Need Advice for PDD Diagnosis

Read the Out of Sync child it is all about SI and should help you.

Does your state offer any in home services? In PA we have a thing called wraparound when someone comes into the home and helps work with your family and child.

I would highly suggest biomedical interventions along with the typical SP, OT etc. You have a GREAT DAN! doctor in NJ, Dr. Neubrander (www.DrNeubrander.com). They are families here in Pittsburgh that travels to see him.

Go to www.autismlink.com and join the yahoo group also find a local support group in your area. Being with other parents in the same boat is easier than missing family because other parents get it when your family does not.

www.gfcfdiet.com is a great please to think about diet and food allergies especially since you have another one with food issues.

God Bless,
M.
John, 9 Autism

I really just have to say that when I read your request it sounded almost identical to my 4 1/2 year old son. I didn't really know there was a problem until he was almost 18 months. He wasn't talking yet. His pediatrician was very laid back about it. I called Early Intervention for an evaluation. They agreed that he needed Speech Therapy. They also noticed that he was delayed in some other areas and that he had Sensory Integration Disorder. I had never even heard of it. But after they explained it to me, it was definitely him. I wasn't aware that I'd be able to get help for the way he acted. I have to admit he was extremely difficult to deal with. At that time he wasn't really talking, he tantrumed all the time (especially when leaving the house), he didn't respond sometimes when talking to him, no punishment seemed to work, he didn't want any affection (a hug or kiss would actually result in a hit), he was escaping from the house (I had to deadbolt the door and add a door alarm), he'd literally just run away when we went somewhere, he was an extremely picky eater, among other things. The ST and OT recommended a Developmental Pediatrician. I made several calls and was put on numerous waiting list, all of which were like 2 years long. My sister was able to get me in with a woman in New Jersey, which found numerous "concerning" behaviors, some developmental delays, and possible early ADHD behaviors. She recommended increasing OT, adding Behavior Therapy, and coming back in 6 months. I felt like I wasn't really getting anywhere, no "real" answers. I wasn't able to get OT more frequently and never received behavior therapy. He ended up receiving services for approx 9 months. I have to say that those therapies did wonders! He is doing better than when he was 2. We still have some of those same issues (and possibly new ones), but they seem to be to a lesser degree.
After 2 years on those waiting lists for a second opinion, I called two of them back. The one saw that I had called 2 years prior and has no idea how I got lost. The other acted like I never called and sent me new papers. I have to say I am very frustrated with this whole system. I've had to do all the work, not even sure what I am doing. It is even harder for me now because unless you really know him, you'd probably think I was nuts for taking him. I start to think that maybe I am overly worried. But when I fill out those forms, there are a lot of check marks. And reading your request and especially the responses actually made me cry. It makes me feel like I am not alone here. I think that there really needs to be more help for parents like us.

S.,

My son is in the process now (has been for the past year) of being evaluated and treated for SPD, PDD, etc. He is now 5 and overall we have seen great progess, it seems to be 2 steps forward, one step back. I completely understand how difficult, trying, scary, and isolating this all can be.

First off, I found the SID-DSI all about kids Yahoo group to be a wonderful lifeline of support, suggestions, and approaches. It gave me hope and help. Major help. I never would have found some things we needed w/o it.

We will not give our child the flu shot either. It contains MSG (which is a soy derivative, and just figured out my son is allergic to soy), formaldehyde, and mercury. You can do some research and get a medical/religious exemption. I'll home school my kid before he gets a flu shot.

You will need to read everything you can about approaches to autism/spd. PDD is Pervasive Developmental Disorder and is the medical term for autism.

If you try to get help through the schools they tend to do the bare minimum that is legally required and it usually doesn't make a dent in what your child needs. The school systems are overwhelmed with special needs kids. Get what you can from the school, then figure out what your health insurance covers, if anything, and then decide which therapies you feel are worth fitting into your budget. We have just come to accept that there IS NO extra money. Anything that does not pay bills goes to therapies. We have tried many, many things. In our experience we had great results with some alternative things that no one has ever heard of, but if it works and is safe, that is all I care about.

See if there is an Easter Seals facility or an autism specialist center somewhere in your area and get on the waiting list. Your son's diagnosis should by law, make him eligible as a child with a disibility for medical assistance to help cover his bills. If they haven't already, the school should have a social worker spend some time with you to help you navigate the systems to get your child help.

