Discussions By Condition: I cannot get a diagnosis.

11-year-old chronic headaches, stomachaches, fever, foot cramps...

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: kilakiwi
  • January 6, 2009
  • 05:46 PM

My 11-year-old son has chronic:
headaches (diagnosed as migraine, but no migraine meds work),
intense stomachaches,
low-grade fever (99.9-100.9), though when he feels well it's +-98.4,
foot cramps,
high platelets/hemoglobin (but not extremely high, just consistently above average),
fatigue/listlessness

He has missed so much school that we homeschool now. He's seen in ER 1-4 times per month for the headaches and stomachaches. Narcotics relieve the pain for a few hours, then it's back. Midrin is the only non-narcotic that helps at all with the headaches.

He has had neuro workups, blood workups, GI tests, and psych eval. The psych says he has anxiety and depression and is treating with Effexor which helped the headaches a bit until the rains began. (Migraines do run in our family)

He had Mononeucleosis at age 5, and has been a self-determined vegetarian since he was 3. He also tested positive for Celiac, but biopsies were normal. He is tall for his age, but has lost 10+ lbs over the last few months. His tonsils and adenoids were removed 3 years ago.

We have good hospitals and an excellent family practice doc, but no one can tell us what is wrong or what to do next. If anyone has experience with this range of symptoms and can suggest something practical that would help my son, I would sure appreciate your thoughts.

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14 Replies:

