Diabetic Child = unhappy birthday


#1

I got off the phone with my 12 year old daughter a little while ago. She called me from school. She is a Type 1, Insulin Dependent Diabetic, was diagnosed only a couple months ago. Her blood sugar dropped today, she feels bad, has a horrible headache and needed to know what to do. Just moments later a group at my office just brought me some sushi for lunch. Plus 3 cakes, each with candles on top, and a FIRE EXTINGUISHER.

For the record, I’m 47. Feel a lot older. Honestly don’t feel like celebrating. My daughter is having a really rough time with her diabetes and it is taking a toll on all of us. It has completely changed our lives and I know that I will be making some big changes. She has to test her blood sugar about a dozen times a day, and give herself insulin 3 to 5 times a day.

She has to call me every day from school when her blood sugar numbers are too low. I’ve been getting calls virtually every day. The doctors are dumbfounded and the FDA recently approved a pediatric monitor that we are going to try to get for her. She would have to have an implant in her skin, it would then connect to the monitor by radio frequency and sound alarms if her blood glucose level goes out of the doctors “target” range so she could take corrective action. I didn’t post it, but about a week ago we had a very critical issue with her at night, damn scary for all of us. Today she feel horrible, bad headache from her sugar dropping too fast. Her grades are also suffering and that is putting her under some stress. She’s always been in the top 2 or 3 kids in her class for grades, but she has actually gotten a “D” on one test and an “F” on another in a different class. Her semester grades are 2 Bs and the rest are As. But I don’t think she has ever gotten a B on a report card so she is putting pressure on herself to get her grades up and that is probably also a bad thing. So she feels bad, hates to do bad in school, and just wants to be a regular kid.

I have another call into the hospital to talk to her doctors, as soon as they call back I’ll be leaving work to go pick up my daughter and take her home.

Lots of presents at the house, not a lot to celebrate. I guess I’m just feeling sorry for my daughter and myself. My wife has plans for us to go to a new restaurant tonight, but she cancelled those after getting the email update after the phone call. Hopefully we’ll go up to Chicago’s Chinatown on Sunday after mass. We all love that and it would make for a good day for my daughter.


#2

I’m sorry your’re going through such a tough time. This might not help much, but remember that nothing happens outside of God’s will. He is with you, never leaves your side. I’ll pray for your daughter’s health and for comfort for your family. Cling to Jesus – and remember he is holding tightly onto you, especially during this difficult time. :hug1:

God bless (and happy birthday anyway!). :cake:


#3

Not sure if this applies, but in our county, kids who have ongoing health problems qualify for concurrent home teaching. Meaning on days they can’t go to school, a home teacher will come to them.

I know, because that’s what I do. We help keep the students on track with their work so they aren’t held back.

If your daughter is having problems and will need time to get her diabetes under control, maybe you can look into it. At least she wouldn’t have to be at school feeling so awful. —KCT


#4

So sorry about your daughter! I have several friends who are diabetic. It can be very difficult, especially the adjustments in the beginning. I will be praying for her. Give her some candy to carry in her pocket, good for when she needs to raise her blood sugar fast. Maybe she also needs permission to have a snack outside of lunch-time–something neat and quick that she can eat at her desk.


#5

**As a now grown up “sick kid” I can feel for you and for your daughter. But from her perspective, be careful not to let her see you get too down. If things like having an unhappy birthday start to become a regular occurance she will feel it is all her fault (no matter WHAT you say) and she will suffer more.

It is very tough, but you and your wife need to find that balance between “life goes on” and compassion for your daughter.

I will pray that you find help for her soon!

malia

p.s. I am sure you are already doing this, but research research research!!! Find out everything about diabetes that you can. Join support groups (online and or real life). Find kids for her to talk to who are going through the same thing. Seek out other opinions from various medical professionals.
**


#6

Thanks all. Like I said, I’m feeling sorry for myself.

Here diabetes is the Type 1 auto-immune disorder type. Its not the far more common Type 2. Not sure that really means much!

