Hello all I am new to the site, my 6 yr old son was dx in 12/09, honeymooned for a year, started humalog 02/2011 and now 11/11 added lantus. He takes 1 unit of lantus and 1 unit of humalog meal times. His A1c is always below 6.5 except at 7.7 when he was diagnosed and again when the honeymoon ended :( I want his A1c to be 5.5- 6 consistently. Nevertheless, I am always interested in finding a better MD and Endo team. I feel like I am the one making the decisions of when to add more insulin, how much and what type. The current MD says you are doing good his A1c is low and says my son's case is unusual and see you in 3 months. Should the MD be doing more or is this standard protocol. I feel so not proactive in my son's care and I feel the MD is not either...perhaps I am expecting to much. Any suggestions on Ped. Endo in Dallas or perhaps realistic expectations of the MD's role
I totally agree that 5.5 - 6.0 is very unrealistic for a child post-honeymoon. I don't say this to sway you from trying to get the best A1C possible, but to let you know that if you don't achieve those numbers post-honeymoon, do not be discouraged. Small children run the risk of wild swings throughout the day and if allowed to go low too often (which is what we found often happened with our son when trying to tighten down our regime) it hampers normal brain development.
We are with a fantastic team out of Stanford, who work very closely with us on my son's care. however, most of the decisions on what to change and when are ours. I prefer it that way. I do not want to rely on a call back from the Dr to 'approve' every time I think a change is needed. We do discuss his trends with the Endo and he also make recommendations, but that is only every 3 months and we often have changes needed in between that time.
You, and eventually your son, will be the advocate for his normal routine. My feeling is that the more we have them be part of the process now, the better they will be able to manage themselves as they get older.
Does your son take both the Omega 3 and Vitamin E? i notice that the Vitamin E has Omega 3 in it too, which is why I ask. I am thinking of trying them out.
sounds like your son is having a long honeymoon enjoy it, we have thought of changing endos also but realize as wyomom suggested it is a self managed disease meaning you are the most important person contributing to his care. of course in emergencies or with adjustment issues the endo team we see has been very good but after three years i guess we have more confidence and don't call much in between visits anymore. in terms of support and understanding from others with T1 and parents this site is great, any questions you have put them out there and you will get honest advise, good luck, enjoy your boy.
Thank you all for the clarification managing diabetes always seems so ever changing. Its like playing a game and someone keeps changing the rules during play. I just want to make sure I am doing the best for my son. I am looking forward to being a member of this site! Thanks again
I totally agree. I like the analogy. Some days I just want to pull my hair out, especially when my usual tricks don't work. I am learning (it's only been 8 years!) to not be so frustrated when we don't see numbers in the range I expect. It is a marathon, not a sprint and quality of life must take priority over managing every little nuance of T1D or none of us will make it.
They're not just changing the rules. The "players on the field" (your son) are changing all the time too. So whatever strategy you come up with today is just going to have to change tomorrow, because you have a completely different athlete from day to day. Imagine if coaching teams had to deal with THAT -- there'd be no football, baseball, or basketball anymore because they'd just give up!
Your MD is right, your son's case IS unusual. My son, age 4 1/2, was Dx'd 3 years ago with an a1c of 9.6, and he has never been below 7.4. His ped endo gives me props for keeping him below 8! The reason is simple: Children are constantly growing and growth hormone makes them insulin resistant — so if you're keeping him in the 7-7.8 range without having a lot of lows, you're doing pretty well. I won't say it's impossible to keep a child that young under 6, but you'd have to go to some draconian measures to do it and I think ultimately that will backfire on you. At this stage of the game, we as parents have more to fear from hypoglycemia than hyperglycemia (especially since you're using injections, so the chances of DKA are pretty slim). So while you're entitled to finding another ped. endo. or MD if you're not happy with the one you have, chances are pretty good that any second opinion you get will echo what your current MD is telling you.
What I would suggest to you is this: Do not use a1c as your sole test of diabetes control. The a1c is an AVERAGE, and keep in mind that you can get a "good" a1c but still have lousy individual readings, if most of the out-of-range readings are hypoglycemic. In other words, you can get low a1c's if the child has a lot of low readings, but that increases the risk of the child having a catastrophic hypoglycemic event. If you can maintain a range of readings that is mostly within your son's target (probably 80-180, right?) then you're doing well enough, and your son is probably safer.
Also, and I don't mean this as a critique, but if you spend all your time trying to manage to the a1c, you'll make yourself crazy in the long run, and probably your son as well. "Sufficient unto the day are the glucose numbers therein." Use the a1c as an indicator of whether your regimen needs changing, but not as something to be worried about day to day. Remember that someday you will have to turn your son's care over to him, and if you focus too intently on maintaining a super-low a1c, chances are excellent that WHEN he rebels (not if) all your hard work will be for nothing.