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nique313

2 year old -

Hi all, I'm new here and don't have diagnosis yet but am working on it. I'm just wondering if anyone has ever experienced anything similar to what is going on with my 2 year old daughter.  Mostly they have noticed it at day care but I have seen her do this a couple of times and even my cousin that has cared for her a couple of weeks ago while I was away saw it happen.  She will just stop what she is doing, or mostly it is when she wakes up from her nap.  She stands up and starts to tremble and shake as if "she is freezing".  She seems to be alert and if you ask her a question she just keeps saying "No, No".  When I saw it happen she seem to be more looking through me than at me.  When it was over she kind of whined a little and then walked off and started to play.  It lasted 2 or 3 minutes.  At day care they said basically the same thing.  The say its becoming more and more frequent an we are sceduled for an EEG on Wed.  I just wanted to know if anyone has had anything similar.  Thanks. Monique 

Comments

RE: 2 year old -

Firstly, the sure fire way to posativly epilepsy is via the EEG, but it will only tell you if she is having the seizure around the time of the test. No seizure around the time of the test and you'll get a normal healthy reading. When your daughter has one of these episodes, does she develope a change in skin tone, like she has seen a ghost. In nearly all seizures the blood supply is withdrawn away from the skin, making the person look a little pale. In someof cases (and only some), unconciousness is not part of the seizure, kind of like drifting into sleep when given gas in the dentist's chair, but you stop before then and hover about for a while before returning to normal. With these your not with it, but not without it. What you discribed suggests some contact with reality, tell the doctor this. With all absences i've seen, everyone stares through things, i do it i'm told.Although epilepsy treatment comes with a parcel of tests, scans, and more tests and scans, the biggest help the doctor can get is from you. He/she will need to know as much about the past history since your last visited so they can see if the medications having an effect on the epilepsy. Try to note physical changes as well as the timings, before, during and after the seizure. Does she know it's coming, if so she's getting an aura before the main event. Learn to take a pulse. All these things are forgotten by just about everyone involved with epilepsy, sufferers and carers alike, me included. Try to find if there is a commonality that might be a trigger, like food or TV, some seizures are set off rather than start up on their own. These are the type of things the doctor wants, and needs to know to fight the epilepsy. As your childs epilepsy is new, i strongly suggest you wear a watch, it will help you find the "normal" lenght of the seizure. Talk to the doctor and decide if you need to press the "panic button" should the seizure go beyond the normal time. Get the day care to time the seizures as well, the earlier you know if it's getting worse the better. One of the side effects of the seizures can be a bout of confusion after the seizure, identify if that's the case with your girl, it will identify if any safety features are needed in the house, like a gate at the top of the stairs. Bouts of confusion is common in some types of seizures, as your daughters is new, you might not know the answer yet. Epilepsy can affect everything it controls, that means everything in the body, including the muscles, and that is suggested by the shivering during the seizure, if so bowl and bladder releases can happen. One other thing, whatever medication your girl recieves, you must never alter, or change without the doctors ok. All anti epilepsy medications can only be tinkerd with in a medicaly controlled way, to do it otherwise reduces the threshold for a condition known as Status Elepticus, and that can be a killer, or worse.In a lot of forums, including this one, i have heard that some people advise not telling the child. Here's food for thought on the subject, if your child doesn't know she has epilepsy, how is she going to tell people that she has it? And if they don't know how can they react accordingly?In most cases, epilepsy is stopped, children can have a type known as febrile epilepsy, and kids normally grow out of it, also 85%+ of all people with epilepsy have their seizures stopped. Your daughter has one added bonus that gives her an even better chance of beating it, and that is you. 

RE: RE: 2 year old -

Thank you so much for your reply.  First, I have seen only a couple of these 'spells'.  To be honest because she seemed to be shivering and shaking I picked her up and assumed she was cold.  I now of course feel like an idiot.  They seem to happen at day care mostly right after her naps.  But people have more and more started to tell me, oh I saw her do that....and give me a for instance....I have a lot of what other people have told me to go on at this point.  She was born with severe tracheomalacia.  Which basically means that her treachea was flat instead of round and we went through a hard first year with her.  But just when I thought we were over the worst of it the poor baby has developed something new.  I feel bad because some of these stories go back 8 months.  How could I have not seen it?  I am so on top of what goes on with my kids.  This really bothers me.  Anyway, I would always be open with her, I'm not afraid of the diagnosis itself just anything underlying.  I just want to help her.  I'm afraid for her of course.  She is only two so it is hard to say if she has bowel or incontinence problems she is not potty trained.  I think she is 'spacey" during the episodes but I'm just in my fact finding period now.  I'm on anticonvulsants for migraines.  I would not mess with her meds.  I would hope that maybe there is some chance she does not need meds and maybe that is just me being in denial a bit.  But I will do what it takes to make her healthy and well.  She is just such a normal happy 2 year old and I hate to see anything change her. Thanks for your information the support from everyone surely helps. Monique   

RE: RE: RE: 2 year old -

Come on in, i'll put the kettle on.

