Just wanted to give you all an update on Mikayla..sorry I haven't checked in lately, but things have been touch and go.

As most of you know she was diagnosed with type 1 diabetes in May. She had ketoacidosis and went into diabetic shock with sugar levels of 971 and her A1C was 14.6.

Her doctor said they were shocked to see a child with levels as high as hers not in a coma..she is a lucky little girl.'

We are still having a hard time trying to keep her levels near a somewhat normal range.

We had a period of 2 weeks where her levels were great and then boom just like when she was diagnosed she went into the 500's again.

She is also experiencing frequent lows where she gets below 50 and all but passes out..very scary for her and me!

I just found out last week that the endocrinologist she is seeing, is not specialized in pediatrics. He does treat children, but is not a pediatric endocrinologist.

So as I am told she is insulin sensitive and she keeps going from 500's to 50's, I decided to ask for a referral to have her seen by a pediatric endo.

Just Tuesday she was 200 before we went shopping ( and I gave her a snack as well)and less than 30 mins later she feel and was dizzy.

I gave her 2 glucose tablets and checked her levels and she was at 51....there was no warning that she was getting low.

For some reason if her levels are between 80 and 100, she can tell me she feels funny or low, but once it gets below 80, there is no warnings that she is getting low until she all but passes out.

So her doctor is sending her to the Children's Hospital at Dartmouth to see the head of pediatric endocrinology tomorrow.

I am told that this doctor is the best of the best in this field and am hoping her can help us get her numbers in better control.

2 weeks ago her other endo ordered the insulin pump for her, but the pump company and the Children's Hospital both think that with her numbers being so erratic that it is too soon to attempt the pump.

She was really looking forward to not having to have her insulin shots every day and is bummed that she has to wait for the pump.

She continues to be a trooper about the finger pricks and shots everyday, but sometimes it gets a little overwhelming fro her.

She hates having to wake up everyday and be reminded she is sick as she has to have a shot first thing every morning.

We have signed up for a the diabetes walk for a cure in our state and I have signed her up in the JDRF penpal list, so hopefully other kids her age will write her and share their feeling about having diabetes.

The hospital we are going to tomorrow has a support group once a month where the kids have a diabetic friendly tea party and kids get to do group activities, and the parents get to chat about the latest diabetes information and just support one another..

It will be nice for Mikayla to meet other children with diabetes and for me as well..

I had my first run in with the school just before school let out. They had a move up day, where the kids get to meet their new teacher and even though the nurse and I gave the new teacher her health care plan, she let Mikayla walk to the nurses office by herself when she said she felt low.

She fell down on the way, but managed to get there and after they treated her with juice and sugar tabs she was 49, so she must have been about 40 when she got there.

The nurse called me and asked me to pick Mikayla up as she said she was too tired to get through the day..and of course she forgot to mention that the teacher sent her to the nurses office by herself.

I was so upset I wanted to hit someone, and I am a very calm person. But I gave this teacher her health care plan, told her personally that she needed to have a friend walk her to the nurse if she felt too weak that the nurse said she'd come get her..and yet she was allowed to walk to the nurse alone...grrrr!

I was told that a member from the Children's Hospital will come to the school and speak to all staff members who will have contact with Mikayla, including custodians, lunch staff etc..and will stress the importance of making sure she is not allowed to be alone at any time in school...

As well as go over all the other issues in dealing with a child with diabetes...

Unfortunately I have no faith in the schools ability to care for my child at this time and hope that once the hospital trains the staff, I will again be able to entrust them with my daughter. I will have to pray on this!

Okay, I have to run and get all my papers and record in order for Mikayla;s trip to the hospital tomorrow, I wanted to check in and let you know how she is doing and ask that you once again keep her in your prayers..

Thanks you and God Bless,

Thanks for the update! I do hope things at school get MUCH better REAL soon!

Good luck tomorrow!!! We will say a prayer and will be thinking about you both!

It is great that you are seeing the head pedi endo, and are involved with groups, but I will again say the unwelcome truth that the Lyme will cause issues that the diabetes folks aren't familiar with and vice-versa.

It is encouraging that someone wanted to do the pump for Mikayla. On the pump, you will not see those huge blood sugar drops because there is no big reservoir of longer-acting insulin. With the variability caused by Lyme and Lyme meds, I think the pump is just really important.

As a nurse I have to agree that her blood sugars are way to erratic to be on a pump just yet. As a school nurse I have 6 diabetics..;.whose sugars are all over the place and test and treat many times a day. I only have one on a pump;;she's in 8th grade and has maintained a steady bs level now , and maintained what she can and can't eat etc.for over a year.. JOslin which is one of the leading children's Diabetic clinics inthe country wouldn't even put two of my school kids on pumps YET, as they are too inconsistant with their blood sugars...

but in awhile, when things settle down, it's wonderful, and mikayla will be a great candidate and will LOVE not having to get a shot everyday!!\\

good luck with the new dr. Are you anywhere near boston where you can go to the joslin clinic for children wiht diabetes? tHey have support groups, camps etc..for the kids. anyway, they're online if you ever want to google them...

good luck today,

Lyme variability with blood sugars is another reason to have this added help.

