Help with Diagnoses Where to Go from Here

Updated on February 18, 2007
C.C. asks from Bordentown, NJ
14 answers

My 3 year old daughter was just diagnosed with Pdd (pervasive development disorder) from a neurologist...where do i go from there he said to call the school district (i did) and they will evaluate her..but how do i get a specific diagnoses do i take her to another doctor..I really want to learn how to handle my daughter i feel so disconnected from her and would like to help her to the best of my abillity and i feel isolated and don't know which way to turn any advice would be helpful.....

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So What Happened?

Thanks everyone your advice is very helpful she has an evaluation from the school district on wed..and i have to wait until april for her to go to the developmental ped...

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B.B.

answers from Philadelphia on

Have you considered a Developemental Pediatrician? My sister sees one for her daughter who has PDD. Not only does she see the doctor, he also has a social worker who works very closely with my sister to help her access services, monitor the child's need and teach my sister how to care for her daughter. The "wrap-around" services that they provide have been very helpful.

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K.S.

answers from Washington DC on

PDD is a specific diagnosis. She's really too young to determine prognosis (that is, how she's going to turn out).

Mainstream therapies for children with PDDs are occupational therapy, speech therapy and social skills therapy. They have social skills groups for three year olds.

The school system can help with some of it. Let them do your evaluation.

You won't know how things turn out until they do.

Another piece of advice: The whole family should get therapy, because any time you have one family member with a disability, it affects everyone, and you will need professional help for the family to retain its proper balance, and for everyone to retain healthy ways to interact -- not just to help you parent this child.

Good luck!

1 mom found this helpful
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C.N.

answers from Philadelphia on

Here are a list of websites you can research. I will continue to research some more information for you. You can also go under google.com for more information. Please review the websites below:

www.toddlerstoday.com/resources/articles/pdd.htm

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

www.med.yale.edu/chldstdy/autism/pddinfo.html

www.ninds.nih.gov/disorders/pdd/pdd.htm

I hope this information is helpful. Please keep me posted on how she's doing. God bless.

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T.T.

answers from Pittsburgh on

Hi C., my youngest son was diagnosed with ADHD and ODD(Oppositional Defiant Disorder) and later he was diagnosed with Pdd. I was told later that he was definately Autistic. I was told that he was diagnosed with Pdd NOS(not otherwise specified) by a psychologist and later by a psychiatrist. It was a psychiatrist from the CDU(Child Developement Unit) at our local Children's Hospital, that finally told me that my son was Autistic above all else. My advice for you is to contact a doctor that specializes in children diagnosed with PDD. Also, I was lucky that there is a local agency that helps me with getting the care that he needs called wraparound. My son also had a speech delay to go along with everything else. To see him now, he is doing wonderfully and he is not on any medication whats so ever. So I will tell you this, its up to you and this is just my opinion. If you choose to put your child on medication, just think about it first before jumping on the band wagon so to speak. Dont get me wrong some children do wonderful on medications and some dont. My sons father and I decided not to medicate our son. Last but not least, look up all of the information that you can. Look for toll free numbers that you can call to get information about play groups or support groups that may be in your area. Believe me they do help ya in the long run. Hope this helps. If you have any other questions please feel free to contact me if you like.

take care, T.

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K.B.

answers from Philadelphia on

Hi C.!!!!
My son was diagnosed with PDD at 3 yrs old at CHOP. I see you are in New Jersey and CHOP is a great hospital with good specialist. My son was diagnosed by the developmental pediatrician there.

Since your daughter is 3 yrs old, Early Intervention services for children age 3 - 5 are administered by the Department of Education through your local Intermediate Unit(which is your school district). Call the district to go about getting information and getting things setup. Eligibility is based on the recommendation of a multidisciplinary team and is established by an individual educational planning team(IEP).

You dont neccessarily have to call your insurance company. Depending on her needs, she may qualify for alot of her therapy at "EI preschool". You may even qualify for medical assistance so you should contact your local county assistance office as well.

I hope this helps!

K. [email protected]____.com

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T.A.

answers from Washington DC on

You are not alone, and you have joined the Sisterhood of Moms with Developmental Disorders. My 7yr old son, Kieron, has Asperger Syndrome. PDD may be as specific as the diagnosis gets for a while.

Contacting your school district is good advice. They have programs for your daughter to get her on the right track. Call the district and get the information about when she'll be tested. The sooner she starts therapy the better your daughter's outcome.

The next call is to your insurance company. You need to find out what they'll pay for and where you can get her serivces. Depending on her needs, she may have speech, PT, OT and maybe counseling.

One of the best in this area is Children's Specialized Hospital of Hamilton. They specialize in therapy for all sorts of disabilities, PDD included.

Good luck!

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H.P.

answers from Washington DC on

A school psychologist can help with those recommendations. Do you have a Children's Hospital near you? There are frequently private treatment centers that also have good programs for kids with PDD. Also try to hook up with a support group for yourself - a forum online, or something in real time, so that you have support. It can be challenging and draining for a parent with a kid with those specific needs, and you deserve the support so that you can continue to parent at your best. I wish you luck! You might also look into some sensory integration disorder programs - they might have something for you or some suggestions for you.

H.

