A glucose meter would be a better test...just a suggestion mom! Your picture looks like the old time pee stick test. How did you get those exact numbers that you posted earlier, certainly not from that container of testing product.
I dont know Zoe tell me what I am.
I came here yes for support and hope that I could get help. Not get interigated by you. I have 2 threads going. I know how old my son is he is 12 but soon be 13. It is a joke in house because he will be a teenager. Sorry you think am a freak.
Yes I have taken him to doctors and I have names and numbers you want them. There is nothing more to this.
Am a mom who has tried and struggled to get help for my son. We take sugars 3x a day now for last month yes I own a machine are you suprised........ we where given the urine strips by the Endo to test him when he goes high......just in case you didnt read before he is GAD positive but doctors feel I should be in trial study to prove that dont mean nothing. Thanks Zoe for making me feel like a wack job and a poor excuse of a mother. No worries I wont reply again since its clear am just compaining.. thanks
Karen hun no all those are test done at ER and doctors.
Oh, dear momof4...I do hope you can get your son to a doc (not one in ER and not one who simply wants to do more testing) who can give him some proper treatment. Your arsenal of test results and history should speak for his condition. And if not...I do know you can get some blood glucose testing product at the drug store, it would be better than urine testing. No matter the type of diabetes he/you need to get some control over the high bg's. I wish you both all the best. How the heck is the boy??
Zoe....momof4's terminology (has glucose again) might not be what we're familiar with, but I think she simply means it's high. Referring to her son as a 13 y.o. when in fact he is 12 is likely merely implying that he's displaying the character of a teenager.
It's a whole lot to deal with...especially when you have more than one child.
She is likely doing all she can in researching/getting answers....but has chosen to come to us for support. Let us offer her that.
I'd say "has glucose again" is how one might refer to urine testing as in the pic. I agree with folks who are recommending immediate follow up and maybe getting out of the ER---> specialist pathway as it doesn't seem like the docs are acting quickly enough. It seems as if all of the "clues" are pointing to T1 and I would think treatment would help the kid feel much better very quickly as I recall that when I was dx'ed under different circumstances since we didn't have all of the tests, etc. in 1984 when I was dx'ed.
Ok, I'm going to give you some suggestions to help move things along.
First, get moving on the endocrinologist front. Most endos book months out and have "full schedules" and they put new patients at the end of the line. But actually many patients cancel. If you are flexible, ask to be put on the waiting list for the next available opening. I've done this and gotten in within a week when I had previously been told that I had to wait months.
Second, if this endocrinologist can't promptly see you, then see another endo. While there is only one pediatric endo in your home town, there are a bunch in Salt Lake City. You can use Vitals.com and other sites to search for doctors. If you really feel desperate, contact all the potential endos and take the first available, you can always change later.
Third, enlist the help of a diabetes center and the diabetes educators that work there. They can help guide you to appropriate care, talk with doctors and provide you with insulin education. Some may even be willing to help advocate on your behalf to make sure that you get appropriate care. One major one is in SLC at University of Utah, which not only provides education, but also has a deep range of services including having a clinic focused on pediatric diabetes.
Hope that is helpful.
well, because...none of this makes sense! a type 1 diagnosis in a child isn't difficult at all and I still don't understand why you're testing him and thought to test him. he has high blood sugars, glucose in urine, probably ketones (are you testing for those too, why?) high a1c and GAD positive...yet you can't seem to get a diagnosis yet he's on metformin and you won't provide info about that. why any child would be put on metformin when they're type 1 is beyond me, that's grounds for malpractice. WHO GAVE HIM METFORMIN and for what reason(s)? Are you a diabetic? NO, a good pediatrician could Dx this and they're not difficult to find, nor is a diagnosis. The A1C alone is enough with GAD positive tests. All tests are in systems and an ER can electronically send tests to any doctor. Why are you testing him? You don't need a referral go see a pediatrician, they Dx type 1 often, it's something they look for in children.
Is this a case where all these available lab tests are just confusing the docs? "Analysis paralysis" preventing the obvious treatment?
30 or 40 years ago, before antibody tests etc being widely available, a kid with high bg's and/or sky-high sugar in urine "2+", would by default be assumed to be T1 and start treatment as T1 (probably starting with testing for/treating of DKA).
