Gifted Issues Discussion homepage Forums Twice Exceptional Diagnosis changing - frustrated

So, after the neuropsych diagnosed DGS6 with ADHD-Combined, the developmental pediatrician has nixed that, at least for now. We had our appt with him yesterday and he says we are dealing with auditory processing and sensory integration issues and he believes a reactive attachment disorder, although he wants a child psychologist to confirm that as he is not one. He has been a developmental pediatrician for 40 years and is the first doc that got DGS to get through all the testing in a reasonable amount of time. He will see him again in November.

We don't have the full report yet. but many of his recommendations are the same as if DGS had ADHD. He is also going to refer us to an OT who specializes in sensory issues.

It is frustrating. Now, we are delivering our letter to the school to have them begin their evaluation process as well. 2e kids are nothing if not exciting.

The best thing about the visit though was that he talked to us about how to parent this kid of ours. DGS father was there, as well, so it was a very productive visit in that regard. The doctor also doesn't want to medicate DGS, at least until he is sure what we are dealing with. I just hope he send the school some really good recommendations.

leahchris

Leahchris, do you think the new diagnosis is a better description of what's going on from your point of view? Or does it seem like a technicality? Can you go back to the neuropsych to discuss these findings, or have the two docs talk?

Yes-- you need really good recommendations, in writing, as well as the name of the best local expert to follow up with for therapeutic treatment.

DeeDee

DeeDee,
The way the dev ped described it the symptoms are pretty much the same, but I know he has sensory issues and the neuropsych just sort of blew those off. So, yes, I think the new diagnoses are a better fit and I like the treatment options that he suggested like OT. ADHD is not ruled out forever and neither is ASD or Aspergers. He just wants to absolutely certain what we are dealing with, which I GREATLY appreciate.

It is just frustrating to think you have answers and then find out you don't. But, without a correct diagnosis, we cannot help him to live to his full potential and we cannot address the things that drag his self esteem down if we don't know what those are.

Thanks for the reply. It is nice to know that others have been through these types of things.

leahchris

How did he assess the auditory issues? My son just completed his CAPD assessment through our local hospital's audiology department. It took two visits - about 2.5 hours in total.

I was CERTAIN he had it - at one point (when he was about 6, actually) he had ALL the signs. However now (age 8) he passed the tests with flying colors - he blasted through them, actually - the audiologist commented that most kids take longer because they need breaks, etc., but he impressed her with his focus and on-task behavior. Even when he got bored and wiggly he was still compliant and attentive. (Fyi he's diagnosed with ADHD combined type and he's never been medicated).

The audiologist said that very likely he had an audio processing delay when he was younger, but not the true disorder (which is why he had all the symptoms at a younger age yet passes the tests now). She said that often times these delays are outgrown and the child simply needs more time to grow and develop. I can attest to that - the two years that have passed since my son was 6 have worked magic on him.

(We were also looking at SPD and ASD he was in KG - again, he's outgrown it those behaviors as well).

I think, personally, that changing diagnoses (been there, lol) are a reflection of a developing child. I never would have believed I'd be saying this a couple of years ago, but I think sometimes we tend to categorize things too quickly: Sometimes they just need a little more time to settle into who they really are.

Let me rephrase that - I think what I'm trying to say (and not doing so very clearly, lol) is that in our attempt to categorize their behaviors to get them help, it's wise to expect some changes because sometimes what looks like a disorder may actually just be developmental.

Still, I know it's not easy... hang in there

I snipped CCN's post for brevity but it absolutely bears repeating. I'll just add that most long-term psychodevelopmental diagnoses change and refine over the years. There's a tremendous amount of overlap of symptoms and signs for various things, and as a person's circumstances change, some of them are more evident than others. Throw in a developing child and you end up with multiple diagnoses, more often than not.
Example: at seven, the developmental pede basically looked at us and said "ASD vs NVLD...we could go either way, which one serves your purposes more precisely?" Now, at fourteen, we're pretty much at the point that, on even days I think my daughter's diagnosis was spot on, on odd ones I think we're somewhere else entirely.
This is why it's so desperately important, when putting together an IEP, to design it for the child and not the diagnosis. Schools are very fond of saying "well, autistic kids (or kids with ADHD, or kids with sensory issues, or crooked feet, or whatever) need this thing and this and this". What we need to be saying, though, is "Kevin does A, B and C and has difficulties with Q, so these three things, maybe not that one, and perhaps this one, changed up a bit, would be helpful for him."

