[doosesyndrome] - New to this forum and in panic!

[Monika_Miheller]

Hi!

My name is Monika, I am from Sweden and I am new to this group. My son Axel (2,5 y) was diagnosed with MAE soon three weeks ago. My son has four kinds of seizures: Grand Mals, Drops, Absence, Myoclonic.

After the third Grand Mal we started with Valproat and got rid of the Grand Mals and the Myoclonic seizures it seemed. After taking Valproat full dose only for three days we he started taking Lamotrigin also. He has been taking Lamotrigin for 10 days now and will reach full dose in sex more weeks.

A third medicine, Clobazam (Frisium) was also given just a few days after the introduction of Lamotrigin. 1,5 day after taking Frisium he now has his Grand Mals back and today he has had more seizures than since his onset. Frisium is given for Grand Mals so I don´t understand what is going on!

I am starting to panic.

Does anyone have the experience that when introducing a new medicine things get worse and that the medicine later works after reaching full dose?

The whole situation feels devastating right now. He was without Grand Mals for ten days. We thought Valproate was working for his Grand mals and Myoclonic seizures.

The last ten days he has had 1-4 drops and absences daily. Today he has had one Grand Mal, some absences and six drops so far and it is only 3.30 pm here.

Thankful for all information I can get!

Best Regards
Monika

 

[Nakamova]

Hi Monika, welcome to CWE!

In some cases am anti-epileptic medicine cause seizures or make them worse, so that may indeed be what is happening in your son's case. Why did the doctor add the additional medicines so soon after the Valproate? Ordinarily, the goal is monotherapy, and other meds are only added after any single med stops working or becomes problematic. I would recommend that you get in touch with his doctor and ask about tapering off of either the Lamotrigin, the Clobazam or both, since they seem to coincide with the increase in seizures.

Best,
Nakamova

 

[Nakamova]

FYI -- I deleted your duplicate posts in the other CWE forums, the one intro is fine.

 

[Dutch mom]

Welcome Monika,

I'm from the Netherlands and mom to a son with Lennox Gastaut syndrome. Just like your son my son's seizures only increased on Lamictal. He was on Frisium for over 3 years, it was a very difficult med to wean of because it's a very addictive one. We've tried over 10 other meds without succes.

I'm also moderating a Dutch forum for parents with kids who have epilepsy syndromes. We do have a few members who have a kid with Doose.
Doose syndrome tends to be medication resistant. Several kids with Doose do react very well on the ketogenic diet, just like kids with LGS like my son do. He is on the keto diet for over 6,5 years and this diet has helped to reduce his seizures significantly. Instead of 10 to 100 seizures each day, he now has just occasionally a seizure. His EEG has improved more than 70% and he 's free of AEDs since 5,5 years now.

More information about the ketogenic diet you can find on www.matthewsfriends.org - I do recommend their family forum. They do have several members with Doose kids there.

This forum might be helpfull: http://health.groups.yahoo.com/group/doosesyndrome/

On CWE we do have a few other members who have a kid with Doose:
http://www.coping-with-epilepsy.com/forums/f20/new-here-son-doose-syndrome-10843/
and
http://www.coping-with-epilepsy.com/forums/f20/my-son-diagnosed-mae-doose-10219/

 

[Endless]

Monika,

Welcome to the forum. I'm glad you found us.

I'm also curious why they gave him more types of medication so quickly, instead of adjusting the dosage of Valproate? Nakamova is right - monotherapy (treating with just one drug) is the usual goal for doctors. It makes it easier to see the direct relationship between the drug's effectiveness, the seizures, and side effects. I'm sure your son's doctors must have reasons (or maybe they don't). I'm just wondering if they explained their reasons to you? If not, it may be a very good idea to ask.

My warmest thoughts are with you and your son. It's so stressful to have a child who is sick and to try to find ways to help. Please know we are here to help you in any way we can.

 

[Miss Choccy]

:e:

Hi Monika,

I'm also wondering why they added the additional AEDs so quickly. Were you given any reason why for the additional AEDs? Me thinks thats far too quick - and maybe the other AEDs are unnecessary - or at least at this stage!!! After all, most doctors prefer to have the patients on monotherapy (that is only one drug) for treating epilepsy - unless the other isn't proves not to be working well enough, stops working or becomes problematic!!! And it usually takes some time to see if the first drug they are using is working to control the seizures well enough. Not only that but in the majority of cases the less drugs a person is on - the less chance of side-effects happening or worsening or having additional side-effects. The more AEDs a person is on the chance of having side-effects increases or worsens or the person might suffer from addition side-effects. Plus the additional factor that many drugs can interact with each other thus can affect effectiveness of the drugs being used or have a negative effect of side-effects. Hoping I didn't scare you with information above - but it might be a good idea to question what your son's doctores are doing.

Personaly I think you sone should be taking of the clobazam since its having a negative effect on your son's epilepsy - ie - giving him more seizures then he usually does and started up the grand mals again!!! Good Luck with that!

Am hoping that your son's epilepsy becomes controlled or at least much better controlled then it is at the present and that he soon has much less seizures or better yet none at all!!! Wishing you and your son the very best of luck in gaining control over his epilepsy with no or very limited side-effects!!!

