Mine is Ben, age 12. He has Down Syndrome and a number of accompanying medical difficulties. Fortunately most of his big medical problems are reasonably repaired or under control. That situation of course only follows due to years of surgeries, medications, time in hospitals, wife and I becoming seat-of-the-pants medical experts, and so on.

Ben still has trouble speaking clearly enough to make himself understood, and he has some hearing loss. Developmentally he's about 4-7 (depending on what abilities you're looking at).

The big plus to Ben is his bright, happy, outgoing personality. And of course his indomitable spirit. This little guy can show love, give hugs, and smile through anything. I do think that his indomitability is largely responsible for him being alive. This is the kid who came out of open heart surgery and was immediately ready to get up and get on with life. We had to put boards on his arms and watch him just so he wouldn't pull out his tubes and wires and get out of the bed. What a trooper.

Tags: down syndrome, open-heart

Views: 211

Replies to This Discussion

Hi Cowgirl :-)

Those meds can take a long time to get right.

It doesn't help that the liver adjusts to some of them after a time (especially the SSRIs). With those, it is necessary take a specific "drug holiday" and try another family of neuroleptics for a while.

It doesn't help that kid's brain are developing fast, and what targets the problem area one month may not do so in a few months more.

It doesn't help that drugs are tested on huge groups of people but are expected to work equally on everyone. They don't.

It doesn't help that even disorders which fit neatly into the DSM categories (lots don't) can be caused by any collection of a whole smorgasbord of brain and neuro-chemical abnormalities. And it doesn't help that drugs which improve functioning in area of disability may worsen another area of disability.

It doesn't help that the dosage of a medication that works (for a month or two) is pretty much a trial and error thing (within the known therapeautic range, that is).

And then there is an almost endless range of possible drug combinations to try, plus a heap of known and unexpected side effects and a heap of interactions between drug and drug or drug and environment.

Ho Hum.

After much experimentation we finally found a drug combination that worked. Then we found a single drug that worked, and then a better administration of that drug. Then we found a version that overcome the compliance problem.

Finally, just when things had been stable for a while, Tristan deliberately missed several weeks of them - and we didn't notice. He coped so well we decided to leave it that way. His brain is maturing and he has found ways to compensate for the ADHD problems. Now it's the Asperger's stuff which is paramount.

We are lucky, though, that we only have one kid to worry about. Our neighbours, on both sides, have mutliple kids with problems. In fact our section of the street is quite a hot bed of kids with special needs. Now that our kids are growing older, and not running into trouble, or just running at breakneck spread anywhere and everywhere, we have a little more time to spend chatting to each other at the mail box.
And it doesn't help that there is no consesus for diagnosis OR treatment for child psyciatric disorders either.
I'm trying to find a therapist to help me work with our day-to-day issues and I'm getting nothing but conflict.
What medication is he on, Cowpunk?
For the moment, he's taking Abilify/Depakote, but it's starting to not work anymore, also he's 10 and needs to start managing his moods independently of his medications. Before that, he was on Risperdal for about a year and then that stopped working. We've tried every ADHD med available and every one of them triggers mania. So we're talking Lithium and other drugs that I've forgotten the names of ... and then there's the "off label" issue.
If he's bipolar then it is not surprising that stimulant medication triggers mania.
I have 96 men and women with severe and profound mental retardation (as well as most of them having other secondary disabilities, autism, down syndrome, CP, MS, etc.).

I am the administrator of 13 long term care facilities in NE Ohio. We provide 24 hour nursing and habilitation staff to all 13 homes (as well as own the homes). The are called Intermediate Care Facilities for people with Mental retardation (ICF's/MR).

Nice to be here.
Maybe it is my pessimism and my more than average procreational success but I seem to have more than one special needs offspring. The common thread is ADHD-PI and co-morbid social learning deficits.

My oldest son, Trevor, now 17 yrs, is generally making his own way. All my attemtps to bond with him (as a father) over the years have been unfruitful. He was identified with phonemic awareness deficits in elementary school. This was not too surprising as my father and brother have dyslexia. Has sensory-sensitivity issues and less than normal motor skills. Add to that the social learning deficits, self-defeating behavior habits, plus his splinter-skill profile of above/below averageness and he is a special need. I am just relieved that he isn't more angry or depressed than he might be otherwise.

My younger daughter, Timora, 13yrs, is very bright, very observant and has a very well-seasoned sense of humor. She was the first to get the diagnosis of ADHD-PI but not til she was 11yrs. Not hyper by any stretch of the imagination but has a very narrow focus of attention. Craves auditory and visual stimulation. Struggles in school to find the energy to do her assignments and more so to remeber to hand them in. Her wit is her genius.