As a GP, unless you were educated in the last 10 years, you are unlikely to know anything about diagnosing T1/LADA with antibodies. When I started asking (and demanding antibody testing) I had one GP (graduated from Med School in 1999) finally admit that she didn't know how to interpret the test, so she wouldn't order it. She then also told me that T1/LADA was only diagnosed in the ER when you presented with DKA.
It was also my experience that many GPs are "insulin resistant." They don't want to be responsible for the decision to initiate insulin, it can only have a downside. If the patient has a hypo and is harmed, they are liable. If the patient goes into DKA and is harmed, they can always argue that they did not present with dramatically out of control blood sugars and most patients (T2s) with A1cs of like 10% are only given a prescription of metformin and sent on their way. So they followed general practice. Most GPs are very conservative about insulin, they don't know how to prescribe it and they don't want to be liable for the decision to prescribe it.
I gather it is in a different post and no it isn't malpractice because the regular pedeatrician was trying to help us since our insurance TRICARE was denying all Endos we choose. My son was told he was GAD + but at time the A1c was under 6 so they said maybe he was prediabetic and to keep testing him and just see how it goes. Ok that was over 2 years ago. We tested him 2x a week at first till numbers kept creeping up. About 8-9 months ago we went to testing a lot because like I said numbers got higher. Went to the last Endo we had and sons A1c was 6 and if correct a few months later was 6.2. He said NO NO he needs to have higher A1c levels he is fine. He a growing kid. Just to observe him and again he will treat him free if i join his study about proving GAD wrong. So new pediatrician said ok we will test every 3 months because we saw pattern my son if went over 300 get belly aches feel sick. Thenwe got the A1c levels of 6.6 and 6.8 he said ok that is diabetic with positive GAD you need see a Endo. BUT said because his level go down about 5-6 hours later he felt he was more type 2.He put him on 500mg 1x day of Metforman because it is used in Type 1 and 2 patients. After 3 weeks and 2 more highs that included a trip to the ER we got the approval for the New Endo in Clearfield Utah all give a name you want to make sure. All this is exactly what is in his records each hospital and doctor look it up. That is why the ENDO at primary is having our pediatrician run blood work, because our insurance wont give the ok to see him. We are military and struggling with doctors here. NO a pediatrician can not diagnose type 1 here at all has to be done by a ENDO. The blood work the Endo is having my peds run he has no clue how to even read them. He said he wasn't in the field of study that is why he isa pediatrician and Gonzalas is the Endo.Once the hospital said stop the metforman we sending you to Primary Childrens Hospital we did and at Primary they did nothing but more test and waiting. That time Alc 6.8 his blood glucose was 121 they sent us home. So NO having HGA1c of 6.8 plus GAD+ wont make a doctor say they are diabetic. Here in Utah the big study is to prove GAD theory wrong. NO am not diabetic. ER sent the doctor my test and send the Endo but the Endo cant talk to me because am not his patients my insurance said no i cant see him. My doctor sent the tests over to the new ENDO who my insurance just approved last Thursday. He said wait on the IA-2 before I do anything with him. All on file here in Utah every bit is in his records. I can give hospital and doctors names. Heck my son had a GTT and he failed it also.YET the last ENDO felt the pediatrician at time was jumping gun doing the test. All this in in other threads it is why i did not repeat it all. Like writing a book.
Call me a sorry excuse for a mom tell me am crazy. I know in my heart am trying do best for my son and I only hit brick walls. Like now everyone here thinks am either lying or am a wacko. How do you think i feel when the doctors cant seem to get a diagnoses in.When i am transferred all over because they are all confused what going on with him.
Did that answer it all..
Brian this is exactly what pediatrician said. He had a point he is a pediatrician not a Endo which son needs.
TIM
The said GAD+ these days isn't reliable and want me to join trial study prove it. Yes had glucose said he had no ketones. His HGA1c taken at ER was 6.8 and they felt it was not really to high. They said numbers have changed and they see kids that are in 10 and 11 for A1c.
It sounds to me like the doctors ARE concerned and are just making totally sure before they make a diagnosis. I don't think they would continue to run tests and make referrals if they thought this was all just nothing.
