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Father of a 4 year old with type one diabetes

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#1
bbsound

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Hello, I am a father with a daughter of 4 with type one diabetes . My wife and I are in agony about it and I would like to know who and how well has parents in this forum cope and have worked their way to where they are now.


It is very hard to cope with this because not only is our daughter of 4 a new type one diabetic , we also have a 5 month old son that is extremely colic. We pretty much have more than our hands full at the moment.

We almost lost her ( our daughter ) because on on march 29th of this year she had see here pediatrician and the reason for seeing the doctor was because the day before she had a bad cough and would vomit because of it. Also, no appetite . Constantly asking for water and urinating frequently. Also saying here belly hurt. the coughing and complaining
started on the 25 and gradually crept up till the 29th.


The pediatrician looked at her and asked question of here symptoms and we explained in detail what i described above and his words where, " well, the symptoms you are telling me sounds like diabetic symptoms but what I can see here (looking in here mouth) she has a throat infection and her tonsils are really large which could be why she may be induced to vomiting when ever she coughs . " The pediatrician gave us prescriptions for her throat and motirn for here fever AND he also ordered her blood work, gave us a form to bring to a nearby LAB to take here blood and told us " you dont have to do it today , You can do it friday if you like which would be the first of april.


well........ the next day the 30th, we had to rush here to the hospital because her coughing and vomiting got worse . So , march 30th our baby girl who has no idea why she is getting needle after needle is a type one diabetic and she does not even know what dangers it can have on her. I just want to know if anyone here has gone though this type of pain and how you deal with it.


Right now she is still in the hospital . She is scheduled to come home today and we are already worried if we will get the dosing of here insulin correct.. Its just some much to absorb this new lifestyle we must now maintain to keep out baby alive.

#2
princesslinda

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Welcome bbsound! I'm sorry to hear of your little girl's diagnosis of diabetes. I can only imagine the stress you and your wife are experiencing right now.

I'm T2, not on insulin, so I can't offer you specific advice, though i'm sure many of our T1's will have lots of good advice and encouragement.

I encourage you to post your experiences, as you'll not only get good advice, but others will also benefit from what you're learning. While there will be lots of changes, you'll find as you all become accustomed to them, things will get easier for all of you.

T2, diagnosed 8/31/06.
Meds: Metformin-ER 500 mg twice daily, HCTZ 12.5 mg every other day for BP Enalapril 20 mg 1 daily (ace-inhibitor)
Diet: I eat to my meter, generally eating 75-100 carbs/day with the occasional splurge.


#3
poodlebone

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I'm very sorry to hear about your daughter. The fact that she had all of the classic symptoms of Type 1 diabetes AND the doctor even mentioned it but did nothing about it is frightening. Every doctor's office I've been to has a BG meter and can do a quick check right there from a simple fingerstick.

I was diagnosed when I was 19 so I didn't have to deal with it as a child and neither did my mother. I'd suggest also visiting the Children With Diabetes web site which has a very active parents forum.

Edited by princesslinda, 06 April 2011 - 07:55 AM.
removed link.

--
Liz
Type 1 dx 4/1987
Minimed Paradigm 723 Revel + CGMS
13mm Silhouettes + Sure-T infusion sets
Lifescan Ultra meters
Last A1c: 7/10: 5.4

#4
aiah23

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Welcome! I can tell you, from the perspective of someone who was diagnosed type 1 young (although not as young as your daughter) that it's honestly harder for the parents to deal with than the children. Kids are incredibly resilient when it comes to things like this. Yes, it is a lot of information to absorb all at once, you'd feel that way whether it was type 1, type 2, or some other chronic condition that required daily medication (or a life-threatening allergy, etc). It's okay to feel that way. When your daughter comes home and you do follow-up with her pediatric endo they're going to send you guys to an education class, so you can learn more about your daughter's condition and how to better manage it. If you want to get a jump-start on it, you can read one of the following books (and you'll want to keep them for future reference anyway): Thinking Like a Pancreas (by Gary Scheiner) and/or Using Insulin (by John Walsh). Both will help you better understand how insulin works and how to determine/adjust insulin dosing. You will get thru this, just take it slowly. It doesn't keep feeling this overwhelming, I promise. Please know you did nothing wrong for your daughter to end up with all of this. Many type 1s are diagnosed when battling a severe illness or shortly thereafter (it's suspected that viral illnesses bring out the autoimmune attack resulting in type 1 earlier).

