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Old 03-22-2013, 09:30 AM   #11
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Re: Not sure if I should trust my gut or not, help me please?!

Is your son hypotonic? Sorry, I can't remember all his health issues. If he is hypotonic I wouldn't be too stressed about the sleep and exhaustion thing, unless there is a sudden change and the change is not tied to his activity level. Kids with hypotonia have poor endurance and can sleep for longer periods of time.

There is a brain gut connection so if there is neurological abnormality (autism, malformation, damage etc..) the gut will often perform very poorly. I would be investigating motility problems and not just reflux based on his symptoms. I hesitate to write this cause I don't won't to freak you out but I know that some cardiac conditions can coincide with bad reflux but the connection isn't as strongly linked as it is to neurological issues.

Get the gut pain under control. Pain stresses kids out and relux can get worse when a kid is under stress. I find if I don't stay on top of the gut pain ds goes in a downward spiral. Reflux cause gut pain and the gut pain causes stress then stress makes the reflux worse which makes the pain worse.

Don't be afraid to ask for a Rx if need be. Sometimes Carafate is all that is needed but I also keep Tylenol with Codeine on hand for break through episodes that can't be controlled enough with meds to keep his pain level manageable. As an adult I have had reflux episodes so painful I could barely think so I can only imagine what little kids with bad reflux go though on a daily basis.

The only thing I can think of that causes excess urine is diabetes but I'm sure there are other possibilities I am not aware of as well.

Where there is smoke there is fire and your son's issues are casting a lot of smoke so I suspect there is some larger systemic problem whether it is genetic or metabolic I don't know.

Although mitochondrial disease would explain the exhaustion and mito disorders are notoriously hard to diagnose and with mito the more the body struggles with making energy the more the organs struggle to function. Mito can range from mild to severe. I have heard of some people not getting diagnosed with it until adulthood while some don't make it past 3 or 4 years old because their bodies can't cope.

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Old 03-22-2013, 09:32 AM   #12
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Re: Not sure if I should trust my gut or not, help me please?!

Any one single thing I might be willing to dismiss, but it sounds like there is something systematic going on. I would request a full blood panel to check all levels, get with a good pediatric GI and allergist, with the tics you might even consider a trip to the neurologist. Push mama, sounds like there could be something going on....
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Old 03-22-2013, 10:49 AM   #13
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Re: Not sure if I should trust my gut or not, help me please?!

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He had a bunch of blood tests done along with a urine test recently, all were normal including glucose. However, we weren't expecting to do any tests that day and so he didn't fast prior to that so I don't know if that alters the results significantly enough?
It's actually better that he didn't fast if they were testing for T1 diabetes. In the early stages, blood sugar can return to normal after a long time without eating so it may show that his blood sugar is fine. However, if a kid is developing diabetes, his blood sugar will be elevated after eating because his body can't handle the carbs that fast. Eventually, (by the time they are really sick) it won't matter when they test, blood sugar will always be high. But in the beginning stages, not necessarily.
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Old 03-22-2013, 01:19 PM   #14
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Re: Not sure if I should trust my gut or not, help me please?!

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Have you sought out a naturopath or doctor that takes a more holistic approach? My kids also have medical issues and they were the only ones willing to listen. Some of their suggestions might sound strange at first. So many of our friends with undiagnosed issues have found relief with a more natural approach when the traditional medical community won't listen.
I haven't, no. I really have no idea how to find one of those and I am not personally sure about their legitimacy but I'm willing to try about anything right now!

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I could be nothing or something so super simple that it gets overlooked. I would be concerned. DS was tested for everything under the sun for all of his issues as a baby and everything came back normal yet he still was having significant problems (dr agreed). Turned out his was a super simple fix but the his issues presented atypically so they were overlooked and weren't originally considered.
Can I ask how you came to a diagnosis after all the tests came back normal?

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Is your son hypotonic? Sorry, I can't remember all his health issues. If he is hypotonic I wouldn't be too stressed about the sleep and exhaustion thing, unless there is a sudden change and the change is not tied to his activity level. Kids with hypotonia have poor endurance and can sleep for longer periods of time.

