Hi,
I am terrified. My son, who was diagnosed in July, is ready for his pump and we are starting Jan. 9th.
We have read all the information, met with our Doctor, and bought some pump belts....but i am so scared as he is still so little...anyone have suggestions or stories about their experience?
Thanks, Stephanie
We're still a little hesitant, and it's all in who you talk to.
Someone we know and respect quite a bit - a 48 year-old 30+ year Type 1 with an A1C of 5.5 - didn't care for the pump when he tried it a couple of years ago. Another friend suggested that we wait until our son is in his teens, and for now to teach him about how to live with the disease. Another family we know with a T1 teen said the pump has changed her life and she wouldn't want to live without it.
For some, they find comfort in the level of monitoring and control over how the insulin flows rather than having to inject 4+ times a day. Some people find it easier to get their numbers in control.
We were also worried about what happens if he's on the playground, wrestling with friends, if he leans on it and breaks the pump, etc.? On one hand, there are two active NHL players who play hockey with the pump in their pants, but on the other hand it's $7000 here and it's not covered by our health care plan in Manitoba (yet).
What were your motivations to go to the pump? Whose advice was it under?
I wish you the best and hope you find the answers you are looking for!
Hi Stephanie! My son is 10, diagnosed at 7. He was on the shots for about 1/2 of that time. The pump is WONDERFUL! I was SOOOOOOOOOOOOOOOOOOO scared to put him on it...I have to admit. I'm NOT a person who is good with technology or gadgets or machines of any kind. We have Chase, my son, on the Cosmo pump. It is SOOOO easy! Unlike the pen or syringe that can only give a .50 as the smallest dose, the pump can give a minimum dosage of .05! That way you can pinpoint exactly how much insulin is needed to cover your child's carbs. With the pen or syringe, you have to ROUND up or ROUND down, so you don't cover the carbs as tightly. Does that make sense? We do, on the downside, have a little trouble with my son swimming and sweating in the summer months, so his site won't stay in, and we have been known to change a site as many as 3 or 4 times a day! So we have to go back to the syringe or pen for the summer months. When we do, inevitably, his A1C goes UP about a whole point! BIG difference. It's also so much easier to carry his supplies,and he is able to bolus himself while I give him oral directions on how much, etc. He is still unable to count carbs by himself. ( you know a lot of it is guessing!) How old is your child? I'm sure it's harder when they're younger, but they have to be taught that it's medicine, NOT a toy. I wish you luck, talk to your peds. endo. and see what will be best for your family. We LOVE our Cosmo! Take care, Ginger
Hi Stephanie,
My son was diagnosed at 37 months and started the pump at 40 months old. He is now almost 6 years. We were still in the honeymoon period when he started on the pump.
First of all, the pump is a fantastic and very effective means to control his blood sugars - you can comfort yourself with the fact that you have made a wise decision which will offer you greater control of his blood sugars. Lucas always woke up if we had to give him insulin injections in the middle of the night and now he sleeps right through it. Also, he was so little that we were using diluted insulin which is not as an exact science as one would hope - the pump allows us to use regular insulin. Really little guys also have metabolisms that burn through long acting insulin at different rates...once you get set up on the pump, the basal rates can be fine tuned to match his needs very closely and since it is all short acting, you don't have to worry about it wearing off in less than 24 hours.
All this being said, we had a few months of difficulty when we first started. Be mentally prepared for this so you can stick with it because it is so worth it. The difficulties we had were likely because we got him on the pump so quickly after diagnosis, but he was bouncing up and down quite a bit immediately after going on it. After fine tuning and expertise gained he does great.
Some tips:
find an insertion device that works best for you and your little guy - don't be afraid to ask you doctor if there is another option if you either get kinks or if you son cries when you do it.
Cargo pants! these work great for the pump. I cut a hole inside the pocket just big enough for the clip to go through. I feed the the tubing in the hole and through the leg of his underwear and plug him in. This way there is no exterior tubing to get caught on something when he is climbing or wrestling. He can still pull pants and underwear down for bathroom breaks.
At nighttime we use a baby sock to put the pump in and a diaper pin to pin it inside his PJ's.
swimming - find bathers with a pocket with velcro - once he starts really swimming you can just unplug while he swims( if doc says ok) so he does not go low - one of the great advantages of the pump is you can stop getting the basal temporarily.
Hope that helps! Good Luck
Christine
My son took the shot for 2 years before we went to the pump. Our son is a very active boy. He plays hockey, rides dirt bikes, plays golf and basketball.He just this year even picked up skateboarding! Most pumps have a function to lock keys, so no worries on the buttons. Most companies have a replacement, kind of a insurance plan that they will always replace it if you have it kin of thing. I would not change a thing. it was a scary step. I will not deny that. I also help out the school when the nurse needs time off. At the school a prescholler has a pump and it is worn between his shoulders. He can not reach it if he wanted too.
Having the pump for him is the closest thing to be diabetic free. we give him his insulin from his meter/remote. After checking his blood he is is doing what the rest of the kids are. No more drawing it up and anticipating the poke. Where is it gonna go? Where did I give it last? At night if he needs a fix i just push a couple of buttons. The first week i did lots of bg's though. Now it is just the best thing that happened to us. Good luck and you guys will know when it is the right time.