It sounds like you have been testing your son's blood sugar and A1c for a while now, since long before the readings became unambiguously high. Type 1 is a major, life-changing diagnosis that lasts a lifetime and is not easy to "take back" if it later turns out to be wrong. So to me it makes sense that in cases that are not clear-cut, doctors would want to make sure before making a diagnosis. Also, it may be that doctors don't know how to start insulin in a kid who is diagnosed with Type 1 so early. They are used to kids being diagnosed in or near DKA with blood sugars of 400+, so may not know how to treat a kid whose blood sugar is "only" 150-200 without causing lows (something doctors are very afraid of).
The big worry with a delayed diagnosis is DKA. But with blood sugars of around 150 and no ketones he is not in danger of DKA, and if you are monitoring BG and ketones and know to go to the hospital if either one rises significantly, the chances of full-blown DKA are reduced. Otherwise, having a few months of high blood sugar with this waiting will have no impact in the grand scheme of things. If he does have Type 1 (which it sounds like he probably does), then there will be lots more highs (and lows) in his future even with a diagnosis. Once you are able to see an endocrinologist (it sounds like this might be the main barrier here) hopefully a proper diagnosis will be made.
At the moment I'm leaning more on the definition of diabetes that has been accepted for thousands of years, "sugar in urine". Some of these recent distinctions having to do with antibodies and T1 vs T2 seem irrelevant. You talked about lab tests, but is your son showing other symptoms drive a diagnosis? With a urine sugar of 2+ I would expect that he might be making frequent trips to the bathroom and being quite thirsty.
It is good that your son isn't presenting in DKA at the moment. And an A1C of 6.8 isn't the worst thing in the world either. But urine sugar of 2+ is something that should result in at least a preliminary diagnosis (even if just "diabetes type unknown") and some kind of treatment plan.
The sugar in urine just started showing up little over a week ago. All ask the ped to day to please tell Endo he has it if he hasn't. Like I said I didn't get the Endo till late last week. Our insurance Tricare is being a pain.
I try to support people on this board all the time, Linda, but I also trust my gut. It is difficult to support someone without having a clear logical picture of what is being done to better the situation. And it then gets to a point where you are simply being codependent which looks kind but helps nobody.
When I was diagnosed like a third of a century ago, the official pronouncement was the TesTape at the hospital clinic turning jet black much like your pic. I think they also did the Clinitest tablets and that was... bright orange? Can't remember the Clinitest stuff so well.
Have you tried bypassing your pediatrician and just taking your son to a hospital clinic or similar? I didn't have a pediatrician when I was diagnosed as a kid but between the symptoms and simple urine tests the visit to hospital clinic had me in treatment in under an hour. No run-around with antibody tests back then.
IMHO the best answer would be a pediatric endo that specializes in diabetes. I would hope that a visit to the hospital clinic with jet-black urine tests gets you hooked up with a good pediatric endo shortly, something that a mom's phone calls to receptionists might not be able to do.
And By The Way... I have three kids and can't keep their ages OR names straight! Get them mixed up all the time. I was diagnosed at age 14 right before my 15th birthday.
Brian thank you and love your post :) This is what I have done as follows.
I called Friday and this morning in hopes the Endo has opening this morning was a answering machine. My insurance will only cover 2 doctors in Salt Lake which I did go see but both want me in there study. The new one is in Tanner Clinic and he got all my sons labs faxed over to him on Friday. Now the Endo at Primary has been helping my doctor since last Thursday but because of HIPA ACT he cant speak to me. We also now have APPT to see a dietitian at McKay Dee next month woohoo.. I ust found this out a few min ago. I told them all if he hits 300 again am going to ER somethng not ok. So far know one has answers and just being told wait for other tests.
When sugar in the urine shows up, do you check the blood glucose as well? There is a condition called renal glycosuria. I doubt this applies to your son, I do think he is Type 1.
The strip picture you showed us yesterday made me gasp. Two years is a good long time to be diabetic with no treatment. If your son is having continued rise in the glucose levels, the risk of DKA is ever present. Lots of folks have a honeymoon period. It could be the honeymoon is over for your son.
Insurance, Dr. titles, type of diabetes are not the most important things to worry over. Getting treatment for the boy is! Best to both of you.
Karen yes The last Endo said to test for sugar and ketone in his urine if he is over 250 and all yesterday and today he has been high except when he woke up this morning was 134. He was 240 at 11am and had glucose in urine wasn't as dark as yesterday but was blue. There is no ketones. I did not notice the glucose till little over a week ago and 2 days after we did i took him to ER with high sugars. He never been that high while i been testing him. I did call Endo waiting for a reply.