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: 205

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Angie, welcome to the club!

I relate so well to your tales of early misdiagnosis. It's so cruel. Yes, I have a couple of "expert medical practitioners" that I would love to slap. I managed to do so in words to most of them. This really surprised me because, until this time, I was generally extremely tolerant and nice to everyone, even when they were screwing me stupid. Having a child with special needs cured that. Now I am one of those "angry baby eating atheists" we've heard so much about. :-) (Translation: I am a lot more assertive than I used to be because I now have to fight for someone else's needs.)

My son's lack of ability to be tiolet trained got diagnosed as a mental disorder as soon as he was old enough to qualify for this diagnosis (4). The pediatrician told me that his problems stemmed from our "chaotic lifestyle" and "poor toilet training methods". She relabeled my claim to be exhausted as "depression" and sent me to a psychiatrist.

A year or so later I was diagnosed with gall bladder disease (after I visited my old doctor in another town) and got shipped off for surgery ASAP. The surgeon reported that the infection had been so bad, and so prolonged, that I had permanent gut adhesions as a result. I still have problems because of this failure to diagnose me correctly for so long.

The paediatrician decided to admit Tristan to the hospital so that the staff could tiolet train him properly. She did not listen when it was explained that the experts consulted by my son's child care center had also failed. After he'd been there a week the staff found that things were not as easy as they imagined. They removed my son's diapers so that the would be aware of the passage of feaces. This failed dismally and the staff had to clean out whole rooms which he had soiled. I had to smile.

When they decided to discharge him (and that's another funny/sad story) he had developed enuresis as well as encopresis (wetting as well as soiling). I was so angry I ripped the Paediatrician apart in front of her Intern for not only failing to cure my son with her "expert" methods but creating additional problems as well. She excused herself on the grounds that the training had been done in a hospital instead of in the child's own home, as it should be. I reminded her that she considered the hospital to be less "chaotic" then she imagined our house to be. She recommended that I take a class on toilet training children and try again. I reminded her that I was a clinical psychologist who was qualified to teach such a class and that I had far more training in social behaviour and learning techniques then the five minutes which she was given in medical school. I then proceeded to give her a medical lecture on NIDS, which she proved to know little about, as a possible alternative explanation. Her intern was standing behind her all this time trying unsuccessfully not to smile. I think she was enjoying seeing her boss squirm. I have no doubt she was a difficult person to work for. I am sure that I was the topic of tearoom conversation in the Intern's lounge that day.

Other stories about this woman surfaced shortly afterwards. One of my colleagues, upon asking me for the name of this woman, snorted heavily and told me that she had nearly killed one of their children from incompetence. I reported the woman to the local medical board and to the hospital where she worked. (There was a whole lot more to this story which I won't bother you with as your hair is probably standing sufficiently on end already. ) She managed to wheedle out of it on a technicality.

At least I gave her a scare and a black mark in her record. I left this city ten years ago. Perhaps someone has got her removed from her post by now.

Now let's get back to you and your son.

Your description sounds a lot like an autism spectrum disorder to me. They are often hard to diagnose in the early years, especially as they are so varied in their symptoms. There is a saying among people who work with such disorders: If you have seen one autism spectrum disorder, you have seen one autism spectrum disorder.

The important thing, in your case, is that your son's difficulties have been acknowledged and he is getting expert help for his symptomatic problems. Regardless of what diagnosis he eventually receives (and expect to go though several of them), the best treatment is likely to be exactly what he is getting.

How is his GERD?

And how are you coping with all of this? Do you have friends or family who can help take the load off you? Do you get time to do things for yourself? Have you progressed to the point where you can sit in the bathroom without worrying that your child is getting into serious trouble, hurting himself, killing himself, absconding or writing all over your walls?

Talking of writing on walls, what do you do with a precocious three year old who writes "I love you" all over the freshly plastered walls of your new house? And then draws pictures of you and him and his dad to punch home the point? We elected to leave it there until we were about to move to the US, then take photos of it all before having it painted over. We had to complete our packing while the painters were at it. Arrggg! Not recommended. I never got to see the finished job so all I remember is those Tristan-decorated walls.
I didn't even mention the Indian male pedi who saw us for 5 minutes at the first appointment when Ethan was 12 months old, and then spent the next hour trying to "educate" me on how "dangerous" breastmilk was (he seemed to think it had reached an expiration date inside my boobies 365 days past birth) and that my son and I would never have a healthy relationship if I continued to nurse because I would be "his cow". These are the gems you get with Medicaid. Needless to say, I reported him also. Actually, last I heard from other mommies, he and the first one who misdiagnosed thrush are both facing deportation (here on medical work visas, and have each acquired multiple complaints).

I accept the possibility that Ethan does fall on the spectrum. I also know that as a child I myself exhibited most of these behaviors. I've been diagnosed with OCD as an adult (no medical care as child due to quacky religion), and there are some similar traits and tendencies. I'm pretty much waiting to do more invasive/extensive testing. For now he gets 2 annual complete developmental screens and updates to his IEP. As long as he is progressing - at whatever pace - and is overall healthy and happy, I can deal. Also, I just learned a few weeks ago that he'll be in the summer program for half days 4 days a week (I can't say it's a "godsend" but uh, a No-child-left-behind send?)

