waiting lists

[carlyanne]

hi everyone my names carly and my 3 year old son has epilepsy he was diagnosed just before he was two with myoclonic seizures so epilim was introduced, everything was fine for a while until the epilim no longer was controlling it, so keppra was introduced which is not really liscened to be given to a child under four years of age. Then a month ago he had a grand mal seizure which was very frightening, so now we constantly carry mildazolam to help him recover quicker. Had an appointment with consultant today been told that we have to wait at least six months for an mri scan.......even though a friend of mine pestered the local health authority for an mri scan on her knee and had an appointment within 12 weeks.....wheres the sense in that. I really dont know whats ahead of us, jay no longer sleeps and averages at most six hours sleep in 24 hours despite all our efforts which in turn triggers his seizures. if anyone else could get back to me with their experiences as i feel its just me and jay at the mo
take care
carly x

[Crazy Monkey]

Hi Carly

Waiting lists in the UK are absolutely appalling, where abouts are you located?

I have been trying to get to see my neurologist since August last year, the next available appointment is April (I am away) so after that it is June. In the past I have had to wait in a horrendously long line for an eeg. My local hospital and doctors surgery are like Fort Knox to access.

[RobinN]

Hi Carlyanne - Welcome
There is nothing worse than feeling alone on the ride.

There are things you can do while you are waiting for the tests. It is really easy to make nutritional changes, and no harm to do so. Keeps you busy in the mean time learning new recipes. Remove any neurotoxins he might be eating or drinking.
Increase Omega 3 oils, make sure he his body is functioning the way it is meant to daily if not more. Magnesium is helpful to relax the body, and if you don't want to give it orally, you can give him epsom salt baths before bed.

It is late and that is all I can think of at the moment. I know there are more you can try on your own safely. The tests might tell you nothing, so don't waste 6 months waiting. Bring your little guy to the best health possible, from the inside out.

Good luck, we are here to help you stay strong.

[Bernard]

Hi Carly, welcome to the forum.

Here are a few suggestions: Proactive Prescription for Epilepsy

[carlyanne]

hi all,
thank you all for getting back to me.....sometimes i feel like im constantly re telling the same story over and over, the waiting lists are crazy im in south wales and although the epilepsy nurse is doing as much as possible theres nothing she can do to rush appointments and i know there are phaps other people who need to be seen first but for a knee injury is just baffling........i was thinking about paying private but dont know where quite to start has anyone else opted for a private mri scan? Im also curious about the diet side of things to get jay in really good health any other advise would be so grateful. Jays been fine today but what three year old has dark black circles under their eyes due to lack of sleep its so frustrating and of course it makes any parent feel soooooo guilty.
again i thank you for all your advice and support
take care
carly x

[dfwtexas]

This is scary, I am hoping the US never goes to this type of system. Sorry, you are having to wait to get medical treatment. Keep us updated

[RobinN]

Some typical symptoms indicating your child may have a phenol problem are [not all of these need be present]: dark circles under the eyes, red face/ears, diarrhea, hyperactivity, aggression, headache, head banging or other self-injury, inappropriate laughter, difficulty falling asleep at night, and night waking for several hours. The typical adult symptom of phenol intolerance is chronic fatigue syndrome, which is the opposite symptom that most children have, altho some children do present as always tired/lethargic, instead of hyper with sleep and other issues.

Phenols are chemicals found in basically all foods. The "phenol" category contains quite a few subgroups, both food and non-food. For example, salicylate is a subgroup of phenol. There are other chemicals found in foods that can cause similar symptoms as phenols, including amines, even tho they are not technically "phenol".

For some children, their bodies have difficulty processing the phenols into useful or at least non-harmful substances. This condition is called PST deficiency. So you need to reduce your child’s phenol intake, or help his body process them. Otherwise they build up to levels which can affect his behavior and physical condition.

Phenols -- "A group of natural and synthetic compounds that are ingested or produced to varying degrees by the body or by microbes in the intestine contain a benzene ring with one or more hydroxyl (OH) groups attached to it. When this attachment occurs, they become phenolic compounds. These compounds possess unique chemical properties. They are very soluble both in organic solvents (like alcohol, ether, and the fatty components of the body) and in water (aqueous solution), where they are strongly acidic. They exert toxic effects in the brain, where normally certain enzymes prevent their accumulation." Salicylates -- "Salicylate is a natural chemical made by many plants. It is chemically related to aspirin, which is a derivative of salicylic acid. It is believed the plant uses it as protection from insects. Although natural salicylates are found in wholesome foods, some individuals have difficulty tolerating even small amounts of them. The reaction to a natural salicylate can be as severe as that to synthetic additives if a person is highly sensitive. Some people are troubled by only one or two, while others are sensitive to all of them."

Here is a short list of high phenol foods, which you would want to eliminate or at least reduce to prevent overload, is food dyes, tomatoes, apples, peanuts, bananas, oranges, cocoa, red grapes, colored fruits, and milk.

www.danasview.net

Just a suggestion to look into.

[skillefer]

hi Carly! Welcome to CWE. As you can see, a great group of people. Has Jay had mood shifts since starting the Keppra? Some people on Keppra at this site have reported easy irritability while on Keppra. For some of them, a vitamin B-6 supplement helped to even them out.

