My 2 year old has epileptic episodes

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Milkymum your children need to see the orthopeadic foot specialist at the hospital and get Piedro boots, this should have been done when they were very young. Try talking to your GP or health visitor. My youngest son has these boots and they work wonders for his turned in feet. At the moment there is no ortho foot specialist in my area so he hasn't had them for about 8 months, and the problem is getting worse again. In the meantime, you will pay more for them, but try to find an independent shoe shop that sells ricosta shoes, they are more supportive than clarks shoes, and they REALLY are virtually indestructible, even with children with foot problems, they test the durability of them by running them over with tanks!! I have epilepsy and so does my 11 yr old daughter. We live in the South-East of England. Oh and on gluten-free, my whole family is GF as my middle child, my 7 yr old son, was diagnosed coeliac in April, and it's had the pleasent side effect of lessening mine and my daughters amount of seizures. If you want any advice on GF foods in the UK, feel free to PM me. Waitrose is best, closely followed by Sainsbury's, don't even bother with Asda! ((((HUGS)))) to your gorgeous son.
 
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Hi Fiona please feel free to PM me any questions about the EEG I am more than willing to share the whole expereicnce in great detail withyou and answer any questions you have about the tests.

Loudmouth tahnk you for that information. My LC is on a dairy free diet and most of her food I buy for her is also gluton and wheat free. I hav ehad E on a gluton free diet for the past week and the difference already is amazing. To the point were when I gave him food with gluton in he started having very loos bowels, and the seizures started up again. I am goingot see my health-visitor tomorrow and talk to her about the way the gluton free diet has been and that I want to put him on a gluton free diet know instead of waiting. I am more sick and tired of the loss bowles than anything else at the moment. Will also speak to her about the foot specialist. I have just bought him a pair of boots from a different shoe shop. Can't remember the name know but there boots are so much sturder than clarks. He loves them too which is a bonus they are padded on the inside and do up with a zip and they do seem to be helping with the turn but not the roll.

We had a terrible scary Saturday. We wen tot a lights party instead of halloween party and they made a maze which they darkened with black material to make the glow-in-the stars shine better and they had a disco ball and fairy lights and some christmas lights which flashed. My RB went throught he maze with EJ thankfully as EJ reacted tot he lights. I didn't know they were there until I heard RB shout "Mummy I need help" When I got to him EJ had froze, was lip-smacking, arms and legs twitching and he was just in a world of his own. It lasted about 2 minutes so after aminute I phoned the emergency services to get help. They took us to the hospital which was a waste of time as the doctor we saw was lovely and very understadning but sent us back home and told me to keep an eye on him for 24 hours and if he had another episode to take him back. He did this because EJ was back to his normal self and was full of life and energy but he understood why the paramedics decided to take him in. Also he has his MRI scan on the 10th November which is going to be fun. I need to arrange with the older children's school that I drop RB and LC off at 8:45 instead of 9 as I have to be on the ward were EJ is going for 9:30 for them to keep an eye onhim, do all the checks they need to do and for me to see the doctor withhim before they sedate him at 11:30. I just hope I can be back at the children's school or that one of my friends doesn't mind collecting my older 2 from school at 3:30.
 
is EJ on meds yet? from what you have said about his eeg they sound like normal eegs, as in not monitored lasting hour or so at the most. i am not a doctor and have no training other than, "been there done that". it amazes me the number of people, medical professionals included that think an eeg can predict a seizure or show that you have had one at some time in the past. an eeg records in real time only, unless you experience a seizure during the eeg it is going to be in, "the range of normal", i hate that term. ask about a monitored eeg, it will be a terrible thing for a child to go through. EJ will be wired up for an eeg, put in a bed with camera pointed at him, he will stay there until he has seizures. he will be taken off any meds and even sleep deprived to cause him to have seizures. you will most likely have to stay with him through the whole thing, that will be a big help to him. send me a private message and i can tell you more.
 
No they haven't piut him meds as I want to try diet control first. I am seeing his health-visitor tomorrow to talk about his diet as I am concerned about the fact that when he has gluton he gets terrible loss bowels which courses him to also get terrible nappy rash. But last week after he had a 24 hour starvation period due to not keeping anything down as it made him sick I gave him a gluton free diet and he did brilliant on it and on Friday he had gluton and with-in 24 hours he was back to having loss bowels and nappy rash again. The eeg he had was only a 20 minute one but they recorded it on to a DVD for the nerologist to watch back with him sat on his dad's lap with me sat next to him. His dad had to hold his hands to make sure he didn't pull the wires. We were asked if it was OK to record him so that they had any forms of episodes on DVD as this helps with not only to see what the EGG records but also to watch back what he was doing dueing the EEG. Is this the type of thing you have meantioned?
 
eeg

it always makes me sad when i hear about these young kids with seizures. it must scare the hell out of them. i started having absence seizures at about 8 yo, they were a bit unnerving but i just though it was thing that every body had. had a complex partial one night when i was about 10 scared my mom more than it did me, that was when i was diagnosed. i've been on drug therapy so long i don't know about the diet thing, i hope it works out for you; just don't close doors. you know the kind of people that refuse to change. the drugs can be bad and the younger the patient the worse the complications. keep EJ off the meds as long as you can.
 
