Dad at the end of his rope

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Hopefully someone out there knows how I feel. My son who is 8 years old was diagnosed at a little over 2 years of age. We have been doing biomedical treatments since then. He is still non verbal , non potty trained .

we have recently done a vanco treatment and saw wonderful improvements with playing with toys, and social interaction. Then he got a cold and all those improvement have disappeared. No the biting , pinching, and visual stimming is just off the charts.

anybody have any ideas on these need help

Outside chance it might be PANDAS as major contributing factor and the cold may have be strep.


DISCLAIMER: NOT A DOCTOR, NOT A PARENT, but a pretty good guy.

Okay, and the thing to avoid is the 'medical student disease,' where you latch onto something that is merely possible. And with that warning, here goes:

Can You Catch Obsessive-Compulsive Disorder?, New York Times, Lisa Belkin, May 22, 2005,
http://www.nytimes.com/2005/05/22/magaz ... ted=1&_r=1 a seven-page article:

“ . . . They call it Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection, or, because every disease needs an acronym, Pandas. . . ” [page 1]

“ . . . So the antibodies mistake the basal ganglia for strep and attack. This, of course, will not happen to every child who has strep throat, or even to most children, in the same way that every child who gets strep does not get rheumatic fever. "It's the wrong germ in the wrong child at the wrong time," says Swedo, who suspects that some children are genetically predisposed toward Pandas. . . ” [page 2]

“ . . . The bane of all science is coincidence. For example, a notable percentage of children develop their first signs of autism soon after a vaccination, and it is tempting to blame the shot for the symptoms. But autism as a rule tends to show itself during the years when children are also scheduled to receive fairly regular immunizations. So the odds are good that the two events will be temporally linked. . . ” [page 4]

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And, of course, it is controversial, across the board.

He actually was tested for PANDAS about six months ago and it was negative....

Sounds like a tough situation. Keep your chin up

Does he get any therapy...speech, OT (sensory) ?
Im surprised that he is non verbal and was not diagnosed before age 6? Is that right?

he was diagnosed a little over the age of two and yes he gets therapies, I am afraid I am going to have to pull the amphetamines to slow him down

What is a Vanco treatment? Also, what type of biomedical treatments are you doing? Was your son diagnosed as Aspergers or Autism?

Vanco is to kill what ever he has going on in the gut that could be the cause of driving him nuts, i.e. clostridia releasing the propionic acid into the body and mind..... We have been on so many bio meds and while we are seeing steady improvements ( i use to get no sleep at all, between him bounce throughout the day, then he would sleep for two hours, then be up screaming for 3 hours, this went on for two years) so it has gotten better but we have not gotten our magic bullet yet, or even if we will.

He was doing well on the vanco and now as we are reaching the end of the treatment, we are slipping backwards..... lots of movement, lots of visual stimming, ( all day today , if I try to break him off the stimming, he gets violent).



today I have lost him, hopefully tomorrow he will be back...

AND just that quick, he has a bowel movement , and he is back, this is enough to drive anyone crazy trying to figure out....

What does he sleep like now? I know if I only got a couple of hours sleep a night I'd be shouting and swinging my fists at everything.
Also I suppose you have done allergy tests and so-on? Whats his diet like?

Seems to me that when he feels well, he is accessible; when he doesn't, he isn't.

JOURNAL everything. Sounds, food, situations, temperature, clothes ... EVERYTHING. Then journal the moods and responsiveness. See if you can find patterns.

Autistic kids can respond negatively to the most benign things. What we've learned from the kids that do function and communicate is how important these seemingly innocent environmental factors. You have to find them and control them. He could be upset by TV, heat registers, the color orange ... ANYTHING.

Obviously, some digestion issues exist, but it may not follow a formula. We've got kids here that parents have found sensitive to food dyes or soy, etc., but not gluten or cassien. Go through a slow, old fashioned, elimination and re-introduction of suspected bad foods to figure out (although apparently gluten issues are a slower build up and build down, so a different protocol may be called for in deciding if that is a factor).

Temple Gradin became who she is because of her parents persistence and ability to tune into her; not because of biomedical intervention. But she wasn't cured; it's more that she was able to break through enough to succeed in life and be her better self.

The problem is, and which you will have to accept, is that you can't be sure what your unique child's better self is. Even if you get your child healthy, there is no guarantee you'll have the results you hope for. There is no miracle cure, no matter what anyone tells you, so first and foremost is to remember to love the child you have. Don't stop trying to figure out what the barriers are so that you can remove them, but love the child you have.

I know this isn't what you came here to hear, but part of your frustration seems to be this sense that if you are doing A, B and C, then why don't you have result X? And my answer is that most likely A, B and C never applied to your child. If you let go of that, of the "what am I missing and doing wrong?", then maybe you will relax a little more and start to SEE the little details that will lead you to the solutions actually available to you.