Her school is actually great, she attends the Catholic school at a parish a few towns north of where we live and they are very catering to her needs. One of the teachers at the school is also a Type 1 diabetic so she looks out for my daughter and my daughter is given time/space to give herself blood tests, insulin shots, etc. Another girl at the school accompanies my daughter when its testing time so don’t have to walk the halls alone and a nurse is present to help most of the time. She has a complete cabinet of supplies at school including juice, glucose tablets, an emergency glucogen kit incase she passes out, etc. She also carries all that in her backpack with her.

We do try to keep up a good face around my daughter and treat her like a normal kid, but when I get phone calls from her and she is obviously feeling very bad then it gets me down too.

Anyway, thanks to all of you, I just needed the little pick me up you gave me :thumbsup:


#7

I think it is perfectly normal to grieve the fact that your daughter’s life will be different from what you previously had thought it would be and, therefore, yours too. Diabetes is tricky for adults, let alone young kids. I think finding good support for your daughter and yourself and family is essential. It’s so helpful to talk to others who know exactly what you are going thru and can give you help and support, beyond just the medical issues.

Just said a prayer that God will give you something to smile about on your birthday and that your daughter feels better soon!


#8

I’ll recommend that you go to www.insulin-pumpers.org. Join their main list and also join their Parents of Pumpers list. You can receive support and understanding their. While it is geared to people who have insulin pumps, they are supportive of all diabetics. You will be able to talk to other people that you in the or have been in the same situation that you are in.


#9

I know several young people who were diagnosed with Juvenile Diabetes and they said the pump worked really well. If she’s only been diagnosed for a few months, then that’s still pretty early and in the adjustment period. Maybe it’ll get more regulated as it goes on.

Prayers for you and your family…


#10

Agreed…BUT…

…this chronic condition is and likely will be “normal” for *your *daughter. As such you need to model good (i.e. positive) coping skills to her. If at every set-back you fall into a funk of depression–what message does that send? I’m not suggesting you ignore her symptoms or ill health or go charging out to dinner oblivious to her discomfort…but in this case to cancel the birthday events entirely along with a glum disposition carries the very real possibility of making her feel guilty and burdensome.

Set up a meal at home…on the couch. Surround her with family and a brief celebration. Have some balloons, a party hat–maybe a treat she can share in with you. Then call it a night and enjoy dinner out another time. It’s a small change, but one with an important message–namely that there will be times she won’t feel great, but life goes on and she can partake cheerfully, even if in a limited way. She is far from the only kid suffering from and having to manage a chronic and serious health condition. Make sure you equip her with the skills she needs to enjoy her life despite the challenges her diabetes presents.


#11

Go out an buy some diabetic cook books. Also, stress affects blood sugar levels in diabetics. She’ll get this under control. Don’t forget that there is always a learning period before getting it right. Diabetes (type I and II) run in my family (I would say that about 30% of my family has one form or the other). I did most of my growing up in a household with diabetics so now I prefer sugar free pudding, jello, drinks, cakes, etc. over the regular types - especially jello). However, just a word of caution for your daughter, when it comes to the sugar free candy she SHOULD not eat it like regular candy (a whole pack at a time) because it can cause digestive issues (uncomfortable bloating or diarreah or both). Stick to healthy foods and cut back the starches.


#12

Heavenly Father, I pray for some relief for the tensions melensdad is feeling, and I ask that You guide melen’s doctors to find a way to even her health out, both for her and her family. In the name of Jesus I pray. Amen.


#13

It sounds to me like you all are managing a big burden with grace and courage.

I’m diabetic–which was under control–and suddenly slipped into Stage 3 Chronic Kidney Disease. I have to be even MORE concerned about food and avoid things with too much sodium, which is hard to do. Have you seen how much salt there is in things?

But I’m getting the hang of it, and sdo will you and your daughter.


#14

My dh was diagnosed with type 1 when he was in kindergarten many years ago. His health is GREAT and if you have any questions he’d be glad to answer them from his personal perspective, via his wife (me!).