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R.L.

answers from Philadelphia on

hello there,
i dont know if i can really be of any help...i dont know exactly what pdd is...but i,personally,have been dealing with the possibility of my son being autistic..he is 3 1/2..a neurologist told us he probably had autism without actually giving him the diagnosis..and we have an appt with a developmental pediatrician in a couple months...my son was 18 months when i realized something was "off"...we went through our county to get him help...the program is called early intervention...they have the program in every county..they evaluate the child and give free help in alot of different ways...i cant say enough good things about it..i was also told by everybody to see a developmental pediatrician..they evaluate the child at length in many different ways..but nothing intrusive...i would research the disorder and also try to find other parents with children dealing with the same issue...i myself had to try many different things with my child to find out what worked best for him..example:a couple months ago i tried being more strict and not so comprimising..i was trying to get my son to realize i meant business and take me seriously..to listen to me...he started throwing things and throwing tantrums constantly,talking back etc..i realized that didnt work...my son responds better to a nurturing and comprimising parenting style..and since he is so strong willed, i have to let him make decisions...i know i was told once i got a diagnosis we could get more help..such as financial aid through different agencies as well as different therapies...call early intervention..its in the phone book..they can set you up with everything you need...also, ask your pediatrician...they may be able to direct you to the right people or organizations...good luck...

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A.H.

answers from Allentown on

C.~
Hello. My name is A.. I have 2 children with disibilities. My daughter who is 4 1/2 has something similiar to CP and my son who is going to be 7 has PDD and ADHD. Tell me a little about your daughter. Is she verbal, how does she communicate? Communication and social skills I would say ate the hardest things. My suggestion to you, if you haven't already, get her into some therapy.(speech and OT) I would also say to get in with a developmental ped. There is a WONDERFUL one in allentown(I know that that is a tad far from you, but she is swesome). If you would likethe name and number, please let me know. They also do therapy there as well. If your daughter isn't in a school type setting, I would say look into it. Also, if she isn't already, call your local county office and speak to someone that is involved with the IU and see if you can get her evaluated. She would more then likely qualify for service in an IU preschool.(this is how things are ran in PA, so youw ill have to make some calls to see how things are ran in NJ.)
If there is anything that I cna do to help or youhave any more questions, please let me know.
Hope to hear from you soon.
~A.

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C.W.

answers from Washington DC on

I took my son to Kennedy Krieger in Baltimore---we suspected he has PDD-NOS or some form of autism. The neurologist said it was still too early to tell---wanted to place him in a non-autistic language-based classroom (at head start) then go from there. I want to get a 2nd opinion too. We plan to ask our son's pediatrician for a referral to a pediatric neurologist/developmental doctor. Perhaps you can ask your daughter's pediatrician/family doctor for a referral in the area?

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N.R.

answers from Pittsburgh on

Hello
My son who is three has a PDD dx. We have him in a preschool for kids will disabilities he also gets OT Speech and we got him in a social skills group.
Apply for medical assistance. You qualify no matter what your income is, it will pick up what your private insurance won't cover (it covers our OT and speech).
Look into getting a Wrap Around service which will help assist in your home. It will be your support group. The more help you get her the better.
Adam has been getting help for 9 months now and he totally amazes me daily.
Look into Virgina support groups for your area.

Good luck

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K.B.

answers from Pittsburgh on

I know where you stand. My son was diganosed with destructive distrubance behavior. My daughter who is 4 is in preschool so i contacted the early childhood center she goes to and got my son evaluated. They couldnt do anythign about his behavior but he did qualify for their Early Intervention program. Since he isnt 3 yet(will be in Jan.) they put him in their playground. He goes to school 3 days a week half day sessions. They will also evaulte his behavior in order to give us specific help we need. My son is very violent and has hurt my daughter numerous times, so I know where you are coming from with being isolated from your child. I love my son but at times I can not stand having him around me. The school district will help thats what the early intervention program is for. I am not sure where you live. I live in Pittsburgh so our school district is Pittsburgh Public schools. We have used the behavoral therapy with my daughter and its worked like a charm but trying those same techniques on our son doesnt work. We have just gotten him into the school program./ He has been attending for 2 weeks so its still early. I do not have any advice becuase we still havent resolved our problem but know that you are not alone. If you ever need anyone to talk too you can email me. I am available to talk. Good Luck

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J.D.

answers from Washington DC on

I am a Speech-Language Pathologist and I have worked in pediatrics for the past 8 years, including students with autism spectrum disorders (PDD is part of that). The school system is your best bet right now. They have lots of professionals that work with PDD all the time. If you are not satisfied with them, you can turn to your pediatrician who can connect you with other treatment facilities. They are very expensive, though, and most insurance coverage is poor for this. The most important thing for her is getting her special education and speech-language needs met. Make sure she gets a speech-language evaluation. The Speech-Language Pathologist can help you connect with your daughter better and give you ideas to do at home. In the meantime, there are lots of great resources, games, activities, and videos you can choose from at Super Duper Publications www.superduperinc.com. They have free shipping too. Also, linguisystems.com has good resources. There are some CDROMs they have called Buddy Bear that are fun and helpful with language skills. Good luck -
J.

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R.

answers from Pittsburgh on

Hey your not alone. My brother has pdd, aspergers among other things but those are his two big ones. He is now 22, and is a functioning member of society. HOWEVER-He does need constant suport from his family and friends. Patience seems to be very important from the parents end, and the teachers end. He tends to be loud at all times, and his rationale skills are sorely lacking. My mother did have him seeing a wonderful therapist-Robert Solomon (he was from PGH, but has moved, I'm not sure where to though) and she made sure that he was ALWAYS involed in after school activities.
I don't know what the other mom's out there think, but I think it's very important that they stay active in regular classes as much as possible. They are perfectly capable of learning, and they desperatly need the social atmosphere to aide in their development. I think therapy and tutoring, along with some form of IEP program at the school is a great way to go. It worked for Richie. Good luck!

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