I am full of questions! Last November, I noticed my sons grades starting to decline. He couldn’t seem to focus on anything. He was waking up in the middle of the night crying because he was so hungry. He was eating like a horse but by the end of December, you could see every rib bone in his back. He has always been underweight so the doctor just thought he was going through a growth spurt. They told us to pack on the calories. Protein supplements, extra butter, extra gravy, lots of carbs. He started waking up multiple times a night to pee on January 6th. January 7th he drank 2 cases of juice boxes at my sister’s house. I made him switch to water and he continued to drink non-stop. That night he woke up saying he felt sick. He asked me if there was a disease that makes you hungry, thirsty and have to pee a lot. I kind of thought it was in his head because his best friend is type 1 but since my dad is type 2, the next morning when he woke up, I used his meter to check his BG. 488 fasting. Thank God I checked before he ate his pancakes! Diagnosed January 8 of this year. Anyway…he has had a rough time at school. At first, missing all the class time for treating lows caused him to miss instruction. After a struggle with the ADA and school (school argued that lancets are a weapon) …he was allowed to test BG in class and only fo to the nurse under 70 or to check ketones over 250. He doesn’t miss a lot of class anymore because we’ve leveled out the lows but he still has trouble focusing. At home, I can tell him to go get his D-bag and I will find him 10 minutes later with his D-bag strapped to his back while he is playing outside. He completely forgets things. This is not normal for him. It goes beyond normal short attention span in children. He gets really upset with himself for forgetting and not being able to focus. He has an amazing teacher who is working with him this year but he is struggling every day. Anyone have any experience with this? I feel like he is sinking and I can’t stop it. The pressure of being a normal kid with everything else he has to deal with is rough. It is hard to balance the compassion I have for his struggles with trying to make him understand that this is forever and we have to make it work. I also know he isn’t choosing this…he is struggling to keep up. Sometimes it is like he is in a fog. I have always worried about my kids succeeding but it seems more urgent now. I know he has to be able to have a career that will allow him to afford his supplies. Anyone have any helpful tips?
Several things come to mind: has he been tested for celiac? Some of those symptoms, like brain fog, can be caused by that (celiac can present in many different ways), and celiac can be linked to T1. Might be worth checking thyroid function while you’re at it, if that hasn’t been done (another system that generally should be monitored in T1s). It might also be worth getting him a psychological eval and testing to consider whether factors like ADHD, anxiety, etc could be part of the picture. Therapy and/or medication might be useful, depending on findings. If it is something like ADHD, treating it makes a huge difference in children’s academic and social trajectories.
Yes, lows and highs can really cause that mental fog. But when I was in school (yes a very, very long time ago), the nurse wasn’t really involved or even at the school when I tested my urine before lunch.
I know things are a lot different now but your doctor can help with the wording on your IEP (hopefully you have one or a 504? I think?) I would think having the child testing their blood sugar is necessary and always having their supplies with them.
The lack of focus sounds so much like my son. He was diagnosed with ADHD and major sensory issues. We did have to medicate him for a few years so he could actually sit still for five minutes and focus.
Maybe have him evaluated and of course use his doctor to fight the diabetes battles with the school.
My heart and prayers go out to you. Parents of children with type 1 are God’s gift to us. God bless and good luck!
They ran tests for T1D linked autoimmunes at diagnosis, including thyroid and Celiac. Celiac came back positive and was confirmed by biopsy. He’s been gluten free since April. His celiac test came back negative in August. Can T1D cause ADHD? He didn’t have any of these symptoms before. He always got A’s and B’s with little effort. Don’t get me wrong, he’s not failing but he is struggling. Everything just seems to take more effort and refocusing.
As far as I know, ADHD shouldn’t be linked to T1, but there’s plenty we don’t understand about it.
Are you entirely sure he’s not being exposed to gluten at school or by accident at home? Even trace amounts somewhere could be keeping the celiac active (or re-activating it, since it sounds like you’d succesfully stopped it), causing all of the symptoms you describe… that seems like the simplest and potentially most likely explanation.
My son, Caleb, was diagnosed when he was three. He was in preschool, but only a couple of hours for a couple of days a week. I remember dropping him off the first day after diagnoses - it was THE only day any of my kids ever cried to see me leave. Adjusting to the new world of diabetes is overwhelming. So much control is lost and it’s so isolating because you’re the only one doing it in a sea of people who seem to be going through life so easily without a care in the world (but of course we never know what challenges others are going through).
Because of the age difference, I can’t specifically relate to what you and your son are going through. By the time Caleb was 11, he was completely independent with his care with the exception of communicating with me via text while he was at school. He saw the nurse when his contact lens came out and he needed solution. 
That oversimplifies things - the nurse followed his numbers via Nightscout and was aware and ready of his needs if she had to intervene, but for the most part, that was unnecessary. He was able to function this way because of the years of education with diabetes and gradual assumption of tasks related to his care.
