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Old 03-22-2013, 10:35 PM   #21
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I would consult a naturopath. They look at the whole person, the systems, the issues and really delve into the issue. Think of them like a Dr. House without the invasive tests. It's worth someone else opinion/strategy/mind set.

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Old 03-23-2013, 10:14 PM   #22
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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 I 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.
I have been researching until my eyes turn bloodshot - even diving in to medical journals. I'm doing what I can but I feel so alone, and the fact that family and docs keep telling me that he's ok just leave me questioning myself more than anything.

Thank you for your info! As far as the peeing, no he hasn't always been like this...though it was hard to tell when he was in diapers exactly how often he went. But over the course of the 6 mos since he's been PT it seems to have been getting more frequent. It smells pretty strong in the mornings (he is not night trained so I'm referring to his wet trainers) but all of his daytime trips to the potty are pretty diluted I'd say with no real smell to it. Also, he really doesnt drink that much - he has some major food aversions and the only thing he drinks is PediaSmart, and even then its maybe 4 cups a day. Certainly doesnt seem enough to warrant 19 bathroom trips!

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Old 03-23-2013, 11:03 PM   #23
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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.
He had a CT done about a year ago, but most of these things came about more recently. I wouldnt say his Drs are bullying me, its more like they don't have answers or know of a way to find answers because they aren't looking at the whole picture. I can't tell you how many times they have said that he will hopefully outgrow something...how is that for a non answer.

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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?
Thank you for your insight! I know you have some medical background so I appreciate that. Yes, an organ at the high end of normal is still normal, I just thought it was worth noting because of his enlarged tonsils and lymph modes, since the spleen is part of the same system.

The long story longer is that my son sees ENT, cardiology, pulmonology, and GI as well as having SLP and OT therapists. He has an aorta that arches to the wrong side (this required 2 surgeries) and 2 minor heart defects, all of which I have been assured should not be causing any of these problems. He is prone to getting bronchitis/pneumonia in the winter thanks to a slightly weakened airway, but it only affects him when he is sick because it makes his cough unproductive (so they say). The reflux...well, that's debatable. By the drs own admission, no one has ever found evidence of reflux, not even during a PH probe, but they keep putting him on high dose meds anyway because its better than throwing your hands up and saying "I don't know"! The meds have never touched any one of his symptoms, and he has tried 3 different ones at maximum dosage.

The feeding is a daily struggle. He goes to feeding therapy twice a week because he does not eat solid foods. He gags, throws up, says it hurts and would rather starve than eat. This is one of the things we have been told by 2 different specialists that he will outgrow. Yeah sure...if only it were that easy!

And to be fair, my husband does have some neurological tics, so its quite possible that this part is genetic BUT...its the sudden onset and severity that bothers me most, especially because I know that DH's flare up when he is under a lot of stress, pain, or anxiety.

Ok, now that I've scared everyone off... I realize that my DS is somewhat of a walking talking cluster of health stuff, but that's part of why I asked what I asked because I'm so used to seeing him as having health issues that I can't be an unbiased observer. And I'm a worrier to boot. I really appreciate you guys talking thru this with me...I literally have no one left to help me sort it all out. What should be my next step?

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Old 03-24-2013, 11:36 PM   #24
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Has he ever seen a geneticist?


I do understand the no answers, its the worst when you know your mommy instincts are saying something isn't right and there are no answers in sight. Sometimes not having an answer can be a blessing. And sometime it can just take time for things to show up to complete the puzzle.

I hope you can get the answers you are looking for, and someone puts it all together for you.
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Old 03-25-2013, 08:51 AM   #25
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Re: Not sure if I should trust my gut or not, help me please?!

Does he eat a special diet? The first thing I would do if not is just take out common problem foods and add in probiotics/probiotic foods. So I would take out pasteurized milk, soy, food dyes/processed foods and add in whole foods and broth as much as possible, because it's very healing (the homemade kind). It sounds like he may have some digestive issues and anything could be causing that. Oh, and no GMOs either!! GMO corn especially can be very hard on the body.
I would be worried.
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Old 03-25-2013, 11:06 AM   #26
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Re: Not sure if I should trust my gut or not, help me please?!

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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...
It's funny you mention DiGeorge's, because that's the baby I always remember when the issue of "Mommy Gut" comes up. I was a nanny for a newborn who became progressively more fussy, colicky, and strangely ill over several months. I went to many of his doctor appointments with the mom, and the doctors all dismissed her. The mom would sometimes ask me if her baby seemed normal, and it was such a weird position for me. I finally told her that I never knew a mom who wanted a sick baby, so if she felt that something was wrong then she was probably right. So they kept going back to the doctor over and over. By the time this baby was 9 months he would throw up anything larger than a pea, had to sleep propped up or he would turn blue, was always sick... it was not right. The mom finally flipped out and demanded a full-body MRI. Turns out the baby had DiGeorge's and his trachea was pinched to about 5% of it's healthy diameter, he had only one kidney, and he had a heart malformation that required immediate surgery.