We do have to doors open I just like to try alternative things first to see if they work because I have seen the way that the drugs can go with the complications. If he need sdrugs later in life then so be it. The diet we have choosen to go down the route of is gluton free which is easier for us and it also helps him with other issues as he appears to be gluton intolerant. Got to do another week with gluton in his diet just to keep the medical people happy.
 
lol I know how they can be when you say that gluten may be causing problems....I have kept my DD off meds as long as possible, but even the GF isn't helping enough now as its starting to affect her in school (horrid flourescent tube lighting in UK schools) and I think that where her hormones have 'kicked in' that's not helping either. Good luck with the docs, milkymum. It does sound very much like your DS is photosensitive.
 
Well health visit was usless once again this week and refused to do anything fo rhim until he was 5 like the ped said. Well I made an apoi9ntment to see my doctor Tuesday night and he hay presto I have the paper work to get him tested for celiacs disease. Because his weight is only yoyoing between the betwwen the 2nd and 9th centile on the chart he has said that we can hold on to the apers and see what blood tests they want to do with the epilepsy and get all the tests done in one go instead of having to distress him for further tests in the new year but we do have a cut off point were no matter what the tests need doing ASAP. If EJ hits or goes below the 2nd centile then we have to get his celiacs tests done there and then which will mean a trip to the hospitals blood bank for them to take his blood. But in the mean time we are to start reducing the gluton and then in the new yaer for a week before the tests are going otbe done we are to put him back on a gluton diet because if we don't we will get a false result which we could do with out. We are on day 2 of the reduction of gluton and no change at all
 
I think the initial results to the gluten-free diet sound promising. It can take awhile for the body to adjust completely (even a tiny body), so have patience and see how your boy does. It's too bad that once you go gluten-free you have to go back on for a week. As you know it can be hard on the system. Good luck and keep us posted!
 
It actually

takes about 8 or 9 months for the body to completely purge itself of gluten....
 
I need to decide quickly weither I want to wait to get EJ's celiacs tests done in the new year after seeing the neurologist again or get them done know. I have just found out that there is a high possibility I am pregnant again. Test had a very faint positive and I have been asked to wait another week and go back for another test but I have been booked in for my early scan which will be done on the 30th Nov. EJ has been having a lot more absence episodes resently which is concerning me loads. I have phoned the hospital today and spoke to the epilepsy nurse that works with professor EJ is under and she is going ot speak to him about getting EJ in earleir than the new year. He has his MRI scan on the 23rd and my hubbie is going to deal with that on his own.
 
EJ is at the hospital today with his dad. He has to have his MRI scan at 3 and I couldn't go because his siter is off school today as she hardly slept last night because she wa shaving reflux problems. So far the weanin gof gluton is going well. Last week we changed his crisps to snack-a-jacks which he seems to really enjoy. Especially the prawn cocktail floavour ones. They say on the package suitable for celiacs. We are already seeing a difference in his episodes too which is another bonus. We have decided this week we are going to look and move the gluton out of his other snacks. He loves to have either a biscuit or a piece of cake with his 11am milk so that is the next thing we are going to change. I am going ot buy some gluton free flour tomorrow when I do this weeks food shopping but I don't know weither to buy rice flour or corn flour. Which one would you recommended and what do I add into the flour to make the cakes rise? Is baking-powder OK? I see a dieticion on Wednesday for my daughter and I am going to ask them if they could recommended a gltuon free butter as I can't find one anywhere. I need it to be gluton and dairy free as I only buy the one butter for the whole family
 
Hello again and an Update on EJ

Well today we were back at the hospital seeing the professor. His EEg came back normal but the professor says that could be because dueing the 20 minutes he was on the EEG he didn't have an episode. But the MRI scan was a bit more scarey. They found 3 abnormalities on that. Those abnormalitizes are:
1) his cerebal his elongated not as much as his sister LC's is an was at his age but it is more swollen and appears to be putting a slight bit of pressure on his spinal cord but not enough for them to operate.
2) He has more fluid on his left side of the brain than he does the right but again there isn't enough for them to operate as they are hoping it will absorb back into his body over time and naturely.
3) The section the professor said is the section that is the indicator to epilepsy on the left side of the brain is also not as far developed as the right side. The professor described it as a snail curlin gup inside it's shell but the snail hasn't curled up properly. He also said that this would of happened dueing pregnancy and not after.