There have been times where I have considered taking him to a therapist - to provide him an opportunity to say whatever he might be thinking without fear of judgment or disappointing someone. It’s never quite gotten to that point. We’ve talked about it. It’s not something I’ve felt needed to be pushed, but it’s always out there as an option.
There are other great suggestions here - far outside any expertise or experience I have. So there’s lots to consider. I think being diagnosed at 10 or 11 can be a really hard time - not that there’s any good time, but it’s a lot to take on for someone that age, it would be surprising if it went without a few bumps in the road.
I sympathise greatly with your situation. I would just add to what others have said that be patient, he is still very new to this and it’s a lot to take in. Tiredness in my kids certainly causes attention issues and so I wonder if this could be a factor. Low blood during the night or even high blood could disrupt his sleep. Even testing him during the night which I presume is what parents of type 1 children do and is not probably avoidable, probably impacts the quality of his sleep. Freestyle libre might help with this if it’s an option. Also make sure that his lack of attention, regardless of it’s cause is acknowledged and accommodated in his iep. Is he getting any educational supports around this to help him with the areas he is struggling. I’m sure he’ll eventually go back to being a top student if that is where his ability is and history tells you it is. A diagnosis like this is bound to cause disruption but shouldn’t hold him back long term. Well at least it didn’t for me and that was at a time when most people hadn’t much of an idea how to support a type 1 child at school. He’ll get there eventually. Best of luck to you both.
Thsnk you! He has a 504 but not an IEP. How would he qualify for an IEP? I had to fight the school for his 504. I can’t imagine they will make an IEP any easier.
He was glutened once in May but his August test showed no autoantibodies. I don’t think he’s been glutened since but he goes back in November to be retested. I’m pretty sure he has had Celiac disease since he was a baby. He has always had all of his symptoms of Celiac but never the issues with school until T1D. All of his Celiac symptoms (colorless body rash, constipation, frequent stomach aches) have cleared up since going gluten free.
We had issues with the school. He was put on the bus with a BG of 60 soon after diagnosis. He treated himself with 4 starburst. The bus driver yelled at him and then called the principal and said Damien was faking lows to eat candy on the bus. The principal called him down to the office the next day and got onto him. No one called me. My son came home from school and said he was called to the office and explained what happened. I immediately looked at his meter and saw the 60 BG. After diagnosis, we made a plan to never put him on the bus under 80. He had so many lows and he would drop so fast. The bus ride is an hour and I’d rather be safe and pick him up.I went to school the next day and tried to pass out emergency sheets to any teachers he has and to the office. I was shut down by the nurse. They said it was above and beyond the staffs job description. I waited in the office until the principal would see me. I requested a 504 and he dismissed me. All I wanted was a 504 plan and for his teachers and office staff to be aware of what to do when the nurse isn’t there to instruct them. He said we didn’t need a 504. That is when I emailed his doctor who immediately got in touch with the ADA. The ADA attempted to educate the school on the law but didn’t get anywhere. They refused to budge. The ADA ended up getting in touch with the health director and the Indiana Department of Education. It took a while, but the Indiana Department of Education finally got through the them. The ADA was trying to get me a lawyer when they finally gave in. It was the most ridiculous thing! While writing the 504, they fought me about having juice/candy in class (unfair to other kids), testing himself (lancets can be used as weapons and his teacher did not feel comfortable with that), and carrying his supplies (what if another kid gets ahold of his insulin). I argued that his teacher should not feel safe at all with all those dangerous pencils lying around. Keep in mind, my son has never been in any sort of trouble at school. He is sweet and sensitive and an overall good kid. I didn’t understand any of it. All I wanted was for him to be safe. At the time, we didn’t have Dexcom and I was worried every time I left him at school. He has a really supportive teacher this year. Thank God! Do you know how he would qualify for an IEP? I have a feeling that if I go that route, I will have to roll up my sleeves again.
@T1Mom6 - That is really awful !!! So sorry you had to go through that.
Obviously different school districts can have 100% different attitudes from other school districts. We certainly got very lucky with our district.
I actually never went the route of IEP/504 as I felt it might be too restrictive for me. With the people and the school system YOU have to deal with, it sounds completely impractical NOT to have one of these in place.
I had looked into the differences between an IEP and 504 as I was considering and not even sure what the differences were. This following webpage gives a summary - not sure how accurate as I never went this route so am not familiar with the details.
Thanks! Yeah, I never even knew about the 504 until his doctor brought it up after the bus incident.
Wright’s Law is a wealth of information for both 504 plans & IEPs. Basically, Sec 504 does not require learning to be affected by the disability (T1D) in order for the student to qualify. An IEP falls under IDEA. The student must be evaluated for learning disabilities, & the plan must lay out specific educational goals & the steps to be followed to reach them. Schools do not receive additional funding for 504, but they do receive funding for IEPs. Parents have more rights under IDEA & violations carry heavier penalties. In the case of a student with T1 you would not have both a 504 plan & a IEP. The IEP would incorporate all the accommodations needed that would usually be covered by a 504 plan.
