We got some of Zech's test results back this week. His bloodwork and chest x-ray look good. We do not have the results back yet on the hbh inclusion, though....
Hughes,Linda Kay
lkhughes@...
Sep 1, 2004 12:36 pm
458
Shazza,
According from what Dr. Gibbons has told me, about 15% of the boys with ATR-X do
not show Hbh inclusion. You may want to discuss this with him....
Hello Eveyone, I have missed soo much action here lately. So glad people are talking and sharing info. My 2 stepsons Stephen and Michael are presently getting...
I'm glad you are getting the testing done. Good luck on that and let us know the outcome. I'm glad you liked my laundry story. :) Sometimes we all tend to...
Hughes,Linda Kay
lkhughes@...
Sep 1, 2004 6:33 pm
463
Jen,
I do believe the Hypotonia is common among our boys. However, this may not be a
muscle tone issue with your son. Bear is very thin. His weight...
What foods does your son tolerate now? Stephen will be 8 in Oct. He weighs about 50lbs. Michael is 6, weighs about 42lbs. The geneticists thought for along...
Bear is now 11 and weights about 54lbs. Zechariah is 8 and he weights about 50 lbs.
The boys do not have a particular diet. They
eat what ever we prepare...
Jen: Are the boys on special diets, now? If so, what kinds of foods do they eat? Our guys eat whatever we are eating---pizza, hamburgers, hotdogs. Bear...
Hughes,Linda Kay
lkhughes@...
Sep 1, 2004 8:49 pm
467
The boys HBH inclusion test came back negative. The Dr. is still going to research the gene which will take a few months. I'm becoming exhusted with this 4...
Linda, The boys have a horrible diet, I think. They don;t eat any fruits sometimes but very rare. They don't like much meat either. They are both texture...
Dakota is texture sensitive too, but that maybe heightened by his autism. He doesn't like jello or meat or things like chips or breads. He loves chicken ...
jasmine jones
iliketoscoot@...
Sep 4, 2004 1:12 am
470
Hi! I know in our case, our geneticist indicated that our son's hypotonia was an trait of ATRX - that our son has. He also has had a g-tube (now has a...
We just came back from holidays, and my little booger had a blast! We invented our own sign for icecream (just pretend to lick an icecream cone),and went for...
Hi All I thought I'd finally get around to converting some of these weights and comparing them to Jarod. I probably shouldn't have though...lol. Jarod is...
Well, Dakota is about 5 feet tall, but my dad was short statured too, like all of my dad's family, and I am sure that has something to do with it. He still...
Haha that's great! Dakota eats some icecream but since he has sensitive teeth (like me) it hurts our teeth, and he makes the funniest faces. He used to be...
Hi everyone ! I'm writing to ask a favor of you. I'm wanting to hear from as many of you as possible about any behaviour issues you have with your sons, and...
Hi, I'm Stephen and Michaels stepmom and Michael who is 6 now has some serious tempertantrum-emotional breakdowns. He is at the level of a nine month old so I...
Dakota gets very aggressive. But we have realized that it is probably anxiety due to his autism, and I think they are going to start him on something to treat...
Dakota is just like you described with the explosive anger. He will be really loving and caring one minute, hugging on you, and the next he has two hands full...
From the bottom of my heart, thank-you. Today was yet another challenging day for us and just knowing I'm not alone - that someone else "gets" what we deal...
Jasmine thanks to you too! I'm sorry to hear about Dakota's ordeal! I just pray that someone can get into these kids heads and figure out what they need to...
Wonderful information! Thank you so much! My guys the same - loves his routine and car rides - anything involving vestibular motion is wonderful for him! WE...
HI...we don't often chime in but this would be a good time to note that our son Benjamin is now 10, weighs 56 lbs, eats only thru a g-tube, doesn't walk or...
Great! :D And it really is hard to keep them on the strict routine the desire when there are so many other things going on in the household like other kids, ...
jasmine jones
iliketoscoot@...
Sep 7, 2004 2:48 am
484
That's the way the drs are with Dakota. But luckily we found a specialist I think in GA that has worked with two other ATRX affected boys, I think he's a ...
jasmine jones
iliketoscoot@...
Sep 7, 2004 2:51 am
485
I am so sorry to hear about the aggression with your son. We have had little of that in Bear and Zech. Both boys are extremely happy and playful. Zech has...
Hughes,Linda Kay
lkhughes@...
Sep 7, 2004 12:59 pm
486
Hi David! Thanks for the support - I hope you're finding the supports you need to deal with your situation! What sort of health issues does Benjamin deal...
