How did you diagnose your child with something?

[iluvmy4blessings]

I see so many people stating what their children has whether it's ADD or some other learning disability. Did you self diagnose this based on personal reading or did you take them to a psychologist of some kind? I'm trying to figure out what is going on with my daughter and wondering how to determine it.

[specialmama]

My son was dx'd by both a Paediatric Neurologist and a Child Psychologist who specialized in dx'ing developmental disorders. Of course, we knew something was wrong and that is why we had made those appointments. As we waited for the appointments, we did research and knew he had autism. So I guess I can say "both", and the pros just confirmed it and enabled us to access services.

[elise1mds]

My story roughly mirrors specialmama's. For DS, I was in denial for a long time. When he went to preschool, he was constantly in trouble and could never manage to keep his hands to himself. About the end of that school year, I asked one of the teachers (who has an ADHD son herself) if she though he might have ADHD. She nodded so hard I thought her head might fall off. We visited the pediatrician and then a psychologist (who had the office pediatric psychiatrist score the tests) to get the more formal diagnoses of ADHD as well as Asperger's. For DD, I read everything I could to try to figure out what on earth would be causing all the violence and three-hour-long rages before heading to the pediatrician and pediatric psychiatrist, who have since confirmed my suspicion of bipolar disorder.

[peacefully]

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[dsmith]

We knew something was going on with ds, but not what. Our pediatrician suggested Aspergers as a possibility. We took him to a pediatric neurologist that specialized in ASD, ADHD, etc. and got an official dx of Aspergers.

[EKS]

I self diagnosed based on tons of reading but then had professionals confirm it. If for nothing else, it's important to have an official diagnosis if your child is going to need accommodations for college admissions testing down the line (and other things too, but this is can be important even for folks who are trying to avoid labels). The College Board likes to see a history of disability, not a disability that was first diagnosed just prior to requesting accommodations.

 

ETA: My son was diagnosed with vision problems requiring vision therapy by a developmental optometrist; auditory processing disorder by an audiologist; SPD and motor planning problems by an OT; Aspergers by a psychologist (later reversed); dyslexia, dysgraphia, and dyscalculia by a neurologist and internist specializing in LDs; ADHD by our pediatrician, and giftedness by another psychologist. In that order. It's been a long road. Now I just say he has dyslexia and ADHD as those seem to cover it.

Edited August 11, 2011 by EKS

[rantan]

I'm from a small town so for us it was our family physician that referred us to a child physchologist who made the official diagnosis.

[NittanyJen]

With my son, I *Knew* in my gut there was more than met the eye. Our pediatrician kept telling me to relax and "just enjoy my quirky kid." ChildFind said he was normal, but I noticed major discrepancies between their evaluation and reality.

 

I finally went to another doctor-- a highly respected neurologist who runs a neuromotor clinic and had access to geneticists to consult with-- and got a proper dx of his genetic disorder-- it took 4 1/2 years, and one round of blood work, and one office visit to the correct person.

 

Parents cannot self-diagnose properly-- there are too many disorders with too many overlapping symptoms-- in fact, my former boss has had many patients who had DOCTOR diagnosed autism, and had to explain to the parents that their child did NOT have autism spectrum disorder, but something else that simply looked like autism (she is a specialist in that specific field); or a parent who had "self-diagnosed" by reading a lot and was really insistent until a genetic test had finally reveled the real problem (and thank goodness, because of the medical implications of the real problem) that was either comorbid with ASD, or which presented with ASD-like symptoms. (sometimes there is no real difference there; sometimes there is, as the disorder's symptoms can be easier to treat than true autism, and the child's speech, behavioral, and social issues may respond more readily to therapy once the underlying disorder is understood).

 

Even dyslexia, dysgraphia, and the like may simply be symptoms of another disorder, and issues such as true dyscalcula are far more rare than parents report, upon formal testing (less than 10% of the population actually has that one); how your approach your child's learning situation may change with a correct diagnosis.

 

The heartbreaking issue, of course, is that some parents simply cannot afford testing, or don't seem to have access to it, either due to finances, distance, logistics, or their own emotional barriers to it (distrust of the medical establishment, belief that nature and nurture will cure all things, insurance or gatekeeper physician issues (referrals, uncooperative primary care)). I wish any kid who needed it could simply get the needed testing. It's not just a case of curiosity-- the correct dx for something as innocuous as low muscle tone and delayed onset of reading could actually have implications for heart issues, endocrine disorders, entering puberty correctly, bone problems, etc.

