Seeking Advice on Child Diagnosed with ADHD,ODD & PDD NOS

I have found this site invaluable:

http://millermom.proboards.com

It is run by moms who are incredibly knowledgeable and drug averse. They all have kids with some sort of diagnosis and between them and their active posters, they've seen and tried everything. No one is selling anything. Lots of information on alternatives etc. You can ask questions or read up on already asked questions. Really great site.

Hi, absolutely NOT put him on medications until you have had MANY research on the subject. visit other Drs. if the " problem" is socially/emotinally then why medication? I have the same problem but my is academically not socially. My son is almost 13 and we just had him tested with a great therapist (if you want the name write me back) we are waiting for the results. I will consider meds ONLY if she tells me it would holp otherwise I will found another solution. don't jump into that wagon yet look for other solutions, by the way i also started given my boy the omega 3. good luck

Writing this as a teacher and mommy - ADHD behaviors can be very annoying in the classroom BUT if his academic progress has not been impacted by this, then it is not (or is not yet) a "disability" requiring medication. I work with some children who show some symptoms of a learning disability, but because of appropriate academic intervention, it is not affecting their classroom performance - therefore they are not "learning disabled." Beyond symptoms, the problem must negatively affect their academic progress to be a "disability." So I would say do not Medicare at this time and try to adddress his other social/emotion needs and the issues presented by his other conditions at this time. Be ready to consider meds if his academics begin to be affected. It is horrible how quickly people suggest meds, but it can be equally horrible how long some parents allow their child to not learn before they are willing to try meds for obvious attention problems.

My son was older than yours (9 years old) when he was diagnosed with ADHD. The school said they did tests and suggested his doctor put him on Ritalin. I knew he had some behavior problems but didn't like the idea of drugging him. So after talking to his doctor he decided to do a "blind study". He was put on "meds" for 2 months. But one of the months was a placebo and the other month was the actual meds. Only the doctor knew which month was the real meds and which month was not. Both me and his teacher had to fill out questionnaires each week and the doctor compared them. Even though I didn't see any difference in his behavior, the teacher said she did, so in the end the doctor decided he needed the meds. After a couple months of taking the meds he didn't seem any different to me but his teachers said there was a big difference. After a few more months of this I had to take him off the meds for a month because we just could not afford them. No one noticed! So I decided to do my own "blind study". The following month I didn't put him back on the meds. Still, no one noticed. So I never put him back on them. This went on for several years with no meds and no one seemed to notice he was not taking them. In fact, every year at conference time the teachers would say the same thing. "He is so much better with the meds.". I never said anything till he was ready to go into high school. My son, the school counselors and I were setting up a plan for his classes when the counselor said he would only be able to take certain classes if he stayed on his meds because without them his behavior would interfere with his work and the other kids in the class. When I finally told them that he was not on them, they were shocked and didn't know what to say. One teacher said that maybe he was "just going thru a phase when he was first tested".

My point here is, trust your own instincts. You know your son better than any teacher will ever know him, no matter how much she sees him. If you don't want him on meds, then don't do it.

Hey C.,

I get so upset when children are labeled especially after someone who is supposed to be a professional has given such a short period of time to give such a lengthy diagnosis. I own a preschool and I have a full-day kindergarten class with 11 boys and 3 girls. For the majority of my day at least 6 of the same boys are in my office in some type of trouble. So I decided to sit in on the class a few times to observe. Unfortunately, kindergarten for some children especially boys can be a challenge. Not always because of the academics simply because they just can't sit that long and just purely are not interested in learning. I own a Montessori School and although we do traditional learning as well as Montessori what I observed was so enlightening to me. When these same 6 repeat offenders were engaged in a Montessori activity there was not one problem. When they were doing their seat work it was one issue after another. Who couldn't sit still, who was touching the child next to him, who was falling off their chair. I was astonished at what I saw. I am not trying to push Montessori I am simply saying that some children are physical learners. They learn best when they are doing something hands on. Also, most of the boys in this class are very young five year olds who just made the public school cut-off date. I guess my question is did he always have problems in school, like preschool, or is it just in kindergarten? Is he a young 5 year old? My other comment is if I looked up the symptoms of ADHD, ODD, PDD NOS I could probably recommend half of my kindergarten class be put on meds. I am very old school and I absolutely hate when children are pushed. It seems that we have become a society about forcing education on children and not recognizing their basic needs. To play, to learn through play, to run, climb, and just interact with their peers. How can a child become social when they are forced to sit and do flash cards at 2? When I do a tour at my school I hear parents say what is your curriculum. I will tell them that my main focus is having their children have fun, learn to love school, learn to follow the rules, sing, dance etc. Of course they learn their colors, shapes, ABC's but social skills are just as important. I have early intervention coming into evaluate because a child who just turned two isn't speaking enough. Children who do not like mushy foods have texture issues etc. etc. etc. When I grew up a child who couldn't sit still was just active, today it is a whole different ballgame. I have truly seen very few true cases of ADHD, ODD, & PDD NOS, and then I have seen children who are labeled because they just can't conform to what we think children should be doing at age 5. When I was little we napped in a half day kindergarten program, when my kids who are now 24 & 20 were in kindergarten the mostly played. My kindergarten class is beginning to read, doing fractions, etc. I think some kids can do it and some kids just can't. But yet we label then as something wrong because they can't sit still, or simply do not have the interest to learn so they act out. Please take your son to a neurologist for a proper diagnosis. If you have to go to many different doctors to get your son help then do it. Only you know your son, so listen to your gut. In my opinion you do not sound convinced that your son has all of these issues. Yes as an educator we can contribute information but that does not mean we can diagnosis. Have you considered seeing a behaviorist?. They can perhaps show you ways, and give you help on how to deal with the tantrums etc. If your son does in fact have all of the above mentioned issues then as his mom deal with them in a way that you are comfortable with. Some children do need medication it truly is the only way they can function in school, however that does not mean your child is one of them. One other suggestion is a nutritionist. I am not implying that you do not feed your son healthy, but I have read and seen the effects that foods (especially if someone is allergic) can effect behavior. Good luck!!

