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Parent notes vs. doctor notes for 504

Discussion in 'Parents of Children with Type 1' started by Jejessica, Nov 21, 2014.

  1. Jejessica

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    so my DS has had T1D since last October. He was diagnosed by the family doctor due to symptoms like weight loss and extreme thirst, and then referred to a general endocrinologist where he was seen for several months until a DKA in July. When he DKA'd, he was flown to a children's hospital where we got our first real diabetes education and family education, along with a referral to a pediatric endo. I guess the DKA gave me quite a scare, though, because maybe I'm being overcautious?? Last (school) year, he rarely missed school because we weren't even checking for ketones. We didn't even know it was something to watch for. His DKA happened in July while his blood sugars never exceeded 300. So, kinda low for DKA. Anyway, now we check his ketones when we have two in-a-row checks over 200. When I'm treating ketones, I keep him home from school to treat him (insulin every 2 hours, water, etc.) because I'm not sure he'll get that close monitoring at school. Plus when his ketone checks come back large, he feels AWful.

    That being said, he has accumulated 13 absences this year. Most of them were due to fighting ketones. Only one was for an endo check. All but one were diabetes related.

    SO... We have a 504, so his diabetes-related absences aren't counted against him, BUT... the problem is that the school is saying that the only way his absences can be counted as diabetes-related is if they are documented with a doctor's excuse, NOT a parent note. His endo is 3 driving hours away! N when we're fighting ketones, he's not under a doctor's (direct) care, he's under my care. Has anyone else encountered this? That the parent's word is kinda... not good enough? I'm thinking I may have to just take him to school even on ketone days, and then let the nurse call me to come pick him up after roll call. It just seems like I'm going to have to "work the system" when I shouldn't HAVE to. Has anyone else encountered this or can someone give me some advice?
     
  2. misscaitp

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    I personally don't think that the school's request is unreasonable. His 504 states that diabetes-related absences won't be held against him, which generally means he will receives assignments and they won't count against attendance awards or being held back because of lack of attendance, but that doesn't necessarily remove the overall attendance policy--many school districts require a doctor's notes for illness-related absences after 5 days are missed in a quarter or semester. It doesn't seem like these absences are being held against them, it seem more like the school wants to verify with a medical professional or his endo that they were aware of him having ketones/high BGs and whether each diabetes-related absence was necessary and recommended.

    One way to deal with this is to notify the endo when he does have ketones and you feel he needs to stay home, while also asking him to fax a diabetes-related absence note to the school or you. Many endos are happy to oblige, they most likely already have a form for absences typed up.

    You could always call a 504 meeting to either amend this policy, or you could ask for them to explain this policy in the context of his 504 plan--but I believe they'll still stick to wanting a doctor's note.


    Do you know why he generally has ketones, is there a common theme? Are they after a meal, when he wakes up, and/or when he is sick? What level of ketones do you keep him home (trace, small, moderate, large)? And how long does it generally take for the ketones to clear, are half days possible on the days he has ketones? I know some T1s are more prone to having ketones.


    Also, you may want to consider using a blood ketone meter as urine ketones are delayed. There are two on the market Nova Max and Precision Xtra.
     
  3. Sarah Maddie's Mom

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    How old is you son?

    ETA I looked at your intro post and see that he's 10 - ok, old enough to articulate how he's feeling and to follow basic directions for managing highs, so I'm going to say that 13 absences in the first few months of a school year is really high. I'd be looking hard at why he's high enough often enough to need to treat ketones so frequently. It's not the norm and most D kids rarely miss school due to bg issues. The PP asked some vital questions and I'd start there and try to get to the root of the problem.

    Good luck
     
    Last edited: Nov 22, 2014
  4. missmakaliasmomma

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    ^i agree. It's an awful lot of absences. When my daughter is sick and fighting high bgs, we keep her home because it's not something I want the nurse to have to mess around with. She typically has a bad fever during the beginning of the school yr test keeps her home for 3 dAys. It's like clockwork every yr now lol. So Ido believe in keeping them home for D related reasons but I think the issue of ketones often needs to be addressed
     
  5. Beach bum

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    I don't think the school is out of line asking for a doctor note. If you look at it, your child is absent for a diabetes related situation on average once a week.
    How are you testing for ketones, and what is showing as a result? My daughter wakes up every morning with trace ketones or 0.1 or 0.2 on the meter. Starvation ketones. I would focus on the cause. Log numbers, ketones. Consult with your team, let them know how much school ketones are causing him to miss school. They will want to know this. What kind of numbers are you seeing during the day? Pump or syringe? What type of insulin? I can understand your caution, but you've got to get to the bottom of this, so that he doesn't need to stay home so much.
     
