Rebecca VA Posted January 4, 2011 Share Posted January 4, 2011 My 13-year-old told me this afternoon that she recently (since Thanksgiving) has been having trouble focusing and converting her ballet and Pilates teachers' verbal instructions into actions. She is noticing more trouble with schoolwork (she was having trouble today with Latin vocabulary words that she's known perfectly for over a year), with her speech (she is stuttering and stammering), and with her focus in general (her thoughts shift around and sometimes disappear while she's thinking). She has always had trouble in these areas, but she has been steadily getting better. I thought she was out of the woods. She hasn't had a recent headache, psychological trauma, or injury of any sort. I can't imagine that she's still growing, because I think she's probably as tall as she's going to get (tallness doesn't run in our family, and she is already taller than anyone would expect). What should I do? Should I make an appointment with a doctor? If so, what kind? Does this sound serious, or just normal for a 13-year-old? I'm interested to hear anyone's thoughts or similar experiences. Quote Link to comment Share on other sites More sharing options...
EKS Posted January 4, 2011 Share Posted January 4, 2011 Is she getting enough sleep? Is she distracted or concerned by something going on in her life? Other things I would try would be more water, omega-3s, and protein at every meal. I hope things get better soon. Quote Link to comment Share on other sites More sharing options...
Rebecca VA Posted January 4, 2011 Author Share Posted January 4, 2011 What's strange is that she's sleeping much more than usual. She's eating well, plenty of protein, three Omega Brites a day. I'm so careful about her diet. I'll encourage her to drink more water. She doesn't seem nervous about anything. In fact, I had to cancel an audition for a prestigious ballet summer intensive because she did almost no exercise over Christmas vacation to prepare for it. I was shocked, because she had seemed to want this opportunity very much and then blew it off. She basically ate and slept over Christmas break. Thanks for your kind words! Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 5, 2011 Share Posted January 5, 2011 Are you sure she's not fighting the flu bug that is going around? Did she receive any vaccines? (Not to be morbid, but you can have that kind of regression after some of them.) Is she having any hormone changes? Quote Link to comment Share on other sites More sharing options...
Rebecca VA Posted January 5, 2011 Author Share Posted January 5, 2011 She did have a slight fever and lots of fatigue the week before Christmas. That's why I didn't pressure her a whole lot. She still hasn't bounced back from her sickness. However, she said this started around Thanksgiving. So it's possible her illness intensified her symptoms, but the symptoms were there first. She hasn't had a vaccine since she was about three. Quote Link to comment Share on other sites More sharing options...
LizzyBee Posted January 5, 2011 Share Posted January 5, 2011 I would see a doctor and ask for a referral to a neurologist. In the meantime, I'd have her write out as much detail as she can about her symptoms since Thanksgiving, then start tracking them daily. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 5, 2011 Share Posted January 5, 2011 :grouphug: Reading your post reminded me of how I was when I tried to go low-carb just to be healthy. :glare: I got to the point that I couldn't express a complete thought without getting muddled, and I started getting really worried. Then one day, I noticed the problem cleared up right after I had a sweet drink. It was so noticeable that I decided to add more carbs to my diet and I went back to normal. Because of all this, I'm wondering about your dd's blood sugar. After a virus, my blood sugar can get funny for awhile. I hope you get the help you need and all goes well for you and your dd. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 5, 2011 Share Posted January 5, 2011 Some random thoughts: anemia--esp. if her cycles have started thyroid problems--again, common in teens but often overlooked blood sugar issues seizures---what you describe happens to my daughter with seizures and can take weeks to get over mono or other long lasting virus If there haven't been any changes medication, diet, etc. that could explain this, I would see the doctor and get some basic blood work done and go from there. Quote Link to comment Share on other sites More sharing options...