Hello C.,
I have an 11 year old son who has ADD/ADHD and his issues were also more social. I invite you to visit my website and read my blog where I talk about his journey.
My son has been taking EmPower plus since February of this year and the results have been tremendous. You can email me directly to chat more if you like.
My website is www.fezalnaturally.net and you can click on the blog tab and the EmPower plus tab to read more.
my email is ____@____.com.
Regards,
D.

It always irks me that therapists will reccommend the use of drugs after spending so little time with their patients especially since they can't prescribe anything. You mentioned that you had seen a therapist but for yours and your child's sake, I would get the opinion of a pediatric neurologist. These are the types of doctors that can truly tell as ADHD is often misdiagnosed as well as the other disorders you mentioned. When and if you go, remember to make note of your son's diet as that can play a big part. Good Luck to you.

Hi There,
I am an Occupational Therapist who has worked with many children who have a diagnosis of PDD NOS. Many children with PDD have Sensory Integration Dysfunction which can lead to a variety of behaviors. Does your son get speech therapy or Occupational Therapy? If his behaviors are partially a result of Sensory Integration issues, an Occupational Therapist may be able to help intervene and help find ways to deal with his tantrums and behaviors (other than medications). It can be really frustrating to have somebody see your child for just a few minutes and act like they know enough about the child to go right ahead and medicate him without trying to deal with the issues in other ways first or in conjunction with meds... I don't know your child, so it is hard to say what his needs are, but an OT eval might help get more answers/options.

Follow your Gut instincts. Seek Second Opinions (Professional) few of them for you to be sure so you can help your child. Nothing wrong with seeking second professional Opinions, if you are not convinced.
Do keep a diary of every little thing of your child. Food, Behaviour, Sleep, everything. Take into factor everything you can. Like Is he not comfortable with his peers, Is he singled out? Is he younger than his fellow friends/classmates -- behaviour patterns etc etc. This will help you better and you can let the Professionals know better, if you are not doing this already.

My best advice is to immediately go to one of the big hospitals with your son. You are looking for childrens hospital or johns hopkins ect. Each of these centers have autism and related disorder clinics. You need to have a full team evaluation where a expert from neurology, physchology, educational assessments, speech and language evaluations, ect. Trust me as the mother of three grown sons with varying disabilities in the autism spectrum. If you don't do this, you will regret it later on. It is imperative you surround yourself with the best minds and ideas in order to help your son reach his full potential down the road. Good luck.

Hi C.,
Please try to have your son evaluated by a pediatric neurologist- that is the person who is qualified to tell you if your son needs medication. No one else. And the lists are fine for finding general areas of need, but are not designed to be specific enough to prescribe medications.
Second, and you can do this at the same time, find an OT qualified in working with children with sensory integration disorder. My son is challenged by this, though at first we thought he might have ADD. The work he has done and continues to do with an OT, work on expanding the brain's neuropathways, has been truely remarkable!
This is all through physical work, not medications. And the result is quite remarkable if you keep up with the home exercise diet the OT prescribes. Insurance can pay for this you have to get teh right diagnosis.
In the end if he is challenged by ADHD, then prescription meds may be the only way to help his brain achieve the focus it needs to maintain the social/emotional balance. But is he 5, so it is still very early.
I would recommend you look into the sensory integration disorder- read THE OUT of SYNC CHILD.

