Newly diagnosed -- TONS of questions!


(Hilary) #1

My son Leo (turning 3 in May) was diagnosed with type 1 diabetes on December 29, 2008 -- just days after Christmas. We have a great doctor and a great group of CDE's but we are overwhelmed, sad, tired... you name it! Leo has been on a pump now for about two months and we are still struggling with managing his BG levels. He is still honeymooning, so we've had our share of lows. And have had plenty of highs as well recently (he is just getting over a cold). I am currently a stay at home mom and so fortunately have been able to focus pretty much all of my attention on learning all that I can. But it seems despite all my/our efforts, his numbers still are ALL over the place. The question that never leaves my mind is "Does it ever become predictable?" I mean will it always be like this (one day in the 300 or 400s and the next 46)? Also, Leo doesn't seem to have a sense of lows or highs just yet. And we see very few symptoms, though are starting to have some clues. Any idea at what age he might begin to have the self awareness and let us know on his own?

Leo is adjusting as well as can be expected. And his older brother (Noah - 5) has been as understanding as he can about all the extra attention given to Leo. But we find ourselves wondering if it will ever settle down -- even just for a bit -- or do we just need to accept that it will always be so up and down. We're checking his BG at least 10 times a day, and when we finally think we see a pattern, it changes completely. HELP! Any words of encouragment and wisdom would be greatly appreciated.

Oh, I should mention that in addition to diabetes, Leo was diagnosed at 6 months with hydrocephalus. We had JUST gotten to the point (two weeks before he was diagnosed with diabetes) where we felt like we might finally be comfortable enough to get a babysitter and have a night out. I can't ever imagine that happening now.


(annaclairesmom) #2

Hi,

my Daughter was diagnosed at the age of three 05/20/07. Although she has had diabetes for almost 2 years, we have chosen up to this point not to put her on a pump. I am not sure of the differences in the ups and downs in comparison to the pump, but it still happens often. Just as soon as were going along good, the next thing we know everything has to be adjusted again. As they grow and gain weight, insulin needs change. today may be a good day, and tomorrow will be all highs or lows. And this is after 2 years! Sometimes despite your best efforts, the glucoses do weird things!


(Hilary) #3

Thanks so much for your reply. I think it is good to know the road ahead is bumpy. We are happy that he is on the pump, it has made things so much easier than when we were doing injections, but it is certainly no promise of perfect numbers. Is your daughter able to to recognize highs or lows and give you any clues?

Thanks again,

Hilary


(scotty8) #4

Hi Hilary,

My 15 year old son was diagnosed 2 months after his 12th birthday. The first year I cried everyday but it really does get better. What doesn't seem to get better is how unpredictable his numbers are from day to day and even hour to hour. It can get crazy when they start growing, are getting sick, when they exercise and when nothing is going on at all. When he was in the hospital, the boy sharing his room was 3 years old. As hard as it was for me, my heart went out to his family because he was so young and couldn't tell his mom how he was feeling.  My heart goes out to you too.  When he went on the pump it changed his life. It is great for him to be able to take a bolus whenever he wants to eat or when he is high.  I still check on him during the night quite a bit and sometimes I have to give a juice box and other times a bolus. Yes the road is bumpy and some days you will handle it well and other days you will have a lot of emotions about it, but he will be ok. He is so lucky to have you to take care of him. :)


(degizi4) #5

Dear Hilary,

My son Dane was diagnosed with type 1 diabetes November 3, 2008 (Just turned 3 in April 2009). Dane is on three different types of insulin with two injections a day.  We are finally to the point that he does not have to be held down for injections.  I was a full time working mom who just quit my job to help better manage my son's diabetes.  My last day of work was April 2009.  I found it so life altering that I could no longer manage work, family , and diabetes.  My son is happier now with me home and I think we are all doing better with managing our new family life with diabetes.  Just after 6 months we feel like we finally have our insulin carbohydrate ratios figured out then he gets sick.  With illness it throws his sugars all over.  Highs lows and everything in between.  I feel for you and your family.  This is a very difficult diagnosis and my heart goes out to your family.  Things will work out well.  The best thing is your son has you to guide him through adjusting to his new life with diabetes.

best wishes,

Danika 


(Lea Taylor) #6

Hilary,

 

Our 10 year old son was just diagnosed last month. I think I am still in shock. As you know, there is no reaction time after diagnosos- no time to let it sink in. You just have to get focused and start managing your child's new and challenging health needs. 

I am sure, like me, you have had many, many emotions surface, but really no time to address them. Counting carbs, monitoring blood glucose, giving insulin, and of course comforting your child is so much more important than dealing with the guilt, fear, intense sadness etc. that you may be feeling. Every high or low number feels as though you have somehow failed your child, and compromised his health. 

