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Discussion Starter #1
<p>My DS has low tone, no other diagnosis except a swallowing disorder that is now thought to be related to low tone. </p>
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<p>In the past few weeks he has begun complaining of being tired a lot. I'm not sure if he's complaining because this is a new thing, or because he finally has the verbal skills to tell up how tired he is (he's 27 months). Even an hour after a good night's sleep he'll want to lie down saying 'tired, mommy, tired.' He can walk, and he used to want to walk all the time, but now he's asking to be carried more.</p>
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<p>When I called the nurse at his peds office she scheduled him in for a long office consult at the earliest possible time, so he's going in tomorrow morning.</p>
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<p>Because of the short notice I couldn't request which doc in the practice to see. His regular pediatrician is awesome, but some of the docs in her practice aren't. In case we get one of the docs who isn't entirely top notch, I'm trying to come up with a list of things to test for, or people to be referred to.</p>
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<p>- full blood panel, including thyroid and blood sugar (I'm thinking this should be done immediately.)</p>
<p>- possible investigation of mitochondrial or metabolic issues</p>
<p>- referral to a development ped if nothing is found</p>
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<p>Any other ideas?</p>
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<p>TIA</p>
 

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<p><br>
My 10 yr old also gets tired easily and has low muscle tone.  So far doctors have not found a cause for it.  I think the blood tests you are doing are great.  I would also ask for a referal to see a neurologist.  We see a good one at Childrens in Boston and he is good at doing blood work and refering us to other specialists within Childrens for further testing (which he has done alot).  He also sees us every 6 months. </p>
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<p>I am sure other posters will have some good advice on what to test for.  In my sons case I think its at least related to his poor eating habits (he eats very little variety and has a small appetite) and his poor walking ability.  He walks with his feet realy pointed in and often complains that his feet hurt after school which I think has something to do with beeing tired alot.  He has to work alot harder to do everyday things.  I let him rest whenever he wants to when he is at home.</p>
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<p>Jessica.</p>
 

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<p>My DS has low tone, low endurance for sustained activities, etc.  He has a sensory processing disorder and autism diagnosis.  I think low tone is one of the indicators of SPD--does he have anything else that would point to that?</p>
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<p>I agree with a full blood workup--that would rule out blood disorders, anemia, thyroid issues, and most oncological things. </p>
 

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<p>Oh, and I almost forgot--have they tested for cerebral palsy or other muscle disorders?</p>
 

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Discussion Starter #5
<p>I just got back, got one of the good docs. He had a bunch of blood work for infectious things (mainly to rule them out), a CBC with sedimentation, and a check on muscular function. If it all comes back normal then we'll get a referral to a pediatric neurologist.</p>
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<p>Lego_mom: we live near Boston so maybe we'll go the the neurologist there. It's good to hear he's good.</p>
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<p>AllyRae: He shows no sign of anything developmental. He just had his one year ei evaluation and he's completely on track with everything but gross motor and feeding. So it seems to be purely physical, so far anyway. They haven't yet tested him for CP but I've been aware that's one of the things that might be going on. Except that he doesn't show any favoritism of one side and I think that's often an indicator.</p>
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<p>(Still figuring out the new site, can't get multiquote to work.)</p>
 

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<p>Obviously I'm too late to this thread, but on the panel--see if they test his insulin level.  They would argue that they checked his sugar, but I personally had too much insulin (hyperinsulin/hyperinsulinaemia) for 17 years undiagnosed and misdiagnosed because they kept checking my sugar and not my insulin levels.</p>
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<p>It's not part of any standard panel.  I'm hoping they might have ordered it with a metabolic panel, though.  But ask.  And good luck.</p>
 

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<p>It looks like you have lots of good ideas for testing, especially the metabolic testing.  My son also has low tone and went through a prolonged period where he was incredibly lethargic.  In his case, it ended up being a food sensitivity or allergy (haven't had him tested for this particular food but to others) to sunflower oil.  Once we pulled that out, he was a ton better almost immediately.  There are many things to look at but I would look at foods if you don't get any answers with your other testing. Good luck....</p>
 

