concerned with lack of medical/school help concern..ideas?

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Hello, I am new here, yet so thankful to have found this site. My problem is not a new one, but it is frustrating all the same.
My son (We will call him 'T.') who is 9 was diagnosed with ADD/ADHD at age 6 while in the 1st grade.. this was a long time in the works with much stalling from me. The usual issues were present. T. was disruptive, prone to emotional outbursts and acts of violence. He had no attention span (unless a video game or computer was involved) and was unable to sit still for more than a few moments at best. For years I tried to assuage my own fears by attributing his behaviors to being a 'boy' and the like...but after daily visits to the principal's office, phone calls and notes home, 3 In School Suspensions one Out of School Suspension and threatened police action after he threw rocks at a fellow classmate for wearing the wrong hat to recess, I knew there was more.
At first the doctors, teachers and counselors seems helpful and excited to see T. do better. We attempted medication the winter of 2008 with amazing results.. his teacher was amazed and daily visits/phone calls from the school ceased. But all good things must end and we were suddenly upping doses and changing medications.. each new medication giving even less than the last..his phsyciatrist no longer seems to listen or even look at his chart when I raise an issue or question a new medication. When T. went 2 years with out gaining an ounce or growing an inch I was told not to worry, he would catch up. Today he is frequently mistaken for my 5y/o son's twin.
At our last doctor's visit we had yet another med. change...suddenly with no precursors my son is now ADHD/Bi Polar... and taking an anti psychotic..
I have spent the last 3 years trying to get someone, anyone to see the light.
Yes. I belive that T. displays some ADD/ADHD attributes.. but there are many symptoms that do not fit that diagnosis..(hand flapping, toe walking, inability to make eye contact sand lack of social cuing are at the top of the list but by no means the whole of it) yes stimulants worked for a time... but now nothing does.
I'm at a loss, his teacher's are giving up, his doctor's have checked out and seem to have no desire to help anymore. I search daily for new doctors, but pediatric psychologists in this area are few and far between..at this point I'm game for any and all ideas and input becasuse I'm not really getting anything from the 'support team' here.

I apologize for such a long post, but it's all just so overwhelming. Thank you in advance for taking the time to read this and I hope reply [quote][/quote]

Hi monkymomma

Tbh I really don't have any advice I can give you, but didn't want to read and run Would it be at all possible to seek a second opinion from a different doctor? chopping and changing medication like that must surely be wrong and perhaps contributing to his difficulties! I know it must be different in the US to the UK, as it's private health insurance over there, so perhaps it might be difficult to do, but it really sounds as if this psychiatrist has no idea and is just throwing ideas and meds out there to see what works.

My daughter does a lot of the things you describe and she is Aspergers/Dyspraxic/ADHD. SHe is not on meds currently, we are trying different therapies with her and anger management etc, however that may change as she approaches her teen years. Really hope you manage to find some answers

_________________
Women and cats rule the world, men and dogs should just relax and get used to the idea

I am certainly no professional, but some of the symptoms you describe (toe walking, lack of eye contact) sound very much like Asperger's. From what I have read, many children with AS, have symptoms that look like ADHD, but it is for different reasons. Therefore, the meds do not always work.

Hopefully, a parent with more experience in this will post. My son is only 5 and diagnosed on the autism spectrum. He definitely has difficulty focusing on his work, but we have not tried medications yet.

I AM NOT A DOCTOR:

I am the mom of a 5yr old w/AS. He also has what others (especially in schools) would describe as ADHD, UNLESS they knew all the rest of his symptoms.

If I were you I'd seek a 2nd opinion from a child psychologist well-versed in Autism Spectrum Disorder or Asperger's Syndrome. I would print out a list of all of the symptoms you notice (including those you mentioned here) and how/when/how often you notice them.

I don't know where you reside, but I'd type in the major city near you along with Asperger's psychologist or Asperger's Therapist.

We were blessed to find an exceptional therapist in our locale. He has a master's in social work besides being a family/marriage therapist. He KNEW our son was an Aspie in the first few minutes of first meeting. (he did not tell me this until later ) He also knew that we needed a diagnosis FAST so our son could be enrolled onto therapy waiting lists in our area. He was able to give us a referral to a local psychologist...luckily she had an opening (she tends to have a long waiting list, too--she mainly works with Asperger's and Schizophrenia patients). She has since diagnosed both my son & my husband.

The one thing that REALLY stood out from what you wrote:

It certainly sounds like the doctors are missing the mark completely. From what I have read from other posters here, it wouldn't be the first time. It seems unbelievable to me with all the news and statistics about the rise in rates of diagnosis or autism/asperger's that any health professional who purports to specialize in treating children could be so uninformed. I thought doctors like tearchers and lawyers were required to get "contiuing education". New information about health issues didn't stop developing when these people graduated from med school - how can they allow themselves to get so far behind?!

I hope that you can find other health professionals who can really help your son. It does not sound like you are getting good advice from the ones currently invloved in your son's care. Try not to be intimidated when you don't agree with the docs. They may have the fancy degrees on the wall but you know your child!

Welcome monkymomma!

I'm glad you found a place to reach out. Hopefully everyone here can guide you to some answers and hopefully some piece of mind.

I, also, am not a doctor but from what you describe Asperger's is a possiblity. My daughter was just diagnosed at 8yo. Among other things she is also ADD and medicated for it. The two conditions are commonly found together. It definitely sounds like you need to find a doctor with a specialty in autism/asperger's. I finally got my daughter to a developmental pediatrican for her dx. Everyone else we had seen was guessing, in my opinion.