I can't really offer you any advice because like you, we are just beginners, just through the gate. What I will say is that you are not alone. I hang on to the many positive and inspiring stories I've read here, and hope that one day my son's story will be an inspiration to someone else.

 


(annaclairesmom) #7

To Hilary:

Anna Claire sometimes tells us, but not that often even after almost 2 years. Last Friday we had an appt with the diabetes educator/dietician. Anna Claire was acting up and wouldn't mind. I was sooo embarassed!  Her Grandparents went with us. I wasn't really looking that much right at Anna Claire because I was trying to listen to Kelly the DE. Anyway, when I finally looked right at her, to give her the "look" you know, the one that says your gonna get it later! I knew as soon as I looked at her that she was low. Her face and the white counter were the same color. I stopped to check and she was 43. I have to go by how she acts and looks more than what she tells me. Even after 2 years I can ask her if she's just tired or if she's low and very often she'll say just tired only to find out she is really low. I am very in tune with her actions and appearance because thats what I most often rely on. About the pump, we are going to pump info class next month, so we'll see.

 

Susan


(Mariam) #8

hi Hilary -

First of all, everyone in this group knows how hard the transition period is as we adjust to life with Diabetes. A friend of mine told me we have to view it as "the New Normal", and that helped me wrap my mind around all the changes.

I can tell you this: carb counting gets easier, and my guess is that the older your son gets and the more used he gets to what lows feel like, he will be able to identify symptoms for you. You will also become more adept at identifying certain mood swings and energy patterns that will trigger you to test. My daughter (now 11) was diagnosed at 8. Pretty much from age 8 she has been really good about recognizing lows.

I liken living with diabetes to living with an infant: remember that first year, when you kept looking for patterns, and just as you figured it out, your child would have a growth spurt and  it all changed? Sometimes I feel that way with Diabetes. That said, the learning curve is steep, but you gain a lot of knowledge and experience as you go, and it all helps. Fluctuations are to be expected, especially when kids are so little and are growing rapidly. Hang in there.

I find that there are periods where things are more settled, for a while, but it does take time for that to happen, especially in transition stages like coming out of honeymoon. I am preparing myself for the fact that puberty wreaks havoc with BGs, and that every period can bring a new challenge to BG control.........

One thing I have always wanted is a babysitter database in my area of kids who are familiar with and/or have T1. I would feel better knowing that I was leaving my kids with someone with that knowledge. I am not familiar with caregiving for hydrocephalus, but my heart goes out to you with all that you have on your plate. I do believe, however, that you WILL get nights out. Have you looked into healthcare agencies where you can hire a registered nurse for several hours, just so you and your husband can get a bit of time together?

On a separate note, over a year ago we switched to an insulin pump, and I would highly recommend it. It has improved my daughter's quality of life and our diabetes management by better control over  insulin ingestion, giving more exact dosages, easy correction for highs, removing needle hassles, and making it easier for her to deal with her diabetes at school. Babies as young as a few weeks old use pumps now, and it's great for kids.

It sounds to me like you are doing a fabulous job - vigilant testing is incredibly important, and it is clear that you are dedicated, loving, and responsible parents. This will get easier, and most importantly, you will get more used to going with the flow of changes. Remember: don't get caught up in one bad test number. Keep testing and correcting, and stay in close contact with your diabetes team as things continue to change and you are finding your way through all this.

All the best -

Mariam

 


(IndyDon) #9

Hilary, My son was diagnosed at two and is now eight.  He has been on syringe shots the entire time.  The first few to several months are the most difficult.  Many, if not most, parents are overwhelmed at first.  You need to learn a lot of information in a short period of time and your child's glucose levels are unpredictable.  I speak with a lot of parents of newly diagnosed children and diabetes is especially tough on parents of toddlers.  It does become easier with experience and as your child is able to provide input for their own care.  But, I don't think it ever becomes easy...just easier.  And, it might not become predictable...just more predictable.   A significant amount of the time blood sugar levels for pre-adolescent children will be above or below their target range.  Try to avoid the lows and don't freak out too much about the highs.  Tracking the numbers with pencil and paper or software can be helpful since you can look at trends and averages.  The A1C test is a very helpful indicator of the overall average of blood sugars over the last several weeks.  For many months after my son was diagnosed he had a lot of readings over 300.  This was especially so after his honeymoon period.  Such readings are not as common now but I bet a week has not gone by that he has not have a few readings over 300.  And, he experiences lows as well.  My son did not start recognizing his lows and highs until he was seven.  He does a good job of recognizing highs and lows now but sometimes he thinks he's high when he's low and vice versa.  And, sometimes he is just fine even though he thinks he may be high or low.  With several years of experience we know better what things will affect his blood sugar.  But, we do a lot of head shaking because we don't know why he is low or high in many instances.  Keep doing your best and hopefully take comfort that there are thousands of parents just like you out there.  If your hospital/Dr/JDRF chapter has a support group I recommend that you give it a try.  My wife and I found much comfort in interacting with other parents. 


