilepsy causes serious mental and/or physical retardation and meds don't work.

 

[Meetz1064]

Lolol

Go figure, I just mentioned you, DutchMom!!! Thanks for popping in!

 

[milkymum]

Thank sfor that dutchs mom I will take a look at those links tomorrow once I have taken older 2 to school. I have afriend who has child on agluton free diet who is coming around tomorrow to talk and show me things that she makes for her child and is goingot take me shopping with her one day next week to were she buys all her childs food free to make the meals. I already give all my children gluton and dairy free cakes and biscuits on sweet-day and he loves these. He isn't a big bread eater so he won't miss that on the ketogenic diet but he loves his pasta and rice and can't get enough fresh fruit and veg. I have 2 children that adore there fruit and veg and 1 that is a normal child that would prefer to eat sweet foods instead of his veg and fruit. I wonder if it is there body telling them that sweet things are wrong for there bodies as they can't digest things that are in them properly. Very weird how our kiddies know what they need and what to avoid or at least that is the conclusion I have coem to with my daughter as if anyone offers he something that she is not sure of she always asks if they have milk in and we don't get her involved in making sure things are safe for her to eat.

Will keep an open mind about all the different diets though and way up all the pros and cons of them all before fully deciding which route to take to make sure I have made the right choose for him

 

[milkymum]

Should I record this or see if it happens again?

Lat night while bathing EJ his left leg started twitching as if he was having a muscle spavum IYKWIM. He was playing with his ducks and just as the twitching started he lost his drip on the duck and stirred like he does when having an absence episode. I'm not sure weither to record the leg twitching or not as it was only his left leg that was twitching the rest of his body was just still. Once the episode had finished his leg stopped twitching an dhe grabbed the duck back and told the duck it was bad. I don't know if he knows what is happening to him as he is delaied in development anyway and I don't bring to episodes to his attention unless he looks confused then I say "It's OK you went to the stars and your back again know" He will then point to a star we have on the ceiling and try to say star. i go thtis from my eldest as he deciced when EJ has an eisode he has spaced out and while this is happening he is an astronout that goes to space to see the stars, planets and maybe even see some aliens. For know I am happy explaining the episodes this way to my older 2 as I don't want them to get scared or panic when EJ has one of episodes. The older 2 are only nearly 8 and 5 so I don't feel they need to much detail about what is happening to there brother other than a nice positive explaination or am I just being to protect and I shgould explain to them what is happening and what the problem is. So many questions I just can't work out what to do

 

[epileric]

My advice would be that if ever you're not sure whether or not to record something, record it. If it is irrelevant than the neurologist can decide.

Best to mark down something the doctor doesn't need to know rather than not mark down something he does.

 

[Dutch mom]

[...] I have 2 children that adore there fruit and veg and 1 that is a normal child that would prefer to eat sweet foods instead of his veg and fruit. I wonder if it is there body telling them that sweet things are wrong for there bodies as they can't digest things that are in them properly. Very weird how our kiddies know what they need and what to avoid or at least that is the conclusion I have coem to with my daughter as if anyone offers he something that she is not sure of she always asks if they have milk in and we don't get her involved in making sure things are safe for her to eat.

Will keep an open mind about all the different diets though and way up all the pros and cons of them all before fully deciding which route to take to make sure I have made the right choose for him

Hello Milkymum,


It's difficult to combine keto with diary free. Without using cream (on the classical diet) or yoghurt/yoghurt drink (on the MCT diet) cooking is very limited.
As for fruits, on keto you can have very small portions of low carb fruit like strawberries, blueberries, apples etc. Bananas, grapes, oranges etc. are difficult to use because of too many carbs.
Potatoes, rice and pasta are to high in carbs to use in the classical ketogenic diet (90% fat.) On MCT (70% fat) you can use small amounts. You can use a bit of low carb pasta on the MCT diet.
You can use small pieces of (low carb) bread but this has all allowed carbs so on the classic diet you have to put a lot off butter on it or bake the bread in oil. You can use (a smaller amound of) fat cheese spread or fat meat to give with the bread.
On MCT you can use a bit larger amount of bread, diet butter and low-fat meat or cheese because the fats are allready in the keto shakes. On the MCT diet you use keto shakes with MCT-oil or Liquigen and you can use a bit more carbs in the meals. But these shakes don't taste very good and MCT often has severe diarhea as a side effect.

To give you an idea:
my son (age 10, 30 kilograms weight)
gets only 1150 calories a day
in 3 meals of 383 calories.

Each meal has:
38 grams fat
7 grams protein
2,6 carbohydrates
= ratio 4:1 (4x as much fat as carbs + protein together.)

We calculate classic ketogenic meals with a ketogenic diet planner on our pc.
We weigh every ingrediënt excactly on a 0.1 gram scale.

