Re: Going to post intensive tx-Betsy

[Guest guest]

Betsy,

Thanks for your response! was officially dx'd with myoclonic jerk seizures at age 1-1/2 (she actually started having them at 10 months which we thought were just a startle reflex until they slowly, very gradually, got worse). She has been seeing a DAN doc for the last 3 years, and one of the things for near future consideration was to take a look at a metabolic issue. We have been working on strengthening her immune system and since starting she has only been sick once or twice a year and only briefly, and we are currently trying to work on getting rid of her yeast issue and also eliminating the seizures. I will have to ask him about the potential mitochondrial defect as well.

Speaking of seizures, she also has a self-injurious behavior/stim that she does - she looks up at lights or the sun and flutters her eyelids really fast - creating a "strobe" and then has a seizure. Through the DAN doc we have been trying some supplements (Kavinace and Theanine) to try to help with this. I see a bit of improvement but have to give it more time. Any thoughts on this?

Thanks!

Heidi

[Guest guest]

Hi Heidi,I'm not sure what a DAN doctor is, but assume it means naturopathic? I'd still recommend seeing a pediatric specialist in genetics. There are many syndromes they could consider, and a huge panel of blood tests which could indicate if your daughter's body is lacking certain enzymes, etc. I'm assuming you see a neurologist? It could be that the onset of her seizure is the upward turning eyes and flutter. Where do you live?Betsy

Betsy,

Thanks for your response! was officially dx'd with myoclonic jerk seizures at age 1-1/2 (she actually started having them at 10 months which we thought were just a startle reflex until they slowly, very gradually, got worse). She has been seeing a DAN doc for the last 3 years, and one of the things for near future consideration was to take a look at a metabolic issue. We have been working on strengthening her immune system and since starting she has only been sick once or twice a year and only briefly, and we are currently trying to work on getting rid of her yeast issue and also eliminating the seizures. I will have to ask him about the potential mitochondrial defect as well.

Speaking of seizures, she also has a self-injurious behavior/stim that she does - she looks up at lights or the sun and flutters her eyelids really fast - creating a "strobe" and then has a seizure. Through the DAN doc we have been trying some supplements (Kavinace and Theanine) to try to help with this. I see a bit of improvement but have to give it more time. Any thoughts on this?

Thanks!

Heidi

[Guest guest]

✟ JMJ ✟ Birgitta started myoclonic seizures this summer. She also has been having drop seizures and absent ones. I am looking into the keto diet. Many have had success with that.Blessings,

Hi Heidi,I'm not sure what a DAN doctor is, but assume it means naturopathic? I'd still recommend seeing a pediatric specialist in genetics. There are many syndromes they could consider, and a huge panel of blood tests which could indicate if your daughter's body is lacking certain enzymes, etc. I'm assuming you see a neurologist? It could be that the onset of her seizure is the upward turning eyes and flutter. Where do you live?Betsy

Betsy,

Thanks for your response! was officially dx'd with myoclonic jerk seizures at age 1-1/2 (she actually started having them at 10 months which we thought were just a startle reflex until they slowly, very gradually, got worse). She has been seeing a DAN doc for the last 3 years, and one of the things for near future consideration was to take a look at a metabolic issue. We have been working on strengthening her immune system and since starting she has only been sick once or twice a year and only briefly, and we are currently trying to work on getting rid of her yeast issue and also eliminating the seizures. I will have to ask him about the potential mitochondrial defect as well.

Speaking of seizures, she also has a self-injurious behavior/stim that she does - she looks up at lights or the sun and flutters her eyelids really fast - creating a "strobe" and then has a seizure. Through the DAN doc we have been trying some supplements (Kavinace and Theanine) to try to help with this. I see a bit of improvement but have to give it more time. Any thoughts on this?

Thanks!

Heidi

[Guest guest]

Betsy:

I live in Milwaukee, WI. is followed by a neurologist, and we had a 24-hour EEG done last July. He said that her looking up and fluttering her eyes is not part of her seizures it is a behavioral stim, and this stim is creating a strobe with the lights and "strobe lights" can cause seizures.

Thanks!

Heidi