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momof4rugratz

No clue where I belong now. Lost confused and worried.

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momof4rugratz

Ok I am so dang lost. I went to a Endo after my son was having reading went high they made him sick. He also had a glucose drink he failed. Endo ordered test for gene. here is results from 2 yrs ago

 

GAD-65 AB > 30.0 H

C-PEPTIDE 2.1

ISLET CELL ANTIBODY (NEG)

 

The Endo said lets just watch him for a few months his A1c then stayed below 6 for 6 months so the doctor said he isnt diabetic no clue whats going on. I said what does the GAD mean because other Endo in California said he souldnt have any ment he was a gene carriar, well long story short he said well if you join my study I will show you that means nothing. A few more visitis dealing with him I was gone. Back to pediatriction who said Fine we will send you to the GI doctor see if the nissen fundoplication he had at 1 is the issue. The GI doctor ran test said NOPE he is Diabetic and the Nissen wont cause these issue. Back to the pediatrition who is now lost and said ok well keep taking his reading if you want but if both Endo said he isnt then he isnt. I said FINE then please just how do I keep him from feeling sick when his reading hit over 200 . He had no answers for me. For last 2 years I have been just watching what he eats and making sure he eats good stuff. I also switched pediatricions too since that one was clearly puzzled. About 8 months ago things with son seemed to get worse. He had more episodes of sugar going above 250 and when he wakes it was at least 5 days worth of 140 or higher with fasting. Went to peds and his A1c was 6.5 he said well lets see how he does in 3 months well 3 months later we get 6.9 A1c he put him on metformin said lets check him in 6 weeks. In that time son did ok but he was like never hungry and was so hard for him to take the pill. Yet A1c was a sold 6 at 6 weeks. That was good I though. My son was not liking the metformain neither was i because my son is almost 13 he is 65 pounds he has a nissian so he is small and very thin. The pill made him not hungry and so hard to get it down. I told doctor how we felt and he said I cant make him take it but he needs to even crush it up. I said fine and he is finding us a new endo YAYAYYAYAY. But this week has been awful for my son Yesturday he got up sugar 280 he ate his breakfast went school then at 10:30 i went school took his sugar 304. I said ok if you feel icky go to office all take you in. He got lunch at 11am then went to class 2 hrs later he was cramping and hurting but being a stuburn teen in junior high he wouldnt call me. When he got home at 3:30 I took his BS was 98 and I also did a pee test strip it was the Blues you can get. The ketones was negative yet the Glucose was 5000mg/dl. I hear if diabetic you drop ketones not Glucose. Unless I reading it wrong. My son was not feeling good his stomach hurt i took him to pediatrition and walked right in said he need see doctor. 2 hrs after his last sugar reading he was a 151 and his A1c was a 7. Now the pediatrition said he isnt diabetic. If your diabetic you wont go up that high then crash. No clue if he crashed I took sugar at 10:30 then at 3:30 that is 5 hrs. He feels it is his nissen fundoplication keeping his pancrease from working. Says iit is obviouse his body produced insulin but thinks the pancrease is blocked or scared wont let it thru till it is to much then it bursts through. So now we are back to nothing. He didnt even run more tests on him just the sugar and the A1c. Just take metforman and wait on autorization form New Endo to go thru. He said we need see the GI again. No clue am so puzzled and feel bad my son going thru this stuff and I feel helpless. Sorry it is long. Can anyone make send of it all. Could it be the Nission.

 

09/26/13 7:24 am 135 Before food

09/26/13 9:00 pm 112 Before bed

09/25/13 3:00 pm 99

09/25/13 7:31 am 132 Before food (Back on Metformin 500MG)

09/24/13 8:05 pm 112 –

09/24/13 3:30 pm 89 –

09/24/13 10:45 am 304 Before muffin & juice at breakfast and a dumdum sucker 10

09/24/13 6:33 am 280 Before food

09/23/13 7:15 am 197 Before food

09/22/13 10:30 am 113 Before food

09/22/13 8:30 am 159 Before food

09/15/13 12:30 pm 219 Before food Doctor appt has strep

09/14/13 10:00 pm 136 –

09/09/13 7:10 am 150 Before

09/08/13 9:00 am 131 Before

09/07/13 11:05 pm 125 –

09/04/13 4:50 am 145 Before

09/02/13 9:50 am 129 Before

09/01/13 9:00 am 125 Before

08/30/13 7:10 am 122 Before

08/28/13 9:30 pm 131 –

08/28/13 7:15 am 128 Before

08/26/13 7:00 am 107 Before

08/26/13 6:25 am 110 Before

08/24/13 9:35 am 108 Before

08/24/13 6:40 am 99 Before

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TeddySue

All I can say, when I read this: "Before muffin & juice at breakfast and a dumdum sucker 10," is to ask why he is eating like this?

