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Wednesday, March 23, 2016

FASD: Abnormal Eating Patterns

As I sit here to write Fred has come to me twice asking for lunch; it's 11:15 am and he has eaten 3 times already this morning and had a cup of Celestial Seasonings Sleepytime  tea. He is insatiable, always hungry and has been from the first moment he came to us.

Now I know that, "Abnormal eating patterns are common in children with FASD and may contribute to their delayed growth and nutritional inadequacies. Their poor satiety may reflect poor impulse control. Children with FASD may benefit from diet counseling. Conversely, some children with hyperphagia may warrant referral for FASD screening."

I now know what it is called and what it means:
Hyperphagia: noun hy·per·pha·gia \-ˈfā-j(ē-)ə\
Definition of HYPERPHAGIA: abnormally increased appetite for consumption of food frequently associated with injury to the hypothalamus
— hy·per·phag·ic  \-ˈfa-jik\ adjective.



 I remember the first day he was with us. We had taken the kids to Grandmas at The Farm to pick apples and Fred walked around alternating from crying and screaming to stuffing apples in his mouth as fast as he could. I wasn't really worried, it was all new for him and I was following him close enough to make sure he wouldn't choke on a bit of the apple skin. He was so little that actually getting a bit of the apple into his mouth took quite a bit of work.

Fred was 24 inches tall and 17 pounds on this day. Which made him below the 5th percentile in growth for his age. Which means that if there were 100 children standing in a row and sorted by height, he would be about the 4th child from the end.




We made a conscious effort to feed him foods he was used to but it seemed that macaroni & cheese and hotdogs were what he considered except able foods, that and any sweet foods. After a week or so I made a declaration to my family. NO more sugar foods and no more mac&cheese or hot dogs. I am not a food nazi but do you know what is in hot dogs? I give them to my family occasionally but not everyday. Then all hell broke loose. The sugar fast did not go over well. Fred screamed all day, everyday with only moments of eating in between. It didn't take him more than three minutes to transition to baked chicken, whole wheat pasta and vegetables. He ate and ate and ate. I figured he had lost time to make up for.

We got him into the doctors office as soon as we could for a check up but in the 10 days it took to get the appointment he had gained almost 4 pounds. Fred arrived with liquid antihistamine but the doctor said since we were an nonsmoking home he probably didn't need it to go ahead and discontinue its use.




By the time we got the first doctors appointment I was starting to have questions. I worried that he didn't try to say words, his head was flat on the back and he wouldn't make eye contact. When I mentioned these concerns and asked the pediatrician about autism and possibly not giving him anymore baby shot because they may have caused him harm her replies were:


  1. All the "bad" ingredients in baby shots have been discovered and been removed and are perfectly safe now, lets give him the ones he needs today.
  2. His flat head is from sitting in his baby seat and/or car seat too much and it will round out eventually since he's not in it any longer.
  3. As for the autism, just take him home and do what you do and he will be fine. He's never been parented just.... go and do.   

Now, I loved this pediatrician, she was my daughters doctor from birth until we moved away and now that we lived in the area again she was my grandsons doctor from his birth on also giving us a 16 year range of interaction. I have great faith in this doctor and interacted with her at many community events and woman's gatherings and I have pride in the fact that she had such great faith in my parenting abilities. Little did either of us know to what extent the damage really was in this little guys brain.

Time went on and it was a year later and he was still never full, still crying that he was hungry. He had rounded out and had beautiful baby skin flushed with healthy hues of pink. He did still have a lite smudging under his eyes.

Preschool was a bit of a nightmare too. I would feed Fred breakfast in the morning and he would go to school and eat breakfast again. I tried to tell the teacher and program director about his unusual eating habits; gorging until vomiting unless limited. I got a bit of a snooty, nose in the air response of, "We DO NOT limit children in what they eat, they are allowed to eat what they want, it's about learning to make choices."  So, for the first three of four times they allowed him to eat all he wanted and he vomited all over I picked him up when they called. Then i told them it "was about learning to make choices; they allow him to overeat and vomit they need to deal with it" and I stopped picking him up when it happened. It was amazing, soon they were allowed to limit his eating.

