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-   -   How did you get a diagnosis? (http://www.mothering.com/forum/157-special-needs-parenting/1365621-how-did-you-get-diagnosis.html)

tm0sweet 10-13-2012 11:57 AM

My 3yo has been recieving therapy since he was 15 months. He has many delays and behavioral problems that I believe are all sensory based. We have seen numerous doctors and called too many psychologists to count and they all respond, "oh, he's too young to diagnose with anything." right now he's in the developmentally disabled category, which to me means nothing. I really want a more specific diagnoses so we can get his treatment catered to his exact needs but no one seems to be able to help us! We constantly get referred in circles and I'm so tired of it.

How were you able to/who diagnosed your child and at what age? Everyone keeps saying early intervention is key but no one seems to be willing to intervene!

Bokonon 10-13-2012 12:50 PM

I am so sorry you are going through this.  It's SO frustrating.  I've been going in circles trying to get my 7yo diagnosed for about 6 months and am finally making some headway, but it's been many phone calls, lots of appointments, and lots of frustration.

 

Is your DS in occupational therapy? Have you contacted early intervention or Birth-3 in your county if you are in the U.S.?


Peony 10-13-2012 01:13 PM

My 3 year old was dxed not long after his 3rd birthday. We ended up traveling across the state and going through a child development center at a children's hospital. First step was a developmental pedi there that narrowed down the issues and then from there, DS1 has seen 3 other specialists in his different areas through the hospital. He was dxed with PDD-NOS from one. Similar background here that DS1 had been in EI since 19 months of age, and we were not able to really figure out what exactly was going on. I had to be VERY persistent to take the route that we did. All of his therapists, private and school based, did not agree that there were larger issues going on besides a "developmental delay". I am very glad that I did receive multiple excellent evals and finally ended up with a diagnosis that I do feel is correct. As DS1 continues to get older, it is more and more evident that there is more going on then just developmental delays. I completely agree with his diagnosis at this point in time. 


tm0sweet 10-13-2012 01:22 PM

He sees a private OT, he was seen by the EI (birth through 3) OT, and also sees an OT through his preschool. We were seen at the developmental disabilities clinic through children's hospital a couple years ago and were just referred to MORE therapy. Is it worth it to try to go back to the DD clinic? He has had more evaluations in the last 3 years than I can count so I'm skeptical that more evals will do much.

Bokonon 10-13-2012 01:40 PM

Quote:
Originally Posted by tm0sweet View Post

He sees a private OT, he was seen by the EI (birth through 3) OT, and also sees an OT through his preschool. We were seen at the developmental disabilities clinic through children's hospital a couple years ago and were just referred to MORE therapy. Is it worth it to try to go back to the DD clinic? He has had more evaluations in the last 3 years than I can count so I'm skeptical that more evals will do much.

 

I think the clinic would be worth it, because now that he's older, it may yield more information.  A clinic like that at a children's hospital is probably the best place to get an evaluation.  I'm fighting tooth and nail with my insurance to let DS get evaluated at the developmental clinic, because they have denied it for sensory issues because at 7 years old, they consider that under behavioral health - but they won't tell me who CAN evaluate him!  :(

 

Sorry to make this about me, LOL - my point is that if you feel stuck, use all the resources you can while you can, because as they get older, it can often get more challenging, as some of my friends and I are seeing with our elementary-school aged kids.


Bokonon 10-13-2012 01:41 PM

Quote:
Originally Posted by tm0sweet View Post

He sees a private OT, he was seen by the EI (birth through 3) OT, and also sees an OT through his preschool. We were seen at the developmental disabilities clinic through children's hospital a couple years ago and were just referred to MORE therapy. Is it worth it to try to go back to the DD clinic? He has had more evaluations in the last 3 years than I can count so I'm skeptical that more evals will do much.

 

So the private OT hasn't diagnosed him?  What does s/he think the problem is?