Celia Posted January 8, 2011 Share Posted January 8, 2011 Personally, I would look into this right away. It has potential to be serious. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted January 8, 2011 Share Posted January 8, 2011 My 13-year-old told me this afternoon that she recently (since Thanksgiving) has been having trouble focusing and converting her ballet and Pilates teachers' verbal instructions into actions. She is noticing more trouble with schoolwork (she was having trouble today with Latin vocabulary words that she's known perfectly for over a year), with her speech (she is stuttering and stammering), and with her focus in general (her thoughts shift around and sometimes disappear while she's thinking). She has always had trouble in these areas, but she has been steadily getting better. I thought she was out of the woods. She hasn't had a recent headache, psychological trauma, or injury of any sort. I can't imagine that she's still growing, because I think she's probably as tall as she's going to get (tallness doesn't run in our family, and she is already taller than anyone would expect). What should I do? Should I make an appointment with a doctor? If so, what kind? Does this sound serious, or just normal for a 13-year-old? I'm interested to hear anyone's thoughts or similar experiences. My son had symptoms like that when he had Lyme disease. I would take her into the doctor to be sure nothing is going on. Not to panic you, but my friends ds had similar symptoms and he had a brain tumor. He is fine now. they caught it and it was not malignant, but was causing all sorts of weird symptoms. Faithe Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted January 8, 2011 Share Posted January 8, 2011 She did have a slight fever and lots of fatigue the week before Christmas. That's why I didn't pressure her a whole lot. She still hasn't bounced back from her sickness. However, she said this started around Thanksgiving. So it's possible her illness intensified her symptoms, but the symptoms were there first. She hasn't had a vaccine since she was about three. This really does sound like Lyme disease. Make sure your doctor runs a western blot test. The other lyme titers are unreliable. If it is Lyme make sure they give your daughter the ful 28 day anti biotic...and not just 10 or 21 days and itshould be doxycyclin...not amoxocillin. Good luck. faithe Quote Link to comment Share on other sites More sharing options...
Celia Posted January 8, 2011 Share Posted January 8, 2011 My son had symptoms like that when he had Lyme disease. I would take her into the doctor to be sure nothing is going on. Not to panic you, but my friends ds had similar symptoms and he had a brain tumor. He is fine now. they caught it and it was not malignant, but was causing all sorts of weird symptoms. Faithe My MIL also had similar symptoms with a brain tumor. But you said she's had similar problems before so hopefully it's related to that and not nearly so serious! Quote Link to comment Share on other sites More sharing options...
Rebecca VA Posted January 8, 2011 Author Share Posted January 8, 2011 (edited) n/m Edited January 8, 2011 by Rebecca VA Quote Link to comment Share on other sites More sharing options...
Mom2J112903 Posted January 8, 2011 Share Posted January 8, 2011 With it being a sudden onset, I would not suspect an APD. :grouphug: I hope you find some answers. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 10, 2011 Share Posted January 10, 2011 (edited) -- Edited November 10, 2021 by prairiewindmomma Quote Link to comment Share on other sites More sharing options...
razorbackmama Posted January 10, 2011 Share Posted January 10, 2011 Merry at Hope has lots of experience in advanced Lyme disease - her husband has it. Another vote for thyroid issues. My vocabulary becomes extremely limited when my meds are off. When I was unmedicated, my thoughts and words were very simplistic because I couldn't comprehend anything else. I would definitely get her checked out. And I also would go for an immediate 2nd opinion if the doctor said, "Well, I don't find anything wrong with her......" Major pet peeve of mine LOL. Quote Link to comment Share on other sites More sharing options...
Rebecca VA Posted January 10, 2011 Author Share Posted January 10, 2011 (edited) Well, I did take her to the doctor this morning. She ordered five tubes of blood to be drawn and will be testing for everything from mono to Lyme to celiac and everything else that could cause a 13-year-old to lose energy and focus. She did say that if all the tests come back negative she'll suspect that it's a virus and go from there. My daughter has jaw surgery scheduled for tomorrow morning -- it has been scheduled for many months and cannot be cancelled on a whim. The doctor thought she would get through the surgery just fine and that the recuperation time (weeks) would give her time to rest. We've been out most of the day between doctor visits, pre-op registration, and shopping ahead of tomorrow's snowstorm. I'll update after the blood tests come in. P.S. Prairiewindmomma, I'm so sorry about your dear daughter. Thank you for being proactive to make sure others are aware of the potential for brain tumor. Edited January 10, 2011 by Rebecca VA Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 11, 2011 Share Posted January 11, 2011 Well, I did take her to the doctor this morning. She ordered five tubes of blood to be drawn and will be testing for everything from mono to Lyme to celiac and everything else that could cause a 13-year-old to lose energy and focus. She did say that if all the tests come back negative she'll suspect that it's a virus and go from there. My daughter has jaw surgery scheduled for tomorrow morning -- it has been scheduled for many months and cannot be cancelled on a whim. The doctor thought she would get through the surgery just fine and that the recuperation time (weeks) would give her time to rest. We've been out most of the day between doctor visits, pre-op registration, and shopping ahead of tomorrow's snowstorm. I'll update after the blood tests come in. P.S. Prairiewindmomma, I'm so sorry about your dear daughter. Thank you for being proactive to make sure others are aware of the potential for brain tumor. I'll be praying that everything went well with the surgery and you can get some answers to your other questions. One of my dd's had surgery this week last year. It was a long recovery but, at the same time, nice to have a relaxed recuperation inside during the cold, snowy weather. :grouphug: Quote Link to comment Share on other sites More sharing options...