Fawn
Novolog and Levemir, MDI
Sleep deprived first time mommy working full time! :eek:
A1C: 6.7 as of 04/28/12

#5
Subby

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Hi bbsound, I'm sorry that your daughter and your family has had such a rough time of it. Know that the diagnosis of type 1 is often quite a traumatic thing, unless it gets picked up in a timely manner, which I think takes a bit of luck. I sure had a terrible time of it, though I was diagnoses later at 15. So while that doesn't take away from going through the ringer, lots of people will read this and know the kind of upset and disorientation you are going through.

I just don't have the experience myself to comment on exactly how much things like taking injections and coming to terms with the diagnosis, will be affecting your daughter. I do know that for myself and the absolute vast majority of hundreds of insulin dependent diabetics I've chatted talked to or eavesdropped on conversations and probably thousands I know of by way of studies and reports, find that after a little while needles are not at all a big deal. I'm not trying to be flippant when I say: I quickly found that shaving my face every few days was in some ways more annoying and inconvenient.

Now from the point of view of your daughter things could be different especially right now. But one thing I can bet is that she will be looking to you for cues as to how to take this. If you approach it with the feeling of trauma, chances are she will pick that up and likewise think of it as a trauma. So if there is any way you can be brave in the most wholehearted way when helping her with injections, I'm sure that will help her come to terms with that immensely. I bet you are already doing that, but I thought it worth urging if there is any doubt. If you wonder about the actual pain, inject yourself a few times (with no insulin in the needle of course!). You should find it is relatively painless. It might help you determine the best method, too. I find that quickly and surely is the best way.

As for the bigger picture, it is going to take some time to get used to living with diabetes. But there are so many positive stories I've heard of T1s being just another kid. I don't know if you've had shock tactic advertising where you are, with miserable looking diabetic kids. So maybe it's a way to get funds to pull on the public's sentiment with exaggeration, but t1 kids are just like any other kids, after the initial shock wears off.

With getting doses right, it will be very helpful to chat to other parents of young T1s. Doses can be tricky for many of us, but if you learn basic principles of taking care to gravitate towards a decent dose, they can be applied to all situations, and you can always be on the path to improvement. It may be rough for a while but keep asking questions and soon things will be familiar, and life goes on. In terms of learning about complications, these days the outlook is a great deal better for T1s that in the past, and a long and healthy life should be absolutely possible.

Good luck with your situation with both kids, I hope in a month you look back and can feel you're on better ground.
20 years T1. NPH and Novorapid.
Some essentials for my blood sugar control: dosing via i:c ratio and cf • basal testing when needed • daily 40 minutes moderate exercise (or close) • carbs somewhere below 120g currently • only eating carbs and carb/fat combos that do not cause a problem spike, with or without insulin.

#6
jenb

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You and your wife certainly have a lot on your plate. I'm sure it looks quite bleak right now, and that you are both exhausted. My heart goes out to you.

Fawn and Subby have pretty much said it all. I'll just add that your daughter will pick up on your attitude towards her diabetes. Even if you do not feel it right now, try to express a positive attitude and incorporate her condition as your new normal. At four years old, she's capable of taking an active role in her treatment with your guidance. It will help her be proactive and will start her on the path to good management and independence later on.

After the grief and feelings of confusion and being overwhelmed, this will start to make sense. Support each other, try to get some rest and as impossible as it seems, try to have some fun. You all deserve it.

Jen

#7
Jan B

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bbsound,

I really feel for you. Your little girl will be feeling so much better after getting out of the hospital. What Fawn said is so true; it's much worse on you -the parents, than for your child. Sure, she won't appreciate the injections to begin with, but she has you to worry about everything else. I've lived the life of a diabetic for over 30 years and honestly, it's only a tiny part of who I am. We require a much closer dedication to health, but I for one, sure don't feel like a sick person. Your baby girl can live a good long life; don't let all the medical information scare you. I know, that's easy for me to say . . . but I just wish you could know, it's not as bad as you might envision.

I'm sending you and your little girl lots of love.
Jan

Type 1 since 1979
Diagnosed at age 18

#8
bbsound

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Thank you all for the quick replies . I know that we are not alone. Thank you poodle for the link. I am also a type 2 diabetic (diagnosed 2004) and before my daughter was diagnosed , I had been slowly falling into a depressed state and not caring about my diabetes much. Now that she has diabetes type 1 , I have to be there for her and that changed the way I have been neglecting my diabetes . So together she and I will poke each other on the finger on her schedule sugar testing so that she will see that its not only her going through the pain.

thank you al.