There is no right or wrong way to live with/handle this. It is trial by fire and you do the best you can, get help where you can, pray hard, and take care of yourself so YOU can be strong for your kids.

I bring this up because I see that your youngest has multiple food allergies. Food allergies and sensitivities often contribute to PDD/SPD symptoms. Most MD's and allergists will tell you that is not so, but many, many moms have seen differently and now some MD's (DAN (Defeat Autism Now)-doctors), and most homeopathic or naturopathic doctors agree and know how to biomedically help your child go into a sort of "remission". Many, many PDD/SPD parents strictly follow a glutein free, casein free, soy free diet - it is a pain at first, it takes awhile to get your family's diet and grocery habits all changed around, but they do it because sometimes the results are THAT dramatic. Pulling my son off of soy has shown me that. I use a NAET practitioner to find out my son's food sensitivities because it is painless and easy.

Research,research, research, read, ask around, talk to people. Email with moms around the country to find out things you can try to handle it all. Take care of you.

L.

If you really think it may be autism then you must seek a second opinion with another neurologist. Don't feel bad about doing that, some doctors know more than others. Another thing, how much information do you have on PDD? Try trolling the internet for as much information as you can because there may be other things out there that you may not have been told. Do the same search for autism. My nephew is borderline autistic (mild autism) and he has ADHD and the neurologist had to give the school the information and his condition then he was put into his classes. Your son would have to go through the same kind of tests, catscan etc. Insist on getting it done, tell them you think it might be and you want him tested to be sure. You will find someone who will listen to you. Good luck.

S....my understanding of PDD is that it is kind of a "catch-all" diagnosis for individuals who are on the autism spectrum but meet different criteria than children who are labeled with traditional Autism or Asperger's Syndrome, etc. I am not sure why the teachers are set on PDD being strictly a behavioral diagnosis - in my reading, I have not found that to be the primary criteria.

I actually discussed both PDD and Asperger's with our pediatrician yesterday as they apply to my son. She said the best person to give the diagnosis is a developmental pediatrician or a pediatric neurologist.

The other thing about PDD that I have seen and heard from a wide variety of people is that because it is a catch-all diagnosis, it is something that can be changed or backed out of if a better diagnosis becomes apparent as your child continues to develop, e.g., Asperger's Syndrome is generally not diagnosed until a child is school-age...and many times not until they are quite a bit older if ever because so many individuals with Asperger's are extremely high-functioning and brilliantly intelligent but "quirky". For that matter, my son's best friend was diagnosed with and treated for PDD when he was a child and they back-pedaled from the diagnosis when he was in 2nd grade. He was delayed and did things differently than the norm - but he wasn't a behavioral problem.

It seems to me that your suspicians of mild high-functioning Autism are being supported by the PDD diagnosis. Perhaps the teachers are not fully aware of how broad PDD is considered to be.

Just my two cents...I would definitely direct questions to the diagnosing doctor. They are used to this - sometimes it takes awhile for any type of life-altering diagnosis to settle in and with so much conflicting information out there, it is part of their job to clarify. Good luck!

Hi S.,

Although I do not have your same personal experience I wish to share with you that you have rights for your child to attend a non autistic class and have an aide or a TSS with him throughout his day.

I am currently aiding with a 5 year old boy who displays a similar relation to the symptoms and situations you are describing. He is diagnosed Asbergers Autism which is at the highly functional end of the spectrum. He is able to learn and in many ways smarter than other Kindergarten children in his class. However, when he has an episode, life totally changes and he cannot function or understand any type of directives and becomes destructive with tantrums. As much as I am not a proponent of meds, he needs meds to be able to function. I've witnessed him before and after meds and in his case the meds are making a huge difference.

Additionally, I've dealt with the food allergies with my 7 year old son. It's hard to find food in this day and age that children find flavorful that isn't packed with dyes, additives and allergy triggers. I've found a company who has changed our ability to provide healthy tasty food which my child will eat. Feel free to check them out. I love them so much that I've started my own team here in Harrisburg to get the word out. www.tk.mywildtree.

I wish you the best and you are asking the right questions. The first thing you want to do is know your rights as a parent. I'm certain you are just starting your journey but there are plenty of resources out there to get you through. One thing I would recommend is looking at dietary issues and get a second opinion if you get to where you need to consider meds.