Rebecca VA Posted February 3, 2011 Author Share Posted February 3, 2011 Update on my 14-year-old (she has just had a birthday): She's no better. The blood tests showed nothing wrong except low Vitamin D and the thyroid being borderline high. The doctor didn't ask me to come rushing back in for that, so I assume she's still in the normal range. She had her jaw surgery and lost about 10 pounds that she couldn't afford to lose. Her energy is very low. She's trying to put a puzzle together right now -- an easy one -- and it's using up all her strength. She has missed class after class of ballet and just shrugs it off, which is definitely a first for her. At least we know it's not Lyme, mono, celiac, anemia, or anything else serious. The doctor is very aware of Lyme disease, so I trust that she used the most sensitive tests to try to detect it. The doctor did say that if this continued after the surgery she would suspect it's a low-grade virus or even chronic fatigue syndrome and would consider treating her for that. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted February 3, 2011 Share Posted February 3, 2011 Can you get a copy of the blood test results? If her TSH is high that means that she is hypothryoid and that can explain a lot. Even borderline cases can really respond well to thyroid supplement. I would ask for a referral to a pediatric endocrinologist for further evaluation. Vitamin D can also cause symptoms. Did they give her supplements for that? She's no better. The blood tests showed nothing wrong except low Vitamin D and the thyroid being borderline high. . Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 3, 2011 Share Posted February 3, 2011 Agreed, you have two actually pretty serious things there that could explain your symptoms (thyroid and low D). I'd get the actual results and tests that were done and compare them to what you see online. As Ottakee said, you may be confused. A high TSH is actually an indication (usually) of LOW thyroid. Both hyper and hypothyroid can cause fatigue btw. Did he start her on a vitamin D supplement? I take one year-round, even in the summer. Guess I don't get my body out in the sun enough to store it up all winter. It makes a dramatic difference in energy, hormone stability (boo*s hurting), etc. Quote Link to comment Share on other sites More sharing options...
razorbackmama Posted February 4, 2011 Share Posted February 4, 2011 Can you get a copy of the blood test results? If her TSH is high that means that she is hypothryoid and that can explain a lot. Even borderline cases can really respond well to thyroid supplement. I would ask for a referral to a pediatric endocrinologist for further evaluation. Vitamin D can also cause symptoms. Did they give her supplements for that? Ditto. And chances are, if it's "borderline high," then it actually IS high, because almost every lab in the country uses the wrong range. TSH should be between .3 and 3.0. Anything above that is hypothyroidism and is a VERY likely candidate for the cause of her problems. Brain fog, loss of concentration, poor vocabulary, etc. are my main symptoms whenever my thyroid is out of whack. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted February 4, 2011 Share Posted February 4, 2011 Update on my 14-year-old (she has just had a birthday): She's no better. The blood tests showed nothing wrong except low Vitamin D and the thyroid being borderline high. The doctor didn't ask me to come rushing back in for that, so I assume she's still in the normal range. She had her jaw surgery and lost about 10 pounds that she couldn't afford to lose. Her energy is very low. She's trying to put a puzzle together right now -- an easy one -- and it's using up all her strength. She has missed class after class of ballet and just shrugs it off, which is definitely a first for her. At least we know it's not Lyme, mono, celiac, anemia, or anything else serious. The doctor is very aware of Lyme disease, so I trust that she used the most sensitive tests to try to detect it. The doctor did say that if this continued after the surgery she would suspect it's a low-grade virus or even chronic fatigue syndrome and would consider treating her for that. I'm glad to read this update, even if there's no good news yet. About the weight loss, when my dd had her surgery she also lost 10 pounds from the time of the surgery to her 1 month post-op check up. She was very slim 69 pounds to start with and went down to 59. She was scary-skinny. Even though it was a huge percentage of her body weight, they said they don't worry until they lose 15 pounds. That didn't make me feel better. At her 6 month visit, she was nearly back to normal. The other family I'm in touch with who had a dd who had same surgery followed a similar pattern. These girls had back surgery and they couldn't eat, so I can imagine how much worse it would be for your dd having had her jaw operated on. Also, there is a loss of muscle mass from becoming sedentary which can affect strength and energy levels. *One thing that was an issue that I should have been more on top of was that the pain meds were prescribed for her original weight.