Miss Choccy

Susan

:e:

 

[Frink]

Hi Monika,

I am sorry to hear about Axel's increase in seizure activity.

I am not a DR.

I am worried, just like the rest of the poster's here, why the DR introduced so many medications so quickly.

I am worried about 2 things with the medications.
1) The Benzo (clobezam).

I am not a fan of long term use of benzo's (I think they are great for rescue meds) because of side effects " The benzodiazepines suffer from many unwanted effects which include tolerance, dependence, withdrawal symptoms, rebound insomnia, hang over effect, alteration of memory process" and it's effects on sleep cycles.

Sleep is very important for a healthy brain and people with epilepsy have a more critical need for high quality, restorative sleep which benzo's do not give. Benzos interfere with the deep cycles of sleep . Deep sleep is also important for memory.
I know for me, when I don't get my deep dream sleep my seizure symptoms increase.

"They induce sleep, prolonged sleep time and reduced night wakenings. They increase stage 2 sleep, and reduce stage 1, 3, 4 and REM (Rapid Eye Movement) sleep." http://www.ncbi.nlm.nih.gov/pubmed/1679317

Benzo's work by making the effects of GABA, at the GABA a receptor site, more powerful, this is important for worry #2,

2)The combination of meds could be causing GABA excess seizures. GABA, when maintained in a "normal" range, has a calming effect but when it gets low, outside of its normal range, seizures occur, paradoxically when GABA levels are forced too high, above this normal range, GABA loses its calming effect and becomes excitatory, leading to an increase in seizure activity.
This is one reason why people who have seizures that are not caused by a GABA shortage can have more seizures when put on a GABA oriented medication.

This seems especially true in absence seizures and some frontal lobe seizures. http://www.aesnet.org/files/dmfile/epc_13791.pdf

Valproate works by slowing the metabolism of GABA, increasing its levels. http://en.wikipedia.org/wiki/Valproic_acid

Lamotrigine also can increase GABA levels by 25%. http://www.ncbi.nlm.nih.gov/pubmed/11839834

Clobazam works by making the GABA have a stronger effect at the GABA receptor, increasing its potency.

Put those three drugs together and you could have more seizures.


Edited to add: After reading a little bit about Doose syndrome, those 3 med's Valproate, Lamotrigine and occasionally clobazam, clonazepam or nitrazepam (the benzo's) are the standard textbook treatments.

 

[occb]

Frink, that post was very illuminating. Thank you! You've cleared up some questions I've had about certain meds and gaba.

 

[Nakamova]

For seizures OTHER than absences, increased GABA (from AEDs) behaves properly -- sedating and relaxing the brain.

The other exception is in neonates. In the developing brain, GABA does have an excitatory rather than inhibitory effect.

 

[Frink]

Hi Nakamova,

I will have to reread the study about GABA, seizures and the neonate. My memory (which is as air tight as a screen door) of the study is that the excess GABA modified the neural net in the neonate creating an epileptogenic region of cells thereby causing an epilepsy but once the brain matured the effects of the excess GABA no longer caused these neural changes, so the GABA was not the cause of the seizure but the cause of the structural change that leads to the seizures, I am pretty sure this was based on animal studies.

This new study is still in the animal study phase and the research looks promising. The concept explains why some people with certain types of epilepsy and/or certain genetic coding anomalies respond poorly to the GABA preserving or GABA enhancing medications.

If you put the 2 together it look like excess GABA can both cause neural changes in the infant brain that lead to epilepsy and excess GABA can be a trigger for seizures in certain people with certain types of epilepsy.

For most people taking a medication that raises GABA is not a seizure trigger.

For some raising the GABA has no effect on seizures negative or positive.

For some people it stops their seizures, maybe these people are low GABA and the medication brings them back into the proper range.

For a third group of people the excess GABA from a combination of a GABA preserver and a GABA enhancer could be needed to overcome a downregulated GABA receptor, similar to how other medications like narcotics (morphine) must have their dosages raised or a stronger narcotic (enhanced morphine like oxymorphone) is used to maintain a certain level of pain control.

Then there is the last group who for some reason react negatively to this high level of GABA with an increase in seizures.

Hopefully further studies will fill the information gap and explain why this happens and come up with a new direction for medication development.

We can always hope.

I hope I never have to say GABA again. :roflmao: LOL!!

 

[Frink]

OK
This study talks about GABA causing neural changes leading to epilepsy in infant brain. http://www.eurekalert.org/pub_releases/2005-12/cp-hsp120505.php


This one talks about GABA drugs being excitatory and increasing seizures in neonates. http://www.aesnet.org/files/dmFile/epc_268.pdf , Here is another link to this study that states this " recent evidence points to a recapitulation of this early developmental pattern of chloride transporter expression in neurons exposed to injury and in hippocampal neurons from patients with mesial temporal lobe epilepsy."
ttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2566615/

Meaning that in some patients with "neurons exposed to injury and in hippocampal neurons from patients with mesial temporal lobe epilepsy" the cells returned to the neonatal condition that allows the GABA to trigger seizures.

This could mean there is a potential risk for increased seizure activity from excess GABA for more than just people with frontal lobe seizures, absence seizures and certain genetic code anomalies, it would also include people with some trauma induced seizures and some with TLE.