Autism & Epilepsy & General Epilepsy Experiences

[Blonde Angel]

After Xmas day

We are off to a part of oz that's going to be about 700kms away one way from where I live, its going to be beach and pool stuff.
My brain will be in fun mode, no internet, just relaxing with family and kids. A nice wine to chill and watch the sun go down on the beach and get a nice tan.

May it be a good one.
ta ta

 

[Zoe]

Have a great trip!

 

[Blonde Angel]

Yeah
We are back, it was over 6 hours of driving one way, but it was worth it, we all loved the pool and the beach area.

We had two seizures the first was on the second afternoon which I suspect was due to sleep deprivation and her high anxiety. (New house, new environment, ) It does take time for her settle in to new stuff.

However, we got through it all in all.

When its peak time like Xmas/New year we tend to stay from the resort accommodation and book a private holiday house so it feels like a home away from home.
Otherwise its gets too overwhelming for my girl.

Ps
She gave me a smack on the arm when I was sort of telling off a person whilst driving who cut me off. It was like she was saying "Mum cool it and shut up""
She knows my vibes, she put me in my place.

 

[Zoe]

What you are saying is so positive! I hope the trend continues.

 

[Blonde Angel]

Thanks Zoe
I hope you are doing ok.

I'm thrilled to say no seizures since 8th January........

 

[Nakamova]

That's great news BA!

 

[Blonde Angel]

Thanks
Its a great feeling and I really hope no more seizures....
Zilch so far
She is a teenager as of today..........
(she is currently bashing to a few helium Bday balloons ATM ....)

 

[Blonde Angel]

No seizures noted....
However a very bad bout of gastro since Thursday, she is still not at school yet.

Its been going around in the school community.

 

[Blonde Angel]

Well there has been some revelations for me about triggers for my girl.

1. Holidays and travelling away increases her anxiety = increased risk of seizure
2. She never sleeps well the first night away from home sleep deprivation increases her seizure activity.
Last Xmas we went away was seizure, this Easter break we travelled away another seizure.
Its the anxiety associated with her Autism that's the culprit.
Am making more of an effort to provide her with visuals of places we will travel to so she can be prepared and help lessen her anxiety.

As a family we cant stop travelling, but we make her life a little easier to cope.
These days illness does not seem to trigger her seizures... a good thing really.

 

[Nakamova]

Does she have any rituals to help her sleep (like listening to certain music or tapes)? Just curious.

 

[Andrew]

metabolic observations in Autism

What is the metabolic observations in Autism?

Hi Blonde Angel you may find the following links interesting

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4370364/

http://news.vanderbilt.edu/2015/01/altered-dopamine-signaling-may-offer-a-clue-to-autism/

http://autismcoach.com/neurotransmitters-and-autism/

http://www.ncbi.nlm.nih.gov/pubmed/14755455

Neurotransmitters: Serotonin (5-HT), glutamate, GABA, and dopamine (DA) are neurotransmitters that are critical for neurodevelopment, including cell proliferation, migration, differentiation, apoptosis, synaptogenesis, and synaptic plasticity [32]. Therefore, abnormalities of any of these neurotransmitters could be detrimental for neuronal development and potentially be associated with abnormal neuronal function in autism.

The above quote was taken from page 1286 of the following URL:

http://sphinxsai.com/Vol.3No.3/pharm/pdf/PT=11(1281-1289)JS11.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1326353/

Then you have the links to some extremely rare forms of Epilepsy:

https://ghr.nlm.nih.gov/condition/pyridoxine-dependent-epilepsy

https://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

It should be also mentioned that several neurological pathologies such as autism, schizophrenia, Alzheimer’s disease, epilepsy and Down’s syndrome can be caused by the deficiency of PLP, often determined by a reduced activity of PLP salvage pathway enzymes including pyridoxal kinase and pyridoxine 5’-phosphate oxidase

Taken from the following URL:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3528064/

Vitamin-Responsive Epileptic Encephalopathies in Children

http://www.hindawi.com/journals/ert/2013/510529/

Chapter 1 Basic Mechanisms Underlying Seizures and Epilepsy

http://www.ncbi.nlm.nih.gov/books/NBK2510/


**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

 

[Blonde Angel]

Thanks to you Andrew for those links I really appreciate some more insight.

I honestly have had no time lately and it has nothing to do with Epilepsy and Autism... have had to deal with 2 sick family members ( brother and father with some health issues) to put my attention to...


I will check on those links Andrew...
thanks!!

 

[Blonde Angel]

Does she have any rituals to help her sleep (like listening to certain music or tapes)? Just curious.

Hey Nak

Yeah I don't underestimate the power of music and she really luvs it, but sleep time is about dimming the night light and letting her go to sleep when she can.
She attends every Friday a music therapy where she can play assorted musical instruments (loves the harp) for half hour and she loves dancing to all the latest music ..she will change my car radio stations to what she likes....


So she gets enough music I think.

Also she has own iPad to do her own music ...
:rock:

 

[Blonde Angel]

Hi Blonde Angel you may find the following links interesting

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4370364/

http://news.vanderbilt.edu/2015/01/altered-dopamine-signaling-may-offer-a-clue-to-autism/

http://autismcoach.com/neurotransmitters-and-autism/

http://www.ncbi.nlm.nih.gov/pubmed/14755455


The above quote was taken from page 1286 of the following URL:

http://sphinxsai.com/Vol.3No.3/pharm/pdf/PT=11(1281-1289)JS11.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1326353/

Then you have the links to some extremely rare forms of Epilepsy:

https://ghr.nlm.nih.gov/condition/pyridoxine-dependent-epilepsy

https://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

Taken from the following URL:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3528064/



http://www.hindawi.com/journals/ert/2013/510529/



http://www.ncbi.nlm.nih.gov/books/NBK2510/


**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Thanking you for highlighting some works to my attention...
Its always important to have an open mind.
The serotonin is something not to underestimate...

 

[Blonde Angel]

Have got an appointment to a review in approx. 2 weeks with the medical nutritionist.
We are both fighting a minor cold breathing like goldfish but no seizures.. (its winter here)
What I'm not liking is her touching to nose>mouth> eyes its like the congestion is driving her nuts.
Both dosing up on the chicken soup.

 

[Nakamova]

Hope you both feel better soon!

 

[Blonde Angel]

Thanks Nak.

Been rather busy with NDIS stuff which is the National Disability Insurance Scheme. In Oz there there has been positive steps to enable people with disability (which includes my girl) to access support services... be it education, community inclusion,later for her supported recreation, employment etc..
This involves getting financial funding from Disability Services, which I have been successful in getting.

Many trials happening and the service providers need to get their act together to meet family and individual unique needs.

 

[Blonde Angel]

School Hoidays atm its lots of trips to skating, movies, circus, outdoors (if nice weather), great fun.
One seizure this month.

 

[Blonde Angel]

From Dr T, results of copper low,my girl is currently on copper tablets with some handy B12 in it.

 

[Blonde Angel]

Okay..
Update: My girl has ...
Increased Glycine from once to twice daily, continues on the Taurine (twice daily also).
Melatonin nightly.

Seizure activity once monthly.