* I don't know if your dd is still on pain meds. They can also do a job on cognitive abilities while they're in their system, as well as effect energy and strength, too, I would think. I would keep on top of the thyroid and the vitamin D, but don't worry too much now. Your dd is still in the recuperative stages of the surgery. It took my dd nearly three months to be normal again. One final thought...in your first post you said that your dd was experiencing the original problems since about Thanksgiving and later you said that the surgery was scheduled months in advance. Do you remember when you decided on surgery and scheduled it? Do the times coincide? When my dd realized for the first time that she would need surgery, she really changed. She experienced anxiety attacks, feeling like she couldn't breathe, and would break into tears at every doctor's appointment, even though we did what we could not to discuss the unnecessary, gory details in front of her. She was absolutely not herself, and it was hard for me to deal with because, of all my dc, she has always been the most even-tempered, easy-going one. Then, after surgery, she became very depressed for the first couple of months. I'm just wondering if your dd could be dealing with the emotions of anticipating surgery and the physical and emotional after-effects. She could have been anxious and depressed and, therefore, distracted and that could have looked like APD, even if, like my dd, that was not an aspect of her normal temperment. The good news is that if this is what it is, it will all pass. I wondered if my dd would ever be the same, if she would suffer from PTSD, but she's returned to her content, easy going self. Thank God! And, I mean that with all sincerity. Please keep us updated on how you and she are doing. Quote Link to comment Share on other sites More sharing options...
Misty Posted February 4, 2011 Share Posted February 4, 2011 Sounds like maybe an autoimmune response has been triggered. Did she have any type of virus or bacterial infection around Thanksgiving time? Anything traumatic happen that could have turned on a celiac gene? Sometimes the antibodies from bacteria, etc. can attack the brain and there is a sudden onset of symptoms.. It's an autoimmune response. Anytime there is a sudden onset of symptoms like that, you must think about an autoimmune issue. PANDAS is one to look into but there are plenty others. Quote Link to comment Share on other sites More sharing options...
Misty Posted February 4, 2011 Share Posted February 4, 2011 At least we know it's not Lyme, mono, celiac, anemia, or anything else serious. The doctor did say that if this continued after the surgery she would suspect it's a low-grade virus or even chronic fatigue syndrome and would consider treating her for that. 1st.. do not accept chronic fatigue as a final diagnosis.. Chronic fatigue is a result of another more serious issue (such as celiac, etc.).. 2nd.. Celiac blood tests are EXTREMELY unreliable.. Don't accept that she doesn't have celiac disease based on a negative blood test. Celiac disease is so difficult to diagnose and should not be ruled out based on one blood test. Keep searching and don't stop until you find answers for your daughter!! Quote Link to comment Share on other sites More sharing options...
Rebecca VA Posted February 5, 2011 Author Share Posted February 5, 2011 (edited) We went back to the doctor late yesterday afternoon. She told us again about the blood tests -- all negative, except for a somewhat low Vitamin D level and borderline hyperthyroid. She is re-testing the thyroid; she said she absolutely doesn't want to treat it unless it's necessary. She said the medicines that are used for hyperthyroid are really harsh (as opposed to hypothyroid drugs, which are safe enough to give to pregnant ladies -- I hope I'm not mixing these up). As long as my daughter can stay on the good side of the borderline, the doctor will just monitor and not act. Mono was completely negative -- she's never even been exposed to it. Lyme was completely negative. No anemia. The doctor tested for all kinds of obscure things that can indicate cancer, etc., and everything was negative. She gave her a B-12 shot to boost her energy. I hope that helps!! Kelli, thank you for thinking that there might be psychological issues involved regarding the surgery, but that would be extremely unlikely in this child. She's tougher than she looks. She didn't even need pain meds. Plus, the surgery's over and she's drooping as badly as before. I've asked her over and over if she wants to quit ballet, and she insists that she wants to get well so she can participate fully. It's bothering her that she feels so weak and unfocused and has to sit out part of every class. So we'll wait and see what happens. Schoolwork is still getting done (though slowly, and with a lot of behind-the-scenes prayers for patience from me) and she's still getting to most of her activities. She really does a lot of activities -- drawing, watercolor, youth choir, tons of ballet, pilates, Bright Lights -- but she enjoys this. She's a hyperactive teen in a body that's (currently) weak and run-down -- not a fun thing to be. Edited February 5, 2011 by Rebecca VA Quote Link to comment Share on other sites More sharing options...
