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Newly Diagnosed - 5 year old with Down Syndrome

Discussion in 'Introductions' started by PIttsburgh Proud, Aug 11, 2011.

  1. PIttsburgh Proud

    PIttsburgh Proud New Member

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    Hello all. Found this website and wondering if anybody out there is like our family. Our 5 year old son was just diagnosed. He also has Down Syndrome and Celiac disease. Wow! Talk about piling on. Have quetions about any experience with the pump? Detecting lows? Anybody??
     
  2. DsMom

    DsMom Approved members

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    Hello and welcome. Sorry you have to be here.:( My son does not have Down's or celiac...I do read a lot of posts in the Parents section that talk about celiac...so someone should chime in sooner or later.

    You might also want to post specific questions about the pump in the Parents section...you'll get the most readers there.

    My son has been pumping for more than a year and a half now. We started when he was 5. Best thing we ever did. For us, it provides more freedom and flexibility, and much more precise control because of the small increments of insulin you can provide.

    As for detecting lows, my son was not really good at that for the first year after dx, but now he is right about 80% of the time. He always says he feels "shaky." For a while, it was his hunger that alerted him. Again, if you post a more specific question...I'm sure you'll get more of the answer that you want.

    This is just the best place for advice and support. You are so not alone...and there are so many people here who will guide you through these difficult first months and provide you with great tips and a shoulder to cry on. We've all been where you are and are here to help. Let us what we can do.:cwds: Look forward to hearing your and your son's story.
     
  3. Nancy in VA

    Nancy in VA Approved members

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    You need to hook up with Holly McCormick - I forget her screen name. She has an older teenager with a form of Downs and Type 1.
     
  4. kgerrick

    kgerrick Approved members

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    Hi and welcome to CWD! Though I am sorry for your sons diagnosis. My daughter was diagnosed May 19th this year so we are new at this too. She is 13 years old though. We don't have experience with a pump yet, because she is not interested in wearing one yet. When she changes her mind then I'll look into it. But we do have experience with lows. She feels them coming on, though a few times she didn't. The lows started happening about 3 weeks into this disease because she was entering into the honeymoon phase. Has anyone told you about the honeymoon phase yet? When they're in honeymoon it means that the remaining part of the pancreas that has not been killed off yet starts to work, so while you are giving insulin the pancreas is making insulin and then it is too much which causes lows. Testing regularly you will start to see a pattern. It is important to remain calm while you are testing them and see that they are low. It can be scary but for their sake you must remain calm. My daughters target range is 80-180. If she is below 80 then we treat for a low by giving her a few glucose tabs or juice at 15 grams carbs then we wait for a minimum of 15 minutes and retest if she has started to go up then she's good but if it is still the same number or lower then we treat again and retest. You will also need to touch base with your endo team to report numbers and they will more than likely lower the insulin doses to decrease the amount of lows. Build a good relationship with your team they should be willing to educate you and support you and your son. It is a lot of trial and error so don't be hard on yourself. This website has been a big help to me since I joined 5/29. There are a lot of parents on here and there are parents with young children like you that you can get advise from! All you have to do is come back here often and post your questions when you have them or post about your frustration and there will always be someone here that can relate completely! No judgements!! Best wishes to you and your family!:)
     
  5. obtainedmist

    obtainedmist Approved members

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    Welcome and so sorry your plate had become even fuller. No question is too silly to ask here since we've all been in your shoes at the beginning.

    About lows...what I noticed when first diagnosed was that Molly would emotionally overreact to a situation and might even begin to cry. The first few lows bring on a bit of a panic feeling, but as you get used to the ups and downs of this, you just go into "let's fix it" mode. Now, she says she just gets a "floaty" or spacey feeling. However, everyone reacts differently to these things.

    We did injections and then used insulin pens for around 3-4 months before transitioning to the pump. The pump has it's own learning curve and you might not really love it until a month or so in...but after that it can be life changing (in a good way for once:rolleyes:). You can test drive some of the pumps to see how your son would like it (that is, use it without insulin, just have it attached to the body for 3 days). The infusion set is what attaches to the skin through a tiny plastic or steel canula around 6mm long. You can go on youtube and see how people insert them. The three main pump manufacturers are Metronic, Animas and the Omnipod (most people call it just the Pod). Metronic and Animas have pumps with thin tubbing that is connected to a cartridge of insulin in the pump on one end, and the infusion set on the other. Most people just tuck the tubbing away so as not to get it caught on things. The Pod is an infusion set and pump all in one which is tubeless and attaches to the skin. The only trouble I've heard with the Pod is that sometimes on the little kids, there aren't as many places to keep it on due to it being larger than an infusion set (which is around 1 1/2 inches). Animas and the Pod have a remote that sends directions to the pump. You and your endo will program the pump with hourly basal insulin (instead of Lantus) and with the remote, you can test the blood and the results will be sent to the pump as well as any dosing orders that you have viewed and OK'd. My daughter likes a remote so that she can be more discrete when dosing and also if she's wearing a dress and can't access her pump easily.
     
    Last edited: Aug 11, 2011
  6. Lisa P.

    Lisa P. Approved members

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    Selah's four but was diagnosed at 18 months.
    I don't know what level of communication your boy has, but I can say that for us we've learned a lot from body language and from watching her face. I can see a potential low, often, in her pallor and demeanor. She also became, when younger, very cuddling and loving when she was low!
    There are some good tools out there, Selah has a continuous glucose monitoring device, a Dexcom CGMS, that you can eventually use to get a rough readout 24/7 of about where his blood sugar level is. That helps a lot.

    Pumping is something many families here have moved to, it may work for you. Some believe families do best if they start pumping immediately, I personally felt that doing MDI for awhile first means I'm very comfortable with several different ways to deliver insulin, and I like my options. So unless you have a particular reason to move to pumping (or just an inclination!) there's no reason you have to move there until you're comfortable.