It is circular reasoning to say that fluctuating blood sugars signify a lack of readiness to use a pump, since for many it is injections that cause the fluctuations.

Some people have uncontrolled, swinging blood sugars which indicate a lack of attention to their diabetes care, an unwillingness to test adequately and so on. The pump is a lot of work. This type of person might have a high blood sugar and just "blow off" doing a new pump insertion, for instance. This is not a good candidate for the pump.

On the other hand, conscientious folks with difficult-to-manage blood sugars make the best pump candidates, because they will continue to be conscientious, and they can benefit the most from the change.

Young kids, with their unreliable eating and unplanned exercise levels, can really, really benefit from the pump, because it is so flexible.

I'm sure the support group will be very helpful on these issues. Other parents whom you will meet there, are your best resource.

We did not like Joslin at all for a child. It is a diabetes factory! We use Stuart Brink in Waltham, an amazing doctor who travels all over the world helping kids with diabetes, and has a wonderful way with young children. He is also great with the Lyme. He is on the Board of 3 major diabetes organizations and has written a book on artwork by kids with diabetes as a way to express emotions about it.

p.s. Did you agree that Mikayla was too tired, or was she still recovering from the low? Was it okay with you that the school nurse sent her home? Sometimes they overreact w/lows, and are afraid to have the child there. A 504 plan prepared over the summer will give you a lot of leverage in ensuring that things get taken care of. The ADA has samples on their website. You do this with the principal.

p.p.s. It may see like a small point of silly political correctness, but I have come to despise the term "diabetic" as a noun. What other type of illness is identified this way? This term brings all kinds of prejudice as well, mainly based on type 2. Anyway, my daughter is many things- a student, a musician, an actress, a friend - who happens to have diabetes. I do not identify her by her illness. Our school nurses never use this term.

Hope the new endo can sort things out.

Thinking of you and your daughter,sending you both a rainbow from downunder,

bettyg

Posts: 3154 | From NH , USA | Registered: Oct 2002  |  IP: Logged | 

I just got back from the Children's Hospital at Dartmouth ( Chad) about 30 mins ago... it takes a little over 2 hours to get there, but it sure was worth the trip.

We met with the head endocrinologist and my husband and I could visibly see his disbelief when he read that Mikayla's level was 971 and that she was sent home with me to care for her, instead of being admitted into the hospital.

He said and I quote " to put it diplomatically, let's just say that we do things VERY differently here"

He and the intern were truly speechless when I told them her blood sugar levels over the past 6 weeks, how she will go from 500 - 51 in less than an hour..and how her doctor never advised me to check for keytone unless she was over 500, or that they had already ordered the pump for a child who is clearly not ready to be on the pump.

This endo does want her to eventually be on the pump, but he feels that we will get better control (tighter control) by counting carbs and giving her insulin based on the intake of carbs.. and using insulin to correct a high.

So instead of 2 injections a day, she will now add another shot at lunch time and I have to learn how to make corrections and do the carb to insulin ratio...

The endo was concerned about the way she is being treated for her diabetes and said it was the old way of doing it, and while it may be okay for some adults to be treated this way, it was not the recommended treatment for a child as young as Mikayla.

He was so concerned, that he is having us come back to Chad tomorrow to basically start from scratch and learn how to treat Mikayla's diabetes better. We have 4 hours of training scheduled for tomorrow, starting at 9:00 am, so I have to leave home by 6:00 am to get Derek to my dads and make the long trek back to the hospital...

The endo was also upset that Mikayla was allowed to walk to the nurses office by herself when she felt low and said that his diabetes educators would make certain everyone in the school would be aware that she is never to be left alone and that if she is allowed to walk alone to the nurses office when she is low again and falls, collapses, gets disorientated or goes into a comma, that they will be held accountable in a law suit..

He said he has no tolerance for people who are given information about the seriousness of diabetes and ignore the heath care plan...and that it will be made very clear to the principal that this will not be tolerated..and that while Mikayla is at school, they are responsible for her and even if it takes hiring additional staff, she is not to walk alone..ever..

We could tell he was serious and wasn't just trying to reassure us, and to be honest, we need someone like him in our corner to get this important fact across to the school.

so much happened today that I want to share with you, I can't believe all that I learned in 5 hours! And I truly feel like Mikayla is in much better hands now...

Did I tell you that she gets to meet once a month with other kids her age who have diabetes..and while she is visiting and having a tea party, the parents get updated on the latest news and get to chat.. and if I want, I can join a group where parents and kids all meet at others homes twice a month for additional support..

