Special Needs pumping untethered

Well, DS has done ok (for him) with the pump start.
He did great at the local water park, keeping the pump on even in the pool. However, he lost his site in the lazy river and that's when the trouble started.

He was only on sterile water, so we waited until we got home to put in a new site. That took a while, he kept saying the new site hurt, so we pulled it and tried another. He fell asleep and all was well overnight. This morning he started complaining about the tubing - that was a surprise to me as I didn't think that would be a problem.

He had tried the omnipod and hated it - too large and the adhesive made his skin red and itchy. When he tried an infusion set, he had no problem. So I thought the tubing was working fine for him.

He has other issues, and those are playing into this - anxiety, sensory problems, etc.

So this morning, he decides he would rather just stick with shots. He's only been pumping for three days at this point I say it's his body and he can choose, but he can see I'm sad at the loss of a way to better control his D. Especially after all the trouble it took to get the pump - three days does not make a good pump test!

(he won't give himself a shot if I'm not around when he eats, so he goes high until I get home, we can only bolus in .5 unit increments with needles, etc)

So we came to a compromise that I hope will work for us. He is going untethered. I put insulin in the pump before supper tonight so he is no longer getting water as a pump bolus then insulin in a needle and I can give smaller increments. We have his basal set at 0 and are giving him his Levemir as normal. I'll call the endo Monday to let them know how we are doing it, and I hope they will support us. I don't know if they support the untethered protocol or not, but at least for now, that seems to be the way we will be doing it. He doesn't have to wear the pump, just attach it for boluses, then take it back off - that makes him happy. The smaller increments for bolusing, ability to use the ping remote as a logbook, and even knowing we won't have to worry about ketones since we are using Levemir make me happy.

Anyone else out there with special needs kids that have tips on helping him pump?

 

Good luck. I know quite a few do the untethered meathod and love it. What works for your son is the main thing and make sure the dr's support that as well. His feelings are the key to successfull pumping.

 

It may pay to leave the pump running just to keep the insulin going through the tubing. We have a friend whose son goes untethered and they leave the end of the tubing in water so it doesn't crystallize at the connection point.

I hope it works for you. :cwds:

 

Oh, thanks so much. I hadn't thought about the insulin crystalizing. I do keep the end covered - he is using an inset 30 right now and they come with a cover for the end because the tubing is in a separate pack than the inserter/infusion set. Do you think that would work to keep the insulin from blocking the set?

 

My son had similar issues with pumps. Hated omnipod and also did not like animas because had some site issues and pump falling off at night and ketones so did not use any pump for about 2 years. Last summer after being a counselor at a d camp he came home wanting to wear his pump. He was the odd man out on shots and I also think he saw how much easier it is bolusing with the pump. The only thing he said was I am not wearing it at night and I want to take it off whenever I want so I am staying on Lantus. It has been working great. Because he is very active and plays 3 sports in HS he takes his pump off a lot. I really never worry about crystalization because he always keeps a very low basal going even if it is off. I actually haven't even thought about it until I read your responses to the post. Sometimes after a long sleep I do think that the insertion site may clog a little but a good bolus pushes it through. Last week he said I am not going to wear my pump any more. I am going back to shots. I said nothing and the next day he said this is a pain and put the pump back on. Good luck.

 

Sounds like you found a good solution. This is the reason that I wish that they would let the parent decide whether or not to do insulin right from the start though. When you do a saline trial, you cannot appreciate all of the great things about a pump. I knew that would be a problem for us, so was very glad when the trainer decided that I knew everything that I needed to know and didn't need to practice for days. My daughter was sold immediately, even though we did have some problems keeping the sites on at first.

 

Yea, we are actually supposed to still be on water but I put Novolog in it Saturday night. It's crazy to have a week of nothing but the downside to both MDI and pumping! He just can't handle it.

 

I agree - we went live with insulin - I did the saline trial on myself to learn how to work it - but William was 26 months old then.

The untethered sounds like a great approach - it is your decision to make and the doctor would have to have some very good reasons to not agree with that. It is the safest in some ways - the person always has the background insulin working even if the pump stops - DKA is less likely I've heard.

We MUST use Skin Tac to put on sites if he goes into the water or they come right off. We use Unisolve to remove the sites. William uses a Rapid D - those are great sets - steel needle and no kinking.

 

I'm going to get some Contact Detach samples next week - I hope they will help him out. We did put Skin Tac under the site he lost - I should have put tegaderm over it - I had some but thought the Skin Tac would be enough.

I wish I had thought of just doing the saline trial on myself! I'm wearing an infusion set right now - keep forgetting to take off the one I had to put on before DS would try it (inset 30)

We've worked up a bribe to get him pumping full time - a video game after he has been pumping for one week, then one more game after another week. I figure if we can get two solid weeks in and he still wants to go untethered, that is ok by me. I really do like the safety of having the Levemir on board, but it is kind of a pain to connect every time he eats.

 

you have to do what works best for you!!!

I don't have a special needs child, so I don't know how that comes in to play.

I can tell you that we do Lantus for about 75% of his basal and he gets thr rest through the pump. Its just evolved for us from last summer when his sites kept falling off in the water.

My endo tried to tell me that it was over kill, I told him I was concerned bout ketones coming on fast when his sets kept coming out, and that I had no problem giving the shots every day. Works for US, although I can see where it wouldn't for others.