My 9yo Daughter

[mro42]

Hi,
My 9yo daughter was just diagnosed with complex partial seizure. It all started about 18 months ago. Emilie would complain about her lips and tong “not working”. She was drooling and could not talk but was fully awake. This would last 10-20 seconds. I would just massage her jaw muscle and it would stop. So we took it as a jaw muscle cramp or something like that. She did that maybe 10 times over a year.

In August (this year) we were driving back home around 10pm on a Friday night when I saw my daughter’s hand waving between me and my wife. I open the light and look in my mirror to see that she was having one of those episodes with her mouth. But this time the right side of her mouth was “twitching”. It lasted about 30 seconds. She did the same thing the next day. About to fall asleep it happen again and she banged on the wall of her bedroom to call us. At this point we knew there was more and we went to the doctor. She first had an MRI which turned out clean.

One Friday night after a stressful week for her (friends problem) she did her first and only full seizure. She has been sleeping in our room since the back to back episode in August. We were all about to fall asleep and woke up from her making noise. This time she was passed out. Her right arm and leg were mildly convulsing. Once we were passed 1 minute into it we decided to call 911. It finally lasted 3 to 5 minutes.

We saw the Neurologist and he put her on Carbamazepine right away (100mg). And the day of the EEG he showed us he saw ‘uncontrolled’ activity and increased it to 200mg.

So far the only side effect is that she feels sleepy mid morning (She takes half her dose morning and half at night). Her school grade were good so we thing she did have too much “absence” during the day.

Since 95% of her episodes were as she was falling asleep we are having a hard time returning her to her bedroom. Even more one of us stays in the room (reading ) until she is sound asleep (mostly until it’s time for use to go to bed. Would a monitor be enough? What if we don’t hear her? It’s thought because in the past she could be 3 to 5 months episode free.

Also I feel the doctor is quick on the medicine. We are supposed to see him in a month. I hope he won’t want to increase the dose again. Does anyone have a similar situation? What should we expect? Even thought things were getting worse, will the medicine stabilize it?
My daughter is taking it very good. She’s always been positive and enjoying life. That has not changed.

Thank you for reading me. I would appreciate if you could answer some of my questions.

Facing the unknown is always scary. But reading other people story I can’t see we are not so bad.

Thank you, Martin

 

[Bernard]

Hi Martin, welcome to the forum. :hello:

If you feel the neuro is trying to pump too much meds too quickly, ask him for a justification. If he can't satisfy you that it is really necessary, tell him you want to take a slower approach.

It takes a while for epilepsy meds to titrate to the therapeutic level in the body. They don't work the same as aspirins. Everyone responds to epilepsy medications differently. They work for some and not for others. They have intolerable side effects for some and none for others. Bottom line is there isn't any way to tell if the med will offer seizure control or not until you (she) tries it.

Here's a good thread to start your journey into the world of E : epilepsy 101 - Part FAQ, Part tips and advice

 

[brain]

:hello: Martin

Sorry to hear your daughter is suffering
from these horrible seizures! But Bernard's
right in a lot of aspects and I recommend
strongly to visit that link he posted there.
Good reading there!

Welcome to the CWE forum!!

 

[RobinN]

Martin - My daughter has seizures, and I know how hard it is to watch your precious child go through this. I also put her in my bed to make sure she was okay. My daughter is days away from being 16 so she wants her privacy. A monitor might work for you but you are right you might not hear it. My daughter falls to the floor at school, occasionally hitting her head. There will certainly be times when we are unavailable and we worry.

Even though she is young, her body could be going through hormonal changes. You might want to pursue this avenue.

We also are trying warm epsom salt baths at night. Helps calm the muscles, and gives a slower progression to bed. You MUST be extra cautious with baths though. They must be monitored for anyone with seizures. I know someone else is trying soft music and candles. Perhaps the crazy schedules we keep make it more difficult for the brain to settle into a different state. (just wondering)

BTW Welcome to CWE

 

[mro42]

Thank you all for your replies.