Are you in the US? You didn't mention if your son has an IEP so I'm not sure. If you are in the US and he does NOT have an IEP write a request for evaluation and hand deliver it to your son's school today!

It sounds like your little man has many things going on. Like any service professional, doctors just provide a service. Not all of them graduate top of their class, not all of them are empathic, caring and concerned and none of them are experienced in EVERYTHING that could possibly be going on. I'm actually a bit surprised his doctor didn't recommend another doctor when his own knowledge and interventions hit the wall. Don't be afraid to fire him and find someone else.

Keep searching - you'll find your answers and the help your son needs! And everyone here will, mostly likely, be glad to offer you all the support we can along the way.

Medications have only been researched to a real degree over a matter of weeks. The better research on ADHD is now showing that while medications help initially they do not help longer term and the longer the child is kept on them the worse they often become. When compared to those that were not medicated, at 3 months post diagnosis the medicated kids were thriving, others the same, at 6 months the medicated ones were still doing well but not as well and the non medicated ones were gaining ground. At 12 months the non medicated were doing much better and the medicated were beginning to decline, by 18 months the medcated ones were worse than before they were diagnosed and the non medicated ones were becoming more and more normal by the day.

Before stimulants were used in children, Biploar had NEVER been seen in a child, and in fact the youngest age ever recorded was 14, as the use of stimulants increase so does the diagnosis of Bipolar, infact over 90% of children diagnosed with bipolar were on stimulants before diagnosis and all were on some form of psychotropic drug. How can all the mental health clinicians be diagnosing these chidren so badly as to miss the condition they do have, or is the medication actually playing a role in this rise in diagnosis.

Anatomy of an Epidemic by Robert Whitaker is about the best you will get at trying to unravel the picture.

There is no doubt that SOME people, and good research shows about 20% of people do gain from long term medication usage in small doses, but the vast majority do not, and they are not offered any help at all. The other reality is that common sense should say that in young children at least we should be doing all that is possible to not medicate, trying all other options first, but parents are rarely given any other options or choices and in the US at least, insurance companies often will not fund anything else.

I am not opposed to psychotropic medications and am infact on some myself, but it is an informed choice I have made as an adult, after decades of other things have failed, and I am on very small doses, while still doing many many other things to maintain my quality of life, using psychologists, occupational therapists, etc, etc.

I agree that it very much appears to be autism, and you also need to consider why he is able to concentrate on some things and not others. The only person I have ever seen who I felt really had ADHD was not able to concentrate on anything at all. If ADHD is a biological condition then he would not be concentrating on anything at all, as he would not be able to. It appears to me that he is able to make choices to some degree about what to concentrate on, it is not as though he cannot do it, just that given the circumstances and enviornment that he finds himself him he is not able to do so. And Autism is so often like that, the sensory overload can be so extreme that you cannot do what needs to be done in a said environment, because you just cannot cope. It is like he cannot cope with human interaction, it is non human interaction that he is focussing on and that is very common of Autism.

Then he was concerned about the wrong hat. To me that is also autistic, not coping with things that are not black and white, feeling the need to fix the situation, etc and not having a way of doing so. Many people on the spectrum also struggle with speech and so hitting or hurting someone is much much eaiser than telling them what is happneing, even if they can do it. I can and do speak, and to the average person you would know I was autistic, but I hate speaking and do all I can to communicate non verbally, as it is just so uncomfortable for me, not physically painful, just uncomfortable.

It is much easier to simply blame his condition than to admit that they were wrong and that is the worst part of most medical professionals, that they will not think outside the box, will not consider anything else, and if something goes wrong its the condition and not the treatment failing or the wrong diagnosis.

I agree the best thing to do is to try to find support from autism specialised psychologists, and non medication obsessed psychiatrists if you can find one!! !

Is it possible to go and see someone knew without telling them anything at all about what is current diagnosis is? I know that is difficult, but to me you need someone who is willing to give a fresh perspective and not just take what has already been said. Psychaitric diagnosis is an art, not a science. How often in court cases do you hear two equally eminent psychiatrists saying the absolute opposite thing!! Reseach has shown that if you put 10 psychiatrists in a room to all assess the same person at the same time and then take them out and get them to write down individually what they think they have, if anything you will rarely if ever get half of them agreeing on the same thing and the differences can be so extreme it is beyond belief.

What you know at present is that what is being given as treatments at the moment are not working. Perhaps that means the treatments are wrong, or perhaps, and I suspect more than likely that the diagnosis is wrong.

Being in another country I cannot give advice about the best places to go for advice and support in the US, In Australia we have major Autism Associations in every state that are brillant places of referral, advice, support, treatment options, etc, etc. In the UK the National Autism Society fills this void. I have not heard anyone give any really big views of anything in the US, other than being agains Autism Speaks, because they want to take away our unique characterisistics, tell us that we are defective humans and the like. No you cannot cure autism, but you can make it easier to live with in a strange and confusing society.

What I can say is that I would be looking for help and advice in a totally different area to what you are currently looking in, as they will not be willing to consider that what they have said is worng, is not working, etc, and it is much easier to medicate someone to oblivion than to actually take the time to consider the real problems.

Good Luck, I really admire the attempts that you are making at trying to help your son and to actually question what is being said about him, his diagnosis, treatment, etc.