There is a brain gut connection so if there is neurological abnormality (autism, malformation, damage etc..) the gut will often perform very poorly. I would be investigating motility problems and not just reflux based on his symptoms. I hesitate to write this cause I don't won't to freak you out but I know that some cardiac conditions can coincide with bad reflux but the connection isn't as strongly linked as it is to neurological issues.

Get the gut pain under control. Pain stresses kids out and relux can get worse when a kid is under stress. I find if I don't stay on top of the gut pain ds goes in a downward spiral. Reflux cause gut pain and the gut pain causes stress then stress makes the reflux worse which makes the pain worse.

Don't be afraid to ask for a Rx if need be. Sometimes Carafate is all that is needed but I also keep Tylenol with Codeine on hand for break through episodes that can't be controlled enough with meds to keep his pain level manageable. As an adult I have had reflux episodes so painful I could barely think so I can only imagine what little kids with bad reflux go though on a daily basis.

The only thing I can think of that causes excess urine is diabetes but I'm sure there are other possibilities I am not aware of as well.

Where there is smoke there is fire and your son's issues are casting a lot of smoke so I suspect there is some larger systemic problem whether it is genetic or metabolic I don't know.

Although mitochondrial disease would explain the exhaustion and mito disorders are notoriously hard to diagnose and with mito the more the body struggles with making energy the more the organs struggle to function. Mito can range from mild to severe. I have heard of some people not getting diagnosed with it until adulthood while some don't make it past 3 or 4 years old because their bodies can't cope.
To the bold: I didn't realize that neurological issues and gut issues went together. That's interesting, because he is also currently awaiting an autism evaluation that is slotted for the end of May. I'm not convinced he has typical autism, because he makes good eye contact and can communicate fairly well, but his speech can be repetitive, he shows aggression, has a freakishly amazing memory and now the tics so they want to check to be sure. Do you (or anyone) have any links or information about this connection? Who do you talk to, medically, about something like that? Also, do you know how to go about investigating mitochondrial disease? I don't even really know what that is...off to Google (don't worry, I'm a responsible Googler - I've learned my lesson numerous times!). DS has had two seperate genetic tests done because they had a strong suspicion he had DiGeorge Syndrome (missing link) and they were shocked when both came back normal, but they had no other options to proceed so it was just sort of dropped altogether. Seriously, this has been so draining...

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Originally Posted by mibarra View Post
Any one single thing I might be willing to dismiss, but it sounds like there is something systematic going on. I would request a full blood panel to check all levels, get with a good pediatric GI and allergist, with the tics you might even consider a trip to the neurologist. Push mama, sounds like there could be something going on....
They did just do a blood panel, and a couple values were abnormal but overall they said he was fine. He actually even had a lymph node biopsy done last summer and that came out fine, too. I guess I'm really irritated because DS JUST went and saw a pediatric GI at one of the best children's hospital about 2 weeks ago and she pretty much dismissed me. She told me that little kids often complain of pain but they have nothing to go on because toddlers are really unreliable when it comes to that (which I understand - heck, when she asked my son if he was hurting anywhere, he pointed to his scraped knee). And if it IS something systematic, who in the world deals with that? All of the dozen specialists we have seen have tunnel vision and don't look outside of their own specialty. That same GI doc, when asked about my son's ridiculous bathroom trips, just said "I'm not sure, that's really not something I deal with." Yeah, thanks.

He has a very good, understanding GI doctor at the Mayo Clinic, but she is 6 hours away and we cannot afford a trip there right now, so I feel stuck.

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It's actually better that he didn't fast if they were testing for T1 diabetes. In the early stages, blood sugar can return to normal after a long time without eating so it may show that his blood sugar is fine. However, if a kid is developing diabetes, his blood sugar will be elevated after eating because his body can't handle the carbs that fast. Eventually, (by the time they are really sick) it won't matter when they test, blood sugar will always be high. But in the beginning stages, not necessarily.
I guess I'd better ask to clarify if diabetes is still a consideration or if that has been ruled out. Like I said, his levels were normal and they didn't suggest any sort of follow up regarding it.

