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8 Yo Daughter Seems To Need Lots Of Sleep

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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,



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    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
    • Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think. Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here. Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones. I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.
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