 

TeddySue

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javagate
All I can say, when I read this: "Before muffin & juice at breakfast and a dumdum sucker 10," is to ask why he is eating like this?

 

TeddySue

I agree. He should not be eating that.

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javagate

I would suggest your son follow a Strict T2 Diet. Get him on a LOW-LOW Carb diet and check the bs reading. Sounds like he will be on a diet like that for life.

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jwags

I think you are right, non diabetics never go that high. There are lots of times things happen and prevent the pancreas from working but we still call it Diabetes if your fasting is above 125 on 2 different lab tests. It is rare a thin teenager would have type 2. My guess would be type 1.5 which is a slow onset version of type 1. You could be in a honeymoon period for several years while HbA 1 c's slowly go up. Metformin decreases appetite and often causes stomach distress, it might not be the best drug for your son. If I were you I would push for ling acting insulin to lower morning bgs.

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momof4rugratz

I had a post but it got lost somewhere now am going to reply again and hope you see it..

 

The Muffin and Juice he had at 730 for breakfast. The dum Dum a teacher gave him before I got to school to take his sugar YES I was very unhappy with him. At lunch he had a chicken sandwich and fries. This is another not ok choice, but this is why am thinking metformin is not ok. Seems every food he eats will cause him to have a high. I have been trying best at home all summer to keep him in the ok level it was doing good not great but good. His morning seem to be a pain. I did tell the office look you have a health plan on my son please dont alow teachers to give candy out. He is in Junior high mama and he is 13 or soon to be. He knows he cant have it please explain to your son not to take it. That was the reply I got and fair enough she is correct so I told son NO MORE his reply was. This stinks mom all teachers give candy to students with good grades and who are helpful and quiet. I wont get nothing for my A and when I help I get nothing I might as well start talking not doing my homework and none of the extra credit ... Why cant teachers give stuff out that is not candy or soda. I do not buy this stuff we eat low carbs and use Truvia if we want sugar. During summer he did good because I always made sure he was eating right BUT as soon as he left the house he was back at bad habits. Because the doctors have no answers for him or me my son feels it is ok. Now after high the doctor said your not diabetic we don't know what you are. That was wrong thing to tell my son :( What I don't get is why keep him on metformin then. I will say him on it his sugar is decent except the mornings.

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Seagal

You have really been given the run-around it seems. Someone has to have the answer and you will have to demand some answers.

 

Did he have the surgery for the nission or is this an on-going condition they are blaming for his issues?

 

I understand how difficult it must be with a teen, especially since it sounds like he is a good student and is expecting some sort of pay-off for his helping out and getting good grades. What a shame teachers don't reward with gold stars anymore:)

 

Can you make some of the sugar free treats you can find here in the recipe section or just by googling "low carb treats" or just "low carb recipes". You mentioned using Truvia, so you seem ok with sweetners, there are many interchangeable sweetners available. You can make him crackers using cheese, you nuke it in the microwave til crispy or you can make a tray of parmesan crackers by putting the parmesan on a baking sheet (in cracker size rounds) and baking til crisp.

 

It is pretty important that you find a substitute for juice unless you are using s.f. Crystal Light or Cranberry. If you make the muffins yourself, you can be sure they aren't filled with sugar.

 

A non-diabetic would not have an hba1c of a little under 6.

 

As the others have said, until you get a definite diagnosis, treat this as type 2 and reduce the carbohydrates in his diet. Not just sweets, but bread, pasta, potatoes, rice, perhaps you can just reduce the portions and see if that works. Don't use non-fat stuff, it has more sugar and carbs. Tough on a young fellow, but complications from untreated diabetes are very unpleasant.

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momof4rugratz

Seagal... The Nission was done at a year old. He was born with sever Gerds and it tore his gut and his throat up. He was feed thru a G-tube till was 4-5 and after that slowly on food which he adjusted very well. When he was 1 we had to start IVIG infusions. How Intravenous Immunoglobulin (IVIG) Therapy Works... He did well and after a year he was good. He has had no issues till he turned 10 started having belly aches not feeling well at times at school. We suspected T1 then but his A1c was 5.4.... As time went one it got higher and higher. today it is a 6.9 The truvea we let him have 1 packet in his oatmeal and his tea. We dont allow Kool-aid or sugar in the house this was before he was diabetic or suspected. I have never let my kids have soda unless we go out to eat and it has to be clear, when they turn 13 i let them have root beer. As for the juice I will let them have if it is 100% but a bottle her only lasts one round at dinner I have 5 kids and 3 are big boys then this son her and daughter. We do drink a lot of brewed tea and crystal light. I have tried to stay away from artificial sweeteners because I was told it is bad but it is hard to at times if you want somethign. This is how I have always been for 18 years now so it was not just with my son being diabetic. I will try to see where I can change it up and go from there. He seems to be holding at 100 or at least below 120 on the metformin but worries me he will lose his appetite again :(