 

***The good news is, most kids are perfectly fine, develop at different rates at different things and are normal in doing so and don't need any medical or special intervention. The good news is, I have found that if you are the type who can be really honest with yourself and learn to trust your gut, you are a pretty good guide-- if your instincts are just screaming, "This is not right!!" then keep pursuing answers; you are your child's best advocate, and your brain may have noticed something it can't put into explicit words; you are smarter than you think. But the reality is, you cannot diagnose your own child, and neither can anybody on a message board, no matter what dx their own child has, no matter their qualifications or experience, or what books they have read.

 

In my case, sure, I was right that there was something more to my kid than just being behind the curve developmentally (among other things, I knew he was super smart-- testing has borne this out-- but unable to express it to anyone somehow). In fact, I had mentally settled on one diagnosis. Ironically, not only was I wrong, but the dx turned out to be something I had spent an ENTIRE SEMESTER studying in a graduate course in human genetics!! Yet it had never even crossed my radar screen as what was happening with my son, even though it absolutely explained everything! D'oh! :)

[Misty]

My oldest daughter was diagnosed with TS & OCD by a pediatric neurologist when she was 8. Then she was diagnosed with mild Asperger's, OCD (again), and ADHD by a psychologist a few years later.

 

My middle daughter was diagnosed with Asperger's by a child psychologist and then again by a neuropsychologist the following year. She was diagnosed with auditory processing disorder at a speech and hearing clinic.

 

My 3rd daughter was diagnosed with Asperger's, severe OCD, ADHD-combined type, and NVLD by a child psychologist.

 

If your child has issues, you might just ask your pediatrician for a referral to someone who can evaluate and diagnose.

[amo_mea_filiis.]

My son has been mommy-diagnosed and confirmed with Drs.

 

The biggest problem we faced was either the Dr didn't take the time to really look at him, or we were all wrong.

 

Ds was diagnosed PDD-NOS when he was 3. I knew something was going on, but wasn't sure what. The developmental ped said PDD-NOS, but didn't really take the time to go through his history.

 

When he was very little, I knew he had a motor problem but no one would listen. Most Drs just said he was a boy and boys are slower. Or a Dr would seem concerned, but a first run test would be normal. Like at the orthopedist (sp?), he knew something was going on, but when the xrays were normal he said ds was fine.

 

After over 6 years of Dr jumping and no *good* diagnosis, we went to a children's hospital. There he saw a diagnostic pediatrician, cardiologist, pulmonologist, and neurologist. We tried to include GI, but they were terrible with the schedule.

 

Cardiologist ruled out any problems which sort of confirmed that he just has some strange, but not unheard of symptoms with his asthma. Pulmo said we could mess with his asthma meds to confirm that diagnosis (but only for me. He's confortable with an asthma label). Dx Ped addressed the GI area and said ds absolutely must have reflux, and I need to work to get him off pediasure. Neuro was the best of the best and agreed that any flavor of PDD was not the right fit. She said he more than likely has mild cerebral palsy which explains every little thing he's got going on.

 

The only piece left to explore is his terrible sleep.

[wapiti]

I agree with the others - it's always good to read about the possibilities, but official diagnosis must be through professionals. There are too many overlapping issues.

 

I strongly recommend the Eides' The Mislabeled Child, among other books. In addition, for some issues, it may make sense to rule out vision problems as well.

[Dobela]

I agree with the others - it's always good to read about the possibilities, but official diagnosis must be through professionals. There are too many overlapping issues.

 

I strongly recommend the Eides' The Mislabeled Child, among other books. In addition, for some issues, it may make sense to rule out vision problems as well.

:iagree: For my son we began with the pediatrician because referrals to other specialists had to be from him in order for insurance to pay.

[Laura in NC]

My ds8 was diagnosed with SPD from an OT and with Dyspraxia from a vision therapist and tutor. My dd10 was diagnosed with SPD by our county services at 18 months of age. We were referred there by our Pediatrician. I hope this helps.

[rafiki]

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[AngieW in Texas]

Mine were all initially self-diagnosed by me, but they all have official diagnoses now.

 

We knew the oldest was ADD from a very young age. She was so hyper even in the womb that I thought I was going to end up with a broken rib (there are reported cases of this happening). She got her first official diagnosis at 11yo. I was surprised that he diagnosed her with just ADD-inattentive, because I was pretty sure there was more going on. As she got older, it became clear that she didn't just have Aspie tendencies, she was actually Aspie. She got her official diagnosis of ADHD (combined type, not just inattentive) and Asperger's on her 18th birthday.

