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  #41  
Old 10-17-2015, 07:24 PM
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I"m sorry he was put through that ordeal. I was addicted to klonopin ! Awful side and withdrawal effects (every few hours, when current dose begins to wear off. All these issues can be so overwhelmng emotionally. Hoping you get a lot of support too!
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  #42  
Old 10-19-2015, 12:58 AM
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Originally Posted by Zoe View Post:
Hi Angel,
If the links are not working, do you know how to cut and then paste them into the address bar? If you don't get them to work, can you send them back to me to test them out?
For GABA it may be easier for you to try these searches (and others you may think of):
"GABA Seizures"
"GABA and nervous system"
"gaba and autism"
"benefits of GABA" watch for hype on this one and double check with your doctor or pharmacist.

For theanine:
"theanine seizures"

We are all goin to be so informed on these things!
Hi Zoe
The links are working what you sent me but I'm not that good with computer stuff.
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  #43  
Old 10-19-2015, 01:03 AM
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Originally Posted by Zoe View Post:
Hi Angel,
If the links are not working, do you know how to cut and then paste them into the address bar? If you don't get them to work, can you send them back to me to test them out?
For GABA it may be easier for you to try these searches (and others you may think of):
"GABA Seizures"
"GABA and nervous system"
"gaba and autism"
"benefits of GABA" watch for hype on this one and double check with your doctor or pharmacist.

For theanine:
"theanine seizures"

We are all goin to be so informed on these things!
Originally Posted by Nakamova View Post:
Hey Blonde Angel, sorry just saw your question about links regarding theanine and seizures. See http://www.maneyonline.com/doi/abs/1...12Y.0000000033 The study suggests that it may raise the seizure threshold for limbic seizures, (temporal and frontal lobe focus), but lower it for generalized seizures.

If your daughter doesn't experience generalized seizures, then the theanine supplement might be fine for her to take.

I only get generalized seizures. Anecdotally, when I tried a theanine-based product called "Cognitea" (see http://cognitea.com/) I didn't have a seizure, but I felt as if I might have one. Hard to describe the sensation, but I realized that theanine tea product was hurting more than it was helping in my case.
Thanks for the information, I appreciate that. I haven't given any theanine yet, I want to check that with the medical nutritionist whether to give a smallish dose perhaps.
Unfortunately my girl does get some generalized seizures.
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  #44  
Old 10-19-2015, 01:34 AM
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Originally Posted by MAB View Post:
My DIL and I just had GS at hospital for 5 hours today for digestive disorders. He had a contrast enema. I don't know if it was more traumatic for him or us. We were all crying. Of course he couldn't expel the contrast so more torture when they had to had to reinsert a tube and withdraw the contrast. They could only get less than half out.
Once it was over he seemed fine. I hope him memory of it fades soon.

So worn out. 2 klonipin and to bed I go. People don't realize how many physical health issues go along with autism.
Hi MAB

For a child with Autism and any child it can be an unpleasant experience going to hospital. The kid with Autism has their routines out and their level of anxiety increases. I always dread if ever my girl has to go to hospital.

Is your GS very very fussy with the foods? The reason I ask is that most kids with Autism are very selective and have sensory issues. If he is fussy that's going to be challenging as it is.... but I'm aware of some parents getting assistance with a behaviour therapist to try to get the child to have a varied diet with the appropriate foods. Is there some kid friendly eateries that provide buffet type stuff, so there is food choices?? In Australia theres a restaurant called "Sizzlers" that's very kid friendly that has a salad buffet and dessert bar and one can order the main meal. An experienced behaviour therapist will use strategies to assist the child with Autism to eat a varied diet.
Just remember whats healthy may not be good for the tummy.*****

No 2 kids with Autism is the same when it involves foods, my girl is not fussy(which is not typical ) but sometimes she would gag when she ate foods with certain textures.
Two things stand out: What is the kids behaviour? What is the kids diet? is it helping him/her to have formed bowel actions??

Also, a dietician can assist to provide an ĪBS friendly diet.
Therapists cost $$ but there has been great results in the feedback by other parents. Its a longterm investment for their childs future.

I hope your DIL gets support from other parents.
Its important to get information who walk in the same shoes.
I can bring my girl now to bowling, shopping, movies, outdoor golf, it was hard to do but I had an experienced behaviour therapist who continues to support her. She has worked with my girl since she was 4yrs old.

Nothing is instantaneous and I have has to learn very hard not to get frustrated and impatient. When there is regression I do get frustrated.
I have had to be proactive and learn to keep going no matter the negatives.
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  #45  
Old 10-19-2015, 01:45 AM
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Well, my girl had a seizure on Friday, so I'm going to need to review the nutrients, diet to see if there is a pattern or a link anywhere.. or anything I am missing. Am I giving too much or too little of something?
Another thing I am concerned is there is no warning with the recent seizure activity, she used to get quite agitated and that gave people some potential warning. The seizure happening while she was being driven in the car... very awkward.
I need to ask more qns to the medical nutritionist about Taurine, GABA, theanine and I'm now going to check out Robyn's thread about another thing that's caught my eye.

Balance is an important word, what is the brain foods for my girl and what exactly is the brain poisons??
Its about constant review, being flexible and yes trial and error whilst being aware of what is safe.
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  #46  
Old 10-20-2015, 07:21 AM
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Now the stuff about GABA
ITS THE MAIN NUEROTRANSMITTER linked to ANXIETY.

It appears that GABA is influenced by a range of biological, psychological and lifestyle factors. eg Too much or too little exercise likely influences GABA levels as well as does eating an unhealthy diet.

