Daughter Not Diagnosed but Can't Talk

You need to see a developmental pediatrian. They are the only doctors who can diagnose such conditions. Be prepared to be on a very long waiting list (6-18 mos) no matter where you go (Philly, Baltimore or where ever). Get her on as many waiting lists as possible. My daughter is 4 and we have been waiting since last September. She finally has her appointment on 3/31.
Best of luck to you, I understand how overwhelming this is.

I am fighting with the school to get one of my childern tested. You can try the schools psychologist. Have you tried the intermediate school? They are the ones that usaly help get kids tested for things like this.

It is hard, just don;t give up on the fight.

Look up info on Apraxia. It often goes hand in hand with autism but can also exist without autism. See if she exhibits any of the characteristics of that speech disorder. There are several good boks out there about the speech disorder with suggestions on things to do at home as well as how to get services. There are alos several websites as well.

Hi B.. A great Dr. not too far from you in Lancaster is Dr Margaret Kay (she may have a 1-2 mo wait list). Her website speaks for itself. She is not covered by insurance but is well worth it and does take credit card. Spend some time on her site even if you choose not to go see her. You will find a wealth of infomation, as well as support groups etc.

www.margaretkay.com

I have sent a few clients to her and they were all very satisfied with her findings... Her reports are about 30-40 pages long with concrete information on what each child needs at home and school to be successful.

Another good resource that you can look into is wraparound, a free service to PA residents. This will allow a behavioral specialist consultant to come into your home and work with your family and school, as well as a mobile therapist who can work directly with your child/children.

If your child/children have a diagnosis they will qualify. There is a series of steps to go through to put the services in place (takes a couple months). Start by calling your intermediate unit in your county.

http://www.caiu.org/438311522011011/site/default.asp

Lastly, you can get on a wait list to see someone at CHOP or Dupont, but both of those are 9-12 month wait lists to see someone. I was fast tracked through the intermediate unit, and they actually took the diagnosis away from my son.

The main reason to get an actual "diagnosis" is to get more services for your child. An ADHD dianosis will only get you a 504 at school where as a diagnosis of Autism (hig functioning) will get you an IEP, which may be what you really want.

If you are looking for a private professional that is covered by your insurance you might want to call your insurance for a list of preferred providers in your area, get several names and then call and ask very specific questions about what you are looking for and see the one you feel the most comfortable with.

Hope all these ideas help. Always trust your own judgemnt! In my experience both professionally and personally, mom knows best!

Take Care

C.

Good luck

I don't know a whole lot about autism, but I know that CHOP (Children's Hospital of Philadelphia) has one of the leading autism spectrum disorder centers there. I would definitely check it out: http://www.chop.edu/consumer/jsp/division/service.jsp?id=...

Good luck.

Hi B., My heart goes out to you. Talk to the school, it sounds as though they are really trying to work with your daughter. Best wishes

go to AI DuPont in wilmington, de - don't stop until you get an answer, remember that the school won't be motivated to "unearth" the proper diagnosis because then they have to provide services which might include special schooling.

http://www.nemours.org/service/neurology.html
http://www.nemours.org/service/behavioral.html

Try contacting your county's Intermediate Unit (or general special education department). This phone number can be had by calling your children's school and asking. A child of 8 should have already been assessed by her school's special education department, and if she hasn't, contact the head of special ed immediately. You have the rights to everything your county has to offer, but they don't really advertise that!

Dear B., if I were you I would definitely be very aggressive in getting help medically for your daughter. It sounds like you could visit a neuropsychiatrist. THey involve the neurology and the psychology of the child. I don't know where you live but ask your school guidance counselor or school psychologist where to contact one.
I know it is difficult, my story is that we as parents are our children's only advocates, no one loves them like we do and we don't just put them in a group of "special kids", they are OUR kids. Go for it, and try to keep your husband in the loop at all times.

Blessings,JCC

The 1st thing do you see a pediatrican? If not my 1st suggestion would be to get one. Then he/she could refer you to whereever they felt your child needed to go. If you are looking at MD or Phily I am assuming you live in the area. Geisinger medical center is great and well known childrens hospital. I have a friend who's son goes to both phily and geisinger. they have recieved great care at both. He had a liver transplant about 10 yrs ago. I wish you luck with your children. Mimi D

Kennedy Krieger is a great place for you to turn to. They are fabulous with children and in looking at the whole picture and the whole child.

