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8 Yo Daughter Seems To Need Lots Of Sleep


dmchr4

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dmchr4 Apprentice

My 8 yo daughter was just diagnosed as Celiac. She has always needed a LOT of sleep. She is a night owl, and even if she's in bed by 8:30, we often still find her awake at 10:30 (even though we've checked her in between and turned off her lights.) She also wakes up 2-3 times a night to go to the bathroom even though I limit fluids in the hours before bedtime. She will sleep in until 9:30 or even 10:30 if we let her. She snores awfully (so none of the other kids want to share her room), and she does have very large tonsils. The doctor doesn't want them out, though. She wakes up every morning feeling lousy with no appetite. Once she eats a bit, she feels a little better. She's been gluten-free for a week now, and seems like she's got a lot more energy, she's been running around like CRAZY. But she's still doing all the sleep patterns above. Anyone else had problems like this and seen improvement once on the gluten-free diet for a while?


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Why doesn't the doctor want her tonsils out. Sleep problems, chronic enlargement and snoring together make her fit into the criteria required for surgery to remove them.

Some of her sleep problems could be from gluten, and that might get a little better with the diet, but some of it might be sleep apnea caused from her tonsils. She may be waking up because she is having trouble breathing clearly, and then just gets up to go to the bathroom, since she is already awake. This constant night waking can also explain why she is always so tired and wants to sleep in in the mornings. It is a good idea to have them out if she is having problems because leaving them in can cause future health issues due to the strain on the body from the disturbed sleep and lack of oxygen (if she does indeed have apnea). I would question the doctor about this decision and if need be get a second opinion. Make sure you discuss the sleep problems and if they could be related to the tonsils. Her lack of appetite could also be attributed to the enlarged tonsils. It can make it uncomfortable to swallow, so kids eat less.

My 5 yo daughter is recovering nicely from her tonsilectomy from 9 days ago. Her snoring is relieved (although it was worse for a few days due to the swelling), her sleep is more sound (less waking up at night) and although she is on a soft food diet, she is eating much better. We are expecting another growth spurt, now that she can eat better! :D

God bless,

Mariann

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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