Lost and feeling like I'm losing a battle.

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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amcantrell85
Posts: 1
Joined: Thu May 28, 2015 11:40 pm

Lost and feeling like I'm losing a battle.

Postby amcantrell85 » Fri May 29, 2015 12:16 am

:( I don't know where to begin or even start? I guess I'll just share my story and hopefully I'll get feed back that will be helpful.
I have a 4 year old son who I believe has some type of Autism but his pediatrician keeps making me feel like I'm stupid in questioning everything. I first noticed aggression when my son was 2. He was kicked out of a daycare for tackling other children and then head butting the teacher when she picked him up and tried to restrain him. As he has gotten older the symptoms have gotten worse. He rocks himself sometimes during the day but almost always at night when going to bed. He will rock so hard you can hear his bed shaking against the wall. He is verbal but you can tell he has a speech delay. He also stutters a lot and get very easily upset at himself when he cant get the words out to the point he'll scream, cry or begin to grit his teeth and punch himself in the side of the head or pull hard on his ears. He loves to be affectionate on his own time but does not like to be messed with otherwise. When he is at his new daycare now I usually find him by himself in a corner playing when I pick him up but he'll at least say goodbye and wave to the other kids around him when we leave. His doctors try to tell me he is adhd but I feel there is more to it than that. He has been on everything under the sun. He was first put on Repirdal at 2 which seemed to help at first but his dosage kept having to be increased and he was gaining weight like crazy. Then he was tried on Ritalin which did not work at all. Next was Adderal which made his aggression so bad I felt like I didn't know my little boy anymore. Then came Tennex which he is currently taking twice a day and Clonodine at night to help him sleep. The Tennex seems to barely take an edge off if even that and the clonodine does help him sleep but during the day he has a hard time functioning with just daily tasks. He talks or should I say mumbles to himself but then we'll have a sudden outburst of a high pitched yell or scream then right back to mumbling like nothing happen. I don't know what to do, I'm losing my sanity. Please help with any advice.

Pirsig
Posts: 83
Joined: Tue Mar 31, 2015 10:47 pm

Re: Lost and feeling like I'm losing a battle.

Postby Pirsig » Fri May 29, 2015 8:40 am

amcantrell,

Can I get you interested in reading the information in the link below - its a speech given by Bryan Jepson MD who is a DAN doctor with a son on the spectrum. His story about the experiences with his son is very interesting. Basically, the mainstream psychiatrist told him his son was autistic and there was no hope of improvement with biomedical interventions and he would likely be institutionalized at a later age. His wife was not willing to accept this and when she got to a point where she started questioning vaccines, he was very concerned and started doing his own research to prove her wrong...

http://www.whale.to/vaccines/jepson.html

Two of my favorite parts in that link -

1) "This is the new paradigm in autism: autism is an environmental illness with a genetic component. It’s a complex metabolic disease, not just a developmental disability. It involves multiple body systems that are interacting with each other. Autism is treatable. That’s an important message to hear for those of you who are just starting out, but I think it’s equally important for those of you who’ve been struggling for years and years and still have a long way to go. It’s a marathon, it’s not a sprint. Autism is a very complicated illness. There’s still a lot we don’t know, but our understanding is improving. You’ll hear some parents say that their children virtually recovered after a single intervention. But for most of us, myself included, it’s a long process. It may take 100 interventions, it might take 10 or 15 years, and it will drain your resources and your emotions. But the important thing is to never give up. Our children are trapped in there and we have to fight to get them back out."


2) Here is an emerging model for autism: I call it the multiple-hit hypothesis.

Imagine an embryo with genetically susceptible chromosomes that prevent it from detoxifying normally. The embryo will be exposed to things like mercury from maternal fish consumption and maternal amalgams, mercury from its mother’s flu vaccine and possibly her rhogam shot, antibiotics given to the mother, and other placental toxins that we don’t even know about. Babies need to be able to detoxify almost from conception. Children born between 1991 and 2003 were hit with 25 mcg of ethyl mercury in the hepatitis B shot the day they were born. Some are exposed to antibiotics soon after birth. Babies are exposed to toxins in breast milk. (I certainly don’t mean that you should stop breast-feeding because there are many more benefits than risks, but the reality is that it’s an exposure to toxins. I’m sure that there are toxins in formula as well). All of these exposures start to weaken the immune system of a susceptible child, creating early inflammation. They start to accumulate some of the toxins that they can’t get rid of. Remember that the immune system and the detoxification system really take six months before they start to become mature. As the child gets older, he or she receives many more immunizations. Food antigens are introduced, like casein from cow’s milk. They get repeated viral infections. They develop chronic ear infections and are given multiple courses of antibiotics. The antibiotics damage their gut even more, allowing more toxins to enter their system.

