Introducing myself and my boy

[Dutch mom]

Hello,

I've been reading on this forum for a few months now and I have allready found many interesting and helpfull things to share with other parents on our Dutch forum. So finally I've decided to register and to introduce myself here.

I don't have epilepsy myself. My 8 year old son (born 1999) was diagnosed with Lennox Gastaut syndrome. He's handicapped due to post-natal braindamage; he 's in a wheelchair, is mentally impaired and 100% depending on others for anything. Nevertheless he's a wonderful, happy kid, the joy of our life together with our other two children, 4-year old twins.

Our eldest developped seizures at age 1,5 and was diagnosed with LGS at age 3. We've seen many myoclonic, tonic, atonic, tonic-clonic and absence seizures developing between age 1,5 and 5.

We've tried valporate, topamax, ethosuximide, keppra, lamictal, phenobarbital, taloxa and more, together with benzo's like clobazam ad clobazepam, all without succes.

Being AED resistant we've started him on the ketogenic diet 3,5 years ago and this diet really brought a wonder for our boy. His EEG improved over 70% (before KD 90-99% epileptic activity continuously, after KD < 30%) and we only see breakthrough seizures when he is ill or not ketotic enough.

Since 2,5 years he's free of AED and benzo's and only on the KD with >90% seizure control.

Since 5 years I'm one of the moderators of a succesfull Dutch forum for parents of children with a difficult to control epilepsy & children diagnosed with one of the known epilepsy syndromes (and a member on the Matthews Friends ketogenic diet forum.)

I'm aware there aren't many parents posting here and I do feel a bit (in fact a lot) of a stanger, being a mom of a special needs boy with a severe epilepsy syndrome. But I do hope to exchange useful information and experiences here now and then.

Greetings from Holland and wishing you all the very best.

Mom of an 8-year old boy with LGS syndrome, succesfully on the ketogenic diet

 

[Birdbomb]

Welcome Dutch Mom

One of the moderators on my site is a Ketogenic diet coach. Her son also has LG. He had become seizure and AED free on the diet. Scott is now 18 years old and just a sweet kid.

Glad you are here! I am sure you will have much to share.

 

[RobinN]

Hi Dutch Mom-
I am also a mother with a child having seizures. She is 16 and began having seizures 1.5 yrs ago.
We are trying a new nutritional plan, though not the ketogenic diet.
We are all glad that you decided to join us.

 

[brain]

:hello: Dutch Mom!

Glad to have you here in CWE!
There's other parents here who
have children or teens with Epilepsy,
so you'll have the opportunity to meet
them as well! WELCOME ABOARD!

 

[speber]

Welcome Dutch Mom!....

I hope you find some good information here on the friendliest forum in the world!
:rock:

 

[Bernard]

Hi Dutch Mom, welcome to the forum. :hello:

I believe we have "met" at the Matthew's Friends' forum. :tup:

There are actually quite a few parents here (as well as spouses and friends of people with epilepsy). You are not a stranger (or intruder). We are very glad to have you here! :mrt:

 

[montse]

Welcome Dutch mom, we can always help each other.
Ik houd van Nederland!!

 

[Dutch mom]

signature

Question:
Where can I add a standard signature?
Can't find it in the control panel.
Thanx!

 

[Bernard]

Restrictions on signatures. In the User Control Panel, Edit Signature is the very first link in the menu on the left hand side.

 

[Dutch mom]

Sorry, but the first one I see on top of User CP is 'Edit user name and password'

The menu shows:

Settings & Options:
Edit Email & Password
Edit Profile
Edit Options
Edit Avatar
Edit Profile Picture

Can't find anything about a signature there.

Your link about restrictions doesn't open.

 

[RobinN]

Due to the new restrictions you have to reach 50 posts first before you can edit and add your signature. We have had some real nasty folks coming and spoiling the party.

 

[Bernard]

The link to edit the signature should appear after you have 50 posts. You should be able to open the link I posted earlier. It's a "sticky" thread in the General Issues forum.

 

[criskris]

Hi Dutch Mom,
I have a daughter who is 5 and recently diagnosed with Epilepsy. In addition to her AED (Keppra) we have started trying the VIBE machine (electromagnetic therapy). Jury is still out on this alternative therapy.

It's good having others with kids to talk with.

 

[Raye]

We tried keto diet for 7 years with little/no success

I want to caution you some of the side effects of such a drastic diet. We faithfully followed it for 7 years hoping for dramatic results like yours. Unfortunately it did not control my daughters seizures. After she was off the diet we learned her chronic long lasting bruises were due to the diet. She also has remained very small due to the starvation factor of the diet. This has inpacted her normal growth pattern and is still smaller than her 7 year old brother (she is 10). I'm glad its working but careful that the side effects don't cause permanent problems.