  • :(I'm so sorry your son has to suffer through all that.... I searched the internet in hopes that I could help, but I didn't find much. The Celiac would cause the high platelets, stomacheaches, weight loss, and fatigue... I don't know what to tell you, but I hope you and your son find something soon.
    CharmedOneTAR 4 Replies
    • January 7, 2009
    • 01:50 AM
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  • If he tested positive for celiac and he is also a vegetarian, then I will guarantee he is deficient in B12...please get on the B12 misdiagnosis thread and talk with Freddd. It should be very helpful as B12 deficiency can cause many of his current symptoms. Also he should be on a very restricted antigluten diet. If he is still ingesting gluten this can cause his symptoms to worsen. If you live in a Lyme area, he needs to be tested for Lyme disease - very hard to diagnose, but can cause these symptoms as well. I would personally recommend acupuncture and NAET to help with his symptoms. Acupuncture is brilliant for migraines, and NAET can help treat his gluten intolerance. Best wishesDOM
    acuann 3,080 Replies
    • January 7, 2009
    • 02:07 AM
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  • hiyou said he tested positive for celiac, does that mean he is off all gluten? i have some of his symptoms, though less severe, and i think i have both celiac disease and gluten intolerance (they are too different things)you might want to look into that, just a thought
    Anonymous 42,789 Replies
    • January 7, 2009
    • 02:18 AM
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  • Thank you both very much for your thoughtful replies. I will definitely check out the B12 issue, will ask if my son's doc will give him a B12 shot, and will also write to Fredd as you suggested.Although my son's blood test was positive for Celiac, when the intestinal biopsies came back negative, they said he didn't have it and told me not to restrict his gluten.I had never heard before that Celiac could cause high platelets, so I will look into that. If that's the case, then it seems to make sense to restrict gluten, even though the docs said not to.I wish I could get acupuncture and/or biofeedback for his migraines, but his insurance (United Healthcare PPO) won't cover it, and I'm already in a bind for rent. But I am planning to take him to a chiropractor this week.The Lyme point is well taken too, and I will ask for a test. Our dog had ticks just last weekend, so I guess my son could have been bitten at some point without us knowing. He has been on Zithromax and Keflex recently, though, so would that cover Lyme?Thanks again. I will definitely follow up on your leads.
    kilakiwi 2 Replies
    • January 7, 2009
    • 02:56 AM
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  • It won't hurt to try a gluten-free diet to see if it helps. But get some advice on how to do this. Gluten is hidden in many foods. Celiac is associated with fever & platelet count. This is an older article, but try here: http://www.ajcn.org/cgi/content/full/69/3/354 And: http://www.doctorslounge.com/gastroenterology/forums/backup/topic-16837.html
    aquila 1,263 Replies
    • January 7, 2009
    • 05:27 PM
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  • I can't believe I stumbled upon your concern for your son. My 11 year old son is going through the exact same thing! I am at a loss with him and answers. Chronic headaches, stomach aches/pain, low grade fever, tired, pain, couldn't walk for a while as he was so weak. He has missed over 30 days of school. He has had GI, Xrays, MRI, CT, blood work about 3-4 times in the last few months. ER visits...all with no answers. He sees a gastroenterologist and a neurologist right now. Gastro is treating him for gastritis and the neuro is treating him for his chronic heads. He has been sick now for over 2 months. He just had another blood test done and his platelets were high. Someone mentioned to me that possibly he is alergic to wheat products. We are waiting for the results. Still no answers. Please respond, I would love to discuss further with you. I am still in shock that I have read your post about your son. It was almost as if I wrote it. Thanks-H
    Anonymous 42,789 Replies
    • January 30, 2009
    • 02:12 AM
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  • Hi H, Yes, let's talk. Write me at this temporary address and we can exchange email addresses from there: tempwdforum at aol dot com. Looking forward to talking to you!K
    kilakiwi 2 Replies
    • January 30, 2009
    • 11:44 PM
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  • I would strongly recommend that you restrict all gluten from his diet as soon as possible. Celiac disease can cause a whole host of issues and wreak havoc with your health. Headaches, stomach aches, weakness, fatigue, seizures, neurological issues, and skin problems are just a few of the many symptoms that can be caused by Celiac disease. My whole family is Celiac, and it's presented differently for each of them. Testing in children can be unreliable, but if he's ever had a positive test I wouldn't hesitate to remove the gluten.For what it's worth, our symptoms have included: temporal lobe seizures, skin rashes, fatigue, gas, stomach aches, anemia, diarrhea, insomnia, nausea, abnormal liver enzymes, headaches, irritability, depression, bone loss and vitamin deficiencies. Celiac disease is wildly under-diagnosed: estimates are that as many in 1 in every 122 people are Celiac, which makes it extremely common, and many doctors know little about the disease or have only an outdated understanding of it. In all honesty, going gluten-free is easier now than it's ever been. There are lots of restaurants with gluten-free menus, there are breads, pastas, baking mixes, pizzas and cereals and all sorts of great options and recipes. My son was the first to become obviously symptomatic, and I thought that changing the way we eat would be so hard, but in fact in's been relatively simple. We've found replacements for all our bready favorites and found new places to eat out. Celiac.com has great information and resources, including the all-important 'forbidden list' to help you get started, and there are forums and support groups to help answer your questions, too.Good luck! I wouldn't be surprised if, after you take out the gluten, you have a resolution to all his symptoms and a new kid on your hands. I did!
    Anonymous 42,789 Replies
    • February 17, 2009
    • 11:31 AM
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  • I also have an 11 year old son who has a headache for the last 13 days. Took him to ER and did a CT of his head, results are negative. Took him to his regular doctor he couldn't find anything. Took him to ENT who told me that his sinus's were closed, he gave him an antibiotic, a nasal spray (over the counter), nothing works. Tomorrow taking him for a CT of the sinus. The pain is so bad he can't think, can't focus, the school nurse said it's probably stress, he said he ain't stressed out. he has missed about 8 days of school, and he failed 3 subjects due to his inability to think straight. Nothing over the counter works, on a scale of 1 to 10 the headaches are always an 8. I don't know what to do. Help.