So the child is developing a leaky gut, tissue damage is getting worse, the immune system is growing weaker, and autoimmune reactions are starting. Then a lot of kids experience a catastrophic event. Either in the form of a significant illness or a live virus vaccine. The immune system is overwhelmed and the child rapidly goes downhill. Plenty of parents report a gradual deterioration, but many kids seem to develop autism after a particular event. They go into the hospital or they get an MMR shot and they’re never the same again. But I don’t think that the illness or the shot is the only cause, I think autism is the end result of this developing series of reactions.

Winnie
Posts: 4204
Joined: Sat Mar 18, 2006 2:48 pm

Re: Lost and feeling like I'm losing a battle.

Postby Winnie » Fri May 29, 2015 10:17 am

amcantrell85 wrote::( I don't know where to begin or even start? I guess I'll just share my story and hopefully I'll get feed back that will be helpful.


It sounds like your son has been prescribed a lot of treatments without a lot of in-depth info. :( I think the places to start would be these:

1) An thorough eval by a specialist (perhaps developmental pediatrician) who has experience evaluating and diagnosing autism and other developmental problems in children.

2) Referral to your school district for a full eval -- since he is four, he falls under the realm of services through your school district. You can contact the special ed director (sometimes this is known as the office of Exceptional Education) in your district and refer your child for an eval.

You can usually find info about specialists via a local org (check internet for an autism society in your city or state) and info and contact info about your school district on your district's website. You can also contact your state department of education for info and contacts for your school district.

Let us know how it goes!
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4204
Joined: Sat Mar 18, 2006 2:48 pm

Re: Lost and feeling like I'm losing a battle.

Postby Winnie » Fri May 29, 2015 10:41 am

Pirsig wrote:amcantrell,

Can I get you interested in reading the information in the link below - its a speech given by Bryan Jepson MD who is a DAN doctor with a son on the spectrum. His story about the experiences with his son is very interesting. Basically, the mainstream psychiatrist told him his son was autistic and there was no hope of improvement with biomedical interventions and he would likely be institutionalized at a later age. His wife was not willing to accept this and when she got to a point where she started questioning vaccines, he was very concerned and started doing his own research to prove her wrong...

http://www.whale.to/vaccines/jepson.html
Pirsig, just FYI, whale.to is one of the worst places on the internet to link to or recommend reading -- it is widely known as one of the whackiest quackiest sources of conspiracy information on the internet. Some of the more entertaining selections include those about mind control, the reign of evil, and the Reptilians that are taking over, but the selection on the whale.to home page offers an extensive menu of kookiness.

Inclusion on/endorsement by the whale.to site isn't exactly a good thing. ;)

Perhaps you didn't realize this since you are relatively new to autism, but this is not a credible source of info. It's not even a new source of discredited info. Unfortunately sorting out the credible from the not-at-all credible info on the internet can be tricky sometimes, but this one is easy.

Pirsig wrote:its a speech given by Bryan Jepson MD who is a DAN doctor with a son on the spectrum. His story about the experiences with his son is very interesting.
*ETA, just FYI: Jepson abandoned treating children with autism years ago. He went into integrative sports medicine -- his beliefs about biomedical treatment did not recover his son with autism.

And on that note -- just FYI -- Jacquelyn McCandless did not recover her granddaughter with autism, and neither of Rossignol's sons with autism are "recovered" either. Just including that since many of the books and treatments sold/promoted are focused on "recovery," "reversing autism," etc.
Winnie
"Make it a powerful memory, the happiest you can remember."

dragondad
Posts: 7
Joined: Wed May 06, 2015 4:42 pm

Re: Lost and feeling like I'm losing a battle.