GERD is almost entirely gone. I had him tested for every food and environmetnal allergen imaginable and he has none, but as an infant his stomach wasn't producing enough of the digestive enzyme to break down dairy. So we use a lot of soy in our mac and cheese. He's largely outgrown it though and has been sleeping in a real bed for about two years. I think he has Restless Leg Syndrome though, because there are times he seems to be in pain if I lay him down flat, but he's alright if he falls asleep in the stroller or high chair. It's next on the giant research file and doctor badgering list. All that is to say, he has his own queen size bed in the den.

Help? What's help? My family is... well, if I hadn't lived with them for 17 years and could possibly kill them for organs later on, I probably wouldn't talk to them. Needless to say, they're not lining up to volunteer to watch my son. (My sister will do it for $10/hour - my OLDER sister, who has a kid AND a husband AND an income.) I have one stay-at-home mommy friend who has just started helping me out. Her son is only a month off from Ethan and they're good buddies. Plus she has kittens so Ethan doesn't even say goodbye when I drop him off there. He's stayed over twice now and didn't want to come home at the end of it, so I look forward to accepting as much help as she's willing to give. In exchange I share my food stamps with her if she runs out before the end of the month, since we usually have a little bit left over that I try to save up for birthday parties and such. But yeah, I don't bathe everyday. I always *intend* to, but sometimes I'm so exhausted I fall asleep right along with him at story time, and neglect the whole personal-hygiene thing.

And I just have to say "Aw!" about the wall writing love. They sure do know how to sucker us. One of my son's newest (and clearest) phrases is "Dake ew Mommy" (thank you mommy).
Ha. My incompetent pedi was of Indian descent also. Medical training is rather variable in that country and arrogance seems to be a trait of those who got the worst of it. Australia is usually pretty good at weeding out the bad ones, but somehow that one slipped through.

I also recall a female psychiatrist, trained in India, who was not only incompetent but unethical as well.

To put that in perspective, as it should be, I worked with some top notch Indian trained medicos in Australia. Wonderful people!

Indian medicos are a little like US chiropracters - they range from fantastic to truly dreadful.
Tristan also seemed to have a milk intolerance in the early years. Breast milk was OK (what I could produce of it) but cow's milk was not. We fed him on soy supplement from day two in the special care nursery.

He seems to be OK now, judging by the rate at which the chocolate milk disappears in the fridge.
Tristan was an extremely restless baby. We had to put him in a MeatSafe Cot so that he would not fall out. (We decorated it with heaps of interesting things for him to look at and interact with so he didn't mind.)

I recall babysitting for a friend's kids. I was stunned when they both slept on the same bed and barely moved for two hours. Tristan would have been at the other end of the bed in five seconds and have rolled off in five minutes.
Lactose intolerance; yep; daughter had that. Took us a while to figure it out. Once we did LactAid took care of it. We had rice milk too, which everyone loved. She grew out of it and can handle milk fine now.

Gotta watch Indian docs. In my field of biomed research, if you see Indian names on a research paper, you check to see where it was done and what non-Indians were part of the team. ANY paper done in India is suspect. If all the authors are Indian, the paper is worthless. This holds for other fields too. (A friend of mine in geochemistry tried to do work with Indians. It was not possible.) Frankly it's their religion (Hinduism). It utterly discourages reality. .... Take home message: if you see an Indian doctor, just look for another. A few are good, but it's hardly worth the effort to find out. Not that Westerners are always great. There's one "surgeon/butcher" whose hands I will break if I ever see him again.

Sorry your kid-sitting situation is so hard. Maybe there's some sort of single moms group/co-op around your area. Just a thought.
Leo:

I relate to your thoughts on research papers by Indians. My second (specialist) dissertation was on the cognitive changes accompanying long term marijuana use. The worst paper I came across (which actually supported my eventual findings) was written by a group of Indians. It was screamingly unsound methodologically.

I don't share your near-blanket condemnation of Indian trained doctors. As I said, my experience of them covers the range from excellent to woeful.

Our group's experience of early lactose intolerance in our special needs kids is rather interesting. Any clues about the reasons for this? Is it just cooincidence, or is there some gene-mediated connection between autism spectrum/down's sydrome and a particular and time-dependent allergy to cow juice?
No link that I'm aware of. BTW the lactose intolerant one was my daughter, not my DS boy, Ben.
That's comforting :-) Positing a link between lactose intolerance and both A S Disorders and Down's seemed a little far fetched. I will ask around the parents of the kids at Tristan's school and see if there are sufficient "dings" to suggest there might be a link that is worth reseaching.
Actually Ethan's issue isn't lactose. I tried lactose free milk and he still blew chunks from it. He wasn't making enough enzymes to break down the milk protein whey. (Lactose is a milk sugar, not protein.)
Hey Leo, the rare and beautiful!

How about some photos of your happy boy? I'd love to see them.

You, too, Brad and Angie.
Hi all! Glad to have this group here.
My son definitely has a psychiatric disorder, and for the moment his diagnosis is ADHD/Bipolar. The last ten years of my life seems to be an endless blur of screaming tantrums and oppositional rages. There is no consensus in the medical establishment with regards to his treatment or even what his problem is. We have been medicating him for about 3 years now, but different meds seem to stop working after awhile.
And there has never been a shortage of people who feel it is their duty as members of the "village" to straighten me out about my lack of parenting skills.
I also have a 14 year old daughter with a mild case of ADD, and I think her brother's daily emotional outbursts and conflicts really stresss her more than she lets on. Regardless, she has always been the best big sister any kid could want.

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