 

[tinasmom]

Welcome Dutch Mom -

My daughter had seizures from the time she was 6 until 24 (she passed away during a seizure) and my granddaughter now has seizures. This is a wonderful forum with wonderful, caring and loving people. I am sure that you will find it to be the same for you.

 

[Dutch mom]

For Raye, about the ketogenic diet

Hello Raye,

Thanx for you reply.
I'm very well aware of the possible side effects of the ketogenic diet, In fact I do know several kids with stagnating growth on the KD. I've educated myself very well in the diet, even attended the Matthews Friends Keto conference in England last november.

Our stories are very different since the diet didn't control your childs seizures and she didn't grow well. I'm really surprised to read you continued the diet for 7 years. Why such a long period while it showed no positive effect? When the diet makes no difference in 4-6 months and finetuning gives no result, it's better to wean it of. For some children the diet works (short term or long term) and for others it simply doesn't. I'm sure we would have stopped the diet when there had been no result, especially when he wasn't growing well.

In my son's case it is the only treatment wich made a diffence for his epilepsy. And what a difference! Before the diet he was having 50-100 different types of seizures a day. His EEG was continuously disturbed in the typical LGS pattern, which gives no good prognosis for development at all, especially not for retarded kids.

I really think the possible side effects of the KD are not as heavy as the many side effects my son suffered from all these AED that didn't work at all. All those different med's got him hyper & overactive, a dozy non-responding 'zombie', hallucinating, severly constipated, easy brusing (caused by long term use of valporate in a high dose) and he had swollen, easy bleeding gums.

We stopped trying more AED after we'd investigated on the side effects of felbatol, a dangerous drug at the end of the row. Since the valoprate is weaned off and he's on only the KD, we've seen not as many bruses as before, he's not constipated anymore, his gums normalised and he's more clear, more happy, more responding and better developing than ever before. Breakthrough seizures are rare since the diet.

We're lucky he is a good eater and grows very well, he even is a bit to heavy. Started the diet at age 5 and 21 kilograms, now he's age 8,5 and 32 kilograms, and is growing well in lenght.

So we've no other choice. Intractable epilepsy as the Lennox Gastaut syndrome tends to respond well on the KD and bad on AED. We realize this diet won't be forever but for now we enjoy every good day and every little step of progress he makes.

He's getting daily multi minerals and vitamins and a calcium supplement, Q10 and carnitine. We're cooking with healthy oils and his cholesterol, kidney function and blood tests are okay.

We've recently tried to lower the ratio to 3,75:1 because he's on the diet for 3,5 years, he got immediate lower ketosis and breakthrough seizures... so we're back on 4:1 for now. He's doing fine and more carbs definitely are doing him no good. Never change a winning team, my instinct tells me...

Mom of an 8-year old boy with LGS syndrome, succesfully on the ketogenic diet

 

[Raye]

I'm always glad to hear when someone is able to bring relief to their child. The diet has obviously progressed with increased research and children being on the diet for longer periods. When my daughter started the diet now over 8 years ago there was still alot of unknowns and guess work. The first few months it went well for my daughter. In fact we could see some results. My daughter still spiked over 100 seizures a day (some days only a few) even on the diet but when a caretaker gave her something off the diet we knew immediatly her seizure activity increased. Because we were trying everything we didn't want to throw out any tool that we could use to bring even minimal relief. The reason I wanted to let you know about the side effects was because we talked to our medical team about my daughters stagnant growth but they kept saying the keto diet had no such side effects. I wanted to make sure you didn't get the same static we did. You obviously aren't, you are very well informed. After fighting the doctors for over a year about withdrawing her from the diet my daughter finally crashed off the diet refusing to eat anything for a whole week. It was a week hospital stay to put her on a normal diet again. But we realized just how little the diet was doing when in perfect ketosis (monitored by the hospital) she had more seizures in a day then we could count. We are still on a rollercoaster ride of good days and bad weeks. We are struggling with weaning her off of 9yrs of phenobarb which has equally (if not worse) devasting side effects. I at times feel like I have missed alot of the info on alot of my daughters treatment due to the fact that she is really my niece and came to be my daughter only 5 years ago. We joined her life in the middle of treatments. We have a good grasp now but of course there is always more education to be had. And learning to deal with doctors has been a learning curve. We trusted what they said all the time at first now I realize much of the time they are overworked sometimes undereducated with new techniques. Thats why I thought this site might bring us new ideas of treatment. She has had a frontal lobectomy and has a vns. One thing that our nurse practioner is trying is increasing selenium a mineral she has researched is almost always low in children with seizures. The main side effect we noticed so far was much less constipation. Anyway thanks for listening to my long winded reply. I appreciate any new ideas.