There are several good books out there too. One I read was Everything You Child with Autism wants you to know. There are some great techniques and explanations in there.

I wish you the best.

Hi S.,
Personally I would schedule an appointment with the doctor so you can discuss ALL of your issues/questions. Has he had an actual diagnosis? Maybe he was too young at the time for a complete diagnosis? Has he applied for Medicaid, etc. so he can receive all of the wrap-around services he may qualify for? Has there been an IEP done? I think the best thing you could do is to find another mom or a group of moms in your area who can steer you in the right direction as far as services for your son are involved. This is a complicated arena and if you are to be your child's advocate, you need to get as involved as possible!

Hi, S.!
The FIRST thing you should try is discipline. Only when a child is having trouble comprehending and functioning in an orderly structured home with firm discipline and rules as well as love and support should you even question anything possibly being "wrong" with them. A huge sign that nothing is wrong is when the child can behave well in certain situations. Selective hearing is not and actual medical symptom unless there really is hearing loss in one or both ears. These days there is a "disorder" for everything, ans often children are unfairly diagnosed and medicated unnecessarily. Many friends of mine who work in child development fields say that the worst "cases" just always HAPPEN to come from completely unstructured, undisciplined homes, which is totally not their fault. You sound like a caring mom who doesn't have DEFINITE medical problems to contend with yet. You should first try a calm orderly system enforced by both parents with firm discipline and consistent consequences for defiance and not following commands. Give it six months before looking for health problems. Every child will touch something fifteen times after being told no if there are no consequences other than the word "no". My stepsister has 12 kids, and they all started speaking clearly at entirely different ages-the boys were all really late, sometimes three before talking at all, and they are all normal highly functional kids. If you can avoid therapy and medicine for your child, he has a better chance at growing up mature with healthy self esteem. Discipline is a necessity to any child, not a mean last resort. Good luck seeing improvement, and hang in there!

Dear S.

My husband is a local chiropractor and we tend to turn to more holistic, alternative treatments. Our doctor is wonderful and the practice in which she works specializes in PDD and many other diagnosis. The practice is called "Woodlands Healing Center" in Quakertown, PA. The doctor's name is Dr. Denise Kelly. We love her. Just thought if you'd like to seek more opinions, she would be great for you.

In regard to the vaccinations, we do not give our children any. We have done a ton of research and with my husbands education, we understand the risks of the disease vs. the risk of the shot. We feel the risk of the shot out weighs the disease. So, in my opinon skip the flu shot. You are not requiered as there are expemtions in every state. Check out the National Vaccination Information Center website for more information. Www.nvic.org
I am also a school teacher and know that if you request your child to be tested by a public school district, they have to do it. So, be sure to ask for the testing if you feel it important.
A mild form of autism is sometimes diagnosed as Asperger's Syndrome. These children need additional support in school. They are high functioning, but need help with academics and social issues. I tutoried an Asperger's child for several years. With testing, they can determine what degree of PDD your child has.
My email is ____@____.com if you have any more questions.GOod Luck.

S.

S.,

It's great that your son is already in a special needs pre-school and making such progress on his speech. I'm surprised that the teachers there would disagree with a neurologist's diagnosis by focusing on PDD meaning behavioral issues. It's not really their place, I think, and the diagnosis, devasting though it may seem, is probably really to your advantage. For my son, who was diagnosed with PDD around two years of age, it's meant that he has had great wraparound services, which have made a huge difference in all respects. Not everyone is lucky with the agency or particular TSS assigned, but I would encourage you to get medical assistance arranged and get the services set up. All in all, it's probably better, especially if your son is high functioning, for him to be in typical schools with a TSS or aide than in a classroom only for special needs kids. I mean, essentially, when he's older. I couldn't be happier with our Intermediate Unit classroom for 3 - 5 year-olds, in fact. Another point is that a TSS can be assigned to you at home, and they're very willing to go "into the community" with you. I learn a lot about how to handle tantrums and other behaviors from our TSS and am not afraid now to take the kids out. They emphasize that kids on the spectrum need to be exposed to lots of different public situations to get used to them, become more flexible, meet people, etc. Best of luck to you!

