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Re: [ahc] carnitine

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  • KathHurl@aol.com
    Yes, it does smell a little bit fishy. Kathy ... From: pruntys79@insightbb.com To: afha@yahoogroups.com Sent: Thu, 29 Mar 2007 4:29 PM Subject: [ahc] carnitine
    Message 1 of 2 , Apr 1 5:10 AM
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      Yes, it does smell a little bit fishy.

      Kathy

      -----Original Message-----
      From: pruntys79@...
      To: afha@yahoogroups.com
      Sent: Thu, 29 Mar 2007 4:29 PM
      Subject: [ahc] carnitine


      Carnitine is the one that smells really fishy, right? Mary was on it for a short time, but we didn't see any difference.
      Carol

      ----- Original Message -----
      From: KathHurl@...
      To: afha@yahoogroups.com
      Sent: Thursday, March 29, 2007 11:03 AM
      Subject: Re: [ahc] Fatty Acid Oxidation Disorder

      If you suspect your child has this, you may want to talk to your doctors about Carnitine. It seems to have helped Abbie with her muscle strength and endurance and may even be helping with the AHC episodes -- its hard to tell for us since she has them infrequently. Is there anybody else out there who's child is on Carnitine? Does it help with the AHC episodes?

      Kathy

      -----Original Message-----
      From: homesofia@...
      To: afha@yahoogroups.com
      Sent: Thu, 29 Mar 2007 11:37 AM
      Subject: Re: [ahc] Fatty Acid Oxidation Disorder

      Hi Dana, Kathy, & Joan,
      Haven't been on for awhile but read these past few posts and can't help but notice the similarity in Emily, she'll be 15 next month, and she has gone through a growth spurt the past year, but appetite increased, and very similar eating habits. She doesn't like fruit juice but she drinks Rice Milk, and Water, and Chocolate Milk. She Loves rice pudding, we started making it at home because of her sensitivities to preservatives. She also eats Ice cream, and vanilla shakes, which we make at home with Vitamin Shoppe Vanilla low carb high protien vitamin suppliment, and she has those for breakfast most days, Drinkable yogurts, by the 6-pack, and Chicken nuggets, we tease her that she will become a chicken nugget she eats them so often, she loves Vegis all kinds, and she eats every two hours, even at school, and she is just hitting 103 lbs and she is 60" tall. she isn't as thin as she was when she was younger, but she is still on the thin side for her age, and a head shorter
      that most other girls her age.

      She has been doing well with her episodes, but we are working on her transition to high school this year and that has been a challenge to fine a good placement for her.

      Just thought I would chime in.
      Take care,
      Lee

      Dana Tasi <dtasi@...> wrote: Hi Kathy & Joan,
      Kathy, The way you describe Abbey's eating habits and the type of foods she craves. My 16 year old daughter Brooke is the same way. She constantly is eating those types of food and is constantly hungry. She eats and drinks so often that you would think I never fed her. The good part about it is that she doesn't gain weight. The thirst issue 1st came up when she was in Kindergarten. I took her to the doctor to make sure she didn't have diabetes. Snack time at school is also an exception to school rules but is written in our PPT notes. I have it set up with the school that she has a snack mid morning and water to drink. I did switch her over from drinking juice all the time to drinking water for lunch and any time she wants a water bottle at school. I felt too much sugar wouldn't be good for her. I was concerned that too much sugar and not being able to burn it off would cause her to gain weight and would be an added issue. At home she drinks green ice tea
      throughout the day and in the morning and sometimes with a snack in the afternoon chocolate milk. She loves waffles practically everyday and for lunch she will have a peanut butter and jelly sandwich on a roll and I give her a couple of clementines, too. She loves sweets . . . cake, cookies, ice cream. I never limit her food intake just because she seems as if she needs it. I am wondering now if eating this way is the same for all AHC kids. If so we should all bring this up to the researchers if they do not already know this information.
      Joan, Does your son seem to do the same thing as Abbey and Brooke?
      Luckily for the past two years Brooke did not miss any school. Any episode would occur after or she would wake up in the middle of the night or very early morning hours. It seems as if the type of food and amount of could possibly play a role in making things better for them. I just don't know why but maybe if we find that this is the case with all our children then we've found another common link.
      Dana

      KathHurl@... wrote: We had noticed over the years that if Abbie gets wobbly, she seems to recover when given fatty or high carb foods. We also noticed that she has an incredible thirst for juice and wants to eat all the time. Although all the blood work appears normal, when discussing this with the neurologist he thinks it may be some type of fatty acid oxidation disorder (meaning the body has difficulty turning fat into energy). This made sense to us since she does seem to do pretty well overall if she eats at least every two hours and has something before bedtime. The carnitine was prescribed for this and because we were concerned about a slight decrease in muscle strength as notice by her Physical Therapist at school. We have seen improvement in her alertness, strength and endurance. She takes a dose in the am and a double dose just before bed with a snack to get her thru the night. We now have a little snack cabinet filled with crackers, pretzels, canned peaches,
      applesauce, cookies etc. that she can go to whenever she wants something to eat. She simply seems to require these types of foods and they do seem to help and yet she is not overweight. She is also allowed to have a snack in the a.m. at school and juice whenever she wants it -- this is an exception to the rule, but is allowed because of this disorder. I have notice a great improvement and there are a lot less "off" days for her at school.

      Kathy

      -----Original Message-----
      From: 6laws@...
      To: afha@yahoogroups.com
      Sent: Tue, 27 Mar 2007 8:41 AM
      Subject: [ahc] for rachel, question for kathy

      Rachel, our son, now 17, did not have a seizure diagnosis either. We had good success with Neurontin for the larger episodes for quite a few years. He also seemed to get worse around early puberty, and is doing much better now.
      Kathy, could you please tell how the fatty acid oxidation disorder is diagnosed, or how you found out Abbey had it.
      Thanks, Joan

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