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Seagal
Seagal... The Nission was done at a year old. He was born with sever Gerds and it tore his gut and his throat up. He was feed thru a G-tube till was 4-5 and after that slowly on food which he adjusted very well. When he was 1 we had to start IVIG infusions. How Intravenous Immunoglobulin (IVIG) Therapy Works... He did well and after a year he was good. He has had no issues till he turned 10 started having belly aches not feeling well at times at school. We suspected T1 then but his A1c was 5.4.... As time went one it got higher and higher. today it is a 6.9 The truvea we let him have 1 packet in his oatmeal and his tea. We dont allow Kool-aid or sugar in the house this was before he was diabetic or suspected. I have never let my kids have soda unless we go out to eat and it has to be clear, when they turn 13 i let them have root beer. As for the juice I will let them have if it is 100% but a bottle her only lasts one round at dinner I have 5 kids and 3 are big boys then this son her and daughter. We do drink a lot of brewed tea and crystal light. I have tried to stay away from artificial sweeteners because I was told it is bad but it is hard to at times if you want somethign. This is how I have always been for 18 years now so it was not just with my son being diabetic. I will try to see where I can change it up and go from there. He seems to be holding at 100 or at least below 120 on the metformin but worries me he will lose his appetite again :(

 

That is such a sad story...one year old, he has really been through a lot in his young life and so have you. I can't even imagine the agony it must have been to go through that with your baby. Thanks for the link, how in the world did you get the little guy to sit still for two hours for the infusion?

You really have a tall order with these boys and of course this one is for sure wanting to be like the other kids. I really am sorry.

 

As far as sweetners go, I can understand the feeling, but the liquid sucralose in the s.f. Torani syrups are good. Truvia/Stevia and raw monkfruit (a sweetner) are helpful. a lot of people use the granulated Splenda, but I avoid it because it has maltodextrin (another sugar). As diabetics, there are so many battles to fight, we have to pick & choose and if I can have a slice of cheesecake made with an almond flour crust and a bit of artificial sweetner, I'll go for it:)

 

Seems the order of the day would be for you to get a carb counting book and start testing frequently. How are his numbers after oatmeal and juice? Some can handle it and some can't. There is a faux oatmeal floating around, it is quite similar to Wheatena or a beige Cream of Wheat and is very filling.

 

Let us know if and how we can help.

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jwags

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rubidoux

What is a Nission? I tried to google it, but google didn't believe me...

 

How long has it been since you first found that his blood sugar was running high? Looks like 2 years or more?

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makiro

Get him on T2 diet. He will not want to follow it at first but talk to him. At 13 you may need to scare him straight. IMO one thing that has worked on other kids who don't want to follow their diet is to take them shopping for a casket and have them involved in talking to a funeral director.

 

As far as those readings, they are high and I am wondering if the doctor checked his A1C and what it was, didn't see it posted.

 

Also for the diet, it's a whole family kind of education that should take place. A muffin and juice for breakfast at those numbers isn't good. Check his sugar before and two hours after.

 

And above all, go to a good endocrinologist.

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rubidoux

I would have to say that taking a 13 year old casket shopping is about the most extreme example of tough love I've ever heard. I think it's a little too much.

 

OP, He's 13 and, did you say 65 pounds? My 10 year old who is in the 5th percentile for height and is normal-weighted for his height is 66 pounds. He is very small for a ten year old. Is there some reason that your son is so small? Is he short, or just skinny? Does he have similarly-sized sibs? I feel like this w the blood sugar issue, and it seems you don't have a clear dx of diabetes or what type, seems odd. I'd definitely want to figure out what's going on. It seems awfully strange to me that a tiny 13 yr old would be having what looks like type II.

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patricia52

Momof4---I think I would get him to a Children's Hospital and refuse to leave until they knew what is causing his issues. There is definitely a cause for these numbers. Without a clear diagnosis it is impossible to know how to treat your son. And it is hard for him to accept the strict diet without knowing that it is what he needs. (((((((((HUGS))))))))))

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mom24grlz

Honestly to me this sounds like slow onset type 1. while the majority ofchildren experience symptoms that appear quickly, there are times like inyour sons case where they take their good old time. I know of 3 children who were diagnosed while A1C were in the 5%-6% range. They too just had occasional high numbers, one even tested negative for antibodies (the child tested positive about a year later). The parents put them ona lower carb diet, but after a while even that didn't work. I know at least 2 ofthem are now on insulin (after almost a year not needing anything) not sure about the third. I'd keep searching until you can find an endocrinologist who will listen to you. Was the one you saw a pediatric endo?if not i'd look for one of them.

