Pervasive Developmental Disorder & ADHD

kidshealth is a good website and just doing a google search of the two together will get some good listings. My son has down syndrome, autistic like tendencies, and now bipolar. At first we were diagnosed with ADHD (for 6yrs!!, he is 8 1/2 now) and it really wasn't but with the special needs kids it is harder. For my son it was because he is also nonverbal so I don't know what is going on in his head, or how he feels, when his behavior gets bad then I know that something is wrong. Good luck!

Hi M.:

I am writing to you as a occupational therapist who has worked with children like your son for many years. Although I can't give you insight from a parent's point of view, I can say that the earlier the better for special education/intervention. Not knowing your son, I don't know about his strengths and areas of need but I'd be happy to guide you in the right direction if you would like to chat.

Here are a few people who work with children with PDD NOS:
Many children benefit from chiropractic care as they work on diet & or allergies that can sometimes play a large part in a child's behaviors. Speech Pathologist can work on language (developing or enhancing one's comprehension, social skills, reception & pragmatics to name a few) An occupational therapist can focus on sensory integration (how your child interprets and responds to his senses (touch, taste, movement, body awareness and so on); as well as self care (getting dressed, brushing his teeth), play, fine & gross motor skills.

Many children receive services at an outpatient clinic or at their community school. Two great places to check out for support groups, educational seminars and much more information are The Minnesota Autism Center http://www.mnautism.org/ and Pacer Center http://www.pacer.org/

Therapy for Me in Eden Prairie is a fantastic clinic that has speech and occupational therapy services as well as a specialist working on RDI. http://www.therapyforme.net/

As I mentioned, I would be happy to chat with you more as I know there is a lot of information to take in.

Good luck. There are a lot of therapies, some that work fantastic and others that work for a select group of kids. I do believe that diet plays a very strong part of his diagnosis. In my opinion, I would look into the Gluten Free Casein Free Diet http://www.gfcfdiet.com/ as a starting point. There are also supplements that children take. Dr Wand at the Midwest Wellness Center is a place to look into. http://www.midwestwellness.com/about.html A holistic person, or as I mentioned a chiropractor would also be able to guide you.

Autism Speaks is a great website to find information http://www.autismspeaks.org/ They go through each type of therapy available, probably in more detail than what I did up above.

I hope this helps :)
C.

M.,
Don't be sad for you son. There is a reason for everything (spiritually speaking). My son was diagnosed with PDD at age 3 and soon after ADHD. Don't be scared of medications - they can greatly help your child concentrate and not be as aggressive, help him sleep, or whatever his problems are. Just find a good psychiatrist who specializes in working with children and is very experienced with the autism spectrum.
My son currently takes Risperdal, Strattera, Lithium, and Clonidine. Sounds like an awful amount of meds, but he is doing wonderful and we aren't seeing his aggression, he can focus on his schoolwork, and he sleeps well at night. :)

Jackie

I am a mother of two boys on the autism spectrum. My oldest is 13 yrs. he is diagnosed PDD. He was misdiagnosed at age 3 as ADHD. We treated with medication for 6 months and stopped until he was 6yrs. At 6 he was treated by several specialists and treated with medication to present. Some medication he feels he needs and others we have tried to reduce without success.
So with that said, it is a choice one has to make based one the individual. Each diagnose is different and individual to that child and so will be the treatment.
My younger son is not on any medication at this time because my concerns with him being diabetic and the medication curbs the appetite.
Both boys are in speech, physical and occupational therapy at Special Children, which is in Hudson, Wisconsin.
This group is fantastic my boys have been helped so much by their program that I would highly recommend them to anyone with autism spectrum children. Special Children have been operation for over 20 years.
I hope this helps. I am willing to share my knowledge and help others.

T. G.

I would get in touch with Frasier Child and Family center. They are excellent in working with kids and families around these issues. They are in minneapolis, as well as other locations. Good support and education will be so important for all of you. He is young enough that there is alot that can be done to help him (with or without medication). Good luck!
K.

I do have a website it's one I like called kidshealth.org

I will try to send you a link.

www.kidshealth.org/parent/medical/learning/pervasive_deve...

My daughter has never been diagnosed with anything in the autism spectrum, but I have been looking on my own to figure out her "quirks". It's hard to see your child in pain, especially when they are too young to understand what is going on with them. I feel sad too when my daughter doesn't recognize the social cues from other kids.

It's also easy to get frustrated, but here's sending ((hugs))
to keep strong for you and your son!

~B.

Hello, I am a mother of a 10 year old with ADHD and my son was diagnosed at the same age as your son. It was hard for my son to do the necessary work in school because of his behaviors. In kindergarten, at his annual review, his teacher suggested having him evaluated by a physician for ADHD. The symptoms were very obvious in my son but, make sure your doctor(s) are confident in the diagnosis. My son started on Straterra a non-stimulant drug. It didn't help very much and he had bad side effects. Next, he was on Concerta it also did not work very well and caused increased anxiety and depression. The doctor then suggested Ritalin which had only one negative side effect, loss of appetite, in my son's case. He stayed on Ritalin for three years. Just recently we switched to Adderall extended release form because he was taking three pills a day on short-term Ritalin and we wanted to reduce the number of doses a day. Medication is a necessary treatment. Stimulants are proven more effective than non-stimulants. I have found that if one stimulant medication doesn't work very well try another and it is likely to work. I approach medication changes very cautiously,even though it doesnot appear that way from what I wrote. Over four years I have learned that the medical community does not know your individual child's needs best,you the parent do. The medical community has knowlege of drugs and prescribed treatments. You have to select what you believe will benefit your child. Lots of love, patience, structure and human kindness goes a long way in helping your son.