You don't sound like you want a sick child, but it sounds like you have one.


The frequent urination with normal glucose made me think of Diabetes Insipidus, though that's rare. Did they check for Sickle Cell Anemia? That seems like a possible culprit (frequent urination, breathlessness, chest pain, enlarged spleen...)

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Old 03-25-2013, 03:24 PM   #27
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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 tinyblackdot View Post
Has he ever seen a geneticist?


I do understand the no answers, its the worst when you know your mommy instincts are saying something isn't right and there are no answers in sight. Sometimes not having an answer can be a blessing. And sometime it can just take time for things to show up to complete the puzzle.

I hope you can get the answers you are looking for, and someone puts it all together for you.
Thank you. Yes, he has seen a geneticist, and they strongly suspect he may have something genetic going on but they say his symptoms are too vague to follow up on...it's like a needle in a field of haystacks at this point.

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Does he eat a special diet? The first thing I would do if not is just take out common problem foods and add in probiotics/probiotic foods. So I would take out pasteurized milk, soy, food dyes/processed foods and add in whole foods and broth as much as possible, because it's very healing (the homemade kind). It sounds like he may have some digestive issues and anything could be causing that. Oh, and no GMOs either!! GMO corn especially can be very hard on the body.
I would be worried.
We do give him probiotics, and yogurt/greek yogurt is one of his favorite foods. However, he is a very limited eater - the only thing he drinks is PediaSmart (to make sure he is getting enough nutrition), and the only things he really eats are pureed peas, some fruits (applesauce, blueberries, strawberries, and kiwi), and then the yogurt. He won't eat solid foods or soups. Could a simple dairy allergy cause these sorts of symptoms? Because his PediaSmart IS milk-based. He has never had any rashes or anything.

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It's funny you mention DiGeorge's, because that's the baby I always remember when the issue of "Mommy Gut" comes up. I was a nanny for a newborn who became progressively more fussy, colicky, and strangely ill over several months. I went to many of his doctor appointments with the mom, and the doctors all dismissed her. The mom would sometimes ask me if her baby seemed normal, and it was such a weird position for me. I finally told her that I never knew a mom who wanted a sick baby, so if she felt that something was wrong then she was probably right. So they kept going back to the doctor over and over. By the time this baby was 9 months he would throw up anything larger than a pea, had to sleep propped up or he would turn blue, was always sick... it was not right. The mom finally flipped out and demanded a full-body MRI. Turns out the baby had DiGeorge's and his trachea was pinched to about 5% of it's healthy diameter, he had only one kidney, and he had a heart malformation that required immediate surgery.

You don't sound like you want a sick child, but it sounds like you have one.


The frequent urination with normal glucose made me think of Diabetes Insipidus, though that's rare. Did they check for Sickle Cell Anemia? That seems like a possible culprit (frequent urination, breathlessness, chest pain, enlarged spleen...)
Ugh, I feel that mom's pain. It's frustrating! I'm glad she uncovered the problem though! DS has had many blood tests done, wouldn't a regular blood panel detect sickle cell? What sort of doctor handles diagnostics for things like diabetes?

I sent a video today of the eye tics to a nurse at the neurology dept today, she is going to take a look with the resident doctor and give me a call and let me know what she thinks.
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Old 03-25-2013, 04:23 PM   #28
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Re: Not sure if I should trust my gut or not, help me please?!

Yes I would be concerned. If your doctors aren't taking this seriously, I would be taking him to different doctors and finding someone who would.
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Old 03-25-2013, 04:54 PM   #29
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Re: Not sure if I should trust my gut or not, help me please?!

Find new doctors. Ask family and friends for referrals and then go and check your state board to make sure there have not been complaints and things like that. (search for: Professional regulation licensing in (your state name).

I had even taken my first child recently about her tinsels. They are a little bigger almost all the time. Second doctor explained in more detail and answer all my questions. Remember, there is no such a thing as a silly question. If the doctor does not want to answer, find another one. You are paying for their time, they should give you answers.

Good luck and keep us post it.
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Old 03-26-2013, 11:27 PM   #30
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Re: Not sure if I should trust my gut or not, help me please?!

Unfortunately the only doctor who is listening and taking everything into consideration is the one who is 6 hours away and the one we cannot make a trip to right now. Sigh.

I decided to get an organizer, a highlighter, and a notepad and go through all of his records with a fine tooth comb. I HAVE to get things in order because obviously this info is not getting relayed or acknowledged or answered. Sometimes though, like today, he has a really good day and then I am back to wondering if I'm a nutjob. Sigh again.

Thank you everyone for listening.
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