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jwags

Since your son is very thin for his age I am not sure I would put him on a restricted diet like a lot of adult Type 2's have to go on. At his age he still needs significant carbs for growth and energy. This is where insulin would be beneficial. It would give him a chance to eat normal foods and keep good bgs. He may only need a small dose. There are many teeenagers that are diabetic and test themselves at school as well as administer their own insulin. At 13 he is old enough to do this. I would insist that the doctor treat his high bgs. Most people lose weight on metformin and it doesn't seem an appropriate drug for a child who is already thin.

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makiro

Sorry for being a bit harsh earlier. I was just speaking from experience and I am currently dealing with a 64yr old toddler who won't take her cholesterol medication. Unfortunately the casket shopping for her is more of a relief because she says that she's at the age that it's thoughtful of me to think of her and plan ahead for her. 'Oy the mother in-law.

 

 

As far as the carbohydrates for growth, you can go to the insulin route, it will help him in two ways. 1) Control his BGL's 2) Aid in gaining a little bit of more weight. I'm sure that with him being 13 and having the energy that we all miss, he'll get enough exercise playing around and doing what we wish we could get away with, being mischievous, :T

 

 

Remember, go to a good endo. If you need a source for a good one, ask anyone here who may be in your home town and also look up your local medical school and hospital were they reside in.

 

Medproviders is a good network, followed my endo to them when he moved.

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momof4rugratz

Well last night he hit 300 again I was dont playing around. I took him to the ER who saw him took sugar there by time we got in it was 215. They said good was coming down, but a normal non diabetic will never get readings over 200. They said he is a cool kid but yes skinny and has all signs of a type 1 but that they need sent me to Primary Childrens Hospital 40 miles away. SO off we went at 1am. We get there settled in take urine and we WAIT at almost 3am they take his sugar it is perfect 117.. So they speak to the ENDO on call said check urine if there is ketones then admit if not release do a follow up with the Endo on duty. Fine son pees and shows Glucose in urine no ketones. They also did another A1c by drawing blood from his arm saying it was better and more accurate. Maybe we where getting wrong readings. Here it was 4 am i was not arguing. So we get released saying don't take the Metformin it is not ok for him he is not Type 2 diabetic and right now we have no clue if he is even type 1. His Discharge Diagnoses is Glucosuria Concern for Hyperglycemia. Seems we are back to the waiting game:) I am so upset and pissed.Can only cry because this has been a struggle with his health for almost 13 years. Last 5 he has done AWESOME NOW THIS has made the last 2 years puzzling. I left the old ENDO 2 yrs ago all he wanted to do was get my son in on a study he was doing prove GAD positive dont mean you will ever get diabetes. I told him take test and stick it my son been thru enough. He wont be a gunpig. Primary Childrens Hospital is the best in UTAh and they had no answers yet gave me a number to call set up a ENDO appt which again I have to get the referral for. I got no where :(

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makiro

For you to need to drive 40 miles out to go to a children's hospital you may be living out in the boonies or in the country.

 

Ahh referrals, I know them a bit too well. Quickest way to get one is to go to a regular doctor, explain to them of your sons glucose levels. Don't worry to much about giving them all of his medical history, just tell them that it's a bit high and that you would like a referral to see an endocrinologist. From there you can take that referral and call the number. You can let the receptionist who answers the phone and ask if that is something that the nurse practitioner can do.

 

That's how I got all of my referrals. Just call in my pcp, let them know flat out it's for a referral and their opinion. Ask if the nurse practitioner can give one and go from there. Once that ball gets rolling, it's going to be good.

 

If his blood sugar levels are high and you took him to the ER, and while in the waiting room he took "sugar", where did he get it and why did he take it?

 

Relax a little bit, take a breather. Remember that things are going to be ok, it will take some time and work, but it will be ok.

 

Glad to see that you are venting out on here, remember that you can talk to us for comfort and to help in you keeping a chin up and a smile for your son to see.

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mom24grlz

We drive over 50 miles to see Ashleigh's endocrinologist. It's about an hour and 15 min drive. We do live in the boonies LOL! We love her practice and would drive there, even if there was an endo closer. Sounds like he's honeymooning since his numbers are coming down on their own. Oh and BTW Ashleigh never had ketones in her urine at diagnosis, as soon as we got her high reading (410) she was automatically diagnosed and started on insulin therapy. Oh and just so you know not all type 1s test positive for antibodies.

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Seagal

"his blood sugar levels are high and you took him to the ER, and while in the waiting room he took "sugar", where did he get it and why did he take it?"

 

I think she means they took his number/sugar reading and it was 215, down from the 300 when she started driving.

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