I wish I had time to fill you all in on everything I learned today, but I have to get going and get everything lined up for tomorrow...

I almost forgot to tell everyone, that at Mikayla's last follow up visit with Dr.Jones, 2 weeks ago....... he declared her "cured" of lyme..though he said he likes to say she "Graduated" not was "Cured" as he doesn't want to jinx her...so no more Lyme!!!!!!! Yippee!

Okay, gotta run, I'll update again with tomorrow's appointments..

Thanks for keeping Mikayla in your prayers..

Things are going to get better very soon, it sounds! And I'm so happy that Dr J says she has graduated!! That's awesome!

Tell Mikayla HI for us!!

Im sure under his care she 'll be under control soon and he''ll be starting the pump sooner than you think! I think this is the best route as well...

you sound so much calmer..I"m so glad you found him. sounds like he'll take the bull by the horns so to speak at school also, so that's great...

unless her diabetes is interfering wiht her learning you may not have a 504 at school..but you can still have all the things you want in her medical management plan in place, like the buddy system etc...I have quite a few diabetics who don't need 504's or IEP's because he diabetes doesn't cause any problems with their learning and the parents don't feel they need one, but still want to make sure the management plan laid out by the dr and parent is strictly followed, and that's what we do...

good for you for remembering to mention this..i'm sure it''ll never happen again. I still have 8th graders come down with buddies because they drop so quickly!

glad things went so well...you're on your way,a nd mikayla is in good hands...

Lisa

All my earlier posts about tight control and asking you why those doctors and nurses were doing things the way they were doing things were because it just didn't seem like you had the proper help. It sounded like the dark ages.

Now, you are in great hands. This is very clear. No need for me to say anything more! I am so relieved for you and Mikayla.

Congratulations also on Dr. J's opinion about Lyme.

p.s. What was the name of this doctor at Dartmouth-Hitchcock?

Great mommy!

The American Diabetes Association has a sample 504 on its website, as well as a sample health care plan (also needed).
The 504 is done with the principal, the health care plan is done with the nurse. if you go to the ADA site, the difference is clear.

A 504 has some "teeth" in that if it is not followed, the Office of Civil Rights at the Federal Office of Education will investigate and enforce. In Boston, the number of an OCR staff who can advise you is Neil Green, 617-223-9692.

However, we have preferred to view the 504 as a roadmap that helps us and the school well work together. In general, they need help having their duties spelled out, who does what, etc.

We try to have all this in place before school starts in the fall, and meet with staff on the first day or two of school. We also train staff on glucagon very early on.

Every school is different, but the potential is for a school to welcome a 504 plan and your help with it can really help the whole relationship. It's money in the bank!

p.s. Our school nurse went TO the classroom for years. OCR completely supports this. When our daughter was very young, the nurse tested her in the classroom, and my duahgter didn't even stop doing whatever she was doing. Then when she was a little older, the school nurse went to the classroom on an hourly basis to check on things, and make sure the insulin or carb response to the testing was okay. Now, my daughter takes care of everything in the classroom herself, and really never has any contact with the nurse. So from age 5 to age 14, she went from complete dependence to complete independence, and never missed a class lecture for any of it.

Of course you can get one if you want one with her illness...some parents feel it's not always in their best interst, adn the point I was making was you don't HAVE TO have one..that's all...

here's the guidelines we follow from our state bilaws:

504 Plans
"Section 504 states that any organization receiving federal funds cannot discriminate against protected classes of people. In this case, it requires schools to ensure that students who have a disability, even though they may not qualify for special education services, be provided accommodations so they benefit from school. When necessary, the school will work with the student and their family to develop a plan designed to assist the student in accessing and thus benefiting from school. Accommodations are provided under Section 504 of the Rehabilitation Act. For a better understanding of Section 504 see the United Stated Department of Health and Human Services Rehabilitation Act or Section 508 of the U.S. General Services Administration.

If your child has a disability and you believe that accommodations are necessary for him or her to benefit from school, communicate this to your child's teacher or make an appointment with the Principal or Assistant Principal to express your concerns. You can also contact the Special Services office at (253) 891-6040 and someone will help you work with your school. "

the fun part is , as a parent, you get to be the one to choose..! Whatever works best for you and mikayla!!

Either way, you 're the boss, and the school has to follow what you and the doctor says...

glad things are going so well..

Send Mikayla a hug..And remember that it will get easier but there will ALWAYS be bumps in the road..Consider carefully every new abx and supplement as a potential problem until you have read and experienced them..And any new stress can cause a problem. I am sure that my daughters out of wack Cortisol level is part of her problem with non-control.

The best to all or you!!!

Glad you got a great, caring dr. this time for Mikayla. Thanks for the detailed update. My best to her/you/family.....