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HELP...Confused Doctors Gave my son insulin for a week, but not a Diagnosis!!!

Discussion in 'Parents of Children with Type 1' started by mom2coco, Mar 2, 2012.

  1. mom2coco

    mom2coco New Member

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    Feb 17, 2012
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    My 5 yr old son was just discharged from the childrens hospital last week, for over a week for several reasons, but I took him in to emerg because again his blood sugars were high and he was vomitting uncontrollabley, even when he stopped eating, he was burning up, slipping in and out of consciousness and just not being himself and because he had went from 54.5lbs to 43.2 lbs since christmas break I was already concerned and using my own glucometer to check his blood sugars and my urinalysis sticks to check for blood, I checked his urine and he had a large amount of ketones 3.9 then he started vommiting in his sleep and I ran in flipped him over cause his was on his back still sleeping, so I changed from my pjs and took him in, while we were in the triage a cough began and ofcourse they assumed he just had a cold or flu, and wouldn't believe me that the cough literally just started after he vomitted in his sleep, I brought the urine with me and told them to check it and his blood sugars!!! *** In short after much wasted time and frustration, they ended up checking the urine, he was admitted because his oxygen saturations were 82, and that was on oxygen tubes, while he was being worked up for admission they checked his blood sugar and his random was 18.4mmol/L As the days progressed and his illness too, his fasting glucose was 19.5 mmol/L because he already had a referral to pediatric endocrinology for 3 days from that very day for some high glucose readings at home on my glucometer not to mention he went from 54lbs before christmas to 46lbs jan 11 and then another 2 lbs lost 2-3 weeks later, plus constant thirst, bed wetting, night sweats and most importantly mommies intuition!!!
    His blood sugars would not go down after 2 days and so the consulted the ped endo on call and the team came down and basicially convinced us he has type 1 diabetes and he needed insulin injections, they gave him insulin for 4 days and on the 5th morning his readings were like 6.5mmol/L and they decided they were gonna not give him insulin that day and see what happened, his numbers ever since have been pretty good, the lowest was fasting mornings for a few days of 4.2mmol/L.... so they now don't know whats going on?????
    He's not wetting the bed anymore he actually pee's about half the amount he used too, I've read about Honeymoon phase, cause the doctor said shes never seen this, but Ontario Canada is a pretty small area I figured maybe somewhere around the world maybe someone has seen, heard of or experienced this.

    So what I'm mainly wondering how soon has anyone ever heard of a honeymoon phase kicking in or has anyone heard, dealt with or read about my sons situation, but any info, advice or ANYTHING would be very much appreciated I'm losing my mind!!??!?!?:confused::(:eek:
     
  2. selketine

    selketine Approved members

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    Illness can cause ketones.

    Because of your child's difficulties breathing - did they give him a steroid like prednisone? This can dramatically raise the blood sugar for those without diabetes. It sounds like he was very ill - did they tell you with what?

    Sounds like you need to confer again with the pediatric endo.
     
  3. mom2coco

    mom2coco New Member

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    Sorry I posted very late and I didnt proof read b4 posting, But I thought I added that he had been already having symptoms and high blood glucose reading for several months and at Christmas time he started losing alot of weight and his BGLevels went from 12.9 to 14.5, and he lost 12 lbs without explanation, constant thirst and excess urination especially while sleeping he was refered to peds endo in mid jan for feb 14 but became sick before. The other question about what he was sick with and on his discharge form from doctor was DKA, ketoacidosis, severe kausmaull with decreased oxygen, T1DM ?????. So what I'm wondering is Honeymoon phase how soon can it begin when a child is started on insulin?? Thank u for such a quick and helpful response, I must admit I've been very anxious about posting something that may be considered irrelevant to moms who are dealing constantly with the month long hell I experienced!
     
  4. nanhsot

    nanhsot Approved members

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    Your question is not irrelevant and we don't deal with DKA and all that on a daily basis, trust me! Your experience sounds horrible.

    My advice is to find a solid pediatric endocrinology team and get a full workup, there are antibodies they can test to see if he has Type 1, it's not just symptom based. That with an A1C test (do you know that number??) can give you some answers.

    It doesn't sound right to me that they just took him off all insulin and discharged you, do you have follow up with them? You seem as if you do not have medical follow up scheduled, is that true? If not, find a new team and go immediately, this could spiral out of control again.

    Many kids get off insulin entirely during honeymoon, but you still need to monitor closely and you need endo support.

    Good luck, hope you find some answers. I don't know much about your healthcare system but I wanted to add that many of us drive pretty good distances for our endo team. It is a specialty area and you want a team of MDs/nurses/nutritionists that specialize in Type 1 to see your son. Don't be scared to push for that, and be prepared to travel to get what he needs.
     
  5. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    Honeymooning where the insulin needs go down after a person is put on insulin happens in the majority of cases of type 1 diabetes; such a strong honeymoon that a person goes from having been in DKA, to not needing insulin at all for a time period is much less common but I've read of a number of cases, including on this forum and in medical journals.
    It also sometimes happens that a person is sick from something else and needs insulin temporarily because they had insulin resistance (or pancreatitis) only temporarily.
    There are also a few very rare genetic forms of diabetes that sort of come and go, although five years old would be a rare age for them.

    To see if it's the most common form of type 1 diabetes, the hospital or some doctor should tested blood for a panel of diabetes antibodies. If they were positive, then it's type 1a diabetes and he's honeymooning. If it's negative, it might be time for further testing. Antibody test can take some time to come back- I was diagnosed with diabetes but when I was discharged from the hospital the staff let me know that my diagnosis of type 1 was presumptive- that we were still waiting for the tests to come back. They came back two weeks later and confirmed it.
     
  6. mom2coco

    mom2coco New Member

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    Feb 17, 2012
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    Thank you sooo much for responding, its very much appreciated. I have to say I really respect and admire the strength, knowledge, insight, wisdom and compassionate support you are all so encouraging and helpful. I've been going out of my mind trying to figure out whats going on with my son, so overwhelmed with all the info and confused with everything thats out there, then I get these replies that provide clarity and I read other threads that have helped me to understand more and I notice the poster is a teenager or a child that has had to deal with this for most of their young life and it breaks my heart, but I also have so much respect for those individuals who have taken control of their health & are arming themselves with knowledge.. Great Job you should be so proud of your maturity and your postitve and powerful behaviour!
     

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