Early school wasn't too awful, at school. The staff were wonderful and understanding, they were all well aware of his eating habits and the food item I would not allow him to have; high fructose corn syrup ( I will write a whole page on this soon to explain). All the staff became adept at keeping it away from him because they had seen first hand at how it affected him (can you say meltdown?). The school lunch lady even went through ingredients on boxes with me and only ordered high fructose corn syrup free snacks and chocolate milk so he could have it. She said she wanted all the kids to eat as healthy as possible, love that lady.
At home food was still a fight. I simplified by only having one meal out at a time and I bought lots of fruit, cheese and I made lots of whole grained bread. I was even complimented at how clear and pretty pink and healthy his skin looked by the Special Ed teacher and how another mother she knew who had an "autistic" child was asking how I did it. Omgosh... lots of sticking to my guns!

There were a lot of bizarre behaviors from this kid revolving around food. If we were at the park and Fred would see people eating he would make a bee line for them and I would be right behind him but he was so fast he would be asking complete strangers for food and say things like we didn't feed him, he had not had any food that day, he never ate. I tried damage control but people would just look at me like I was crazy because they had no comprehension of a child with such deep seeded damage. I ended up just saying something like "Sorry, he's autistic and has no social filters" as i held him by his shirt and steered him away from them as fast as I could because inevitably one of them would say, "That's OK, he can have some." to which I would have to reply "No, he can't" because I didn't want any positive reinforcement here for this action.

Fred just turned 9 years old and life has finally calmed down some. Hyperphasia's extreme hunger due to the damage to the hypothalamus, caused Fred's hunger to rule everything in our lives for a long time; where and when we went anywhere, play times, snack times, meal times, what I was doing at all times; gardening or mowing the lawn was just plain harder to do when having to stop to feed or snack a child. I was relating it to having a newborn infant; feedings every 2 to 4 hours.

Not only was the hunger there but because of the RAD (Reactive Attachment Disorder), due to his basic needs not being met at certain stages of his development, Fred hold on to the belief that no one will fill his basic needs, no one will ever feed him again (drama ensues... meltdown). This never ending "hunger" followed by this belief that "no one" will ever feed him again "so I must scream like I am dying" (and he actually felt like he was), was the cycle of our life... everyday. He was in actuality eating so much in excess that he was becoming pudgy.

Recently, Fred was put on Concerta and the dosage was moved up to 36 mg by the second month. He was put on it for his ADHD, to increase his focus and curb his impulsiveness.  Listed as one of the "side effects" is "loss of appetite". The difference was like night and day. I would advise any parent to consider this medication if food is an issue at your house. I am a bit tentative about this lull in the storm but I am taking full advantage of it in a positive way. We are teaching Fred how to cook.

Neurologically RAD children's brains are actually different than a child who does not have RAD. Physically the brain is smaller and underdeveloped caused by physical and emotional deprivation which causes these children to react and move into the gear of self survival. Their reactions become feral coming from the primal place of survival deep within.  Compound this in Fred with the brain damage created by the alcohol resulting in lower IQ and comprehension and life can be extremely interesting at times.

I am in a group for people who are parenting children with Reactive Attachment Disorder and a lot of the stories are heartbreaking and very familiar. RAD is a "newer" diagnosis that isn't really understood by the caregivers and is commonly seen as willful disobedience rather than that its etiology being neurological in natureIt is becoming rampant within the foster care system that chooses to remove children from caregivers in larger numbers than they can responsibly care for causing them to be shuttled from foster home to foster home compounding the problem.

I find the more that I delve into the world that is Fred I find that the FASD, RAD and PDD-nos are all interwoven and entwined with no semblance of order or pattern and as complicated as the tree and the shrub and the two kinds of vine that make the mess at the end of the driveway. I also fine that I am dealing with both in about the same way... walking around them, tugging here and there on a hanging vine, contemplating the next best form of action, nothing too drastic or physically exhausting. It's finding the one vine to clip and the one branch to tame along with choosing the right branch to encourage to thrive... I don't see me making much of an impact on either Fred or the Vine/Tree mass at the end of the driveway all at once but when I prune I will prune with a purpose and the new growth will be beautiful.

I am working on how we are dealing with this an overcoming these obstacles, watch for those posts as they develop. 


With all My Love,
Fred's Mom







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