A few example meals for my son:

Omelet made off:
15 gr bacon
33 gr egg (raw weight)
6 gr sunflower oil
15 gr mayonaise
Desert: 3 gr strawberries

Tuna salad made of:
40 gr egg white (boiled weight)
20 gr tuna fish (John West)
8 gr omega oil
35,5 gr mayonaise
1 leaf of lettuce OR 10 gr cucumber (not both)
Desert: 22 gr strawberries

Chicken salad made off:
53 gr egg white (boiled weight)
20 gr chicken-curry salad (bought in the supermarket, allready made)
6 gr omega oil
22 gr mayonaise
1 leaf of lettuce/10 gr cucumber
Desert: 22 gr whipped cream (with sweetner) + a small cup of Senseo coffee

On the Matthews Friends website you can find many examples of ketogenic meals, on the MF members forum even more.

He can't have much snacks in between exept for 3 olives OR 3 macademia nuts and sugar free diet water ice pops without any calories. On MCT a kid can have a few pieces of fat cheese or meat/sausage in between.

My son only gets drinks with less than 1 calorie and tea with sweetner (can't have any sweetners ending on -ol or -ose like sorbitol because those have too many calories.)



Your kids preferences are more interesting than you might think, this can be an indication the diet has a good chance helping to control seizures. Before my son started the diet (June 2004) he had the same preference for fat and salty snacks instead of foods high in carbs and sweet snacks/candy
You might be interested in this article:

Try it, they might like it!

In this month’s issue of Ketogenic Diet News, we asked Dr. Adrianna Amari from the Kennedy Krieger Institute in Baltimore to report on her study which was published in the August 2007 issue of Epilepsy & Behavior. For many years, parents have asked me in their initial consultation, “Should my child go on the ketogenic diet? They LOVE bacon and eggs!” For years, I would then tell them, “They will probably love the food on the diet, and that’s good for sticking with it for a long time, but it has nothing to do with their epilepsy.” Dr. Amari has just proven that I am wrong! Her landmark study, which raises just as many questions than it answers, suggests that children’s brains are possibly telling their stomachs what to eat, and the ketogenic diet appears to be on the menu. Stay tuned for more studies to examine this exciting finding. | Eric Kossoff MD

The Ketogenic Diet – Kids With Epilepsy Appear to Prefer It
By Adrianna Amari, PhD

Although the ketogenic diet has been found to be highly effective for the treatment of epilepsy, it is not always considered as a treatment option by pediatricians, neurologists, or families themselves. One of the reasons for this is the perception that children will find the high-fat/low-carbohydrate regimen unpalatable. Consequently, it is anticipated that it will be difficult to get them to comply with the diet, particularly eating the high fat items and being restricted from typical treat foods like candy or chips.

Until recently, this perception of unpalatability had not been assessed systematically. In the August 2007 issue of Epilepsy & Behavior, we report on a study our group conducted to assess the food preferences of children with seizures. Specifically, we assessed children’s preferences for high fat foods compatible with, and high carbohydrate foods incompatible with the ketogenic diet. We wanted specifically to study children who were not on the ketogenic diet to see what their preferences were.
Fifty-nine children between the ages of 2 and 17 years, 29 with seizure disorders and 30 without, participated in a food choice assessment, in which they were asked to choose which item they preferred from pairs of food items. Small tastes of foods were randomly presented in pairs from out of a selection of 7 high fat and 7 high carbohydrate foods, such that each food item was eventually paired with every other food item during the procedure. This method resulted in a rank order of preferences, and also enabled us to calculate preference scores for both the high fat and high carbohydrate food groups.

We were not surprised to find that children without seizure disorders preferred such typical treat items as candy corn and tortilla chips, but were quite surprised to find that children with seizure disorders actually preferred such atypical items as mayonnaise and cream cheese! Overall, children with seizure disorders had significantly higher preferences for high fat versus high carbohydrate items, while children without seizure disorders had the opposite preferences.

Preferences and Perceptions

Parents were also surprised by these preferences. During this study, we had additionally assessed parents’ predictions of child food preferences, and found that parents’ perceptions of what their children may or may not prefer were often inaccurate.

Most parents did not think their children would prefer the high fat foods, and they were incorrect. Awareness of this may lead some caregivers to be more open to initiation of the ketogenic diet as a therapeutic option. In fact, several of the children in this study were subsequently started on the diet after now-convinced parents saw their children eating the high fat foods, much to their surprise.

Our group is planning a prospective study to track whether detection of these unusual preferences by systematic assessment can predict not only compliance with the diet, but perhaps even diet efficacy. Future research could also focus on understanding why these preferences exist.

Edited by Steven C. Schachter, MD
Submitted: August 7, 2007

Source: http://www.epilepsy.com/epilepsy/keto_news_september07

Take a look at this file from the Charlie Foundation to compare several diets and their effect on epilepsy
http://www.charliefoundation.org/sit...comparison.pdf

 

[milkymum]

Thank you for that Dutchs mum I will take a look at both these links. It's my daughter who is on the dairy free at the moment my son with the epileptic episodes isn't on any special diet but we are workingon slowly eliminating the gluton in his diet due to him having really bad nappy rash and loss bowels. His stomach is swollen today today but not tender to the touch but then he doesn't really respond to pain unless it really hurts then he will have a little cry or be clingy. My daughter is on the dairy free diet fo rher cronic excema which is also affected badly by the cold weather at the moment but it isn't as bad as it has been in the past.