Good Luck!
M.

Dear C.,

even if the final diagnosis that you get is Asperger's, you will still find a lot of doctor's pushing you to put him on meds. I definetly share your doubts about the right diagnosis and how it was obtained. But, from experience, I can tell you that although right now getting the right diagnosis seems paramount to you, you might find that looking back (like I did), it really is not that important. Because no matter what the diagnosis is, the therapies are very similar. I think putting him on supplements is an important first step, there are many more supplements and interventions (non-meds) out there that can help your son. I would also recommend reading a book by Dr. Kenneth Bock "Healing the new childhood Epidemics: ADHD, Autism, ...".
Also, signing up your son for a "social skills group" with kids at the same developmental age would definetly help your son with his social and emotional issues. My son also benefits from Video modeling, for the tantrums and social issues I can highly recommend the Teach2Talk series with the Social Skills Series, especially "Behaviors" and "Conversation with Friends".
If you have any more questions, do not hesitate to contact me.
All the best,
A.

I am a former teacher and have taught many children with similar diagnosis. PDD often comes with symptoms that present themselves as ADHD. Hyperactivity and frequent tantrums all could be symptoms of PDD as well as ADHD. Have you and/or your sons teacher tried giving him a schedule of his daily events to be able to follow. I have found that if a child with PDD knows what to expect it helps with transitioning and eliminates many of the tantrums. In the past I have used a laminated manilla envelope and a velcro strip down the middle. I made up pictures showing daily activities such as brushing teeth, eating dinner etc. After each of these activities are finished you remove it and they are able to see what comes next etc.

Another option is to have a sensory evaluation. Some kids present as having ADHD when it is actually a sensory issue. In this case adding physical stimulation to his day may do the trick. Does he seem calmer after running, jumping, swinging etc?

You are doing a great thing for your child by researching your options instead of just medicating him. Good Luck!

I just wanted to second the recommendation that you get a comprehensive (neuropsychological) evaluation for your child, which would be done by a child (neuro)psychologist. These types of disorders often co-exist, but checklists are not an adequate way to evaluate them -- especially if there is a question about medication. You may need to do some research and networking to find someone qualified to do this kind of recommendation... try to find someone who is independent or part of a large university/hospital, but not necessarily an "ADHD Center" where that's their primary focus. Most child neuropsychologists should be qualified to assess for ADHD and other behavior disorders. If the comprehensive assessment yields the same results, then your next step should be to find a CHILD psychiatrist (not your pediatrician and not an adult psychiatrist) to consult with about possible medication use. Good luck.

Hi C.,

I am not a doctor but i will tell you that as a mother dealing with similar concerns i've been advised to read 2 books which i have found incredibly helpful for those of us believing there is another "solution" other than a treatment of drugs or stimulants for ADHD: One is called "The Way of Boys", by Anthony Rao, PhD., the other is called "Raising a Sensory Smart Child", by Lindsey Beil, M.A./OTR/L, and Nancy Paske, which deals with PPD as it may or may not relate to other diagnosis.

Both have been incredibly informative are providing me with alternatives and as well as peace of mind.

all the best to you on this journey with your son.

Couple of things... what your son is experiencing is something called "co-morbidity" which means that there are multiple conditions occuring at the same time. In your son's case there must be some pretty severe behaviors going on for these diagnoses to be applied. My guess is that both you and the teacher would describe him as being somewhat out-of-control, right? The checklists are valid and accurate and you both must have provided similar responses meaning that these behaviors occur in school and at home.

Here's the deal- if your son is demonstrating behaviors severe enough to require therapeutic intervention in Kindergarten then he will be unable to learn new behavioral patterns without the ability to control his emotional responses. You have every right to elect not to medicate your child, but would you deny him insulin if he were a diabetic? Your son is no better equipped to handle his emotions than a diabetic is able to regulate their sugar. Both are synthetic and are medications.

I'm not an advocate of medicating for the sake of it, but your son is in trouble and he is going to find himself in big trouble in school and, when he is older, with the law if he doesn't learn how to cope and manage himself. This is what I do for a living and I have seen kids go from being "difficult" at 5 to juvenile centers at 14. It's not fun.

Take him to a peds neurologist and let them test your son. After that, get a second opinion!!!! Sometimes, a child's ADD/ADHD diagnosis is because of behavioral problems, not neurological. If some type of stressor is going on in the home, this could be the cause of your son't symptoms. Don't just take what one person tells you; just because he spent 10-15 minutes with your child. If it is behavioral, get him play therapy. Good luck!!!