I will start by saying that he suggests putting off the pump as long as possible. Which is what he did. He’s been on the pump for 2 years now, but it wasn’t really a choice to go on it. If he could, he’d go back to multiple daily shots. Which is saying a LOT because he really hates needles!


I agree with a pp, this is still fairly new territory for your family, so don’t let it get you down. Be very matter of fact in dealing with it, so she gets a healthy perspective and doesn’t get overly stressed out. (Stress is a HUGE factor for my dh. He has to be hyper vigilant of his low sugars when he is stressed.)


3 months isn’t very long. And your dd is 12, so she should be able to adjust her own sugar/insulin unless she has a problem with basic math. NOT saying that to be mean at all, just saying that if she feels more in control of what to do, it will lower the stress for everyone. kwim? Of course, you still need to know what’s going on, but maybe she could keep a written log? If the problem is low sugars, maybe some protein snacks every couple hours would help even her out? (package of peanuts, peanutbutter crackers, stuff like that in her backpack?) When this happens to my dh, it’s usually because his stress is burning the sugar. So he’ll test and the numbers will be fine, but then they drop shortly after. So he has a little something every so often even if his numbers are okay to make sure they stay up in the normal range. Not enough to spike them, just a little bit of protein to keep him level.


God bless you we know it’s hard. But this will become normal for her and your family and a few years from now it’ll just be boring old standard way you do things without much thought at all. I suggest a couple advil, double check the sugars, and enjoy the birthday as planned. These things are going to happen at times and it will often not be an option to just halt plans, the fun or the neccessary ones.


#15

Speaking as someone with a lifelong, incurable, VERY visible and tough disability (pseudoachondroplastic dwarfism) - can I give you one bit of advice? I KNOW it sounds trivial - but, change the order when you speak of your daughter.

You do not have a diabetic daughter. You have a daughter who has diabeties. The school does not have a diabetic teacher, there is a teacher at the school who also has diabeties.

Again, I know it does sound like nit picking - but, when a lifelong disability is diagnosed it can become overwhelming (as you know). Always see the person first and the disability second, and changing the way you word things will help re-enforce that thinking.

For those of us first person, like me, I remind myself to say" I am a woman with dwarfism" not “I am a dwarf”. Your daughter is a young woman with diabeties, not a diabetic.

Don’t let the condition overshadow the person :slight_smile:

Hugs and prayers.


#16

Wow! What great advice for us all for everyone we come in contact with.

**THANK YOU kage_ar!!! :slight_smile: **

.


#17

This is where I would have to totally and complete disagree. But everyone is entittled to their own opinion and feelings. The only way I would give up my pump is if my diabetes is suddenly cured or there is something better. Everyone is different.


#18

Well just a bit of an update on the whole day.

We talked to the hospital and they are now saying that a pump may be the best thing for my daughter. They had previously said that a pump would be well into the future but now are thinking that a pump may help control the wild swings. Most people we know who have pumps LOVE them and say they have simplified treatment and given them far more control over the disease.

We did celebrated my birthday, but did it at home instead of going out like we had originally planned. It turned out very nice. UNTIL my wife rushed me to the hospital. The CT scan found not 1, not 2, not ever 3 or 4, but 5 kidney stones :eek: I was released this morning after they pumped me full of morphine and gave me a prescription for pain pills. None of the stones have passed. I’m drinking water like crazy!

But the good news is that my daughter had a GREAT day today. Her school had “Special Friends” day and her Uncle Greg showed up to spend the day. They were interviewed by the local newspaper and had their photo taken for the paper too!


#19

I am so sorry to read this. Keep those pain pills handy, you know what they say about passing kidney stones… Anyway…hope you are on the path to getting your daughter stabilized!


#20

Melen had a great day today. :thumbsup: That is the good news. She is in great spirits and I will be working with the doctors again Monday to try to find some sort of way to stabilize her blood sugar levels.

I still have not passed my stones, but am keeping a good humor about the situation (drugs help with that).


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