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<p>One of my DD has low tone and had gross motor/ social delays from birth to age 5. Now she is still a lethargic & a bit behind on gross motor skills---but she has made great gains!</p>
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<p>She had all the blood work, allergy testing, etc and it came back fine.</p>
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<p>She was a 'floppy' baby and not very mobile.She had OT & PT therapies from age 18 months- 4.5. It made a HUGE difference. She still struggles with endurance a bit, but her tone and general abilities have improved so much. She has a CP diagnosis (trunk & legs)...she is fully ambulatory, but was late on all gross motor skills. You would not 'guess' how much work it is for her to do general physical things if you did not know her history. She is in PreK now and blends right in! CP can be subtle, which a lot of people do not consider.</p>
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<p>Have you gotten involved in Early Intervention? They were very helpful as well.</p>
 

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Discussion Starter #9
<p>Heatherdeg- If we get nowhere with this and the fatigue gets worse, I'll definitely ask for an insulin level test.</p>
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<p>APToddlermama- I hadn't thought about food sensitivities. This did start happening about when he began taking solids, about six weeks ago, so that's worth considering.</p>
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<p>KCMichigan- He is in EI, has been for a year, OT, PT, and feeding therapy. They are great, and he's made all sorts of progress. His case manager agrees with the need for more testing. I've been wondering about CP, too.</p>
 

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<p>Please note that I replied to this last night....before any other replies....but when I hit "submit", the site was taken down for some maintence, so I had to save it and post it tonight.  So, I'm sorry if any of this is redundant.  I haven't read the other replies yet.</p>
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<p>Well, frankly, low tone in and of itself CAN BE enough for a young child to be exhausted.  Low tone kids have to expend two or three times the energy as typical kids to do the *exact same* behaviors.  The definition of low tone pretty much is that the muscles lack the energy to keep going--helping the muscles get stronger w/exercises can help, but it doesn't eliminate the problem (low tone doesn't necessarily mean "weak"--it means lacking the ability to keep going at a higher rate).  And 2-2.5 yrs old is a time for a lot of new skills as well as physical growth.  I can distinctly remember my low tone kid getting super exhausted at that age....and his low tone is definitely not been enough to cause swallowing issues.  My older son is now 5 and the younger is 27 mos old (no health problems aside from asthma).  The 2 yr old is exhausted just b/c he is 2.</p>
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<p>My 5 yr old had serious exhaustion at one point due to being anemic--once that was cleared up, it got better. </p>
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<p>Heart conditions, but you'd be seeing other symptoms with those.</p>
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<p>Lead poisoning, even very mild, can trigger other problems (like anemia and exhaustion). Plus all the things that you mentioned.  I'm firmly of the belief that the cause of low tone should be searched for, just to be on the safe side.  So, ds has had many of the tests you mentioned, including basic metabolics and such. </p>
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<p>GL! Hope he is better soon!</p>
 

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<p><br><br>
That is exactly when my son started to decline.... but it took us a long time to unravel what was going on. </p>
<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>Wild Lupine</strong> <a href="/community/forum/thread/1278732/extreme-fatigue-in-low-tone-toddler-what-to-test-for#post_16040907"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border-bottom:0px solid;border-left:0px solid;border-top:0px solid;border-right:0px solid;"></a><br><br><p> </p>
<p>APToddlermama- I hadn't thought about food sensitivities. This did start happening about when he began taking solids, about six weeks ago, so that's worth considering.</p>
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<p>Yeah... I'm also a huge fan of trying to rule out food issues.  I have an Excel spreadsheet I can send you to help you track it if you need it.  Just pm me with your regular e-mail addy (I can't send them through pms).  It prints out to a single page--so it's not so bad.  :)</p>
 
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