Poor little brown child...phase

[Marguerite]

Thanks, hon. You've made my day.

I'm hoping DESPERATE checks back in soon, even if it's just to read. If her experience is anything like my friend whose PWS son was in difficult child 3's drama class, "desperate" barely comes close to how you feel.

Marg

 

[Hound dog]

Welcome to the board.

And I agree genetic testing is in high order if it hasn't already been done. Whether it is Prader-Willi (which is exactly what popped into my mind) or some other issue.....at least you'll have the genetic side of things rule out and that covers quite a large area in just one blood test.

When we were desperate for answers with Travis, his neurologist ordered tests run for everything in the book that can be tested via the blood. Literally. Both genetic and other diseases. Just to rule them out and give us a starting point. He did it because I asked for it........and because it could be done via simple blood tests. We worked out from there. I thought his doctor would think I was crazy, but attempting to rule out the physical before diving into behavior or mental seemed reasonable to him.

Keep searching for answers. Trust your instincts. This child is not "normal" and there is a reason behind why. It could be one thing or a combination of things. Getting the proper diagnosis is the key to proper treatment.

(((hugs)))

 

[TerryJ2]

Hi,
you've gotten some great responses here.
I agree, this is not a phase.
I think it's at least partly genetic.
Get rid of the looney-tunes psychologists. They are wasting your time.
Go straight to a children's hospital. I agree with-the others.
I have to say, even though Prader-Willi sounds like a good bet, I, too, thought that he may have been malnourished during his foster care. It could have been both.

 

[Marguerite]

The thing with Prader-Willi, is that they can often have serious feeding issues in the first year or so, so they often do lack good nutrition to begin with. The ravenous hunger and insatiable appetite comes on later, in these cases. So you get a history of both. And I'm not sure how well known this is. Although I got this info from Wikipedia, so it can't be that unknown.

Marg

 

[trinityroyal]

IF he is the only brown child in town - don't you think that would make him feel different? Even if not one soul treated him different - the color of his skin is different so I can only imagine there is a feeling of being different. I think my difficult child thought she was different due to being molatto. She was not black or white.

So, while I agree with Trinity that he should not be held to any different standards, I do think you have to be aware that he may have feelings of being different than others around him.

Wendy, you do make a very good point. It's entirely possible that little SK may have feelings of difference that come from within. Just to put things in perspective though, I'll share a bit of my history...
I am mixed race (black-white-east indian-miscellaneous other). My family has been mixing for generations, each with different variations. So, I don't look like either of my parents, anyone else in my family, or anyone else I know. I was one of 3 black children in school, and there was no one around who looked like me. That said, I didn't realize I was black or "different" in appearance until I was about 16 years old. It struck me one day that when people were referring to "black people", I was one of them. This was also around the time that so-called sensitivity training became prevalent.

I think that an external focus on race and skin colour has a far greater and deeper effect than anyone thinks. It was only when people started to try to be sensitive to my blackness that I became aware of it at all. I think it can be of great detriment to someone who's just trying to fit in, to always have one's differences highlighted.

 

[HaoZi]

A little Occupational Therapist (OT), but is it just me or do young difficult children notice outward differences a lot less than other kids?

 

[DESPERATE]

Thanks to everyone who responded
Many of you were very insightful!!!
We now have an appointment for SK, and will be meeting with a pediatrician in the next month.
We mentioned the Prader-Willi syndrom and he assured us blood tests will definately be taken...FINGERS CROSSED..... thanks again!!!!

 

[Marguerite]

THanks for getting back to us. I'm glad we were able to help. Do let us know how you get on. The only way blood tests will help, is if they look at the chromosomes for PWS specifically. If it's not PWS then there still could be a problem with the hypothalamus but it won't necessarily show up in blood tests. However, a functional PET scan or similar may help. If the blood tests are negative, see if you can still get referred to an endocrinologist who can assess hypothalamus function. It is a very small but very complex organ, the endocrine regulator of the pituitary and therefore ultimately the rest of the body. A tiny defect in a pinhead-sized part can cause some very widespread and confusing symptoms.

Marg

 

[susiestar]

You are very likely to need a pediatric endocrinologist to help your son, regardless of what the tests show. I believe they are the docs who help PWS. Please let us know how things go. I hope the doctor is able to give you some answers and some help.

 

[Marguerite]

Good point, Susie. What I was trying to say, was to ask for the endocrinologist even if the tests are negative. Even while waiting for test results, it might be a good idea to be looking around now for a good pediatric endocrinologist. The local PWS association or support network may have some possible names.

Marg