advice/support needed asap

[mimi's mum]

I don't really know anything about epilepsy but our lives were suddenly turned inside-out when our 20 month old daughter had a 3 hour fit last week, incredibly violent and all down one side. After 4 days in hospital all viral causes were ruled out and we were left with epilepsy as the obvious cause.
For most of her life she'd done this weird thing if disturbed from her sleep, go a bit stiff, chew her bottom lip and her eyes would flicker. Only for a few seconds, then go back to sleep. And she's never done it whilst awake. I now know its an abscence seizure.
I've just got a phone call from the hospital. They want her in tomorrow morning to start medication, staying in for other scans. This is all too quick. Surely, unless she has another big one or the scans show something scary a few 'spacy moments' doesn't need medicating. Once we're in there we won't have internet access to look stuff up, I'll just have the biased doctor's views.
I'm so worried for her right now. Any advice would be welcome

 

[Bernard]

Hi mimi's mum, welcome to the forum. :hello:

I know you must be very distrought and stressed out. I'm so sorry you have to watch your daughter go through this.

There is another girl, Abigail, who was having severe seizure problems too. She ended up requiring surgery and is doing better now (long thread):

http://www.coping-with-epilepsy.com...her-question-about-my-daughter-epilepsy-1077/

I wish the best for mimi with the testing.

 

[RobinN]

Hi Mimi's mum.
My daughter started having seizures last year, so I know just how you feel. Rebecca's aren't while she is asleep, but rather while she is awake. She has Tonic Clonic seizures.
In fact she had one today, so that makes three this week.

Remember when you go to the hospital, you do not have to do any thing that you feel uncomfortable able. Don't let anyone ramrod you into believing your rights are no longer valid just because they are doctors. Take all the time you need to research the info and the direction you feel is right for your daughter.

I hope you find the answers you need.

 

[brain]

:hello: Mimi's Mum

So sorry you're having to undergo all of
this and it must be a very difficult thing
to see your own child going through this
and you feeling so helpless and inside of
you wanting to put a STOP to all of this!
It's heartbreaking - but naturally you'll
become overly protective as any parent
would, but stick around for there are
many, many parents out there with a
child or children who have to endure these
things - KNOWLEDGE IS POWER! And as
Bernard posted the thread link - learning
from other parents can provide support,
assurance that you're not alone, and
plus - developing friendship with other
parents, and so much more.

Prayers and thoughts abides for you and
your little one!

 

[execwife2002]

Hi mimi's mom,
I am a mom of a 19 yr. old son who started having seizures at the age of 12 1/2. I understand how you feel. My son mostly has nocturnal seizures..grand mal. I recently found this forum and in the short time I have learned more about this condition than I've learned in the past 6 1/2 years. The support, the knowledge, the suggestions, opinions .... have given me even more strength and knowledge to keep searching for ways to help control his seizures.
Keep us in formed on how your visit to the hospital went. We are here for you and your family and mimi too.
Marian

 

[CQ:)]

Hi Mimis Mum

I am sorry to hear what you're going through with your daughter and hope you get some help.

My parents went through teh same thing with me when I was a baby.

I had epilepsy as a baby and took grandmal seizures from the time I was 9 months old until about 2 - 3 years old. The drs said I'd out grown my epilepsy but was kept on Anti Epilepsy medication until I was 7.

When I had the epilepsy when I was a baby and a toddler I used to take up to 10 seizures a day. At 1st my parents (especialy my Mum) worried but eventualy they were used to my seizures and my Mum knew what to look out for.

In May 2002 when I was almost 25 I was rediagnosed with epilepsy after I took 3 seizures (2 at home & 1 at hospital). No one knows why I went 22 years without having a seizure.
Since being rediagnosed with epilepsy I have only 1 other grandmal seizure in March 2004 .
I usualy have smaller seizures which I think are auara or partial seizures.

You will find you'll get some great help & learn a real lot from the forums.

 

[Zoe]

http://jn.nutrition.org/cgi/content/full/135/2/279

http://findarticles.com/p/articles/mi_qn4176/is_20060823/ai_n16688223/print

Hi Mimi's Mum,
There are many reasons for seizures, and "epilepsy" is not a cause of anything. The word can be misleading. Epilepsy means someone who has repeated seizures. There are a number of things to check out if her doctors fail to do so, that are easily overlooked in finding causes for seizures.
1. Is vitamin D deficiency which is more common than generally thought.
2. Is any kind of cardiac disorder, also easily missed by focusing on the seizure and not the cause. Below are a few links to more information on vitamin D deficiency and syncope. You may not want to medicate her until she has further evaluation to identify the problem.
There are also many many inborn errors of metabolism that can have seizures as a symptom. And there are specialists for children in this field, too.
Gluten [wheat] intolerance is another overlooked cause of seizures.
Below are links to more information.

Nutritional rickets among children in the United States: review of ...Clinical findings included seizures, failure to thrive, ..... Prevention of rickets and vitamin D deficiency: new guidelines for vitamin D intake. ...

http://www.ajcn.org/cgi/content/full/80/6/1697S?ck=nck

http://cmsadmin.mercola.com/2002/feb/23/vitamin_d_deficiency.htm


Reflex Anoxic Seizures
You may want to contact these folks for more support and information too.
http://www.stars.org.uk/
----------

Before jumping to conclusions about your daughter's seizures, read this medical article.

Objective. Paroxysmal events are frequent in infancy. A precise diagnosis is often difficult to assign despite adequate history and physical examination. Certain clinical signs may help to suggest the diagnosis, thereby avoiding unnecessary and costly investigations. The aim of this study was to determine the frequency of eye opening during infantile seizures and evaluate the potential usefulness of this simple observation in the differential diagnosis of acute events in infants.

Methods. We performed a retrospective video electroencephalogram review of the seizures recorded in infants at our Epilepsy Center, paying specific attention to eye opening.

Results. Ninety-one seizures in 69 infants were included. Eyes were open in 85 (93.4%) cases.

Conclusions. Infants whose eyes are closed throughout the paroxysmal event are most likely not having seizures.
----------------
http://pediatrics.aappublications.org/cgi/content/full/116/4/e485


I agree with Robin. Don't let the doctors intimidate you into doing anything you don't want or you fear may harm your daughter. If seizures are not life threatening, some people choose not to medicate. Get as much information as you can. Trust your feelings and instincts on how to proceed. Let us know how it goes.
Zoe

 

[Birdbomb]

Welcome mimi's mum

Your attitude is very important as to how your child will react to all this. If she see you scared and frightened, she will follow suite. If you act like it's business as usual, she will take it all in stride and not bee too stressed.

It is difficult to watch our children having to deal with difficult situatioins. They look to us for guidance and acceptance. These tests can put your mind at ease and help you plan a course of action to help your child.

Good luck.

BB