Postby dragondad » Tue Jun 09, 2015 12:31 pm

Hi there! I am sorry for the troubles you are going through right now. We were in a somewhat similar situation when my son was 4. We first noticed something was amiss with our son in preschool. The teachers said he would not sit at the table and do any work, he would run away or lay on the ground. For the Christmas performance all the other 3 and 4 year olds stood up front and sang and rang bells. My son ran around the room waving at all the parents and would not stand with the others. This did not get better, it got worse. I was probably in denial because the classic signs of Autism were not there.

My son's difficulties are primarily behavioral. He is generally a happy child, is verbal, will talk (though we came to learn he was limited in reciprocal conversation) but when confronted with a task he doesn't want to do he will do whatever he can to avoid it including tantrum or running away. This cannot be disciplined in the normal sense. He has to be strongly and consistently reinforced to do non-preferred activities (something we are constantly battling with the school) At the same time he is attention seeking and will do stuff to get attention good or bad(screaming at people or smack people because it gets a reaction). Throw in a little oppositional defiance disorder (tell him to stop doing something will result in that action being repeated over and over and over). So I can relate to some of what you are experiencing.

At 4 your son is still at the early age and the best time to act is NOW. I REPEAT, ACT NOW!! This is the BEST TIME to begin intervention and will give your son the best chance at dealing with his disability throughout the rest of his life!


There are a few things you should do.

1. Locate your state's Regional Center and start the process for an official diagnosis. They are run by the county. Google "Regional Center of (county,state)" For example my regional center is "North Los Angeles County" Tell them you think your son is autistic and want him evaluated. They will do a series of surveys questionnaires and cognitive tests. This is how you get the only "Official" diagnosis. The pediatrician is not qualified to make a diagnosis. You will have to push HARD to get things done in a timely manner, BE THE SQUEEKY WHEEL. If you wait for them to call back to make appointments and such you will wait a long time. Most Regional Centers are have huge case loads and you have to keep putting yourself in the mind of your assigned person, even if it is just a phone call asking "hey just wondering if my paperwork has been processed yet." Even with pushing hard, the process took about a year for us.

2. In parallel with the effort with the state, do what Winnie suggests and contact your school district's special education office. The school will do it's own set of evaluations to determine what services / placement your child may need. Do this NOW so things are in place when your child starts kindergarten.

NOTE: The above efforts are SEPARATE and PARALLEL and serve different functions. The effort with the regional center is the "Official" diagnosis. This will determine if you need services outside the school environment (such as behavioral support, life skills support, etc) The effort with the school will determine what accommodations and services he will be needed to succeed in school, such as speech therapy, occupational therapy, adaptive PE, etc. Note the school district evaluation will NOT be an official diagnosis. They will say "Autism Like" or "ADHD Like", they are not qualified to officially diagnose.

3. Spend some serious time with your child's doctors. A mother's intuition is more often right than not. I completely agree that what you are experiencing is NOT simply classic ADHD (the rocking is a self stimulatory behavior and a hallmark of Autism, my son looks at lights fences and power lines to self stimulate). Tell them you are working through the regional center for an official diagnosis, and discuss with them the possible treatment. Realize that the doctors are NOT qualified to diagnose ADHD, Autism, PDDNOS, etc. They can make an educated guess, but really should not be prescribing medications and treatment plan without more information. If your child's doctors will not listen to you, answer your questions to the best of their ability, or get annoyed with you or blow you off, GET ANOTHER DR.

4. Seriously consider the medications your child is on, it sounds like your doctors have been taking shots in the dark without really knowing what is going on. Evaluate if the medication is having a positive effect and if the result is worth the trade off. Even the time of when your child takes the medication can make a difference. Also is your son taking any regular medicine for allergies or asthma? These can have significant side effects. All 3 of my kids are sensitive to antihistamines. Claritin and Singular made them go bonkers. My sweet polite angel oldest daughter became moody and belligerent and her grades took a nosedive. It took A MONTH to return to normal. Benadryl is a last resort if someone is dying. Allegra is the only one that seems to work at all for us without bad side effects. My son is also on Qvar for his asthma. Too much of it makes him more aggressive, so balancing the dose can be difficult.