Actually, skip the journal for a while. Skip EVERYTHING for a while. Do what we all do when we have infants: live and breath with the child, and sense their needs through that.

Well, just advice, random thoughts. I'm up late and maybe not making sense. But if something I've written gives you some idea for a positive change, then I'll be glad. If it does the opposite, then you have my sincere apologies.

First, sorry I didnt read right and thought you said your son was 8 and was diagnosed two years ago...now I see that it says he was Dx at two years old.
Just to sort of elaborate and echo what DW was saying. Autism is not like an infection that you can fix by putting things (substances) "into" your child. you have to accept the fact that no matter what you do, there is NO cure. Autistic children just like all children can learn and it is this "learning" that people mistakenly call recovery or cure. My daughter, a lot like Temple Grandin, did not start speaking until she was over three years old. We worked very hard at engaging her by using methods such as imitating her "play". I also used her love of music to engage her. She loved to line up plastic animals so we found a song to sing to her: "Mommy has a pig on her head....Mommy has a pig on her head...Mommy has a pig on her head and she keeps it there all day...and the pig says oink oink" I would put the animal on my head and she would follow it with her eyes so she was looking in my general direction. After a few weeks of this she was making animal noises and she had started taking us by the hand and pulling us to things that she wanted....like putting your hand on the door knob and so saying to us "I want to go outside". We also got her as much therapy as we could. She had someone at the house four times a week for two hours at a time. We put her in speech and OT at the Childrens Hospital through our insurance and once she turned three she was put into a specialized Autism program at a public school as well as continuing the home program. We were very fortunate to have all of these things made available to us.
I do understand that your son may have other problems that makes it difficult for him to learn to speak or to stay engaged such as food allergies ect. I can relate to the sleep problems, its safe to say my daughter has not slept an entire night in her life. She typically wakes up around two or three am and frequently has night terrors. I feel that it is mainly anxiety. My daughter, like your son sounds to be, is a sensory seeker so she is typically bouncing off the walls unless she is ill. We have an indoor swing, an indoor trampoline, different sizes of exercise balls, floor scooters, and a big inflatable lady bug that I got at IKEA (also got our swing at IKEA). I also am in tune with her so I know what type of sensory malfunction is at work and can direct her to the proper regulator. We also use things like water, sand, paint, shaving cream, squishy balls, big pillows, fiddle toys and lights. My 8 year old Aspie's sleep has improved since we have strung LED lights all over his room.
I try to stress to people how important just paying attention to your kids and being aware of their needs are. My daughter can talk but she can not express her feelings and she can not tell us where or when she has pain and does not feel pain the same way most people do. Certain things are very important to her and can throw off her entire day....like not stepping on a certain rock on her way to school. Once you know all these things (sometimes you really have to do your detective work) it easier to head off any crisis that may arise ( meltdowns ect).
Id really encourage you to look into alternative communication methods. PECs worked really well with my daughter, pictures make more sense to her than words. Once our kids can learn ways to communicate their stress and frustration level go down considerably. My daughter used to bash her head into the floor, rip her hair out, and try to claw our faces off. She will only do these types of things now if she is pushed to her breaking point which very rarely happens. She still enjoys deep pressure and likes to head butt as a form of affection.
I hope that you can find ways to assist your son and that you can find some peace of mind. I know its hard when you feel as frustrated as your child. Remember to take time for yourself as well, its hard to be a parent and having a child with special needs is even more difficult.

Last edited by liloleme on 18 Jan 2011, 10:17 am, edited 1 time in total.

As if the bowel movement hurts and he's dreading it? But once it's over, he has some good time?

That could be something as simple as (?) round worms (and the simple things sometimes the high-priced doctors overlook).


Disclaimer: NOT A DOCTOR. But am a pretty good guy

well we Just did a CDSA and no parasites. he did have worms a while ago but we got rid of those.... it is almost like while the "poop" is at the end of the intestines, like it is poisoning him or "juicing" him somehow. it doesnt seem like he is in pain, but more like a toxin is leaching into the body at that point. once the bowel movement is gone, then no problem. Also this is not with every bowel movement. just select ones where he is very very stimmy.

seems weird and have noticed this before

pretty sure this won't help but my stepson kind of glazes over when he needs to go #2. then he starts rocking and twitching his hands around. i never connected it until one day i was getting annoyed at not being able to concentrate on what i was doing because he was sitting next to me rocking away like mad so i asked him what the heck he was doing that for and he said he needed to go #2 but couldn't yet because he had to lock it in. not sure why or what purpose this serves for him. he will stim like mad until he can hardly hold it in anymore then cry and scream and yell about having to go until he finally builds up to going. wish he would just get up and go but for some reason he feels the need to hold it in until he can't anymore and it hurts.