Peony 10-13-2012 05:37 PM

A couple years ago would be been age 1 I'm guessing. At that age, yes, I'm not surprised that they referred him back to more therapy. It gets "easier" to get a diagnosis the older they get. I specifically waited until DS1 was past his 3rd birthday just because of that. Of course we got referred back to more therapy, but at least with a specific diagnosis in hand!


mopdop2000 10-15-2012 08:44 AM

We had a similar expereince. DS2 started therapy at 18 months, and I started the process of finding the underlying problems.Since he is adopted, the EI therapists all said it was due to that and learning a new language, but I knew it was more.  Afer doing a brain MRI, which came back clear, the pedi neurologist suggested the child development clinic at childrens hopsital.  DH took some convincing since it's a 5 hr drive from where we live, but we saw them when DS2 was 26 months.

 

Can I tell you how much I love them? They diagnosed him with autism and suggested blood work for Fragile X Syndrom, which he has. We go back to see this Dev Ped up there every year and she continues to be the Dr who I feel really gets his whole picture. Thankfully our local Pedi is open to working with Dev Pedi :)

 

Anyway, I would go back to the childrens hospital clinic now that he is older.


APToddlerMama 10-15-2012 10:14 AM

Quote:
Originally Posted by Bokonon View Post

I think the clinic would be worth it, because now that he's older, it may yield more information.  A clinic like that at a children's hospital is probably the best place to get an evaluation.  I'm fighting tooth and nail with my insurance to let DS get evaluated at the developmental clinic, because they have denied it for sensory issues because at 7 years old, they consider that under behavioral health - but they won't tell me who CAN evaluate him!  greensad.gif

Sorry to make this about me, LOL - my point is that if you feel stuck, use all the resources you can while you can, because as they get older, it can often get more challenging, as some of my friends and I are seeing with our elementary-school aged kids.

This is a long shot, but are you certain your behavioral health benefits are under the same insurance as your medical benefits? I only ask because I had a moment of complete panic a few weeks ago when I called BCBS to find out if my son would be covered if he gets an ASD diagnosis. They said no. I hung up, started freaking out, and then realized that fell under behavioral health and my husband's company has a different provider for that. Called and it's covered.

Also, is your son seeing an OT? They can be creative in their billing and it isn't billed under behavioral health. Insurance is picking up for us.

Bokonon 10-15-2012 11:22 AM

Quote:
Originally Posted by APToddlerMama View Post


This is a long shot, but are you certain your behavioral health benefits are under the same insurance as your medical benefits? I only ask because I had a moment of complete panic a few weeks ago when I called BCBS to find out if my son would be covered if he gets an ASD diagnosis. They said no. I hung up, started freaking out, and then realized that fell under behavioral health and my husband's company has a different provider for that. Called and it's covered.
Also, is your son seeing an OT? They can be creative in their billing and it isn't billed under behavioral health. Insurance is picking up for us.

 

Yes, it is.  They just cover different providers for behavioral than medical.  Which means Children's Hospital is out, which is ridiculous IMO!

 

He's not seeing an OT (yet) because insurance is requiring a diagnosis to get him covered for OT, and I have had the worst time trying to find someone who our insurance covers that can diagnose SPD, and our insurance provider won't help at all.  He's getting evaluated at school too though, so he may be able to get OT through the district.  Right now I'm just waiting for all of his evals to be finished and see what the school approves.  He saw a neuro last week who said he definitely has "abnormal sensory integration", and the OT that we had an eval with is recommending the Alert Program (How Does Your Engine Run) for self-regulation, which I think will REALLY help, and I am waiting to see if insurance approves that.  Otherwise I might just pay out of pocket for that program.


APToddlerMama 10-15-2012 01:11 PM

Quote:
Originally Posted by Bokonon View Post

Yes, it is.  They just cover different providers for behavioral than medical.  Which means Children's Hospital is out, which is ridiculous IMO!

He's not seeing an OT (yet) because insurance is requiring a diagnosis to get him covered for OT, and I have had the worst time trying to find someone who our insurance covers that can diagnose SPD, and our insurance provider won't help at all.  He's getting evaluated at school too though, so he may be able to get OT through the district.  Right now I'm just waiting for all of his evals to be finished and see what the school approves.  He saw a neuro last week who said he definitely has "abnormal sensory integration", and the OT that we had an eval with is recommending the Alert Program (How Does Your Engine Run) for self-regulation, which I think will REALLY help, and I am waiting to see if insurance approves that.  Otherwise I might just pay out of pocket for that program.

Why can't the OT who evaled him diagnose? Will insurance not accept that?