Two of my daughters, including my T1, had IEPs for a short time in elementary school. By the time my youngest was dxd with T1 she no longer had the IEP, but I fought for her to have a 504 plan.
I am so shocked and lost for words at the level of ignorance this school has shown and the lack of support they have given your child. The line about unfair to other kids actually made me laugh out loud, what’s fair about having diabetes for God’s sake! I’m from Ireland and school systems obviously vary considerably so I’m not much help to you with regard how to get an iep but I would say I’d be emphasing how his condition is impacting his learning. There is a website from an irish organisation that explains what you can expect from schools etc and might be worth having a look at for some ideas.
I’m so sorry that it’s an uphill struggle with this school but keep up the fight. I wish you the very best of luck and sending you a virtual hug!
http://www.childrenwithdiabetes.com/504/
This may be useful also.
Hello Mom!
Puberty, pre-puberty is a rough time in life PERIOD. Does not matter about the specifics it’s just difficult for anybody. Starting there.
There certainly could be a diabetic piece(s) in this equation(s) these issues but don’t automatically start there. Could easily not be, zero, nada to do with his blood sugar what so ever. He could easily be a kid… could be a kid with XYZ AND be a diabetic at the same time. Be careful attributing everything looking through the diabetic spectacles…keep in mind it ain’t ALWYS the “dragon” of diabetes.
We can be giddy, silly, dopey, cranky, angry and a bunch of other things too. Not automatically diabetic as the first word beforehand.
Look at big patterns Times, subjects, teachers, class beforehand… see if there might be some patterns. Does the subject take a particular approach or skill set. Maybe there’s a pattern.
Check with his teachers get impressions. Doesn’t mean they are right btw just a different set of eyes…
Let us know how it’s going momma
This is all so horrifically unacceptable. I’m sorry to had to deal with this. I know how ugly this can be. I’m happy you were able to utilize the wonderful services of the ADA. We’ve had to as well, and it helped a great deal.
It’s very unfortunate, but much of the insensitivity comes from a complete lack of understanding of what diabetes is. I’ve found it absolutely necessary to be proactive with staff to educate. Our school system is at least clear about what a 504 plan is, and that it absolutely does apply to a child with type 1. When Caleb was in Kindergarten, an administrator told us he didn’t need it. I think this was discouraging us, not the blatant dismissal that you received. But in any event, I believe it is truly in your and your child’s best interest to have one. I’ve found it ensures clarity on everyone’s part, provides at least some education, although more may be necessary, and simply protects your child when issues arise.
Are you familiar with the Safe at School Program? I’m guessing you are since you’ve already been in touch with the ADA.
There are lots of great videos available for education purposes. They are broken down by topic so you can pick which ones might be helpful to your specific needs.
Also, do you have a copy of Helping the Student with Diabetes Succeed: A Guide for School Personnel? This is a phenomenal resource which clearly states the needs of children with type 1 at school, addresses CGM specifically and also has a breakout by staff personnel of what’s reasonable for them to be responsible for with regard to the student, including the bus driver.
It sounds like you’ve gotten over a huge hurdle with your son’s school staff. For future planning and refinement, these resources might be helpful. I know they have been for me.
I know! I requested 2 volunteer health aides to be trained in diabetes care, which is what the ADA informed me was the law. His teacher said she wasn’t comfortable with learning how to use glucagon. I asked them if they would be comfortable watching my son seize on the floor until the ambulance got there when they could learn to bring him out of it. They said I was attacking their character. Well…yes I was. The principal actual told me that if I wouldn’t have made such a big deal, he would have done everything he could to save Damien, but now that I blew it out of proportion, he would be afraid of liability! He later informed everyone that he had an “intense needle phobia” and also asked how low his blood sugar had to be to require insulin. Honestly, his nurse takes really good care of him when she is there. The problem is, she isn’t always there, she has other duties and other children to take care of and that’s exactly what happened when they put him on the bus. She qas outside on car duty. She didn’t want anyone else to be able to take care of him. She said “Are you telling me that you want Damien’s care in the hands of someone who isn’t a medical professional.” I informed her that I am not a medical professional and I take care of him every day. After getting in trouble with the department of education, they really shifted their attitudes. We got 2 health aides trained in his care. The entire school system was trained on the basics. All training was free through the ADA. The health aides are protected from liability by the 504 and my son is protected as well. At the 504 meeting at the beginning of the year, all of his teachers and principals attended and I was able to go over everything I needed them to know. They also give him the option of a gluten-free lunch at school! They were informed that they could lose federal funding and I think that got them moving.
Yeah. Him and my daughter are in the same class. Since kindergarten, my son has excelled in math and my daughter in language arts. Since right before diagnosis, I have just noticed a lack of focus. He will come home with math homework and not remember what the teacher instructed them to do. After I explain it to him, he aces it. The next day, I have to explain it again. He’s always hated reading and that hasn’t changed a bit. I cant explain fully but it’s different. Harder for him to remember and focus. He is so hard on himself when he forgets things. I’ll probably be patient until Christmas and see if it works out. After that, I’ll have him evaluated if need be. Thanks.