So, I'm looking carefully at how to increase GABA in the brain for my girl.


There seems in my search no evidence of a reliable physical test to determine whether someone has a deficiency in GABA??? Its impossible to get in someones brain ATM to measure GABA levels.
So its about looking into the symptoms.


I'm also looking carefully into the relevance of Glutathione in Autism. Glutathione seems to protect the brain cells from the damaging effects of a baddie toxin called mercury.
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  #47  
Old 10-21-2015, 12:22 PM
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I got similar problems daughter with Downs who had e went to st piers is on the autism spectrum,not easy is it..she in residential now that brought another set of guilts
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Old 10-21-2015, 12:24 PM
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Originally Posted by seagull View Post:
I got similar problems daughter with Downs who had e went to st piers is on the autism spectrum,not easy is it..she in residential now that brought another set of guilts
I understand the guilt but you have to do what is right for her and for you.
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  #49  
Old 10-21-2015, 08:59 PM
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When links don't work for me, it often turns out I may have had too many windows open or had typed in more stuff than my aging computer could handle. I have a lot of 'Duh!" moments on the computer too!
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Old 10-21-2015, 09:23 PM
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Happy Birthday to you Zoe, may it be healthy and happy.

Oh I am just a moron when it involves computers.....
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  #51  
Old 10-21-2015, 09:33 PM
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Originally Posted by seagull View Post:
I got similar problems daughter with Downs who had e went to st piers is on the autism spectrum,not easy is it..she in residential now that brought another set of guilts

seagull
You can only do the best you can... and my gosh you also have epielspy.As long as there is genuine love nothing can beat that. If you are 100 percent sure your girl is being cared for competently

My girl does go to respite I am always making sure her diet guidelines, seizure guldelines, sleeping, communication stuff is being adhered to because sometimes it can stuff things up like loose bowels, more seizures.

But I have to let her go and interact with others, she always has a smile and there is times she is looking sleep deprived but shes happy. the rest of us has time out in the caring role.

Until my hubs and my heart stops beating I will always watch and worry over her.

When it involves a child with special needs all those expected lifes milestones go out the window. But like other parents.. I want her to be healthy and happy... something a lot just take for granted each and every day.
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  #52  
Old 10-22-2015, 08:45 PM
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Originally Posted by Blonde Angel View Post:
Happy Birthday to you Zoe, may it be healthy and happy.
Thanks! It's been a special day!
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Old 10-22-2015, 11:51 PM
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I'm happy to say that my girl and I are liking the brown rice, but my boys and hubs don't. Arrrrggggh I will have to give and take at times in the cooking.

My Daughter has a cough ATM and she is not at school today. Had a letter from the school on Tuesday informing me that a staff member has been diagnosed with Whooping cough (her swimming teacher). So I'm playing it safe for now, it may be just a cold and I have information on the signs and symptoms of Whooping cough.
She is eating healthy foods and has her probiotics as usual.
Watching her favourite movies, rest and TLC should help too..
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  #54  
Old 10-26-2015, 08:20 AM
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I don't know if this could help but some parents use BSL or ASL as English back up don't need go into grammer syntax but I use bsl bc I am deaf therefore she had no chose if she wanted anything she had communicate and gradually the need for sign drop off...
I heard signing can be help with e I know can for autism
this was 30years back we called it makoton then it aim specifically for autism..Alto I seen it very helpful with kids with both autism and e I seen even more it did not help..i also seen parents who so impressed they gone on too do BSL/ASL made career out of it
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Old 10-27-2015, 12:05 AM
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Yeah.
Thanks seagull.
Makaton is now called Keyword Sign. Used for people with disability.
Pairing the sign with a spoken sword for action, object, activity, feeling.What is tried a lot is using signing, touch cues and natural gesture also help.
My girl has been taught to sign "more", "help" and "toilet".

Main strategies used to improve the expressive communication for my girl has involved the following:
*PECS (Picture and Exchange Communication Systems) and Symbol boards and books.
*Keyword sign and touch cues
*Object and music cues
*Relationship approaches like Floor time and Intensive Interaction
*Usage of electronic communication devices eg iPads, Proloquo2go, Big mac switches, Tap it and the Vantage Lite.
*Speech therapy support
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  #56  
Old 10-27-2015, 12:10 AM
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Well, we saw the GP about my concerns for her persistent coughing that started since Thursday. Instead of upsetting my girl with either a blood test or nasal swab we both agreed to put her on the relevant antibiotics that's used for Whooping Cough.

She is quarantined at home for this week to be safe, (no school) since its an infectious disease.... no seizure activity fortunately.
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Old 10-27-2015, 11:55 AM
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Hope she gets better quickly continues to stay seizure-free.
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Old 10-29-2015, 12:08 AM
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Yeah thanks.
No seizures despite her coughing away and not getting too much sleep, so she needs some naps in the day... but as of Wednesday, she is getting really better.

She will finish her antibiotics on Sunday and should be going to school on Monday.

She will also get to have some treats on Saturday as its Halloween and its my Bday. I will enjoy some bad stuff (good wine, good seafood and a piece of cake) but its my day so I will indulge.
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  #59  
Old 10-30-2015, 06:30 PM
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Hi Angel,

It's good to hear she is getting better! Wishing you a very happy birthday! Enjoy!
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Old 10-30-2015, 07:47 PM
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I posted back on the 16th that my GS had a contrast enema on the 16th. He had another xray today and much of the contrast is still in him. He is so constipated I want to cry, poor kid is miserable. Now they have to start daily suppositories for 2 weeks.
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