RobinN could you tell me more what you mean about persuing the effect of hormones change. She is already showing sign of changes (Breast. My wife was early too). Is there other things we should look at because of that? Also is your daughter still sleep in your room?

Emilie's bed is beside ours in our bed room. This morning she woke up 1 hour earlier than normal. After 15 minutes beeing fully awake she joined us in our bed. Everything was ok until she had a small seizure. She was awake but could not talk. We could see she came very close from passing out.

Disapointing... we will probably have to increase medication.

Martin

 

[Elisa]

It does sound like some adjustment of medication is going to have to be done. Maybe she just needs a diffrent one. There are so many out there now, when I was your daughters age I had a choice of 4, and they all had nasty side effects. I do think there may be some hormonal thing going on. My seizures started at 12 and when hormones hit and got out of control when I was pregnant.
I have found that so far Lamictal controls the hormonal seizures, but everybody is diffrent.

 

[RobinN]

There is something called Catamenial Seizures. They tend to happen on the menstrual cycle. You really need to keep a calendar of events to know if this is going on. But understand that the cycle is a month long and that there are events that go on within the body that one cannot see, but are causing the body to prepare for certain events. When the female body is regular you can typically count the number of days, but of course as a young childs body is adjusting I would tend to believe that the cycle would be abnormal. So a careful calendar is quite helpful. I color code my daughters.

If that is the case, there are studies going on to prove that natural bioidentical hormones can help this type of seizure. With my daughter, her body was not making any progesterone and it had excessive estrogen. She had areas on her thighs were they were almost purple with spider veins at the age of 14. It all happened about the same time as her first seizures. This I soon found out (by doing my research) was caused by an excess of estrogen. Estrogen excites the brain, and progesterone calms the brain.

Placing all of these different words into internet searches brought me to the medical journals that explained it. Doctors at the time were not even willing to discuss this option with me. So much of what is happening to the body at that time is affecting the brain, and the brain hasn't even stopped growing. I believe there is still plenty of time to train the brain to deal with this challenge.

I also suggest that you take a serious look at her diet. I am now amazed at what I thought was a good source of nutrition for my daughter. I am not attempting to correct the bad habits she acquired. Diet / nutrition is being looked at recently for all neurological disorders.

 

[RobinN]

Here is what the EF says about the subject:

The levels of seizure frequency in women with epilepsy might be influenced by their menstrual cycles, according to a recent study presented at the American Academy of Neurology meeting in San Diego.

According to Andrew Herzog, M.D., of the Harvard Neuroendocrine Unit at Beth Israel Deaconess Medical Center in Boston, women with epilepsy having a shorter or longer than normal menstrual cycle reduces ovulation. Herzog and his colleagues found evidence that lack of ovulation boosts the frequency of seizures.

"Ovulation rates are much lower among women with epilepsy than in the general population," Herzog said.

In the study, the average rate of seizure occurrence was every four days in ovulatory cycles and about every three days during cycles with no ovulation.

"These results support the hypothesis that seizure frequency is affected by ovulation and ovulation is correlated with cycle length," Herzog said.

http://www.epilepsyfoundation.org/epilepsyusa/between/menstrual200604.cfm

Epilepsy.com states it this way:

Why are certain phases of the ovulatory cycle associated with an increase in seizures?
The hormonal changes associated with the menstrual cycle are the most likely cause of changes in seizure frequency. The brain contains numerous nerve cells that are directly affected by estrogen and progesterone, the main sex hormones in women. Studies in animals have shown that high doses of estrogen can cause or worsen seizures, whereas high doses of progesterone can act like an antiepileptic drug. Antiepileptic drugA medication used to control both convulsive and nonconvulsive seizures; sometimes called an anticonvulsant.Close