Ottakee Posted February 5, 2011 Share Posted February 5, 2011 Did the doctor test the sub thyroid levels as well? If they are sitll off or borderline, I would still suggest a pediatric endocrinologist. For some people, just a bit off makes a huge difference. Quote Link to comment Share on other sites More sharing options...
Leonor Posted February 5, 2011 Share Posted February 5, 2011 I would still suggest a pediatric endocrinologist. For some people, just a bit off makes a huge difference. I agree. If the thyroid is off, it will affect learning. Depending on what the issues are, there is natural supplementation for the thyroid. She is going or in puberty. Sometimes this brings on immune system issues. The hormonal changes can affect different children in different ways. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted February 5, 2011 Share Posted February 5, 2011 We went back to the doctor late yesterday afternoon. She told us again about the blood tests -- all negative, except for a somewhat low Vitamin D level and borderline hyperthyroid. She is re-testing the thyroid; she said she absolutely doesn't want to treat it unless it's necessary. She said the medicines that are used for hyperthyroid are really harsh (as opposed to hypothyroid drugs, which are safe enough to give to pregnant ladies -- I hope I'm not mixing these up). As long as my daughter can stay on the good side of the borderline, the doctor will just monitor and not act. I have a family member and a friend with Graves disease (hyperthyroid), and you are right about the meds. Quote Link to comment Share on other sites More sharing options...
razorbackmama Posted February 5, 2011 Share Posted February 5, 2011 We went back to the doctor late yesterday afternoon. She told us again about the blood tests -- all negative, except for a somewhat low Vitamin D level and borderline hyperthyroid. She is re-testing the thyroid; she said she absolutely doesn't want to treat it unless it's necessary. She said the medicines that are used for hyperthyroid are really harsh (as opposed to hypothyroid drugs, which are safe enough to give to pregnant ladies -- I hope I'm not mixing these up). That is correct. The drugs used to treat hypothyroidism aren't really "drugs" - they are either natural or synthetic forms of thyroid hormone, intended to get the thyroid levels up to where they need to be. However, with hyperthyroidism, there is already too much hormone in the blood, and the drugs used to combat that are true drugs, and yes, much harsher. Did the doctor just test TSH? Free T3 and Free T4 need to be checked as well. I agree with the recommendation for a pediatric endocrinologist. It's amazing how much one tiny gland can impact ALL body systems. I have hypothyroidism but when my meds are off it affects my hair (falls out), my weight, and mostly my brain function. Does your daughter have heart palpitations? That can be a symptom of hyperthyroidism as well. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 5, 2011 Share Posted February 5, 2011 I'd still get the exact results of the labs (not the doctor's interpretation) and compare them to what you see online. There is a school of thought that hypERthyroid is actually because the body is over-reacting to hypothyroid. There's also something called Wilson's and thyroid problems you can get after severe stress. Is she eating a salad every day? I mean a real big salad (3 cups) that is half lettuce or spinach and the remainder lots of real veges? I was just reading an article on how the natural nitrates in spinach fuel our mitochondria for energy. I know eating a good salad every day makes a huge difference in mine. (I used to be on thyroid meds and am now off.) Thyroid is playing with fire, one of those things that affects you dramatically and can be misinterpreted or interpreted lots of different ways. I'd definitely look for more opinions, if only to confirm. Mary Shomon has a book on thyroid that should be at your local library. That would probably be a good place for you to start. Quote Link to comment Share on other sites More sharing options...
razorbackmama Posted February 6, 2011 Share Posted February 6, 2011 I'd still get the exact results of the labs (not the doctor's interpretation) and compare them to what you see online. I agree. The doctor may be going by what the lab says, which is most likely the wrong range. The American Thyroid Association has specified that the range of normal should be .3-3.0 for a TSH, and most labs use roughly .5-4.5 or, worse yet, .5-5.0. Now, I will say that it's more common for hypothyroidism to be missed than hyper but definitely find out the particular numbers and research whether it is truly normal, borderline, or abnormal. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.