#9
emcestrada

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My 4 year old daughter was diagnosed the same day.

We have had an emotional roller coaster week, from the diagnosis to the 3 day hospital stay to our first night at home. She went back to preschool yesterday and we've been managing ok. One of the nurse gave us a book called "Taking Diabetes to School", she shared it at circle time yesterday.

Our struggle right now is getting her BS test while at school. She's in a private school and the school is apparently exempt for certain things. They do not want to do the BS test with her. The plan right now is for my husband or me to test her before lunch.

Our daughters need us to be strong for them.

#10
bbsound

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My heart goes out to you emcestrada. Im so sorry to hear that. My wife and I had to sign our daughter out of daycare/preschool and are in a rut right now as to how to go about the schooling for her.

#11
DanG

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My heart goes out to you emcestrada. Im so sorry to hear that. My wife and I had to sign our daughter out of daycare/preschool and are in a rut right now as to how to go about the schooling for her.


Schooling can be done in many ways.
We schooled our children at home - they are well rounded and quite intelligent.
Tax funded education is *not* the best education you can provide.
Tutor education has always been the *best* form of education. Schooling your own kids at home is a tutor situation and many many people provide education at home these days. You may want to google the resources available for you on that type of option. It ain't cheap, but poor education is not cheap either.

#12
Richard157

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I am addressing the both parents of daughters with type 1 diabetes.

In modern time type 1 diabetics have so much knowledge they can tap into, and so much wonderful technology that will enable them to have good control. If you have a good pediatrician-endocrinologist, your daughter is in good hands. Poodlebone gave a link to am excellent site for parents of diabetic children. Someone also gave a references to two very good books that will help.

I was diagnosed in 1945 when I was 6, and after 65 years of type 1, am very healthy. With good control your daughters can have long, healthy lives. Good luck to both of you!

Richard
Type 1 for 68 years, A1c = 6.1, pump with MM 523 Revel, I have good health.

You never know how Strong you are until being strong is the ONLY choice you have!

#13
racinghoss

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My daughter was diagnosed at 6 years old. Like you, we were shocked and scared too. The most important thing (other than managing the disease) is to keep your spirits up - for her and for you. My daughter asked alot of "why me" type questions. She had 2 sisters at the time (and now has a little bro too) who are not diabetic. It was tough. She did not want the shots at first. We used ice cubes to numb the injection locations for her when she fussed about it. It seemed to help; although it may have been mostly psychological. SUPPORT!!! SUPPORT!!! SUPPORT!!! Dont let her feel alone in this.

As far as how she is feeling...I cant really say. I know my daughter was resentful and scared of the shots and finger pricks. However, she adapted. I will ask her if she remembers how she felt and relay that to you.

It is not the end of the world. Truthfully, our family is stronger and more healthy as a whole than we were before. We eat healthier and try to set good examples for her. I was diagnosed T2 about a year later. I also share that bond with my kiddo. We feed off each other. Your husband needs to do his best to manage his condition. If he slacks off, then your daughter will think she can as well.

My daughter is now 10 years old. She tests herself, draws up her own insulin, and does her own injections. Her A1c is always 7 or 7.1 (what the pediatric endo's want). You will get used to it. What seems overwhelming now will be "old hat" in a few months. Communicate with your Dr's and work on getting her dosage's figured out. She attends public school. The nurses there can be good or bad. Some of them are very good and on auto-pilot. Others need to be monitored closely.

Where are you located? Please dont be afraid to send me a message if you have any questions. I have been there. I will send you my email address as well. Good luck and try to relax.

EDIT: for some reason I cannot send a PM. My email is racinghoss at hotmail dot com. Feel free to use it.

#14
Yikes

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I was diagnosed diabetic at 3 years old. My parents have always said how difficult it was for them but gained strength from me as I was blissfully unaware what was going on with me. My parents had close links with my pre school and all the schools I attended and informed my teachers of everything they needed to know. We had a diabetic specialist nurse who my parents could telephone if there were problems. She went into the schools and ensured they knew what was expected of them. The hospital were great and on one occasion when I was very ill my parents rang the hospital out of hours and got put through to one of the senior diabetic children's specialist doctors.