What strategies can doctors use that may reduce seizures associated with the menstrual cycle?
The following strategies may help reduce seizures associated with the menstrual cycle:

* Slightly increasing the dosage of the antiepileptic drugs before the time of increased seizure frequency. (Note: This applies only to women with regular cycles.)
* Reducing the water retention that occurs in the premenstrual period.
* Taking an additional antiepileptic drug such as lorazepam (Ativan) for several days around the most vulnerable time of the menstrual cycle.
* Using hormonal agents such as progesterone or birth control pills for women with catamenial epilepsy may help. However, the effectiveness and safety of hormonal therapy for this type of epilepsy remains to be established.

http://www.epilepsy.com/epilepsy/provoke_menstrual.html

WebMD and Women's Health write:

May 16, 2005 -- Hormonal changes may actually alter the chemical balance in the brain and trigger some of the mood swings associated with a woman's monthly menstrual cycle, according to a new study.

The study suggests that cells in a brain region called the hippocampus generate different types of receptors for the brain chemical GABA during various phases of the menstrual cycle. These changes may affect a woman's susceptibility to anxiety, depression, and seizures.

Both estrogen and progesterone have effects on nerve cell activation, but the mechanism behind changes in seizure activity and increased anxiety are unknown, write the researchers.

They say their study may offer a new molecular basis for the severe anxiety and depression some women experience in the week or so before their period, known as premenstrual dysphoric disorder -- PMDD.PMDD. This may also explain why many women with epilepsy suffer more seizures during this time.

What I did when I was searching for clues, was put all the obvious and not so obvious words into a Google search and came up with so much information that it overpowered my Neurologist telling me that hormones didn't have anything to do with seizures.
***
In this study, researchers found that mice produced more of a particular type of receptor that inhibited the action of GABA during the part of the menstrual cycle when progesterone levels were low.

This caused a dramatic reduction in the normally soothing action of GABA on the brain and increased the risk of seizures and anxiety.

During the part of the menstrual cycle when progesterone levels were high and estrogen levels were low, they found the reverse was true. During this part of the cycle the mice were less susceptible to seizure and anxiety.

Therefore, researchers say that these GABA-receptor changes may be responsible for seizure risk and anxiety levels seen in women with catamenial epilepsy and PMDD.

http://women.webmd.com/news/20050516/menstrual-cycle-may-change-womens-brains

 

[Bernard]

This is the best page I have seen on the subject of catamenial epilepsy:

http://professionals.epilepsy.com/wi/print_section.php?section=hormones_catamenial

 

[RobinN]

Great page Bernard.

 

[mro42]

Thank you Robin and Bernard.

Even thought my daughter is showing signs of changes (Breast is starting to develop), she as not started her menstrual cycle yet. But since her breast as started to develop some hormones must have started to kick in. Which coincide with her starting to have seizures.

We did start to keep a journal of each episodes, with as much information we think might proff valuable down the road.

As far as beeing able to monitor her hormone changes we will have to wait her cycle to start. The hormone change she is going thru with puberty will mostlikely have it's up and down.

OK... I have to go read all this great material you sent me :tup:

Martin

 

[RobinN]

With your journal you will have a great reference for when other changes are visible. For the time being you can see if the episodes cluster, and then count days, and just make notes. I color code my calendar so that I can quickly see the times of the month that I need to warn the school. It is very helpful if you start seeing a pattern. I also keep track of late nights, food and drink challenges, tests or other stressful producers. Then I attempt to tie them together if possible. Some triggers go unnoticed. Hard to know sometimes what is going on inside their little heads.

 

[execwife2002]

I agree with RobinN, Journaling is a great skill to use as a wonderful resource to have. Journaling has helped others track specific info., plus you can put your info into a monthly graph. I have used the graphs to look for patterns and any other info. that i may have missed.
Marian
Marian

 

[RobinN]

Marian - would you have a way to upload a copy of your graph. I would love to see one.