Please do keep us Mamasource members posted on your progress.

Hi B.,

I've been where you are and I sure know how frustrating it can be when you know there is something wrong with your child but you can't seem to get doctors to take you seriously.

My 5 year old was diagnosed with PDD-NOS (a form of Autism) when he was 3 years old, and I can't tell you how many doctors we went through before finding one who would listen.

We finally found a pediatrician who recommended Dr. Scott Myers in the Geisinger Medical Center (Danville, PA) and I can't say enough good things about this doctor and his staff!

Dr. Myers specializes in Autism and if anyone can shed some light on how to help your daughter - whether she has a form of Autism or not - I believe this doctor can.

Should you decide to give him a try, be prepared for a long wait for the initial visit - I believe we waited 6 months to see him the first time, but finding a great doctor who will listen and help was well worth waiting for.

I wish you and your daughter the best of luck and don't give up hope!

B.,

My nephew has been seeing a developmental specialist at CHOP since he was about 6 months old. He has seen many other CHOP doctors as well. He has no definitive diagnosis, but not for lack of doctors and other specialists evaluating him. I don't have the name of the doctor but I can get it for you, if you'd like. I am pretty sure it is a woman. Good luck.

B.:

My motto in finding a doctor who takes you seriously is this:
IF SOMEONE WON'T LISTEN, FIND SOMEONE WHO WILL.

My son could talk very well but he too would hyperfocus on his school work. That is until 7th grade when he had to go to so many different classrooms. He began wondering around the classroom (in his own world). He was diagnosed and treated for ADHD which helped a little. By the time he was in high school he began to fall apart. I now know that he has Asperger's and a rare metabolic disorder. I wish I would have known when he was eight!

Eight is not simply delayed but years behind.
1) Has she had her hearing checked? (deafness or fluid in ears)

2)Does she speak sometimes and not other times? (Selective Mutism)

3)Has she been evaluated by a neuropsychologist? (the first step in proper evaluation)

For your daughter's sake, do not be satisfied with the answers you are or, in this case, are not getting.

Love In Christ Jesus,
D.

B.,
My heart goes out to you. My sister has been fighting the same battle with her 10 yr. old. Without an official diagnosis she does not qualify for most services, so she is paying quite a bit for a private school. She lives in DE, but is considering moving to PA because the special ed. program seems to be better. All I can say is keep pushing. Have you spoken to anyone in an Autism support group or resource center? They may be able to help you even without the diagnosis. I will say a prayer for you!

I had a similar problem. Ask for a referral to see a Developmental Peds Doctor or Peds Neurologist. Normal doctors are normally the road blocks in getting a diagnosis. Once you get an accurate diagnosis then you can get her the treatment she needs to learn to talk.

I would also like to let you know that Spreech Aprexia is very common in conjunction with ADHD. It is a mild neuro disorder that the brain and oral motor muscles do not coordinate with each other. It can present as severe or mild speech delay. I have a 9 almost 10 year old with ADHD (and several other dx's) and speech apraxia. I would have her looked at by a neuro doc and by her ADHD specialist (a family doc can miss some of the signs) to see if her speech might be more then just "speech". It sounds like she might have some oral motor disfuction. It can present some similar signs as the autism spectrum, but be a combination of the 2 disorders. There is also a link to anxiety disorders and these conditions. PDD-NOS (mild atutism) can be confused very easily with the signs and symptoms that you are reporting that she is showing. I am not saying that she HAS these other disorders, but just a heads up. I have delt with this issue myself, so I am only going off my personal experience. Hope this helps :)