I totally agree with mismidge's answer. Our daughter was also on shots for 2 years before putting her on the pump at age 4.
The key benefit the pump gave us was freedom. We were slaves to a rigid schedule before with shots: When to eat, when you COULDN'T eat. The invention of fast acting insulin (humalog and novolog) made it easier, but not perfect, for us. The pump made our lives so much easier.
It's certainly a scary change. But it was one change that we feel was worth making.
i am excited but nervous....i just hope he doesn't rip it off or throw his belt....any suggestions?
he is scheduled to start january 6th...how did you introduce it to him? he is wearing his pump pack which he doesn't seem to mind too much right now.
Hi Christine, great suggestions...thank you!
i can't seem to potty train him right now due to the highs and lows with his fsbg. he used to be potty trained before his diagnosis, but he can't help it at times, i know.
how does he act when others question him about his pump? how did you get him to keep it on at first as my little guy sounds about as active as yours?
steph
Hi Ginger, Joey is only 2.5, but i hope he will be more independent as your child as he ages and can understand more about his needs...when was he able to tell you he felt high or low?
how did you first handle the pump start?
thanks for the wonderful advice...i am trying to be positive.
Hi again,
Oh yes, I remember the mostly potty trained and newly diagnosed issue. Think of it as the pleasure of potty training the same child a second time - fun right? He has to learn a whole new set of cues as his body has changed. When he is running higher he may have to go really bad every 20 minutes, when he is running low he may be able to go at a more regular rhythmn only to be high again - kind of hard for a guy who was just getting the whole thing down for the first time to begin with. You have to reset your patience as if you are starting the process for the first time with a new kid. Hopefully he doesn't get frustrated with the whole thing as his body has now made it twice as difficult to figure out than it was before.
Don't worry about him pulling out the pump on purpose - it just goes right back in and there is no insertion device that is so pleasant that he will want to lay still again so you will insert it. ONe time cures them of that. More of a problem is him pulling it out by accident and not telling because he does not want to bother with a site change right then - this happened to Lucas the first week of kindergarten this year.
My experience is that Lucas loves his pump - in fact when he broke it when he was 4 (riding his tricycle with it bouncing on the sidewalk behind him) he insisted on having the disconnected pump in his pocket while we waited the 48 hours for a replacement (choose a company with unconditional replacement - we are on pump 4 - even had a new puppy eat one and never had to pay a cent for replacement). They know the insulin makes them feel better and I guess it is just in most boys genes to like electronic gagets. Which also answers your question re: how he reacts when people ask him about it - he thinks it's cool and so do most little boys - and the fact that nobody else is even allowed to touch it makes it even more awesome.
Christine
Ask you rep about "skin tac" Ethan is way active. We first use iv prep, then skin tac. He swam the whole weekend at the hotel and it did not come off at all. His pump even fell out of his pocket and was hanging just by the tubbing. It stayed. The thing is you need uni-solve to get it off. Very easy though. The uni-solve also removes the tape residue that creates the lines where the adhesives were. As to how Ethan acts when people want to see his pump he is like ya it is cool. He likes the educating part. Little kids seem to be fascinated by the things other kids have but they do not. The benifit of being "pre clique age"! Hehe.
Hi Stephanie,
My daughter was diagnosed at age 4 (she is now 12) and she was on shots for only six months before I demanded she be put on the pump. She has a A1c of 6.1 (sometimes better) and she will tell you she would not live without it. At four, she told everyone that it was like a pager, only better. Kids get creative - her favorite response to people was to launch into a discussion of how the islet cells in her pancreas no longer produced the insulin she needed, so she got to wear this cool electronic thing to give her body what it needed. She is a very active soccer player and has always been into sports. She swam on a swimteam from age 4 to age 9 and the silloutte from Minimed never came off. You will find what works for your son, there are many options out there for you. My personal opinion, don't pretend the disease isn't there but instead accept it and get on with living. Encourage him to let things roll off his shoulders and get out there. Best wishes and hope everything goes well.
I was reading your reply...which pump company is it that you use? It sounds like they are very reliable..would love to hear more.
I am still trying to convince my son that the pump is the way to go..I have showed him pictures and we are trying to make it "cool" like being a "robot", still fearfull...
Thanks
Roxanne
How did you talk your daughter into such a change???? We are trying to talk our 4 year old son into a pump and he is scared...We have shown pictures and have tried to make it "cool"..still a no...
Roxanne
We use animas. They have been perfect! We ran out of sites, Because od self error and Ethan pulling a couple out before we got skin tac. They just overnited them to us.
My name is Julie and my daughter was diagnosed on april 19 2007, her 5th birthday. She started the pump the following Febuary. It was very scary at first. The first thing we did was meet some chilrdren from the JDRF who had thier own pumps. When Kiara saw the other kids with thier pumps she decided she wanted one as well after that we went the pump classes and went at her pace. There is some flaws that come along with the pump but it has been a blessing for my daughter and she loves it!