As for Robinn's suggestions, I totally agree.
Try to wean him off Sugar loaded foods, as well as starchy foods. I know...hard to do with a kid. They seem to all love sugar. I blame the pureed bananas that kids get for baby food. Anyway, try to wean him off white sugar or things made with white sugar. Try to switch white bread for 100% whole grain bread. Same with pastas. Switch out white potatoes if at all possible with yams or sweet potatoes. But do NOT let him eat anything with artificial sweeteners. Artificial sweeteners can trigger seizures. Make sure that he isn't getting any caffeine. (no tea or chocolate if at all possible) And try the best you can to make sure that he gets rest. That includes naps during the day. It would be preferable for him to get 7-9 hours of solid sleep at night, but if that's not possible, let him catch naps during the day.

check out the link that Bernard provided on a proactive approach to epilepsy. And, when making dietary changes, don't be surprised if Jay kicks up a bit of a fuss. After all, kids love sweets. If he needs to have sugar on something, try using brown sugar instead. It digests slower. Which is what you want.

For the doc, start keeping a journal of what Jay eats (how much and when), as well as how much sleep he gets each night and day, and if he has a seizure how long it lasted and what was he doing right before it. You may find that there is a pattern. Such as breathing really heavy (hyperventilating ) before the seizure or being around flickery lights or even ingesting certain things.

There are lots of parents here who have gone through the same thing...so remember you're not alone. Feel free to chime in, ask questions, and when needed to vent in the padded room. Epilepsy can be really frustrating. Especially when it's your child. I don't live in the UK, so I can't say about getting a private MRI....but we have several members here who are, and who have. Good luck!

[RobinN]

Many parents report that giving epsom salt baths is beneficial to help their child’s body process the phenols. Some give these baths every night, others say only when their child is having difficulty processing the phenols. The recommended "dose" is two cups of epsom salts in a bath of very warm water [not too hot], then let your child soak for at least 20 minutes. Just don’t let your child drink the water, it can cause diarrhea. Some parents find that foot soaks are sufficient. Some use creams, one you can purchase from Kirkman Labs, or you can make it yourself, here are two recipes.

In that link I provided it does say that B6 might be an issue. Read up

I am certainly not saying that this is your childs problem. However, when trying to figure out what is going on with my daughter if it is not a medical emergency, I don't have any problem taking the situation into my own hands and making changes to her environment to see if there is an improvement. If there isn't after a good amount of time, then I have my answer. One catch... you might have to clear up another issue, before the trial you have implemented will work. So if it doesn't work one time, doesn't mean that it won't another.

You might look at some of the sites, for autism. Not to say your child has it at all.
There is great information for dietary needs, supplementing for brain health, etc that works for many neurological conditions.

I am curious if he was vaccinated and had any reaction to them?

[carlyanne]

hi everyone
Ive had a very busy week so i apoligise for not getting back sooner. Everything been fine all week, then thursday night..........thirty minutes after taking his anti-epileptic drugs jay has a grand mal seizure, again very worrying, he was twitching to his right side, and i had to administer midazolam after five mins. But he is now right as rain into everything and keeping me busy which im more than happy to do lol. i honestly think that this time was a result of sleep deprivation, and coincidently had an appointment with consultant today so i was ready with lots of questions and my concerns, he has prescribed jay metatolin to help him sleep, i really really didnt want to give him any other medication however he has fallen asleep tonight without the usual behaviour but i feel soooooo guilty about this, i have taken your advice and am slowly changing jay s diet, he doesnt eat alot of sweets but always enjoyd cereals with sugar for supper, so brown sugar has been replaced. ive just been reading some of the syndromes of epilepsy and from what ive found i can relate jays epilepsy with doose syndrome does anyone know anything about this? I have also had my concerns about how jay has got epilepsy ( i think most parents would like to get a reason as to why ) but i think it was either from the very difficult labour or from jays mmr vaccination..........which the more i think of it i beleive is a result of. funny how jay has mmr at 14 months and his first a and e admission as a result of myoclonic jerks was at sixteen months. I dunno maybe im looking for a reason when usually its just one of those things...but if anyone else would like to give their comments please feel free. i will write soon
take care
carly

[carlyanne]

by the way jays mri scan has been rushed through, the consultant has referred him to two hospitals and one hospital contacted me today with an appointment on 24th feb so not all bad lol however doc wants jay to other hospital preferrably because he needs to have lumber puncher and blood tests etc, does anyone now why he needs these?
take care
carly

[Meetz1064]

There is another person on this board whose child does have this. Check out this thread:

Hi Everyone!

Doose Syndrome is also referred to as MAE....or Myoclonic Astatic Epilepsy...

[skillefer]

Hi carly! Glad to hear that your doc is being so thorough! Sometime doctor's just want to prescribe and move onto the next patient.

I hate to say it, but don't be surprised if you don't find out the why's. Many of us here have no clue exactly why we have seizures. It could be genetics, prolonged high fever when young, head injury, a symptom of another underlying health issue, etc. Many of us here with seizures have perfectly normal EEG's and MRI's. All we can do is try to figure out the most reasonable possiblity for why. For example, my mother's uncle had a seizure when he was in his 40's. Then, I had a head injury when I was about 3 yrs old. (This is when I learned the hard way why parents say "don't jump on the bed". I didn't listen, missed the mattress, and smacked my head on a concrete floor. I had a head injury and broken collar bone. My parent's didn't realize about the head injury...and yes, they had taken me to see a doctor.....until I woke up paralyzed on the right hand side of my body. I ended up on a military flight to a military hospital in Hawaii, where I spent over 3 months.The doctor's said I'd never walk, and now I do. I never won a track and field day in school, but I could participate. ) For others here, it's a food allergy that they never realized they had until they started doing some research and then tried cutting out specific allergens. (Food allergies do not always cause hives or anaphalaxys.) And many of us just never know for certain if it's any one thing that is the reason why. For me, it could be genetics or the head injury...who knows. But keep trying to find out. If you can figure it out, it will help you do the best thing for Jay. I wish you luck. I'll be keeping you and Jay in my prayers. And know that you are not alone.