(LindaFernandez) #10

One day you will wake up and realize it has all become routine. 

We leveled out when we went to a pump, nine months after diagnosis, and stopped using long acting insulin but some people stay on shots for ever.

Families struggle with the sibling issue, try date night, one parent with the child who doesn't have diabetes.  Let them choose where to go and what to do.  That way diabetes can't interupt.

Hang in there; it really does get easier.  We are almost to five years and it is just second nature now.


(Mariam) #11

Hi again Hilary -

further to dealing with sibling issues - what I eventually did was like a datenight. My non-diabetic daughter does Tae Kwon Do twice a week, and we made it a regular date that after the Monday night class, I would take her out for dinner. Nowhere fancy, but it was just the 2 of us, and she had me all to herself. It made a big difference!

Best, Mariam


(Hilary) #12

I wanted to thank everyone for the words of encouragement! (And sorry for not responding sooner, but we just changed internet providers and we were out of internet for a while!) We've had five days of good numbers and that has made me feel so good! I know now to expect the up and downs, but it sure is nice to have a little break, if only for a few days! And he is no longer making us pry open his fingers for fingersticks. So I guess the message is hang on to the little wins, and keep stong with the daily battle. Thanks again for all the kind words! It helps to know I'm not alone!

Hilary


(Jyll Marie) #13

This is all so well described. When our daughter was first diagnosed (July 2007) I thought our life would never be normal. Like you said, we have learned to accept this as the "New Norm." I think accepting this and going forward, not trying to "control" her diabetes, but "manage" it has helped us the most.

The pump was the best thing that happened to our whole family since diagnosis. Holli is the youngest of four girls. Even though our oldest was married, the 2nd off to college, and only two at home, they all felt the impact. They all have made comments about the extra time and attention that goes into Holli. I believe that all siblings, no matter how many or what age are affected. It is a good sign of a "Family Support System."

You cannot learn too much about this disease. The more knowledge the better support. My favorite book is "Type 1 for Dummy's." I have loaned it to friends so they too can learn some. It is the most practicle book and easiest to understand.

 

Good Luck!


(LPCmom) #14

Our son was diagnosed within a week of his third birthday (September 2007).  My husband is also type one (20 years).  Everything you said sounds so familiar.  Some days just suck!  But, most days are pretty darn good.  And, most nights I don't have to wake up to monitor anymore.  (And, my son stays asleep when I do!)  Sleep cannot be underrated.  And, when I start to have a pity party, I contact my MOP friend (mother of pumper) to vent, which helps.  Find a friend like that!  Ultimately, I am so thankful that my son doesn't have something worse that cannot be treated.  It's all a matter of perspective some days.

I offer a few practical comments below and urge you to stop being so hard on yourself.  Even if you do everything right, it's diabetes.  It's unpredictable with children this age.

  • Our CDE tells us that it's hardest to control BG in the little ones and in puberty.  When kids are growing and changing so fast, it's tough.  The MDs know it and are not on our case to have a super aggressive A1C right now--that comes later as the BG ranges narrow.
  • Our MD is only looking for BG in our range (80-200) 60% of the time for our now four year old.  So, six out of ten tests.  Look at your tests and see what percentage of tests are in range to get a better sense of how well you're doing.
  • Remember, if you have a high, it's not like you want a low to reduce your average BG or your A1C.

You'll start to notice signs of highs and lows.  Someone mentioned skin tone--it and unexpected fatigue can be real cues.  Some temper tantrums are due to diabetes and some are just a fact of life for kids this age.  Just monitor and move on with life. 

My son is starting to ask to be tested.  Funny thing is how hungry he is when he's high--it doesn't seem logical. 

On the Children with Diabetes Website (or someplace else like it) there is a directory of people who can babysit kids with diabetes.  You might ask around about teenagers or older with diabetes who babysit.  What we do is only use college age sitters.  We bring them in when we are home to start off with, then we start to train them on carb counting and diabetes management.  The most important thing is that they know how to treat the lows and the highs.  And, if they make a mistake, the highs are a better mistake (and they learn from it).  The trust evolves.  You are the best teacher when it comes to your child's diabetes!  Go for it.  You and your husband need some time to yourselves.

As my husband manages his diabetes, I can tell you that he absolutely feels his highs and lows and that it is very predictable for him now.  So, hang in there and be gentle with yourselves!