Hi S. ((hugs)) I understand how you feel. My son was dx'ed at 2 1/2 and started a special ed preschool at 3 and has done 2 yrs of this. He gets speech and OT via the preschool and gets out patient speech and OT. We had wrap around and both times we tried a TSS it just didn't work out. PDD is a autism spcectrum disorder. NO AUTISTIC CHILD IS THE SAME...so with that being said, some PDD kids have speech issues, sensory issues, behavioral issues, eating issues, anxiety issues BUT none of these children can be compared to each other....to unique in their own way.
PDD kids are higher functioning.
My son will attend kindergarden next year in the autistic support classroom. He has emotials issues we need to work on and some behaviors that need work on...more like his ADHD side of it.
AS for your childs school...does he have an IEP? Get a copy of your pysch eval and get ahold of a special ed advocate to help you navigate. By chance are you in PA? IF you are getting wraparound will help by getting a BSC to help you navigate this confusing time. IEP will help lock services in for your child such as speech/OT/PT
Document all of the meetings and reports you get from your doctor and school.
Best of luck to you. Just because they "say" he doesn't need it....you fight for it. You are your childs best advocate for his rights.
Best Wishes
N.

S.-

Hi, how are you? I was wondering how the progress with your son is going? I work for a company which provides a variety of services to children with Autism, PDD and various other diagnosis. Maybe we can help in some way. Feel free to contact me at ____@____.com and we can talk in more detail.

Thanks,
E.

For a moment I thought you knew my son. It sounds like he has Aspergers Syndrome which is what my son has. It happens more in boys and they are high functioning. My son is a straight A student and 2 years ahead academically. It is believed that Bill Gates has Aspergers syndrome...so no need to worry then right?! LOL! Check out AS, which it is commonly referred to as, on the internet. My son is 12 and he goes to a school called Milestones Achievement Center. They start in kindergarden but may be able to steer you in a good direction. Their website is www.macamerica.org. Your sons school may not want him to be in the class with autistic children because he is high functioning. The MAC school separates them by age,function and diagnosis. The home school does have to pay for the child to go their if they are unable to give him the education he needs. The school will not volunteer anything. You will need to stick to your guns and push. You have time till he starts kindergarden to get the diagnosis and educate yourself on it. If you need help when the time comes, if you feel bullied by the school, you can get a mental health advocate to help. My son is in the Conrad Weiser District and they were pretty good about it, they did drag their feet on it though. I just had to keep on them. Does your son have something that he is TOTALLY infatuated with? That is another symptom of AS. For my son it was bugs and spiders, now it is anything to do with Egypt. For Bill Gates it was computers, it is computers for alot of AS children. He will be fine, we as parents on the other hand are always a wreck for them, and for them it's no big deal. Funny how that works! Good luck! I'd love to know how things turn out for you.

Sincerely,
N. Essick
Robesonia

Hi S.,
My son was diagnosed at 3-3 1/2 yrs old with PDD by a developmental pediatrician. He currently attends an IU preschool. He was in an autistic preschool class but then he met his goals and was sent to a different IU preschool class. We have a copy of his report, I think it's something you need to get ahold of if you dont have it in writing or ask the specialist to help you out to make sure your child is getting what best meets his developmental needs. Have you tried to apply for Medicaid, so he can receive wrap-around services, if he needs them? My son didnt need TSS so we never went that route. Does he currently have an IEP? If he does, you need to speak with the service coordinator and PUSH! They will get tired of hearing you but it's the best thing to do like I said to make sure your child is getting what he needs. Hope this helps :)

"Remember, an alphabet does not make a child. Your child is your child, a diagnosis does not change who they are, just points you to places where you might learn more about your child."

Hi S.,

It would likely benefit you to have your child evaluated by a neuropsychologist or developmental pediatrician who specializes in autism and who can provide you with a more thorough evaluation of your son's strengths and weaknesses as well as alternatives for treatment. A PDD diagnosis does not mean autism, something that the neurologist hopefully mentioned. Autism is a type of PDD, but they are not interchangeable. PDD is a broader category. It sounds like your son has some features of autism, but does not meet all the criteria which might be why he was diagnosed with PDD. A thorough evaluation could help you set up appropriate services for your child. Behavioral therapy can be very helpful for children with PDD, seeking the advice of an expert in the area will be extremely important. Good luck to you and your family.