Hi M.
I have an 8 year old that was diagnosed with PDD at an early age. It has been since changed to Aspergers. Finding a support group helps. If you don't have a parent group in your area you can always find one on line. I belong to www.aspergersworld.com this is a great place to find info. ask questions or just find support. The other members have been so helpful to our family. And I can tell them stories that only they can understand or find funny. I hope you check the site out.
K. S.

I beleive my 7 yr old may also have this, we know he has ADHD, but I am seeeing things that look more like autism. I don't believe in medication unless that is the only thing that will help, we are getting to the point were I think that is the only thing that may help him function. Good luck with your son.

Good Morning M.,

I had tremendous luck when I connected with Dr. Daniel Amen and his ADD/ADHD clinic. He is on the cutting edge of ADD/ADHD treatment through the technology of SPECT scanning. He is able to analyze the brain through a collection of over ten thousand micro-photographs.

ADD/ADHD has been a problem in my family for a few generations back. Through the work that he has done and visiting his clinic for a full battery of tests he was able to see that I was not suffering from ADD/ADHD but from Post-Traumatic Stress Disorder, Severe Limbic Depression, and a mild head injury at the age of 8, that was still affecting me into my thirtys. I was given a much more specific diagnosis and in turn very specific medication options, including a natural approach, to treat my combination of needs.

I would highly recommend his NewPort Beach Clinic-hey if you have to have medical tests done-why not in sunny California minutes from the beach. This is the clinic I received my very personalized care from and I loved every minute of hearing my story and needs from an outside perspective. You will receive three sets of of two scans and a remarkably extensive write up of your sons more specific issues and medication options.

I went after seeing a friend of mine have a wonderful experience and benefit from the highly accurate medication recommendations.

You can google AMEN Clinics or go to www.brainplace.com. If you mentioned you were referred by a former patient you may receive a discount. If that is the case I would be happy to give you my information for referral.

I found the clinic to be very accommodating and their knowledge of the area and hotel options very helpful. If you decide to go, I could recommend several attractions and even speak with you about your travel/Amen Clinic experience.

I applaud your willingness to seek care for your son and by proxy your entire family.

Have a wonderful day and please feel free to contact me if you need to.

J.

M.,

I agree with Jennifer that it is very important to eliminate all processed foods, food additives, etc. from you sons diet. I believe that it should be removed from all kids diets but especially those with extra sensitive nervous systems. There has also been a lot of research on the benefits of Chiropractic care for children with many types of neurological disorders including ADHD and those in the autism spectrum. For more information and to find a pediatric chiropractor in your area visit www.icpa4kids.org. Also feel free to contact me for more questions.

Good luck,
Dr. K. K., DC
www.schroederchiropractic.net

Hey M.,

My beautiful 5 yr. old daughter also has PDD-NOS. She was diagnosed in April of '07. This is a very overwhelming time for you. I am also at the beginning of this journey. I know what you mean about feeling sad for your son even though you knew the diagnosis was coming. It is exactly what happened with us. I cried on and off for weeks about it. Mostly because I wondered what it will mean for her life. I would say give yourself time to be sad for him but always remember your son is exactly the same little boy he was before the diagnosis. The diagnosis hasn't changed who he is and you still know him and love him best. It only changes you, and what you will do now that you know.

I would also say trust your gut and don't get discouraged or overwhelmed by what people tell you. Find good people (doctors and therapist)to work with your son and don't be shy to change if you start someplace and it's not going as well as you know it could. Or if someone tells you something you doubt don't be shy to get a second opinion. Don't let people make you think you don't know what's best anymore and that they are the "expert." You are going to be his best advocate and his strongest supporter. If you surround yourself with great people and trust your instinct and always fight to get the best for him then you will help him achieve his highest potential.

Lastly I would say there is so much info. out there about autism and lots of it is conflicting. So it is hugely overwhelming and honestly depressing at times to read and sort through. When you find yourself getting overwhelmed pull back a bit and take a break from it. Don't swamp yourself so you feel helpless to navigate the info. Wait a bit, your strength will return so you can get back at it. Again honestly, the parents of special beautiful kids like ours can be overwhelming in their opinions and desires to help you get to great people and resources. I feel like it's because parents of children with autism feel a kinship and they don't want to watch others struggle to find the best interventions so don't let this freak you out if you find they "come on strong." You may be one of them sooner than you expect. On that note, we stumbled (luckily) on the best speech therapist, who specializes in autism and is located in Hopkins, her website is www.autismmatters.net and she even has a moms group, of her clients, that meets once a month.

Just remember your wonderful little boy is still the very same little boy as before. I am still sad, on and off, for my daughter but I also see how far she has come. Even though she'll always have PDD-NOS it's not who she is. It's just one part of what makes her who she is. I hope this helps and is supportive and not just more things you have to do and quick. Which is how this, too often, feels after getting a diagnosis.
Hope this helps you,
K. :)