Autism and Seizures and Why Having Special Nurses Matter

[venuslock35]

My son is also autistic. I heard whe they are really into their puberty stage, thats when seizures CAN start. He hasnt had any THANK GOD. But he's 13yo & just the most awesomest & funny kid. He's on Clonidine .1mg 4x day...Been on it since 4yrs old & worx great for him. Thats all hes been taking...so far. Much love & prayers to your absolutely beautiful son. My God keep guiding your hands & never stop fighting for your son. He has more rights than any "non-autistic" children.

[kgaccount]

@venuslock35 Thank you. Very interesting about Clonidine. Research shows it does help some autistics. It helps those with hyper arousal issues the most. God bless you and your son.

[hairpepper1]

Ive been quietly following your videos in complete amazement You are the epitome of a true mother. I have to tell you this one I cant watch. Absolutely devastating :-(. I have a severely Autistic son 7 years old. Ive done biomedical intervention an no vaccinations. I can honestly say he is getting better, not worse. Have you visited a DAN Doctor for his bio chemistry testings? Does Jamey have multi bacteria strain & Saccharomyces Probiotics,Super Nu Thera (muti-vit), enzymes, Gluten/Casein Free?

[kgaccount]

@hairpepper1 Hi. Yes, I follow the DAN protocol and find it extremely interesting and applicable to my son's behavioral challenges. That said, SIB is deeply rooted in neurochemical dysregulation and as many of us know, diet, along with specific medications, herbs, vitamins, behavioral interventions and special diet offer great hope.

[kgaccount]

No., we stopped 5HTP when he was recently given EFFEXOR, however, effexor, now at higher dose (150mg) along with discontinuing depakote (due to hyperammonemia), caused increase of atonic seizures! So, we are bringing back 5HTP, as research shows HT1a receptors (serotonin) have an influence on seizures..but this is something not well known, as even current research shows 5HTP "may increase seizures" but I don't believe this is correct. 5HTP is GREAT for self injury in autism, but needs research

[delphoto1]

@kgaccount thank you for your movies, I have just started caring for an 8 year old, autistic, shunted (hydroceph) non verbal, self harming, fits and seizures boy! trouble is, he is undiagnosed! The mum 'thinks' that he may have autisim or something ?????!!! I dont want to be too pushy, as she is a single mum at her wits end,I get exhausted after 4 hours of caring for him.You are a very intelligent and patient person, thanks for the educational movies, Kim - Australia

[claudinhacarmo1]

Is he still on 5htp ? Is it working ? I hope so, he looked so fine in teh videos I saw when you started the 5htp. He is such a handsome guy I would have a crush on him if I wasn't married...(just kidding, hope u dont mind)

Hope you are all doing great, keep up with this amazing job you are doing. My heart is with your family.Love.

[kgaccount]

@claudinhacarmo1 Aw..that is cute, thank you.

[kgaccount]

No, Jamey doesn't have Laundau kleffner syndrome. That is what many doctors say Jenny McCarthy's son had, which explains his "recovery"--after given seizure medications and speech therapy, etc...LKS presents with sudden or gradual loss of speech, and childhood seizures, which cause temporary regression, usually respond sfavorably to medications, and the child improves. Sometimes the child relapses. Jamey has never spoken. Severe to profound autism with epilepsy is his primary diagnosis

[nyxpooka]

This may sound like a dumb question, but does your son suffer from Landau-Kleffner Syndrome?

[nicolachildnicole]

This video broke my heart :( How old is he? And how is he doing now? xx

[kgaccount]

@nicolachildnicole He's 21 now, and with constant vigiliant care and monitoring he's doing well. It's a full time job.

[kgaccount]

@nicolachildnicole He's 21 now, but still sucks his thumb! His seizures were well controlled with depakote and then depakote caused insidious health dangerous condition called "hyperammonia" so he had to be taken off depakote. Now on Keprra/Lamictal and Klonipin which is pretty good combo, but it's always balance. Don't depend on meds only. We still bombard him with nutritional foods, etc....cod liver oil, raw mean, gluten free foods, anything to strengthen his mind and body and soul!!!

[SpankUHairyMuf]

u do all of ur son's medical care at home. dat is crazy? but autistic ppl need sum1 they trust and routen (sorry i suck @ spelling).

all i'd like 2 say is ur a gr8 mother & u treat ur son like any other child. & dat is gr8. how many siezures does he have a day? just wondering sorry if its too personal.

[plushbanana]

how is he doing??

[kgaccount]

@plushbanana He's had a few really, really GREAT days. We just started him back on 5-HTP and a brain vitamin mix with choline, so we'll see......

[plushbanana]

@kgaccount thats great!! I hope that it works for him. I am praying for him and u.

[jsrcamp]

I realy seem to like the Nurse in this Video(have seen hime in a few other of your Videos) he seems to realy Care for Jamie and is so gently with him! this made me cry when he was realy going threw the seziure. but he was in great hands with you and that male nurse!

[PinkPunkyKat]

That has got o be scary for him.

[QuickAtTheKeys]

look at those beautiful eyes. God bless

[Zolwena]

Have you tried Diastat instead of Ativan injections? Stopping status seizures has been so much easier since we got Diastat...we used to give Ativan injections, but that was years and years ago, since Diastat came out we have only used that to stop seizures with our daughter

[kgaccount]

@Zolwena Yes, have diastat. Can't always use diastat, as it's PR (per rectum). If Jamey's in diapers, all twisted up, and you try and give PR meds, he may start punching self while having seizures, so IM (intramuscular) is fastest, safest route.

[Crazygirl95ful]

This broke my heart all of his videos make me cry! I will always keep him in my prayers may god bless this child.

[0422michelle]

Bless his heart!! My daughter 12 yrs old has Tonic-Clonic seizures and as a mom it is heartbreaking. I pray his seizures get under control. What a wonderful mom u are!!!

[sodalady]

Thank you for telling me. I am going to school to be a Teacher's aide for autistic children, this gives me an idea what to expect if this happens to a child. Give Jamey a hug for me, OK. God Bless you

[sodalady]

Jamey is lucky to have a family that is there for him. What is the name of the song on this video? I love it.

[kgaccount]

The song is called "atmosphere" by DC Talk...it's one song that encourages us to keep going when we feel so isolated and alone and overwhelmed

[redman58fla]

@kgaccount is this real

[kgaccount]

Yes, redman58fla, this is REAL ..this is a real seizure happening...it's myoclonic jerks that progressed to a tonic clonic seizure..he's also severely autistic, so he presents differently than perhaps someone who is not autistic

[klsymrrsn]

this breaks my heart. he looks so scared! he is so lucky to have such a good family and team of nurses to look after him.

[temporary142]

Hes very lucky to have a mother like you. I dont know many families that could cope with that. I wish you all the best for the future.

[akitaakita2]

He looks so frightened! Poor baby.

[lolly16]

Those nurses were nice, i admire you guys you look like you do an amazing job with your sone. His seizure looked more like convulsive status, even though subtle.. glad he came out of it. my thoughts are with you

[baaker1]

@lolly16 yeah and why is he sick after autism diagnosed early