My son is on the generic for Intuniv, it helps him focus and attend to task better than without, but it sometimes makes him tired in the afternoon. So we try to focus on academics before lunch and other activities like PE in the afternoon to keep him moving. It also helps him go to bed better. Most importantly it DOES NOT change his personality, I would never continue with something if it altered who he is

Whatever you do, start taking action. These processes take time even with pushing, and you son is at the best age to start intervention. I hope this has been of help. I live in California so I am more familiar with our processes and resources, but most every state should have something similar in order to comply with the federal IDEA law.

No matter how prepared you are it will be hard. No one want's to here that their child is "not normal" You may experience denial, and even grieving (I did) for the hopes and dreams you had for him that may never be realized. These are normal thoughts and feelings, do not feel like a bad person if you have them. I had to come to the understanding with myself that if my son was "normal" he likely would not be the person I know as my son, and many of the little things that I love and make him who he is would likely not be there. That doesn't mean I don't wish his autism would go away while he is in the middle of a melt down. But I celebrate his accomplishments because they are hard for him, and I try to engage with him in his interests (he has a extensive collection of Lego Mixels we have built, and rebuilt, and rebuilt).

Good luck!

Daniel

Mihael
Posts: 3
Joined: Sun Jul 19, 2015 1:19 pm

Re: Lost and feeling like I'm losing a battle.

Postby Mihael » Sun Jul 19, 2015 2:43 pm

amcantrell85 wrote::( I don't know where to begin or even start? I guess I'll just share my story and hopefully I'll get feed back that will be helpful.
I have a 4 year old son who I believe has some type of Autism but his pediatrician keeps making me feel like I'm stupid in questioning everything. I first noticed aggression when my son was 2. He was kicked out of a daycare for tackling other children and then head butting the teacher when she picked him up and tried to restrain him. As he has gotten older the symptoms have gotten worse. He rocks himself sometimes during the day but almost always at night when going to bed. He will rock so hard you can hear his bed shaking against the wall. He is verbal but you can tell he has a speech delay. He also stutters a lot and get very easily upset at himself when he cant get the words out to the point he'll scream, cry or begin to grit his teeth and punch himself in the side of the head or pull hard on his ears. He loves to be affectionate on his own time but does not like to be messed with otherwise. When he is at his new daycare now I usually find him by himself in a corner playing when I pick him up but he'll at least say goodbye and wave to the other kids around him when we leave. His doctors try to tell me he is adhd but I feel there is more to it than that. He has been on everything under the sun. He was first put on Repirdal at 2 which seemed to help at first but his dosage kept having to be increased and he was gaining weight like crazy. Then he was tried on Ritalin which did not work at all. Next was Adderal which made his aggression so bad I felt like I didn't know my little boy anymore. Then came Tennex which he is currently taking twice a day and Clonodine at night to help him sleep. The Tennex seems to barely take an edge off if even that and the clonodine does help him sleep but during the day he has a hard time functioning with just daily tasks. He talks or should I say mumbles to himself but then we'll have a sudden outburst of a high pitched yell or scream then right back to mumbling like nothing happen. I don't know what to do, I'm losing my sanity. Please help with any advice.


Hi.I just wanna say i am new here (joined today) and am NOT an expert in anything,also have autism myself,however i would like to give my opinion,i figure it can't hurt.First of all,it sounds to me like your son needs speech therapy and needs regular visits to a child psychologist (although i figure he already done all that).But i think he is on TOO MUCH medications for his age,he is only 4 and been on so much of that,that can't be healthy.Also seems like if he was somewhere on the spectrum he'd already be diagnosed,and his symptoms indeed seem to me more like adhd (although i will repeat,i am not an expert,just my opinion).But since you are worried have you taken him to some ASD expert for evaluation? Also what did specialists say about him hurting himself? Of all that you written,that caught my attention mostly,and although it might just be adhd,this can also be a symptom of ASD...Btw,i would advise you to get another opinion on him taking Tenex,it just doesn't seem like a good thing to give such a young kid,especially since you said it doesn't help him much anyway..


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