User:PWSMom

PWSMom — Mon, 06 Sep 2010 15:26:29 GMT

August 2010:

← Older revision		Revision as of 15:26, 6 September 2010
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	== My Story ==		== My Story ==

-	My baby was born spring 2004 and what I was most struck by is that my child's [[PWS]] experience is not reflected by the medical or new parent literature currently available. Partially, this is because my child appears to be mildly impacted. And partially this is because my child belongs to the new generation of PWS children with multiple [[Overview \| early interventions]].	+	My baby was born spring 2004 and what I was most struck by is that my child's [[PWS]] experience is not reflected by the medical or new parent literature currently available.

	Both my husband and I are medical scientists by training. In addition to the extreme emotional pain of having a child with a disability, we are engaged in the problem of PWS. We have no choice about our boy's genetics and therefore we choose to throw everything we have into modifying his environment. We choose to believe completely in the redundancy of the human genome and the incredible plasticity of the nervous system, especially in the early years.		Both my husband and I are medical scientists by training. In addition to the extreme emotional pain of having a child with a disability, we are engaged in the problem of PWS. We have no choice about our boy's genetics and therefore we choose to throw everything we have into modifying his environment. We choose to believe completely in the redundancy of the human genome and the incredible plasticity of the nervous system, especially in the early years.
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	I would add one other thing and that is that when Kian has a higher carb day, the next day he is hungrier than usual and craves carbs. While I notice the same thing for myself and my girls, it is quite pronounced with Kian. When I look at it through my fearful PWS eyes, it looks like THE HUNGER. It goes away, though, if I focus him on protein and vegetables. I point out to him that it can’t be hunger since he can have all of the protein and vegetables that he wants to eat.		I would add one other thing and that is that when Kian has a higher carb day, the next day he is hungrier than usual and craves carbs. While I notice the same thing for myself and my girls, it is quite pronounced with Kian. When I look at it through my fearful PWS eyes, it looks like THE HUNGER. It goes away, though, if I focus him on protein and vegetables. I point out to him that it can’t be hunger since he can have all of the protein and vegetables that he wants to eat.
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		+	=== August 2010 ===
		+
		+	Letter to Kian's teacher as he starts first grade in a Montessori school:
		+
		+	Please feel free to share this with anyone who is interested. Kian’s syndrome is something I willingly talk about. Keystone is our home and members of the Keystone community have nurtured Kian and supported our family since his birth.
		+	Kian has a genetic syndrome (Prader-Willi Syndrome). This means that he has identified and well-characterized challenges. I tell you about these challenges so that you can join us as we help him to overcome them. We do not believe that Kian’s genetics represent his destiny. Our goal for him is an independent and happy life. We understand that he (and we) will have to work hard to achieve this goal. We intend to work hard and appreciate all of the tips and suggestions that you can give us as we travel this journey with him.
		+	Kian is missing a small piece of his paternal chromosome 15. It only amounts to a few genes, but these genes have many ramifications throughout his body. PWS is recognized as the most common genetic cause of life-threatening childhood obesity. I have attached a fact sheet about PWS.
		+	When Kian was born he looked like a classic infant with PWS. He could not move, could not cry, could not open his eyes, and could not eat. Today, Kian does not look or act like a typical child with PWS. We attribute this to incredible good fortune, his hard work, and the support of a large and loving team of therapists and teachers and caregivers.
		+	Right now, for Kian, PWS means:
		+	1) Food – Kian is on a very low carbohydrate diet. He does not eat grains (bread, pasta, crackers) or sugar (cookies, cake, candies) and he eats very little fruit (1/2 piece per day). When he accidently gets carbohydrates his brain becomes foggy, his behavior becomes irrational, he becomes uncoordinated, he begins to complain of hunger, and he may begin actively seeking (even stealing) food. He also gains weight very quickly. We will pack lunches and snacks for him that are primarily protein (almonds, meat, eggs) and vegetables (celery, red peppers, carrots). We can send in dark chocolate for you to give him as an alternative when kids have cupcakes or cookies. If you choose to have junk food/game days, can you give me a heads up and I will figure something out when that time comes?
		+
		+	2) Eyes – Kian’s eyes are weak and he has crossed eyes. This is controlled by his bifocal glasses. He needs to do up close work by looking through the bottom of his bifocals. This means that he cannot do up close work on the floor – the bifocals don’t work properly from that angle. Sitting on the floor during lessons or class reading is fine. We ask that, whenever possible, you modify work so that he can be at a table. Also, if you think about it, can you remind him to push his glasses up his nose?! Kian is currently in vision therapy which means that every night he comes home and does half an hour of exercise to strengthen the muscles in his eyes.
		+
		+	3) Exercise – Kian is at risk for obesity and he naturally has weak muscles. In order to compensate for this he is active in gymnastics, yoga, and horseback riding. He gets private gymnastics lessons twice a week. Last year we did this on Tuesday mornings and he came to school late on those days (about 9:45). Do you think such a plan would work in first grade?
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		+	Please call me with any questions (XXX-XXX-XXXX) and please flag any and all potential problems that you see with Kian in your classroom. Of course I don’t enjoy hearing bad news, but anything that you see now can be woven into a plan to help make Kian stronger and give him an independent and happy future.
		+	Kian is so excited to start first grade!!!!
		+
		+	=== September 2010 ===
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		+	Kian is working out so hard right now it is unbelievable. He is crying from the muscle soreness sometimes, but then he just stretches out and then goes right back to it. He even does the work himself in the mornings (push ups, etc.).
		+
		+	He learned how to run! His gymnastics coach taught him to lift his knees and throw his chest up. He looks beautiful and he flies! He loves the feeling. Now he is running everywhere (and his legs are sore). His coach has extended his privates to 1 1/2 hours and Kian wants to do 2 hours! And, he works that entire time.
		+
		+	Yesterday he got in trouble for trotting his pony independently over the poles. He was supposed to walk, but he had seen me trotting and decided trotting would be more fun. (Note that his behavior is a bit challenging at the moment. He is quite independent and head strong.) Well, he did it successfully, but then Ms. Denise put him on a lunge line for a little more control. He pretty much trotted (and posted) for half an hour. (This was after an hour private gymnastics lesson in teh morning.) She said his core and shoulder strength was dramatically improved from 3 weeks ago. He showed no fatigue. Then she let him trot independently. He wanted to trot around the ring, but she had him trot across the ring to a "catcher." Trot, trot, trot, and he slowly slipped off. The good pony stopped. No harm.
		+
		+	Kian dusted himself off, got back on and kept trotting the pony independently!!!! Now, I think that is a sign that the kid has low levels of anxiety. Most kids would not be able to get back on a pony and keep trotting. Ms. Denise (and I) were pleased about the fall. We felt that it was an inexpensive and much-needed lesson in humility. The boy is getting big for his britches. It drives him crazy that he can't do everything that his sisters do.
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		+	His body is changing again. I think it is the muscle mass. He is still a bit on the heavy side, but he carries himself differently. His shoulders are back and square and he appears more trim. He moves like an assertive and strong boy.

	==See Also==		==See Also==
	*[http://babybeddingcribsets.net/ Baby Bedding Crib Sets]		*[http://babybeddingcribsets.net/ Baby Bedding Crib Sets]

PWS Notes - Recent changes [en]

User:PWSMom