CCN and Eldertree...yes, yes!

Please do your research on RAD. I am glad that he did not go ahead and label this as it is an extremely rare and potentially severe diagnosis reserved for only the most seriously "attachment disturbed" children.

I see many, many kids in my practice who have attachment issues, that sometimes we might informally label as "attachment disorders" due to their time in foster care, adoption, or changes in caregivers as young kids (parent dies, for example). However, in 15 years of treatment, the only kids that I have seen who truly fit the symtoms of RAD are few and far between. They come from horrifically abusive families, poorly-run foreign orphanages, warn-torn countries, or kids with severe illnesses that caused them long-term hospital stays as infants/toddlers (leukemia or multiple corrective heart surgeries, for example).

See article from Mayo Clinic: http://www.mayoclinic.com/health/reactive-attachment-disorder/DS00988/METHOD=print&DSECTION=all

Most parents seek treatment for kids with RAD because they feel unsafe with their children. Kids with RAD can be extremely violent with seemingly no regard for others. They have violent outbursts that seem to eerily shut off in a snap. Parents often are frightened by their 'calculating' nature, such as a child tricking a sibling to hurt themselves so they can have the computer for the night.

A child with RAD has never formed adequate trusting relationships with adults, and therefore must forage life with 'take or be taken' mindset.

Please seek an experienced psychologist or trauma specialist if you are considering RAD...I have seen it too casually flung about in the mental health community.

Attachment disorder covers a wide spectrum and comes in more than one flavor. RAD is rare, but milder forms of attachment disorder are not uncommon. I have a RAD niece, adopted from a neglect situation, and it is truly a horrible disorder; if your DGS were RAD I suspect you would see the signs yourself.

My gifted son, adopted at 7 months, had the anxious/avoidant style of attachment disorder that made him quite a challenge to parent as a toddler, but he did slowly respond to attachment parenting. Now age 9, I consider him securely attached though I suspect that there are lingering issues that never entirely go away. He is also in my opinion ADD, though I have not pursued a formal diagnosis for this because I do not believe it would be helpful at this time. (I am diagnosed ADD myself.) I would not be surprised if the AD and the ADD were related somehow, but I do not consider it important to clearly distinguish one from the other. His needs are his needs, regardless of category.

I used to be sure he had an auditory processing disorder. But nope - he passed. There's a lot of overlap in a lot of this stuff.

Thanks all for the insights. We are now looking for a good psychologist in our area with experience in attachment disorders. I don't think DGS has RAD, but we know he has attachment issues, due to abandonment by a parent. As for the CAPD, our pediatrician said they cannot do accurate testing until about age 8, as he is still developing.

But, as I said in my post, the symptoms are the main issue and all the providers have similar recommendations for the school, so I think we are all on the same page. The meeting with the school is not until later this month, though, so we will see if they are on the same page, as well!

Thanks again. I am feeling better about the whole thing.

leahchris

Not to hijack the thread, but I want to thank you for this post, which was helpful to me. I feel like my DD looks different almost by the day--right now the depression/anger seems much more prominent and I'm not seeing much of the ASDish stuff, and then I remember how she used have a lot of SPD symptoms that seem to have gone away almost entirely--and it can seem very dizzying. It's somewhat reassuring to know that others have a similar experience.

Be cautious about misdiagnosis with GT kids, it happens a LOT. Many if not most of those administering tests often have little or no training concerning GT children. Seek help from physicians that have an understanding of GT related issues is my best advice, they're much more likely to know the difference.

See the article in the link below:

http://www.beliefnet.com/healthandhealing/getcontent.aspx?cid=14303

I know my DS was diagnosed ADHD at an early age, I just wasn't buying into it based on knowing him much better. While he showed symptoms of ADHD until about 9th grade, each year he showed less and less as he became more challenged (engaged) and was around his own peer group on a more regular basis.