Second son, Gavin, 11yrs. Normal pregnancy and delivery but developmental problems began to appear by age 2. A couple of evaluations pointed to autism. What a eye-opening learning curve. Numerous cognitive delays but flashes of brilliance. I have not been able to manage (or afford) any of the typical ASD therapies. We are lucky to be in a very good school district.

Third son, Aidan, 7yrs. An assertive and social young man. Unfortunately showing the social learning, sensory senstivity, self-defeating behavior patterns, and impulsivity seen in his oldest brother. Currently lagging neuro-motor skills and reading. Very obstinate.

All this is compounded by my wife's own, undiagnosed ADHD-PI and propensity for denial and self-deception. She thinks it is great that I have had the kids evaluated and that I go to support meetings and read about the conditions, etc. She listens politely and then goes back to things that hold her attention (parenting is not one of those).
This is a sad story, Jimmo. It sounds like several of your kids are also on the autism spectrum. Social skills deficts are a feature of Aspberger's and similar conditions but not generally of plain ADHD.

I am not familar with the PI acronym. What does it stand for?
BTW, the problem is unlikely to have anything to do with your procreative ability or propensity. It seems that there is a problem with the combination of genes which you and your wife pass on to the offspring since everyone of your children appears to have problems along the same spectrum. Either your wife's genes are extremely dominant or (and more likely) you have a couple of genes which magnify the problematic genes of your wife.

LeoPardus, do you have something to offer here? This is within your area of expertise, yes?

My advice would be to get genetic counseling before you put yourself in a position where you at risk of producing more children. I think your children could benefit from this knowledge also, especially if they are likely to procreate themselves some day.
I had originally intended to introduce my ten-year-old son, Keyan, as the only special needs individual in my family but after perusing the group a bit it seems I qualify as well; my son was diagnosed with Classic Autism at the age of four, I was diagnosed with Severe Inattentive ADD in my early twenties. (Thanks for that inheritance factor, chromosome 16! *grumbles*)

As with many other Autists, (both Classic and Regressive, though early diagnosis of Regressive Autism has greatly improved the last few years) I went through an ignorance based perdition trying to secure a diagnosis.

As an infant, I thought him deaf due to his complete lack of startle response when exposed to sudden loud noises. Hearing tests placed him within normal ranges and I was advised that he was merely "tolerant" and a "sound sleeper".

I asked that his hormone levels be checked before his first birthday simply because he smelled more like a teen aged boy than an infant. I was advised that he had abnormally high levels of testosterone and was likely to "be a handful" but there was no cause for concern. (To be clear, I don't believe Baron-Cohen's theories are scientifically sound - correlation does not equal causation.)

I brought him in again for evaluation at 18 months due to what I believed to be profoundly dysfunctional pain processing (very nearly non-existent) and was advised that he merely had a "high tolerance" and was reminded that he was a boy, which didn't insult my intelligence in the slightest. *coughs*

I brought him in AGAIN for evaluation at the age of three concerned about readily identifiable speech delays (he was completely non-verbal), accompanied by a highly unusual "babble" pattern - he mimicked only tone, pitch, and speed when babbling, rather than mimicking consonant and vowel patterns. I was AGAIN reminded that my son was a boy, though I would have thought the profound biological ignorance necessary to have missed such a blatant trait as gender in my own child would have been enough to have labeled me incompetent and reported to social services... but I digress..., and advised that his then four-year-old sister was the culprit behind his delay.

At the same evaluation, when informed of his seriously disruptive and self-injurious behaviors, I was reminded that I had been told he would likely "be a handful". *sighs*


Luckily, at the age of four I was able to have him evaluated by a local developmental preschool (The Tiny Tim Center) who referred him for evaluation by the state, who determined he classified for further evaluation due to severe sensory integration dysfunction, and was finally diagnosed by a specialist. Yeesh.

Six months after we began intensive ABA treatment he spoke his first sentence "Bye Mommy, I love you". *beams*


Whew... that was a lot more than I intended to say. Hello. *smiles*
What a horrid story of US medical tunnel vision and consequent incompetence. I am so sorry you went through all that.

Imagine the health cost savings if your son had been correctly diagnosed on the first or second presentation!

And you? It took a long time for you to get that vital diagnosis, also. How did the world handle you before that? What do you think might have changed or been avoided if you had been diagnosed in Kindergarten?

[I have wondered this about myself, too. I had a difficult time in normal school. It was not until I was in my mid twenties and my university went over to open book "continuous assessment" that I finally shone. My rote memory ability is quite weak and fickle compared with my comprehension and information processing abilities. I went from an average to poor examination candidate to a superior performer almost over-night :-) ]
My rote memory ability is quite weak and fickle compared with my comprehension and information processing abilities.

ME!
Sometimes I wonder if I would have been dubbed an ADD/ADHD ritalin kid had I been born later.

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