RE: 2 year old -

Monique,My 4 year old son doesn't shake, but about 2 months ago would just kind of stare off and I couldn't get his attention while he would do it.  At first it was 1-2 times a day (lasting only about 5 sec) and with in 3 weeks it progressed to 6-7 times a day.  Sometimes he would get extreemly tired afterwards. We saw a Nurologist and did an MRI and EEg and he was diagnosed with Epilepsy (I think its called Generalized Epilepsy, but not 100% sure of they type)  He was put on Lamicital starting at 5mg 2x daily and we are working up to 25mg 2x daily.  We are now at 15mg 2x daily and I haven't noticed a seizure in 3 days now (thank the Lord!!).  The weeks leading up to the tests and waiting for the results were the toughest days of my life, but now that we know the diagnosis and we are making steps to take care of it, its much easier.  The other good thing is the Nurologist says that with this type of Epilepsy he has a 90% chance of outgrowing.  If he stays seizure free on Medication for 2 years, we can then try to slowly take him off medication and pray that the seizures don't come back.  Even though its not a guarantee that it will happen, it makes me feel better and when researching Epilepsy on the internet it seems like the milder types of Epilepsy have a good chance of not lasting into adulthood.  Does anyone out there have a story of a child outgrowing Epilepsy?  I would love to hear it.  So hang in there Monique,  I think once you find out the problem it gets a little easier because you know what your dealing with and can take steps to getting your little girl better.  I'll keep your daughter and your family in my prayers.Wendy 

RE: RE: 2 year old -

Thank you for the reply, I do have another question though, what happens if they run this eeg and it shows nothing, am I left wondering what is wrong with my child?  Everyone keeps asking me does eplilesy run in your family. No, it doesn't run in my husbands either.  But I know plenty of people that have it and it doesn't run in their family. People seem greatly uneducated about it.  I just want her to have the best shot at a normal life.   As I'm sure we all do for our children.  As I stated previously I take anticonvulsants for Migraines and they have been a God send for me.  I hope your little one stays on the right track!  Thanks for you kind words!   

RE: RE: RE: 2 year old -

I'm still new at all this since my child was diagnosed about 1 month ago, and I've been asking around and trying to research this as well.  From what I've heard and read, a lot of EEGs do not show much, if they have a seizure during the EEG it will tell more, so for my son, it was a sleep deprived EEG (which is not much fun) and lack of sleep triggers his seizures so he had at least one during his EEG which helps with the diagnosis.  When my son saw the Nurologist the first time, he actually had a seizure in the Doctor's office as well, so the Nurologist wanted to put him on Lamicital before even seeing the results of the EEG and MRI, which alarmed me and I questioned him that maybe we should wait and see the results, but he had told me he didn't expect to see anything in the tests and he said he could tell just by watching him have these seizures that he has Epilepsy.  From what I understand, the MRI is to check the brain and rule out other problems and the EEG shows the brain waves.  Again, this is just what I have heard and read and I don't want to give you any misinformation, but I can tell you this, after his results came back, I feel so much better just knowing what I'm dealing with.  I have a cousin who has Epilepsy, my uncle says it was caused from lack of oxygen during birth, so there was some Nurelogical damage as well and he is 33 now, so I don't know it this is actually a fair diagnosis for him.  The reason I'm telling you this is because the doctors kept asking me if anyone in my family has Epilepsy and I would tell them about my cousin and they act like he's not close enough to consider this to be inherited and his was from lack of oxygen at birth.  Anyway,  I hope this help you a little.  Good luck and God Bless you.Wendy

RE: RE: RE: RE: 2 year old -

Wendy,Hmmmm Very interesting!  So how is your little boy doing now.  How do the meds effect his disposition?  I watched Kayleigh all weekend and saw nothing of course.  I dropped her off at daycare this morning just knowing that the minute I walk out the door, they will call saying something happened.  You know there is so much connection to seizures and migraines, I wonder if I could have passed a gene to her, if this turns out to be a seizure she is having.  I know its all conjecture but anyway.....her EEG will be sleep depreprived also.  We are supposed to keep her up late Tuesday and then wake her up early wed and the test isn't until 1:00 no naps.  HA!  She will be a bear by then but if it helps that will be fine by me I can cope for one day.  They say at day care it happens a lot AFTER her naps.....why would that be if sleep deprivations causes seizures....maybe not enough sleep during the nap....I don't know.  Lack of Oxygen....with her being born with sever tracheomalacia....maybe she had some sort of lack of oxygen at birth.  She was on an apnea monitor for months until I jerked the thing out the wall.  At least that would give me a clue as to how this may have came into being, if it is what I think it is...Isn't this fun?  Sigh....I hope your baby is better.  Thank you so much for being someone to talk to....Monique

RE: 2 year old -

Hi, Monique-- We hope you will find the following links useful. Included is information about diagnostic testing and the different types of seizures and symptoms. We wish you and your family all the best.http://www.epilepsy.com/info/family_kids.htmlhttp://www.epilepsy.com/info/family_faq.htmlhttp://www.epilepsy.com/info/family_common.htmlwww.naec-epilepsy.orgwww.epilepsyfoundation.org/www.paceusa.org/Epilepsy.com