New - Josephine

[Josephine]

Hi! I signed up a couple of days ago.
I have a 16 yr. old son, Joseph, who has ongoing vertigo like symptoms, including vomiting, ankle clonus, and the need to sleep for a short while, after some acute attacks.
These attacks have been going on for over two years.
They always occur after movement. They are particularly intense if he eats before. He will get less dizzy and nauseas if he has a somewhat empty stomach.
He has been evaluated from head to toe, MRI, Heart, blood,
urine, ENG, PT, Vision Therapy. Normal EEG, two years ago. His quality of life has really gone downhill. He used to ride his bike, run, very active.
Joseph is also Autistic, (High function).
He is smart, funny, and has endured this setback with real courage. It doesn't stop him from trying to do these things again. I am wondering if this forum might lead me in a different direction. I have read some interesting posts, does anyone think I am off base?
My heart and positive energy go out to everyone, don't give up.

 

[RobinN]

Hi Josephine -
My daughter began having neurological symptoms at the age of 14. There is a lot of information connecting nutritional choices to the types of symptoms that our kids are having.

I am researching reactive hypoglycemia. Her fasting blood tests did not show the problem but a longer three hour one did. Took 2.5 yrs to figure this one out.

Also there is a huge connection between gluten intolerance and ASD kids. My oldest son is high functioning as well. Or just food allergies in general. Gut problems, yeast, fungal issues.

There is HOPE for him. He is just going to have to make some lifestyle changes.

 

[Josephine]

Josephine - Thank you!

Hi, Robyn,

I appreciate the information that you shared with me.
Joseph too, has been tested for diabetes, gluten sensitivity, ( blood profile only ).
Yesterday, before I read your reply, I shopped around for some alternatives, to what Joseph eats.
I have incorporated a organic menu to our household, (three humans, and two pets), for the past couple of years. However, as you probably know, gluten free, although, a lot more choices today, is not a attractive one to my son. I am going to give it a try again, until I know with more certainty, what ails my son.
I will share if I have any success, and until then, back to the neurologist........

 

[epileric]

Hi & Welcome Josephine

Diet seems to effect epilepsy more than a lot of doctors acknowledge. Regardless what you eat it is suggested to have 6 small meals every day rather than 3. That seems to be especially relevant to Joseph.

Meanwhile get comfy, have a coffee :cheers: and look around the site. It's a well of info with some very well informed people.

 

[Josephine]

Hi! Eric,

Thanks for the reply. Yes, I agree with the smaller meals throughout the day.
I have not joined a forum before, so I am not quite sure of all the ins and outs...
Enjoy the day!

 

[Bernard]

Hi Josephine, belated welcome to the forum. :hello:

Has he been tested for other food allergies? Falling asleep is a common symptom of post-ictal states (post-seizure activity).

Are you keeping a journal/diary of everything that he is eating and a record of the symptoms? It might help you to spot a pattern.

 

[Meetz1064]

Hi, hello

and how do you do!

It's nice to "meet" you, Josephine! :clap::woot:

You're already getting some great information...RobinN and Zoe are two nutrition gurus, if you will, that hang around here. So put your feet up and enjoy Eric's coffee........it's quite good.

Plenty of nooks and crannies to check out here. Mr B has built us an AWESOME home here.

Take care.

Meetz
:rock:

 

[RobinN]

Diet seems to effect epilepsy more than a lot of doctors acknowledge.

:agree:

(I like to use the word nutrition though, as d.i.e.t. seems to give a negative image)

 

[epileric]

:agree:

(I like to use the word nutrition though, as d.i.e.t. seems to give a negative image)

LOL, good point, I'll try to remember that.

 

[Josephine]

Hi, Bernard!
Thank you for your post. I have not kept a detailed log of Joseph's incidents. I will begin one ASAP!
I feed my family the best that I can (organic, whenever poss.)
Minimal dairy, meat. However, I understand even minimal intake of a (allergic) food, is detrimental.
I will try and start to pinpoint any food associations. Thanks again.

 

[Josephine]

Hi, Meetz!
Thank you for your post. I'm not certain if this is the road to travel, but it can't hurt.
I have read some helpful tips on diet, and after this latest holiday, I will get serious.
Thanks again.

 

[Bernard]

Hi, Bernard!
Thank you for your post. I have not kept a detailed log of Joseph's incidents. I will begin one ASAP!

We found that using a basic monthly calendar with different colored markers (and/or different symbols) to represent the different symptoms/seizures really helped to spot patterns.