 


(tanyam) #15

How often does everybody test.  My endo was questioning my testing.  She has told us to test eight times right now, I have been doing a few others....trying to gauge her reaction to different situations, etc....I test more at night than I probably should but I figured when she was in the hospital she was tested every 1 to 2 hours so to do it every three hours or so when she doesn't even know it is happening, is that bad?  How fast can the numbers drop at night?  Any idea?  My daughter had a 95 at 2:00, I was worried by mornign it would be really low.  I had to wake her up the next morning and it was 70,  I know that is not terribly low or anything but how much longer before it would have dropped to the 50s.  So far she has no sense of lows....she hasn't had any extreme lows during awake hours and only a couple of lows at night so far but during the night, she doesn't notice them at all.....makes me a nervous wreck.


(sheilapomarico) #16

Hi Hillary,

 My son David was diagnosed at 6 years old. It is very rough in the begining. But I am happy to hear you got on a pump right away, it makes life so much easier. I wish I could tell you the numbers will get more steady, but unfortunatly every child is different and it will take time to see. It really should steady out some once he is over the honeymoon period. With illness you will always go haywire! And as they grow they are constantly adjusting basal rates. But I can promise you if you stay connected with other Mothers and seek a good support system it will get easier!! I found the other Mothers I met through JDRF to be my BEST !!! resource of support. They all know what you are going through. Good Luck.


(Sheri) #17

Hi Hillary

YOU ARE DOING EVERYTHING RIGHT AND NOTHING WRONG, YOUR ACTIONS ARE NOT CREATING THE ROLLERCOASTER RIDE, IT'S JUST THE NATURE OF THE DISEASE, ESPECIALLY WHILE HONEYMOONING!

My heart goes out to you.  My son was diagnosed at age 4, which was 3 years ago.  I have always felt that if it had to happen, that was a perfect age, due to him being able to have self awareness and help us with lows, although never with the highs.  All I can say is...it's a wild ride.  Ups and downs are par for the course and we still check about 10 times a day.  It's the only way to know.  Our little ones are growing and changing so quickly, and since insulin is a hormone, the diabetes can be affected by a simple growth spurt.  You sound like a wonderful mom, I so understand the exhaustion, sadness, guilt over the older sibling being pushed aside.  I have been there, am still there, but my sons are 7 and 13.  

Couple of things  First, our son honeymooned for a very long time, over almost 2 years.  Second, it does get better after honeymooning, but just simple life stuff will create a crazy high, sometimes being upset or stressed will do it!  Emotions seem to be very connectied to our son's blood sugars.  Talk about blaming myself for his ups and downs!!! 

On a positive note, I wish I had considered the use of a continuous glucose monitor in the beginning.  The instrument really gives alot of insight into how your child is trending.  It's not used to treat, but a wonderful tool for the constant worry, for you and your son!  The monitor has a screen and arrows so you both can see if the fluid in his body is measuring a high or low.  Here in Charlotte NC I have heard that the JDRF chapter has one on loaner upon request for a very short time, but a great way to see if you want to make the investment or not.  Let me know if you think you are interested and I will give you more information.  If you feel like I did,  the thought of any more technology is too overwhelming right now, but I cannot recommend enough that this may bring some peace of mind to you, your sons and your husband.

Would be glad to chat on this blog anytime!

wishing you a Wonderful day!

Sheri


(Kristen Farmer) #18

My son caden turned 2 Dec 16, 2008 and was diagnosed on Jan 6th 2009.  I completely understand what you are saying.  His sugar is all over the place as well.  He is out of the honeymoon but still has crazy sugars.  What are you giving him for snacks that he will eat.  It is so hard getting him to eat the right things for snacks because he just wants cookies and his moods are all over the place.  How has the pump been?  I think about it but I still feel he is too young.  Does Leo mess with it a lot? 

I also understand about not leaving him with anyone.  I feel that if I don't give him shots someone else might do it wrong.  Caden tells me now when he is low.  He starts screaming eat and sure enough as soon as I check his sugar it is in the 40- 60 range.  I think that will come with time.  Good Luck and hopefully they will get their sugar regulated. 

Kristen Farmer

 


(stanandkathie) #19

Each person is different so it is hard to tell how fast she would drop to the 50's.  I make sure my daughters bs is over 160 but under 200 before bed and when she wakes up in the morning she is about 80 to 100.  The problem is that since everyone is different, this might not work for your daughter.  It is just something that you will have to learn and adjust with.  It is very confusing but I hope it helps to know there are so many of us that understand where you are coming from.

Kathie


(stanandkathie) #20

tanyam,

How old is your daughter?  My daughter, Destiny, is 5.  She was diagnosed last May.  I am a very over protective mom so I test her a lot also.  I check her about 6 times a day and sometimes at night also.  It depends.  I can usually tell by how she is breathing if her blood sugar is up or down.  One day I was headed to work and my mom was there (I go to work at 6 am).  I got in my car and just had this bad feeling.  I went back inside and tested her and sure enough, her blood sugar was only 60 and she wouldn't have been awake for a couple more hours.  I think that after doing this for a while you just get into a routine and you start to know when things aren't right.  Just my opinion.

Kathie