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Old 03-21-2013, 11:31 PM   #1
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Not sure if I should trust my gut or not, help me please?!

This is a S/O of my own thread a little while back in OT about gut feelings. I would love it if anyone with medical knowledge and/or is a Super Google Ninja and/or has a crazy good mom gut because I feel like mine is broken right now. Please read this and tell me if A) I'm crazy and need to chill out, B) you think there is something going on, but to back off with the doctors and just keep an eye on him to see if it gets worse or C) there is something going on and I need to push the issue.

My DS is 3 years old. Since December he has complained off and on that his "tummy hurts", one time he became particularly upset and was actually pointing to his chest rather than his stomach - this occured during one of this OT therapy sessions and the therapist promptly came to get me, he was fine after about 5 minutes of crying. This occurs randomly and does not seem to necessarily coincide with meal times (this one is tough, because he is only a toddler and can't really verbalize what the pain is or where exactly...so it could be anything from gas to stabbing pain to just plain hunger). He doesn't always cry during these "episodes" but he is definitely uncomfortable, and if it does happen around mealtime he refuses to eat. He belches, a LOT. Sometimes 6-8 times while eating and a few times an hour outside of meals. When he does burp, sometimes a little something comes up and it isn't uncommon for him to regurgitate something when he laughs. He has been on the highest dose of reflux meds off and on since he was 5 months old, and it has never made any difference in his symptoms. When/if he does vomit, it can be something he ate 4+ hours earlier. He pees ALL.THE.TIME. Monday I tallied his trips to the bathroom - from 7am - 8pm, he peed 19 times...and he actually goes, too, they aren't false alarms (He has been potty trained for about 6 months now, maybe this is normal for newly potty-trained boys? My DD was never like that). He sleeps from 8pm - 7am, and takes a 2-3 hour nap every day - even so, he still seems to get tired easily and wants to spend a lot of time "relaxing" on the sofa. It's especially noticeable when we go for walks with the dog. My daughter will run ahead and we constantly have to wait for DS because he stops a lot, walks slow, and seems winded. In less than a years' time, his tonsils have enlarged to about 3x their normal size - again, they attributed this to reflux, but even 3 months of meds hasn't affected their size. An U/S he had done about a year ago revealed that his spleen was at the "upper limit of normal" for his age, but no one ever commented on it to me - I only discovered this reading through his chart. And lastly - about two weeks ago he suddenly developed a particular facial tic (hard eye blinking) and it has gotten to where he does it sometimes as much as every 45 seconds or so, all day long.

In a NORMAL kid, would any of these things bother you particularly? Any thoughts on any of them individually or as a whole?

(This is the super duper cliff notes version, DS actually has a combination of other medical issues which contributes to my hypochondriacism but the doctors we've seen have told us that despite this their tests are coming up as "normal". That's why I'm asking if any of these would raise a red flag for you in a normal, healthy kid or if I've just gone off my rocker.)

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Old 03-21-2013, 11:43 PM   #2
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Re: Not sure if I should trust my gut or not, help me please?!

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Old 03-21-2013, 11:55 PM   #3
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Re: Not sure if I should trust my gut or not, help me please?!

Mama I would be screaming bloody murder if the doctors didn't listen to me. Just one of those symptoms would have me concerned. All of them would have me camped out at the doctors office until they either referred me to another doctor or could come up with a diagnosis.
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Old 03-22-2013, 12:03 AM   #4
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Yes!


If your Drs are not listening to you find some that will!

As a mother of a child with cancer, ALWAYS listen to your instincts!

Does he have any lumps under the skin?
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Old 03-22-2013, 12:32 AM   #5
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Originally Posted by tinyblackdot
Yes!

If your Drs are not listening to you find some that will!

As a mother of a child with cancer, ALWAYS listen to your instincts!

Does he have any lumps under the skin?
Yes I agree find a dr that will
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Old 03-22-2013, 12:38 AM   #6
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If u don't like 1 doc opinion get another. My mom did for things she didn't like I think on meds/ cancer diagnosis. We did with my baby jaundice when told to bottle not breast at a visit. Mom instincts definitely. They are there for a reason. If my hubby's cousin would have taken one doc opion she would be dead in 6 months like 8 to 10 yrs ago but she still is here still battling her cancer although it has spread.
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Old 03-22-2013, 01:45 AM   #7
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Lots of red flags raised for me! Has he had his blood sugar tested recently? Peeing a lot and lethargy are indicators of Type 1 diabetes. My youngest brother was diagnosed at 2 so I'm always on the alert. Poor little guy!
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Old 03-22-2013, 07:47 AM   #8
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Re: Not sure if I should trust my gut or not, help me please?!

Quote:
Originally Posted by qsefthuko View Post
Mama I would be screaming bloody murder if the doctors didn't listen to me. Just one of those symptoms would have me concerned. All of them would have me camped out at the doctors office until they either referred me to another doctor or could come up with a diagnosis.
But see, this is where my dilemma is...what if you have screamed so much that you have no voice anymore? DS is followed by 6 different specialists and the ones he's seen recently more-or-less indicate that I'm overreacting. I'm glad to see that other moms agree that these things don't sound normal, but I'm just not sure what to do about it.

Quote:
Originally Posted by tinyblackdot View Post
Yes!

If your Drs are not listening to you find some that will!

As a mother of a child with cancer, ALWAYS listen to your instincts!

Does he have any lumps under the skin?
No, no lumps that I've seen. And we've seen numerous doctors, hence the reason why I feel like I might just be going crazy. DS has been in and out of doctor's offices and hospitals all of his life for his other issues (he has a couple minor heart defects, chronic bronchitis/pneumonia, and severe feeding difficulties/won't eat solid foods, but I've been assured that none of these are contributing to any of the above symptoms). I recognize that I'm a little more paranoid about him than I would be if I saw these sorts of things in my older DD, so that's why I posted to make sure I wasn't off base. Every test they've done has been normal. I alternate between crying, screaming, and .

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Originally Posted by sillymama View Post
Lots of red flags raised for me! Has he had his blood sugar tested recently? Peeing a lot and lethargy are indicators of Type 1 diabetes. My youngest brother was diagnosed at 2 so I'm always on the alert. Poor little guy!
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?
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Old 03-22-2013, 08:16 AM   #9
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Re: Not sure if I should trust my gut or not, help me please?!

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.
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Old 03-22-2013, 08:29 AM   #10
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Re: Not sure if I should trust my gut or not, help me please?!

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.
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