  6. Jejessica

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    I don't keep him home for trace ketones. Only large. I realize we have work to do to figure out how to keep him from getting them, but, in the meantime I don't know. I just don't. He's prone to them. His blood sugar is not prone to running (extremely) high, he's just prone to large ketones when his levels are moderately high (over 200). His grades are fine. His assignments always get turned in, and he tests well. Today we have large ketones (all the way purple) and 294 blood sugar. But I'm sending him to school with a note that says he needs to test and treat with insulin every 2 hours, drink lots of fluids, and no PE. I guess he just needs to take care of himself a little more independently because I obviously can't go to school with him or get him to the doctor to keep him home.
     
  7. Jejessica

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    Please don't get me wrong... I'm not opposed to doctors. I stay in good communication with his endo, and he knows the ketone situation. I hope no one thinks i'm just over here acting Lone Ranger on his care. I just feel kinda jipped that now he'll have to go to Saturday school to make up the hours that he's missed, when I think the exception should be made. N Saturday school is another issue entirely because there is no nurse or "diabetes person" on duty on Saturdays, so now the assistant principal is contemplating that i'll have to take him to school early or he will stay an hour later every day to make up the hours. It feels like punishment. And it sucks. Thanks for the advice, tho.
     
  8. Sarah Maddie's Mom

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    We don't have "Saturday School" here but if it's taking place on public school grounds and run by and mandated by his public school then they have to provide a trained person to assist him.

    If you are seeing ketones in the morning and you are using pee sticks then you are getting really old data, especially in the first pee of the day. You really need a blood ketone tester if he's prone to spilling ketones so that you can see if he's making "starvation" ketones overnight and if they clear with breakfast or if the ketones are a function of the high bgs and need more aggressive treatment.
     
  9. Nancy in VA

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    If I checked for ketones every time Emma was over 250, we'd be checking every day. I'm SURE she wakes up with starvation ketones every day but she's not in DKA.

    You have GOT to get blood ketone strips - the pee sticks are telling you the overnight numbers and most diabetics develop starvation ketones overnight for not having carbs in 10-12 hours. What BG does he wake up with? I would work on keeping his overnight numbers under 120 and waking up under 120, and if that's the case, feed him and send him to school regardless. He will probably spike high from breakfast - most people do. If they are using pee sticks at school to check for ketones because he's high, he'll probably still be showing the overnight reading and that's going to result in a "false" reading.
     
  10. Jejessica

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    I don't check for ketones every time he is over 250. We check for ketones when he's over 200 on 2 in-a-row checks, hours apart after treating with insulin. This is all per doctors orders. It takes 6-8 hours to clear the ketones. We do use pee sticks because it's all I can afford, especially since he spills so frequently. N I only keep him home from school if we have been fighting it thru the night. He tells me when he is feeling really bad and if he's been waking up to pee every 3 hours, the ketones may be old, but not exaggerated. If he was under 120 n feeling great then of course I wouldn't keep him home from school. But anyway I didn't really expect an award for being the best D mom, I only do the best I can and we are all still learning. I just wanted advice on the doctor notes n thought someone might have more experience. But apparently I'm the first because I'm doing such a crummy job.
     
    Last edited: Nov 24, 2014
  11. Jejessica

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    I did go ahead and order a blood ketone monitor. I'll just keep it at home because the school nurse checks his ketones sometimes 3x a day. The school will have to continue using pee sticks.
     
  12. BarbDwyer

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    I would call the endo or diabetes educator and relay all the info and variables and get his input on a treatment protocol. Then call a special meeting with the school to address the ketone issue specifically and develop a written plan that everyone agrees to based on doctors orders. Send the resulting plan to the endo and have him sign it if he agrees with it. I would advocate that this document be in place of getting individual doctors notes and I would not agree to any kind of policy related consequence related to missing days as a result of diabetes. Those should be 'free' absences IMO. I assume you see the doctor every three months and can review the protocol and number of days missed at each appointment - which I assume you are doing anyway.

    I don't have any input on the issue of having ketones because I don't really know anything about that. I'm to much of a diabetes newbie but I have worked with the schools before on other issues. You should be able to get 'individual' plans based on individual medical needs - just takes some advocating and doctors orders.
     
  13. Sarah Maddie's Mom

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    Believe me, we all have had times when we thought we were the only D parents who sucked at managing their child's blood sugar. It just comes with the territory, especially if you've received less that great training.

    The ketones are a problem, but the real question is how can you get to the bottom of the cause of the ketones - the higher than necessary blood glucose? You could post a few days of numbers and dose and let some other experienced eyes have a look. You might buy Ragnar Hanas' book or one of the others. You could log dose and meals and look for problem foods.

    Managing Type 1 is hard! But CWD is a really good resource so don't be afraid to ask for help and to learn from those who have been exactly where you are now :cwds:
     
  14. Megnyc

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    First, you should be able to solve the saturday school problem by just getting a note from the endo listing the days he was absent and stating it was diabetes related. Your pediatrician could probably even sign the note. The endo does not need to have seen your son on those days to write the note.