Look at this website and call for an appt...
www.drodesky.com

I am not sure where you are located but a colleague of mine here at the NYU Child Study Center in Manhattan is conducting a research study of young children with PDD. The study includes a comprehensive evaluation that should provide some answers to your questions about your son's diagnosis. The evaluation includes a thorough interview of you and an assessment of your son (so much more than just a teacher questionnaire). If you are interested,you can contact Ariel Schvartz at ###-###-####.
Good luck!
A. K. Roy, Ph.D.
Assistant Professor of Child and Adolescent Psychiatry
NYU Child Study Center

I work in the mental health field...mostly with adults but I used to work with kids. In order to properly diagnose anyone...ESPECIALLY a child....a thorough examination and thorough testing must be completed. 30 minutes from a therapist is nothing. He needs to be seen by both a pediatric neurologist and a child pyschologist in order to come up with a proper diagnosis. For a child this young that is a lot of diagnoses to throw at him....and you. Very unfair. The treatment he receives will be based on his diagnosis and will only be appropriate treatment when the diagnosis is made appropri8ately. Best of luck to you...hang in there and keep your head up!

Hi C.,
I am an SLP working at a new center in Darien. We have specialists in ADHD, ODD and we have an autism team. Feel free to give us a call at ###-###-#### or check out our website at www.southfieldcenter.com.
A.

I took my daughter to see a neurologist last year and he said the only reason he didn't diagnose her with ADD is because she was only 4 at the time. She is nowdue for her follow up and I don't want to take her because I don't agree with putting her on mess that trigger other things. I did find a supplement online called Attend that has been very helpful and it is designed especially for ADD and is all natural with no side effects. Even if your child is not true ADHD the supplement won't hurt them. My child was diagnosed with RAD at the age of 3 and we have been in therapy with her since with phenominal results and no meds. You are correct in thinking that other behaviors can appear ADHD but follow what your gut says. Mothers are always on target when it comes to their kids.
Good luck.

Don't know where you live but there is a reknowned doctor who is nationally consulted by parents of kids w/ same diagnoses who is in Rhinebeck or Red Hook, NY; near Poughkeepsie. Your son is so young and there may be other alternatives you could consider before going w/ psychopharmaceutical medications which have another concern altogether.
THe Dr. and a book he has written is: Healing the New Childhood Epidemics: Autism, Allergies, Asthma & ADHD; by Kenneth Bock.
It does address dietary nutritional changes which do impact how much exacerbation of symptoms are manifested but as well the medication & other ways to address it.
It's worth exploring!

I used to work for holistic MD with a private practice. I would suggest getting tested for allergies using a device like EAV (Electroacupunture According to Voll) rather than scratch tests. There are many sensitivities that won't show up in those but that can be affecting the brain. She also did light therapy and it's possible to see a difference immediately in many people with ADD. I would NEVER, EVER drug a child.

When testing with something like EAV you can also see nutritional deficiencies, blockages in meridians, etc. This will save you years of guesswork. Homeopathy, detoxification, diet and correct supplementation can work wonders. Magnets have worked in a small informal study (can email you that if you like--just message me your email and ask). You might also want to read The Mood Cure by Julia Ross which will show how to get rid of ADD but I still would get the testing done.

I didn't read the comments so maybe this has been said already but sugar, MSG, artificial colors and sweeteners can all adversely affect the brain. So can chemicals in the home and environment. Go green with cleaners and personal care products. Get rid of drier sheets, air fresheners, etc.

Hi C.:

Since you are of a holistic approach, it may be best to consult with such a practitioner. If it is ADHD, there are many natural therapy modalities to assist, your options are wide open. A dietary assessment may be a good place to start. My office is available to assist you and your son via a consultation. Visit site at www.wholecreations.com/wombfull.html and call ###-###-#### to discuss further and set up an appointment.

My best,
N.
Holistic Healthcare Provider

I find it hard to believe that a "sweet, loving, bright" 5 year old was diagnosed with ODD. Most 5 year old boys are hyperactive and the PDD NOS means the therapist was trying to earn his money. "Mom, something's wrong with your son, but I have no idea what"
Why did you get him diagnosed to begin with? Are you concerned he has no friends? If he is doing well in school, why try to change him? Does he have tantrums? That MIGHT be because he is frustrated at not learning fast enough for him. Perhaps he is being pushed too hard.
I am 68 years old and alarmed at the labels being pushed onto our little ones these days. If a kid doesnt fit the "perfect" mold, lets stick some letters on him and give him meds and change him to fit. mmm I wonder what label they would have stuck on Einstein, Edison or Bill Gates to name a few. I bet Stephen King would be labeled real quick too.
My advice is relax and enjoy your baby.