So the professor decided that he would see EJ every 6 months until further notice and as long as nothing chnages in EJ's development for the worst and the episodes he is having don't get worse then he will repeat the MRI scan and do a longer EEG in 2 years when EJ is older and able to explain what is happening to him dueing the episodes and how his body is feeling which he can't do know. We have been given a list of signs to look out for in the next 6 months for his condition worsening and if he does get worse between know and July we are to ring his seniour epilepsy nurse to get an emergency appointment and also in th emean time we are to continue as normal but to make a more detailed dairy. We know have to record what he eats, drinks, activities he does, his sleeping habits, time it takes ot get him to sleep, what he does dueing an episode, how long he has the episodes, how is is after the episodes, any sign of pains or general discomfort. When we have to buy new footwear and why we bought new-foot wear. The prefessor has also put a referal in to physio fo rhis ankle and leg as they try to avoid splints in young children unless it is needed as a last resort.

I ma glad the professor is dealing with EJ's issues but I feel like we are no closer to a diagnoses othe rthan the fact that he feels he has mild epilepsy and we just need to work out what is the trigger so we can avoid it as he doesn't want to give him medication unless it is again a last resort. We also had 4 blood tests done today which I will get the results back from on Friday which hopefully will also help in the disagonoses process. I can only remember 3 of the tests which were Anemia, clotting and celiacs. Apparently iceliacs and epilepsy are quite closely linked so if he does have celiacs then it is more than likely that he does have epilepsy. I can understand why the professor has done what he has done today but I just wish he could of been more certain of the degree of the epilepsy. Although he did say he is certain it is mild as EJ doesn't appear to have the markers of the brai nbeing damaged by the episodes which is brilliant news
 
It's great news that there's no brain damage. I know it's hard not to get specific answers, but with epilepsy there are always a lot of unknowns. Seizures can change over time, and even if you know the specific cause, there's no way to know for sure which treatment will work.

It's also great that your doc is avoiding meds for the time being -- I hope you never have to go down that route, as the medications are powerful and tend to have unpleasant side effects that can be especially hard on kids. If there does turn out to be a link with celiac disease or a similar allergy, then a special gluten-free diet would probably be the approach to follow. There's a lot of information about the diet here if you need it.

Good luck!
 
Apparently celiacs and epilepsy are quite closely linked so if he does have celiacs then it is more than likely that he does have epilepsy.
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Celiac disease can be treated by staying away from gluten. The GI tract can be healed and many of the symptoms will go away. There is a possibility that dairy, soy and corn will also be a problem. But it is great news that you are already seeing positive results.

Please remember that Epilepsy is only a label. It only means that there have been two or more seizures. It is just the symptom of the CAUSE which might be celiacs in your case. You don't even need to do the testing unless you need the medical "proof" that this is true. Please understand that the tests are not 100% reliable.
 
Thank you both for the lovely words of wisdom and encouragement it really helps. The reason why twe have had the celiacs test done is because EJ has had terrible bowel problems mainly loss bowel movements for all his life. The llongest we have gone with normal bowel motions was a week when I had the whole family on the same meals I was cooking for my daughter. I noticed that everythign I was buying for my daughter that is dairy free is also gluton free but EJ was still having dairy products as I was giving him his normal cheese, yoghurts and milk. But when we went to my mothers house for dinner one saturday and then went to a halloween party straight after with-in 24 hours he was back to havIng loss bowels. My family GP is very funny and he wants medical proof that there is something not right. We started weanin ghim off gluton and he was down to only having gluton in his bread and cereal and the change was already starting to show but christmas week we started him back on a full gluton diet IYKWIM and we are back to horrid loss bowels, swollen abdo and terrible rash. We have know started him back on the reduced gluton diet so we can get him back to how he was 2 weeks ago and after checking my diary I forgot to print yesterday morning ot take with us the episodes where less when he was only having small amounts of gltuon so to my conclusion the gluton reducation did help I just need to the doctors to pay attention to the proof I have and not the results they get from the tests. But on the 28th of this month we are seeing my daughters ped who has also taken on EJ as well and he is great he doesn't look at the medical evidence he is more interested in the vision and physical evidence so hopefully he will do a referal to the dietition for EJ and go right over the family doctor.
 
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