yeah i argue with extended family members all the time they always see the nice kind child that i have and there has never ever been anything wrong with him ever lol. even though the Dr. has diagnosed him with multiple diagnosis I am the one who doesnt know what im talking about lol.
 

Marguerite

Active Member
You've had experience with Prader-Willi, which is good. But a couple of thoughts from my own experience - they can't regurgitate so if they eat toxic rubbish they often have to hve their stomach pumped. Their hypothalamus doesn't repsond to increase in blood sugar level or stretch receptors in the stomach, so they really do feel ravenous all the time, even if given extra food. And thwy only need about two thirds the usual calories for someone their age without PWS.

So think back to his infancy - did he have the usual spit-ups a baby has on over-feeding? Or as he grew, how was he feeding then? How is his weight now?

Friends of ours with a PWS boy have managed to keep their son from being too overweight, but the extremes ofcontrol needed have been horrendous. At 11 they finally have had to put him into care and he was put on a higher dose of something that sedates him, to try to damp down a lot of the problem behaviours. And yes, he would scream at people for not feeding him enough - in public it could be very embarrassing as well as very difficult to explain - people would see the parents seriously limiting what their son was allowed to have on his plate (because of the reduced calories issue) and give them a hard time, which only undermined them in front of the boy and made things worse.

I really hope your son doesn't have PWS. However, I do hope you get some clues as to what is wrong. If her's been referred to a genetic counsellor, then hopefully he will be checked out for other possibilities such as Fragile X.

I'm presuming the PTSD is from unpleasant experiences (to say the least) from his mother's inability to handle him effectively? While I'm not dicounting the damage that can be done, don't also underestimate how resilient kids can be - it is very easy to blame current behaviour problems on such past events, which can mask other, deeper problems which would have been there anyway.

What I'm saying - look deeper, look harder and don't be too easily satisfied with the fast, easy answers. They may be relevant of course, but may not be the only issue, by far.

Marg
 

timer lady

Queen of Hearts
Gosh, I remember the multitude of diagnosis's behind my kids names at the age of 7; it was horrendous & no one seemed to know what to address first.

It will get better; concentrate on the worst of the issues ~ which seems to be the genetic testing.

As to the day to day please learn to pick your battles. Since difficult child is incessantly hungry put out a basket filled with fun snacks along with healthy filling snacks, put one out after breakfast & lunch & a much smaller one after dinner. Push water. I hope this doesn't sound too simplistic - just hoping I can help with the day to day until you have a treatment plan in place.

I also whispered a great deal when the tweedles were screaming - they had to stop to see if they might be missing something.

Remember - never let a difficult child see you sweat. If you don't know what to do, fake it. They will never know.
 

Marguerite

Active Member
Linda, your suggestions will work, but only if it isn't Prader-Willi. We encourage our kids to drink water because it's good anyway, plus helps them feel more full and slows down the casual grazing. But a Prader-Willi person's stomach stretch receptors don't work, so they don't feel any distention in thestomach from drinking water or from over-eating. That is a big danger - they really can literally eat until they burst, because they just don't know. So they have to be constantly watched and their intake supervised.
Very exhausting. I can't imagine the torture of living with this, of always feelnig hungry, never feeling like you've eaten enough and always being stopped from eating. Constantly. The weight gain that happens so easily until you've also got severe problems with obesity and obesity-related health issues. The whole package - just awful.

That's why I really hope the testing gives you a better answer than PWS.

Marg

A suggestion form my friend with a Prader-Willi kid - she got a bag full of those UHT individual milk portions and would let him have one, as a treat. She used them as rewards for good behaviour.
 

BusynMember

Well-Known Member
My son had a ton of genetics testing too, but everything came back normal. He is always eating and to date there are no answers. There are no tests left, and he is quite overweight. He was adopted so it could be that his heritage has large, hungry people in it, but we don't know. Some of the medications my son was on increase the appetite, but he hasn't been on any medications now for five years and he's still always hungry, always sneaking food. He's such a good kid. This in my opinion has to be physical, but nothing physical ever comes back. We had a few big workups. I hope you have more luck than we have in this regard.

Your son sounds like he has some autistic traits--maybe that's something to explore on your journey.

I don't know what is wrong with Mom, but she sounds scary. Perhaps she had some disorders herself. Certainly, she doesn't sound like she was normal if the poor child is drinking toilet water due to things she has done. Many things can be hereditary.

I wish you lots of luck. Keep us updated.
 

TerryJ2

Well-Known Member
MWM, I agree--Chubbysanta, your son does sound like he has some autistic traits.
Don't panic--it's a spectrum and everyone is different. But it's something to keep an eye out for.
I'm sure you've got a pile of books to read, but I'd also recommend PARENTS GUIDE TO CHILDREN WITH ASPERGER'S by William Stillman.
 

Marguerite

Active Member
It's worth a read to use autism or Asperger's as a working hypothesis. However, it is also important to keep looking for a diagnosis (sometimes even after you get one) because a lot of these syndromes can superficially at least, resemble one another. The Prader-Willi kid we know, we met trough difficult child 3's drama class. The class is a Special Education one, for kids with disabilities. The range goes from ADHD through Pervasive Developmental Disorder (PDD) to also include genetic disorders and in some cases, some global developmental delay with no other diagnosis. And to a large extent, these kids all get on well and look out for one another. I've found that this is often because they recognsie a sympatico in each other, something kindred in how they think. One of difficult child 3's good freiends is from this group and has global developmental delay. There is probably an IQ gap of 100 between the two boys, but they get on really well.

The Prader-Willi boy used to be good friends with difficult child 3, but in the last couple of years he began to badly misbehave. We think possibly testosterone, plus he realised difficult child 3 was simply moving ahead emotionally and socially, and leaving him (the PWS boy) behind. He was increasingly angry and resentful with everybody and is currently in care outside the home because although his mother was doing a brilliant job, he became more than any home environment could handle. He needs someone awake with him 24/7 because he is now seriously self-harming in his desperation to get at ANYTHING to ingest. He will literally attack his own flesh. PWS is nasty. ChubbySanta, you've worked with this before and you've seen at least some aspects of this. But younger kids are different, and also each case is different (which we find with so many disorders).

Interestingly, difficult child 3 was just watching a schools TV program which mentioned some proactive strategies to deal with cyberbullying and he said, "You know - in every school I've been in, I've always been friends with the school whipping boy."
(his words).
He explained byt naming the kids. And yes, the kids he befriended (or who sought him out) were the odd kids, the 'slow' kids, the ones most commonly picked on. At his last mainstream school it was also the most protected kid, that school was vigilant on bullying and ALL the kids looked after this boy difficult child 3 named, because he was partly deaf and completely blind. WHen I tihnk about it - it has been good for difficult child 3 because it shows that even in Pervasive Developmental Disorder (PDD), a high IQ can help by plugging in to the strong sense of injustice and thereby teach compassion.

PWS kids can appear autistic, to a varying degree. I guess it comes down to which parts of the brain are not worknig so well. Anything with splinter skills cna enhance this aspect. The definitions of Pervasive Developmental Disorder (PDD) are sdhifting too, and who knows? Maybe at some future stage it will be recognised as something you can have as part of other syndromes, instead of simply being gven as a concurrent diagnosis.

Marg
 
Top