With regards to the dosing of insulin etc you will get the hang of it very quickly. You will notice very quickly if your daughter is running low or high and you'll have everything sorted. I remember being in the hospital and being so glad as I was starting to feel better as I had felt ill for weeks.

I assure you it gets easier. I have been diabetic for 23 years. It's true what children are very resilient.

#15
bbsound

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@racinghoss : I live here in brooklyn. Borderline to queens. thank you for your input. it is greatly appreciated .
@Richard157, I have always thought that once diagnosed with type 1 , it was considered a death sentence because In all my life growing up around diabetic family members and friends who where and are diabetic never lived/lives to to ________ fill in the age. I was told by the endo's that with todays technological advancements and treatments that the debilitating part of the disease can be controlled a whole lot better now than in the 70's.

I am proud of you Richard157 because I see that it can be done and that gives me more strength to help my daughter live as long and healthy as you.

Today is our first day home with our baby girl and my wife and I look at each other with a " what are we doing look" every time our daughter asks for a snack. So far since I registered on this forum I have a lot of information and hope/help.


@Yikes you are correct about being unaware as a child of that age and that is one thing I am glad about. She has no clue what is wrong with her but she will learn that the disease is a part of her and she will be conditioned to take care of herself just as any one would know that brushing your teeth every morning is what you do.

thank you all for input

#16
princesslinda

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You're baby girl is very lucky to have parents so willing to seek help and information this early in the game. Tomorrow should be easier than today, next week easier than tomorrow, next month easier than next week and so on, until diabetes becomes just a part of her daily routine.

I'm glad to hear she's out of the hospital and home where she feels more secure.

T2, diagnosed 8/31/06.
Meds: Metformin-ER 500 mg twice daily, HCTZ 12.5 mg every other day for BP Enalapril 20 mg 1 daily (ace-inhibitor)
Diet: I eat to my meter, generally eating 75-100 carbs/day with the occasional splurge.


#17
DanG

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She has no clue what is wrong with her but she will learn that the disease is a part of her and she will be conditioned to take care of herself just as any one would know that brushing your teeth every morning is what you do.


I would drop the use of thinking diabetes is a disease. It is totally non-communicative and really is not lived with like a disease. It is more a dietary condition. Keep the brushing your teeth every morning thought - drop the disease moniker. Diabetes and insulin junkie status is merely a part of life to manage. We each have numerous things we manage. I would drop the disease moniker.

#18
bbsound

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well I agree with you Dan g.. Unfortunately we are off to the hospital this morning because she has a high fever and is vomiting again and asking for water constantly but no urination. she not holding water down. our second day home and already she must return.. Im so on empty right now and exhausted.

#19
jenb

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Hugs to you and your wife - I ache for you. Sounds like she picked up a bug somewhere along the way (the fever suggests that her illness is not diabetes-caused), but it's good that you're headed to the hospital. Staying hydrated is key. Illness can cause blood sugar to stay elevated so you're right in seeking help ASAP.

As impossible as this will seem, you might try to get a relative (Grand parent, aunt, uncle....someone you trust) to stay with your daughter for a few hours. You two need to get some rest so you can return to the battle refreshed.

Please let us know how all of you fare. I, and I know everyone here, will have you in our thoughts.

Jen

#20
Subby

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well I agree with you Dan g.. Unfortunately we are off to the hospital this morning because she has a high fever and is vomiting again and asking for water constantly but no urination. she not holding water down. our second day home and already she must return.. Im so on empty right now and exhausted.


Sorry to hear of it. Jen's right that fever suggests more, but at the same time are her blood sugars high? I'm not sure what approach you've been used to with your diabetes - T2 may often involve less frequent testing - but if there is funny business going on it's always first base to check blood sugars. Going high and ketotic can upset the stomach and cause excessive thirst.

As for the whole disease thing, well, I've got no problems with it as a suitable descriptive word, it just means something gone awry with the body. I wish you and your daughter luck and swift improvement as you focus on the important things, which is probably not quibbling over semantics at this stage. :) Let us know how things are going.
20 years T1. NPH and Novorapid.
Some essentials for my blood sugar control: dosing via i:c ratio and cf • basal testing when needed • daily 40 minutes moderate exercise (or close) • carbs somewhere below 120g currently • only eating carbs and carb/fat combos that do not cause a problem spike, with or without insulin.




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