Bokonon 10-15-2012 01:46 PM

Quote:
Originally Posted by APToddlerMama View Post


Why can't the OT who evaled him diagnose? Will insurance not accept that?

 

No, apparently not at that clinic - they assess and then refer to the developmental evaluation clinic for thorough testing to get a diagnosis, but that was denied because he was referred for suspected SPD.  It's ridiculous.  I can guarantee that insurance has spent more on all of the other specialists we've seen than they would have if they just approved the testing to begin with, but the silver lining is that we've gotten answers that have been helpful that we weren't expecting.  It's been a long road but we are seeing the light at the end of the tunnel.  I think!


fizgig 10-15-2012 02:00 PM

I'm glad you are getting somewhere! :)

 

After going through something similar I strongly believe that the ONLY people who should attempt to dx young children are developmental pediatricians (ideally with a team of professionals who can participate in an eval).  The vast list of things that can cause developmental delays, coupled with the fact that many causes can have similar, overlapping, and complex symptoms, means that you need someone who really can look at the big picture, including medical and behavioral. 

 

A child psychologist can only really assess a small subset of developmental issues.  An OT or speech therapist have no medical training and no ability to determine if there is a larger medical issue happening.  OTs and SLPs might have a lot of experience but their narrow area of specialization leaves large holes in their knowledge about the possibilities.  Don't get me wrong, I love the team of professionals working with our DS, but they are each trained to do one specific thing and should not be relied on to create a broad plan for your child. 


Peony 10-16-2012 09:16 AM

Quote:
Originally Posted by fizgig View Post

I'm glad you are getting somewhere! :)

 

After going through something similar I strongly believe that the ONLY people who should attempt to dx young children are developmental pediatricians (ideally with a team of professionals who can participate in an eval).  The vast list of things that can cause developmental delays, coupled with the fact that many causes can have similar, overlapping, and complex symptoms, means that you need someone who really can look at the big picture, including medical and behavioral. 

 

A child psychologist can only really assess a small subset of developmental issues.  An OT or speech therapist have no medical training and no ability to determine if there is a larger medical issue happening.  OTs and SLPs might have a lot of experience but their narrow area of specialization leaves large holes in their knowledge about the possibilities.  Don't get me wrong, I love the team of professionals working with our DS, but they are each trained to do one specific thing and should not be relied on to create a broad plan for your child. 

 

 

I highly agree. DS1 isn't the first kid that we've done this for, meaning the whole evall process, last time with DD1, we did not see a developmental pedi. We saw private OTs, even traveled to well regarded OT center, saw psychologist after psychologist, eventually went on to get her learning disabilities dxed through a whole other set of professionals. Eventually the child ended up with three different coexisting dxs. Some are accurate, some may not be. Several years after all of that and having gone through a developmental pedi for DS1, I wish that we had done that for DD1. We still could I guess. I still don't feel that we ever had a accurate handle of what really goes on with her because everyone just looks at separate pieces of the puzzle. The developmental pedi for DS1 who also has several issues, looked at ALL of DS1 and then referred out from there. We were still piecing things together but with a team approach and everyone was on the same page because the developmental pedi was leading his care. 


anj_rn 10-16-2012 12:34 PM

Some insurances require a MEDICAL diagnosis for OT & PT services.  However, developmental delay, is a medical diagnosis (even though it is a rather obvious one).  You can always ask your regular ped to refer to OT/PT for the delay, while waiting for a more extensive eval from a developmental ped.

 

Over the past decade, they have found many kids with incorrect diagnoses, who were diagnosed early in life.  the current trend is to not give a specific label until the child is old enough to be tested, or meets specific criteria, especially for the non-medical diagnosis.  In all honesty, even with many specific diagnoses (and we have a lot), I think our therapists still work on the same things they would without them,


tm0sweet 10-22-2012 06:04 PM

Thanks for all the input. It's so nice to know I'm not alone and there are other mamas fighting similar battles.

As to why his OT won't dx him--I've been given the impression they just treat the problems they see without concern for WHY the problems exist. I've never even heard of a developmental pedi! Why isn't this type of info handed to parents as soon as a delay is recognized?! Gah the system is driving me nuts!!

*sigh* thanks for dealing with my rant. I'm thinking I'll try to contact the DD clinic again now that he's older.


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