    But I am much more concerned about the ketone issue. I have had large starvation ketones but those were from days of no eating and vomiting. Under normal circumstances with a normal diet I don't see how it is possible for large ketones to be explained as "starvation ketones." Also, even if they are starvation ketones, large ketones are completely miserable and I agree your son probably should not be in school with them.

    What kind of insulin is your son on? When does he get his shot of long acting insulin (I am assuming he is not on a pump...)? Do you administer the insulin or does your son give it? Do you use pens or syringes? Sorry for all the questions but I really think this is a problem that can be solved. Also, what has your endo suggested?
     
  15. Megnyc

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    So, I just looked at your previous posts. It looks like your son is getting 14 units of lantus every morning. Is that still correct? I am wondering if the lantus is wearing off in less than 24 hours and then your son is going high and getting ketones because he has no insulin in his blood stream. Is he consistently high in the morning?
     
  16. Jejessica

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    I did consider that the Lantus was wearing off. Talked to his team in September (?I think?) and we increased to 16 units. It seemed to really help a lot for a while, but now he is waking up high sometimes. Not consistently tho, it's kinda random. He is using a pen, no pump yet. Endo wants to wait to pump until he's been managing at least a year. And we only started seeing her in July, so she probably won't be keen on a pump until July of 2015. Honestly, I'm not either at this point. We'll start to keep a food diary this week and see if we can spot anything. Blood sugar logs... well.... we were trusting his meter to keep them, but he lost his meter last week. We were using a backup for a few days, but I bought a new one last night just like his old one, and we started syncing it to his laptop just in case he loses it again (very likely with this child :)). But what I can remember as mommy is that he wakes up in the high hundreds, occasionally over 200. Then suddenly he just has an off day where he wakes up high, or even moderately high, and it feels like it takes all day to bring it back down. I feel like I'm often trying to figure it out, asking myself, "why are you so high?" and racking my brain wondering. We change pens. We consider that maybe he's coming down with something. It's just a mystery. On that note, school just called as I'm typing this to tell me that he's 395 n moderate.

    Honestly, the endo team just treats each one individually. I guess she likes to see a trend go on for a good while before she will make any changes. They just tell me to manage by dosing every 2 hours, pushing fluids, and rest. He is scheduled to see her every 3 months, but since we only started seeing her in July, we've only had one follow up after the DKA. Next scheduled followup is next month.

    We were in the ER a few weeks ago. I'm definitely gonna get some paperwork from them to take care of at least 2 absences. The school secretary did tell me that they normally require doctor's excuses within 2 business days, but they will make an exception for me if I can get back-notes now. and I'll check with our family doctor. I do have a printout of his absent days so... I guess I'll spend a good part of the afternoon working on that.

    here goes...
     
  17. valerie k

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    Just a thought, can she spit the lantus to 2x a day? wouldn't that stay in her sons system better if he is going through it faster? We have been pumping for years so Im not familiar with using it anymore.
     
  18. Jejessica

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    when he was on 14 units, there was a time when we split his dosage into 7, twice a day. It didn't seem to have any affect, so we went to just one dose, 16 a day.

    Just got off the phone with endo office. They will only provide notes on days that he is actually seen. Even tho I was on the phone with the on call doctor many times. Smh. I guess we are outta luck. I did get 2 days' worth of notes tho, for visits to the family doc. At the ER now, hoping for one more.
     
  19. Megnyc

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    I don't personally have much MDI experience. But I would seriously consider pushing the endo to switch him to a split dose of lantus and then to work with you to increase that dose until he starts waking up at a decent number. Considering the description you are giving of the situation, it would be my expectation that the endo adjust insulin doses at least once a week and preferably every 3-5 days. Even if he is waking up in the high 100s/ low 200s he is not getting enough insulin at night. The ketones are really not a mystery. If his body isn't getting enough insulin, he will produce ketones. The fact that he has moderate ketones right now indicates that he is not getting enough basal insulin (obviously, I am assuming he is not getting sick and eats a normal diet). Therefore, he needs more insulin. Also, are you testing at night? What is going on at 12/2/6 AM?

    ETA: Please understand that I am not criticizing you in any way. You are clearly working hard to advocate for your son! But this situation is really not fair or acceptable for you or your son. He should not be in a situation where he is needing to miss school frequently for diabetes or go to the ER unless he is sick. Your endo needs to help you figure out how to adjust insulin doses so he does not have ketones frequently. That is his/her job and what they get paid to do!
     
    Last edited: Nov 24, 2014
  20. Sarah Maddie's Mom

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    So he's getting 16u of basal and his I:C ratio is 1:15, correction factor 1:50 ( that was from a past post, perhaps its since changed?)

    Assuming he eats 150g of carbs per day that's a minimum TDD of 31u without corrections which is a pretty even basal/bolus distribution. If in fact you know that he's eating considerably more carbs and or getting a double digit amount of correction units then it may hint that his basal is too low. Have you run the numbers? It helps sometimes to look at it that way
     

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