The doctor's have told you that your daughter does not have autism. I have a child who has borderline ADHD, and what you described in the classroom setting to keep her focused on her work is ADHD. Do you have your child in behaivoral therapy or one of the ADHD px's to help her keep focused? With ADHD, a child must have a very structured environment to keep focused and be able to modify their behavior to adjust to normal society. Any change in schedule/structuring of the day, can trigger an ADHD eppisode. I took my child to the county mental health department for evaluation to get the help that my child needed.
Was there a developmental delay, due to your daughter's older sister needing more attention due to epilepsy? That has to be taken into account. Another of my children had to go through speech class in school. My child would get so frustrated, and sometimes the therapist got frustrated with my child for not trying hard enough. Then the therapist finally told my child that once she learned and could do the sounds correctly, that my child would finally be done with speech. Since this was what my child wanted, my child completed speech faster than the therapist expected. Now, this may work the same with your daughter..unless your daughter likes the extra attention she is getting. Thus using all of this extra attention to compensate for what she feels that she is not getting at home. Is she jealous of the attention that her older sister with epilepsy is getting? Does she feel like she has to have something wrong with her too, in order to be as special and receive attention like her older sister gets? Only a psychologist can make that kind of determination, and then behaivoral therapy would have to be applied. It would be tough, but end results would be good. Let me guess, your daughter is very smart...when she applies and focuses her attention on something.

I would talk to the school's Intermediate Unit. My son has a severe speech delay and when I took him in to be evaluated, they checked everything from autism, speech, emotional, and physical issues. You could probably get information from the school as who you need to contact. Good Luck
Jen

Has your little girl been seen by a pediatrician? She may need to also see an ENT specialist (ears, nose and throat) Perhaps she has trouble with hearing. Many things need to be ruled out before a diagnosis of Autism is made. Also check on the side effects of any drugs that she is taking. Too many children are diagnosed with ADDH that should not be. A real good exam is necessary for this child. Maybe you should start from the beginning again. Good luck and God bless.

Alice

My son has similar problems... ADHD, speech delay. He is 7. He has a form of autism called aspergers. It is a high functoining autism.. I did alot of research and his doctors at first diagnosed NOS POD... After seeing a few doctors and testing the told me about aspergers.. There are a few web sites you can visit. http://www.mayoclinic.com/health/aspergers-syndrome/DS00551
this site has some good info. Don't disregard your doctor but as a mom always follow your heart. Please keep me updated and if you have any questions you can contact me.

I would make an appointment with a pediatric neurologist who would be able to make that diagnosis,if in fact that is what the problem is And once a diagnosis is made then you can better deal with your next step. Often a neurologist is easier
to get an appointment with then a psychiatrist.
I am a pediatric nurse and have walked in your shoes with a developmentally delayed child and no help from the medical community.
Also your local Autism Organization , they should be able to
help you find a qualified diagnostition. Good luck!!

I'm no doc but it sounds like PDD-NOS on the austims spectrum or high functioning autism. My son is almost 5 speech delayed and has social anxienty BUT he's very bright and has other great traits about him.
I would contact your intermediate unit OR seek a private eval. Honestly some school districts SUCK on seeking a DX. ADHD is a very common trait amoung spectrum kiddies. My son has PDD-NOS, SID, and ADHD---talk about alphabet soup. All the co-morbid traits are part of the spectrum disorders including Aspergers's syndrom.
Asperger's the kid USUALLY has good verbal skills but socially "iffy". PDD is a nice way of saying that the kid is delay with autistic tendencies.
Have you considered seeking a eval at your local children's hospital neuro unit?
I got my "offical" DX from our children's hospital here in Pittsburgh.
I'm not sure how far you are from here but I also have some other agencies that could benefit you like the Community Psychatrics (they have multiple offices) or The Autism Center.

Feel free to email me if you need any other help. Getting a DX will protect your child in the school system.
____@____.com

If you are in the Hershey Med area, try having her evaluated through Philhaven. Our now 17 year old had problems and we just couldn't get anyone to co-operate. She was diagnosed through Philhaven with ADHD and ODD. It can't hurt and it might be closer for you. Trust me, Hershey isn't the only place to go.

Maybe you can make an inquirie at the Good Shepherd Rehab facility in Allentown - their help desk phone # is ###-###-#### . . . they have a couple good pediatric neurologists on staff . . . perhaps they may even just know someone who is closer than Baltimore or Philly . . . a phone call can't hurt . . .

Their are doctors around here that diagnose it, check different agencies in area I know their is one in Indina.

I would recommend talking to your daughter's school psychologist about your concerns and ask to have her evaluated. They would probably contact the local intermediate unit or a local children's behavioral health agency. Or you could contact an agency on your own. Check the yellow pages for "children's behavioral health" or "autism services". Good luck!