Thank you all for your suggestions and understanding... All of my family pretty much keeps telling me to drop it and blame his age, or just say he is quirky and that I need to lighten up. But I just can't shake the feeling that there is more going on and it keeps me up at night...I just feel lost.
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Old 03-22-2013, 01:42 PM   #15
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I feel your pain mama. Everyone dismissed me when I KNEW something was wrong with my oldest as a baby and toddler. Finally a naturopath took me seriously and we discovered that there were serious food sensitivities going on, then later with that info were able to find out that she also had Celiac disease. All the random symptoms (refusal of most solid food, erratic behavior, huge meltdowns, speech delays, rash, inability to gain weight, and trouble staying asleep) were suddenly all connected.
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Old 03-22-2013, 03:50 PM   #16
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Re: Not sure if I should trust my gut or not, help me please?!

In a normal child..yes, they would be red flags. In Owen...big red flags. Your not overreacting at all
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Old 03-22-2013, 03:50 PM   #17
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Re: Not sure if I should trust my gut or not, help me please?!

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Originally Posted by UnderTheStars View Post
I guess I'd better ask to clarify if diabetes is still a consideration or if that has been ruled out. Like I said, his levels were normal and they didn't suggest any sort of follow up regarding it.

Thank you all for your suggestions and understanding... All of my family pretty much keeps telling me to drop it and blame his age, or just say he is quirky and that I need to lighten up. But I just can't shake the feeling that there is more going on and it keeps me up at night...I just feel lost.
Excessive urination is a symptom of T1 diabetes. Even the stomach aches and tiredness could be a symptom if he were getting sick enough. However, the eye tics and other things you mentioned aren't. My guess is that he's NOT developing Type 1 diabetes. Because if his blood sugar is already high enough that his body is trying to pee out the excess glucose, they would have found glucose in his urine. If you're still worried, give him a whole bunch of juice and take him to a pharmacy and ask they test his blood sugar. (or find a friend with a meter) If his bg is over 200, there's a problem.

Is the excessive urination a fairly recent thing? Or has he always been a heavy wetter? There is something called diabetes insipidus. It's when the body doesn't make a hormone that concentrates urine so they drink and pee A LOT. Is his pee ever dark? Or is it always really diluted? Does it have a bitter smell? From what I understand, diabetes insipidus isn't necessarily dangerous, other than they develop a obsession with water b/c they are always thirsty. But there's a pill they can take to replace the hormone that will start concentrating their urine.

I don't know what other problems your son has, but the ones you've mentioned definitely don't sound normal. I have a DS who had chronic diarrhea and was losing weight. One dr blew it off and when I switched drs and asked to see a specialist they ran every test under the sun. Everything came back normal. I was frustrated b/c I knew that having explosive diarrhea was definitely NOT normal! I happened to run across some info online about a fructose intolerance, asked that they test him for it, and it turned out to be the cause of his problems! My point is-- sometimes you just have to keep looking. It's hard when you don't even know what to test for. But keep listening to your gut and doing what research you can.

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Old 03-22-2013, 07:17 PM   #18
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Re: Not sure if I should trust my gut or not, help me please?!

I would find a second opinion and keep going until you find someone that listens. Your Mom's intuition is right on, unfortunately, it sounds like something is up
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Old 03-22-2013, 10:03 PM   #19
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My dd was being followed by a ton of specialist and Drs too before her diagnosis.

Don't let them bully you into NOT being your child's advocate.

Have they done a ct scan?

Neuroblastoma is something that I would be concerned about.
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Old 03-22-2013, 10:18 PM   #20
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Re: Not sure if I should trust my gut or not, help me please?!

It is difficult to say. Exessive urination in the absence of blood sugar issues may simply be a child who likes to use the restroom which can be pretty common. An organ at the high end of normal is still normal. No real reason for the docs to alert you to a normal test result unless they were really concerned amd that's why they tested.

Intermitent andominal pain can be just about anything from hunger or constipation to something serious. It does sound like he is being followed for the reflux.

Ticks are common in children on the spectrum as can be a fascination with toileting and a hyperawareness of sensations, like hunger, etc. Lethargy can come from heart issues, could be lots of things.

It sound like your LO has a lot going on that may be causing some of the issues you are observing. My suggestion would be to find a primary care physician who will serve as a case manager and wiill coordinate the care of all of the specialists. Without knowing what specialists you LO sees and why, it is hard to say whether you are looking at red flags that aren't being addressed. It does sound like your GI doc could be more aggressive in treating the reflux. Do you have someone working on the feeding issue?
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