    Anonymous 42,789 Replies
    • February 19, 2009
    • 10:35 PM
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  • I also have an 11 year old son who has a headache for the last 13 days. Took him to ER and did a CT of his head, results are negative. Took him to his regular doctor he couldn't find anything. Took him to ENT who told me that his sinus's were closed, he gave him an antibiotic, a nasal spray (over the counter), nothing works. Tomorrow taking him for a CT of the sinus. The pain is so bad he can't think, can't focus, the school nurse said it's probably stress, he said he ain't stressed out. he has missed about 8 days of school, and he failed 3 subjects due to his inability to think straight. Nothing over the counter works, on a scale of 1 to 10 the headaches are always an 8. I don't know what to do. Help. Have you tried Mucinex? It will help thin the mucus secretions and drain out his sinuses. I would take 6-800 mg twice a day for at least 10 days or longer. Since his sinuses are blocked I recommend a neti pot or Dr. NeilMed's sinusrinse to flush out his sinus passages. Does your son have allergies? Have you tried allergy meds? Stinging nettle is very helpful for allergies. I don't recommend a decongestant as this can make his pain worse. It will dry up the already impacted sinuses...mucinex is a MUCH better option. Sinusitis can cause severe face and head pain. It may take awhile to clear. Antibiotics may or may not help (if it is a fungal infection antibiotics will actually make things worse). What antibiotic is he taking? If your son is up to it, I recommend acupuncture...it is very helpful for headaches. I am a Doctor of Oriental Medicine and have treated migraines, sinusitis, and tension headaches with great success. Acupuncture does not hurt, and is a very relaxing and effective treatment. Course I understand not everyone feels comfortable with this form of medicine... Best wishesDOM
    acuann 3,080 Replies
    • February 20, 2009
    • 01:06 AM
    • 0
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  • Hi, Did you get results from your sons headaches? I posted a reply earlier about my 11 year old boy. They never found out what was causing the headaches but he is on Amitriptyline 20mg/day to help control them. I also have changed his diet some and he is eating healthier meals and less fried food and fast food. I hope your son feels better!-H
    Anonymous 42,789 Replies
    • February 21, 2009
    • 03:43 PM
    • 0
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  • I thought celiac bowel biopsy usually only showed damage after the issue has been going on for a while (flattened villi from the damage)? So hence one can have celiacs disease but it may in such case not show up in the biopsy??? someone please correct me if im wrong in this. What i do know (we have a lot of celiac disease in my family and I do have the celiac disease genotype) is that many doctors are not at all up to date with celiac disease and it's an often missed illness which can cause all kinds of symptoms. I suggest for you to remove ALL gluten from your sons diet and see if that makes any difference. Also seeing he's tested positive for celiac disease.. I also suggest to avoid it for that reason to... as you may of just found out about this before more serious damage to him has been done (villi damage and malabsorption issues). ........... B12 deficiency can cause a ton of issues.. I suggest too to make sure he hasnt got any issues with this............. My other thought to you and the other poster with a child missing a lot of school who has same symptoms as your child. (tiredness, weakness, fevers, headaches, gastro issues etc) . I suggest to check out http://wwcoco.com/cfids/bernesx.html Chronic fatigue syndrome is the MOST COMMON/top medical reason on long term school absence in children. Your sons have the most common symptoms of CFS so this could possibly be the issue. Unfortunately he CDC says that 80% of ones with CFS remain undiagnosed (this is cause most doctors are all not that familar with CFS and hence are often reluctant to give a diagnoses). Many doctors are not aware that children can get CFS and that in children it appears equally in both sexes. (in Adults...CFS appears mostly in females). Daisy is a child with CFS talking about her illness on youtube http://www.youtube.com/watch?v=wzH6gI86pfk&feature=rec-HM-rn (be aware thou that CFS presents slightly differently in each person so your children may not have all of Josies symptoms... not all get joint pain etc).
    taniaaust1 2,267 Replies
    • February 22, 2009
    • 02:49 AM
    • 0
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  • hi there,im not sure how much help i will be but i see someone else posted a link about ironoverload disease also know as hemochromatosis. i have just been diagnosed with hemochromatosis and im 19, i presented quite a few of the symptoms your son is presenting around age 9 it may be worth looking into because it is one of the most common genetic diseases around and can cause a whole heap of problems if left untreated. also do check out the b12 defieciency i also have just been diagnosed with that and since having the b12 injections i have found a lot of symptoms i have had have diminished greatly or vanished. especially being vegetarian there is a good chance he is lacking in b12. i myself am also a vegatarian. i hope this can help you out a little bit
    porcelain 36 Replies
    • February 23, 2009
    • 07:52 AM
    • 0
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  • It has been almost 1 year since these posts were made. My 15 year old vegatarian daughter has been having these same issues for 2 years. Have any of you found new information? Amyhi there,im not sure how much help i will be but i see someone else posted a link about ironoverload disease also know as hemochromatosis. i have just been diagnosed with hemochromatosis and im 19, i presented quite a few of the symptoms your son is presenting around age 9 it may be worth looking into because it is one of the most common genetic diseases around and can cause a whole heap of problems if left untreated. also do check out the b12 defieciency i also have just been diagnosed with that and since having the b12 injections i have found a lot of symptoms i have had have diminished greatly or vanished. especially being vegetarian there is a good chance he is lacking in b12. i myself am also a vegatarian. i hope this can help you out a little bit
    Anonymous 42,789 Replies
    • December 2, 2009
    • 03:46 PM
    • 0
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