 

[Dutch mom]

Hi, were busy posting together Milkymum, I've just finished editing my post (make many mistakes because of my foreign English.) :roll:

p.s. The clasical keto diet has obstipation (!) as a common side effect (we do know all about it...) so if you consider going keto, MCT might be better for your boy, liguigen is used to reduce obstipation (very effectve...)

 

[Kayleesmom]

Hey Milkymum, I just wanted to say welcome to the group. I have heard many positive things about the keto diet. I hope you guys have the same success. Also, the leg twitching and other episodes could be partial seizures and I would definitely record anything you feel is unusual.
Hope things are going ok. Hugs and prayers,
Leslie G.

 

[milkymum]

We have an appointment for EJ to have a 20 minute EEG. They have decided to do 3 different EEG's and to start with they are goingot do a very quick 20 minute test. They want to have a few minutyes of him sleeping but he doesn't sleep dueing the day and they are going to do a few minutes with disco lights which is I'm very anxious about. I have never allowed him near flashing lights or anything like that so it is going to be a first experience for him. So far today he hasn't had 1 episode that I have seen. He loves watching in the night garden and his gets glued to the TV when this is on so it is hard to tell weither he is having an absence seizure or not dueing the 2 20 minutes episodes of in the night garden he gets to watch everyday. And today I have got his sister at home ill so I have been very busy with her as well. They are both doing drawings at th emoment which gives me a few minutes computer time as I can see what they doing from the computer. I like them having creative free-time they get to express thereselves in an artistic way and they love drawing and colouring.

Anyway his appointment is on the 23rd October at 12:30. I'm hopinghis dad can get soem time of work as I don't feel I will be able to cope with this one on my own. I'm aware it wont hurt it's just the timing it is going to get EJ prepared for the test that I'm nervous about.

 

[Kayleesmom]

Hope everything goes well on the 23rd. Kaylee has had to have an EEG asleep too. They told us to put her to bed as late as possible and only let her sleep about 4 hours. It was really hard, but she slept during the EEG and doctors got what they needed.
We'll be thinking about you.
Leslie G.

 

[milkymum]

Thank you Leslie G and your avator is so adorable. Is that Kaylee? She is so cute. EJ fell asleep the other day and I couldn't resist taking his picture. He always takes his clothes off when he is about to fall to sleep and then lays down wherever he is and falls a sleep scrutched up with is legs tucked as far under his belly and chest as he can get them.

 

[Kayleesmom]

Hey and thanks to you too. Yes, that is my Kaylee-bug last Christmas. The day after that picture was taken she went into the hospital with 13 seizures. Thankfully, that was last time she has had any. Your baby is so cute. It can literally make your heart ache when you look at them and know what they are going through, but try to focus on the good and the rest will work itself out. Talk to you soon,
Leslie G.

 

[milkymum]

EJ had his EEg today and the lady who did the procedrue was brilliant. She expalined things to use and truned the whoel thing into a game with EJ. She was so amazed at how well EJ did. He sat and watched bob the builder whoile she did the head measurments and stuck the things on them, she played tickly eyes. She used 2 cotton wool balls and tickled them over closed eye lids and then gave him the cotton wool sballs to play tickly eyes on me. He did react to the flaskin glights though. She said that with absence seizures they also look for lip smacking and muscle twitchers well both of these he had with the flashing lights. DH said it felt like he was tensing him muscles as if he was not likely the lights but he was laughing. Until the last 3 flashin glights sessions. He tried his hardest to hind away from the lights. The picture as the lady told EJ his had wa going ot draw with out using pens or things to draw with looked very interesting. One minute the zig-zags were ver small and then the next they were big and going up and down like crazy and then were small again. They were biggest dueing the flashing lights so I am hoping they did pick something up that will help with diagnosign and treating. I just hope that we can get the results before January. EJ sees his pedeatricion on Monday which is going otbe fun as well. He has a roll onhis left amkle that has got that bad it is know truning his foot and is coursing problems for him to walk or run. I am hoping she does a referal to get this sorted before it gets to bad. He has already gone through a pair of black shoes and he has only had them 2 months. They still some wear left in them but they wont hold out until he outs grow them and they are from clarks as well. I only bought him his shoes from clarks as I bought his brothers and sisters school shoes from there as they are only shoes that will up-hold the beatings my RB gives his footwear and they are also the only shoes that can with-stand my daughters turn she has in her left foot. Her turn of the foot is coursed by having a flat foot which they wont treat until she is older as they are hoping that over-time she will develop the arch in the foot as when they get her to do ballerina foot as they call it she does have very, very small arch

 

[fiona]

Hi. I'm new to this forum. But, I am from the UK and I'm going through something very similar, my little boy as just turned two-years old. He is scheduled for an EEG within the next week or two, so he has them for his pediatric appointment on the 9th Novemeber. I'm alittle bit scared of him having all these tests -- I just hope they don't upset him too much. Sounds like it went well for your little boy though...

You've asked lot of questions that are very helpful to me, so another huge Thank-you to Dutch mom.

I hope you get the results very soon. xxx