    I will say that before the CGMS, Selah wasn't able to fully communicate her lows so we did very frequent testing -- we could average 12 to 15 tests a day. Even now, she will tell me she's tired or hungry, but rarely say she's "low". I will say that any time he notes that he's hungry, address it ASAP with a blood sugar test or carbs if you know he's low.

    Glad to meet you, please post any questions any time, we'll all do what we can to give you our best answers!
     
  7. kiwikid

    kiwikid Approved members

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    There is a lady with a nearly 5 yr old boy with both Down Syndrome and Diabetes on the Munted Pancreas site.
    When Rachel was very small she would often just hold out her finger when she felt low.. :cwds:
     
  8. PIttsburgh Proud

    PIttsburgh Proud New Member

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    I feel better already!

    Thanks so much for all ofthe supportive responses! I will certainly look on the other threads as suggested. My son is verbal but rarely tells us when he is not feeling well. We are testing frequently and noticed that a few times that he has been low he is ravenously hungry -- which leads us to test.

    As far as the pump goes, I was wondering if there was anybody who has a kiddo with Down's who has a pump. I just don't know how complicated it is and whether that could be something we could hope for for him some day.

    thanks to all for info and encouragement!!
     
  9. obtainedmist

    obtainedmist Approved members

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    I would pester your endo about it! Don't be afraid to be a squeaky wheel and ask a ton of questions. If the office can't answer you, call up the pump companies and pump :)D) them for info. What I do know is that for now, you could manage all of the dosing remotely with an Animas Ping or the Omnipod. I think there is also a way to "lock" the controls on the pump itself with the Metronic and the Ping.

    If you are thinking about your son managing the pump in the future, I get the feeling that the Metronic pumps have a bit less button pushing. You take your blood sugar (and Metronic does have a wireless connect with one of the glucometers...just don't know which but others will) it sends the reading to the pump, you push a button and it will give you a dose suggestion. You would then push the "act" button and voila! The only sticky thing is that there are times when you don't want to do exactly what the pump says based on past experience or whatever. So, though it's a machine, it's not a brain that can weigh extenuating circumstances.:rolleyes:
     
  10. Ali

    Ali Approved members

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    There is the CGMS device which monitors blood glucose levels 24/7/ helps with detecting lows. Go to the Medtronics site and the Dexcom site on the web and you can learn about pumps and this device/Continuous Glucose Monitor or CGM. Good luck. Ali
     
  11. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    Hello, welcome. I don't think there are any current users on here with kids who have that trifecta, although there was a family that had those three spread out over two kids. Type 1 diabetes is more common in people with Down Syndrome than in the general population, but apparently not enough more common to make them very visible here. On the children with diabetes page that showcases kids with diabetes, there are a few with Down Syndrome.
    Here's one:
    http://www.childrenwithdiabetes.com/kids/d_02_1n9.htm

    The good news is, Down Syndrome does not seem to be a barrier to good blood sugar control- in all of the studies I've read where type 1 diabetics with and without Down Syndrome are compared, those with Down Syndrome have better blood sugar (though they're more likely to have celiac and hypothyroidism). Here's one such study:
    http://www.ncbi.nlm.nih.gov/pubmed/20186386

    Holly's son Morgan doesn't have Down Syndrome- he has a partial trisomy 18 (Edward's Syndrome) with a partial deletion of chromosome 9. He was diagnosed with type 1 diabetes, but I'd say he does not have type 1 diabetes. For one thing, he was able to go off of insulin, and hasn't been on insulin for a while (at least, that's what I understand by Holly's blog). For another thing, he was antibody negative at diagnosis and was in a nonketotic hyperosmolar state. He was on insulin for a while though, and it sort of looked like type 1 diabetes in that he was a child on insulin.
    Here's her profile: http://forums.childrenwithdiabetes.com/member.php?u=3484
     
    Last edited: Aug 16, 2011
  12. Matthew's mommy

    Matthew's mommy New Member

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    Hi, we are the family you are looking for. We too have a 5 year old son with Down syndrome, type 1 Diabetes and he was recently diagnosed with Celiac disease as of Feb 1 of this year. Yes...we have a lot on our plates. We are 3 years into the diabetes as he was diagnosed with that at 27 months old. We have gone back and forth on the idea of a pump for him but still think he is too young and too "crazy" in his play with is 3 yr old sister.
    I would love to connect...not a lot of us out there with the trifecta as my husband and I like to call it :)
     
  13. steph

    steph Approved members

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    welcome to CWD. your local down syndrome association may be a good place to connect as well. Where i live the down syndrome group is much more active than the JDRF group. while the forum may not be able to provide as much specific support as you might like for dealing with all three conditions, the people here can provide a wealth of information on T1D. They have helped me out quite a bit in these first frew months.
     
  14. Jason's mom

    Jason's mom Approved members

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    My son, Jason, is 19 and has Down syndrome, Type 1 diabetes, probable Celiac disease (waiting on biopsy results that they tell us are only a technicality), and Hashimoto's disease.

    I'd love to connect with Pittsburgh Proud and Matthew's Mommy. It's nice to think that I could "talk" with others who understand our entire situation!

    Julie
     
  15. Matthew's mommy

    Matthew's mommy New Member

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    Hi Julie,
    I am new to this posting stuff so I'm am not really sure how this all works. I too would love to connect and talk with someone who understands. Let's connect!
    Tracy
     
  16. Jason's mom

    Jason's mom Approved members

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    Hi Tracy,
    No worries - I'm new to all of this, too. I think I sent you a private message and an email. Take a look and see if you have them. I included my email address there so we can talk offline.
    Julie
     

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