 

The middle one had global delays from infancy. As a toddler she looked like she was full-blown autistic. That improved a great deal when we corrected her auditory processing delay at 4yo. And improved even further with OT at 5yo (and that took care of almost all of her other delays as well). She got her official diagnosis of Asperger's last month. She was having some issues in her cc class and I thought an official diagnosis would be a good idea.

 

The youngest has issues with anxiety and depression and that's what her official diagnosis was back in April. She also has dyseidetic dyslexia and visual processing issues (used to have visual efficiency issues also, but remediated all of those). Her official diagnosis was gifted with severe learning disability affecting all academic areas, but worst in reading and written expression. Now she presents as just average ability and average academics. She is actually stronger in reading and writing than other areas now, but she struggles with math.

 

I should say that the diagnoses the girls all got in the last few months were all done by the same diagnostic psychologist.

Edited August 12, 2011 by AngieW in Texas

[Hwin]

My son was diagnosed by a developmental pediatrician. The referral to that specialist came through Early Intervention.

 

To be honest, we weren't expecting a diagnosis. He was not even 2 1/2 when we learned he had Asperger's, which is very much on the early side. However, it's proven to be an accurate dx thus far, and, up until the last year, the services he's received have fit his needs.

[swellmomma]

With the first I knew something was wrong and started pursuing dr's etc. As time went on he got further testing and started getting his list of Dx. While working with 1 shrink about ds she noticed dd's behaviour so between her and the school(the kids were in ps back then) we ended up getting dd Dx too. With ds7 it is more of a guess by myself and the ped. He has not undergone testing yet, but given the family history, his issues etc we both speculate it is adhd. As far as his speech goes he has been working with SPL's since he was 3 years old, I got a referral to one when he was still nonverbal at 3. His bowel issues have been monitored by the ped since 4 months of age.

 

So it has been a combination of suspecting something was off, getting the referral to teh appropriate person to do testing and confirm. with the occasion self diagnosis tossed in.

[Carrie12345]

I pretty much internet-diagnosed my oldest (Aspergers) at 4, got a way-too-casual confirmation from my pediatrician, then spent 9 months having thorough evaluations done at a child development center.

 

I've diagnosed my 8yo dd (ADD/dyslexia/dysgraphia) based on MY (multi-dr-confirmed) ADD dx and what I've learned about the other stuff through 9 years of researching neuro issues, and have discussed it with her (different) ped, who agrees with my assessment.

If/when we decide to medicate/seek professional help, we'll set her up for full evals with specialists.

 

In the meantime, we're doing pretty well on our own.

[SkateLeft]

My son was pre-term, and had red flags from birth, so we were referred to a developmental pediatrician right away, and received initial evaluations through Early Intervention. We also saw a neurologist, neuropsychologist and audiologist. At two, he was hospitalized for testing.

 

His actual diagnosis was NOT what I would have expected, so I'm very glad I did not self-diagnose, as he has an underlying medical issue. We'd have lost a lot of valuable developmental time.

 

His primary diagnoses come from his neurologist, neuropsychologist and developmental pediatrician. He also has diagnoses from his OT and SLP.

 

But he's just himself. The labels help him get the services he needs, but they don't define him. :)

[Beth in OH]

I self-diagnosed dd as high maintenance and high ability. During age 16-18, I began to believe there was much more than high maintenance going on. I did lots of reading and supplied her with ideas about how some of her behaviors and struggles also qualified as symptoms of certain disorders. At age 19, dd wanted her life to improve and worked with a psychiatrist to diagnose ADHD. I merely facilitated. Dd, as an adult, has worked with her doc to decide on a treatment plan.

 

I would have happily taken her to a pdoc years earlier. She would not have been compliant. My only regret was not suspecting and investigating earlier, when dd was still a pre-adolescent. I think we might have been able to avert some crummy consequences.

[suzziesnowflake]

A child Psych. I knew something was wrong before he went to ps, then in kinder,1st, 2nd, 3rd-until I threatened to sue the school if they didn't send him for an eval. Yep, eval came back dyslexia, dysgraphia, and fine motor skill defficit on the right side (:001_huh:). That one blew me and dh away but it explained somethings. Goodluck!