wondering about a child

[gordiesmom]

I have babysit a little girl for almost two and a half years.  When first brought to me she had failure to thrive.  Later on she developed seizures and was put on pheno barbitol  She is now off of the pheno barbitol and seems to be doing okay as far as the seizures go. But she is still very skinny for two and a half.  I have one year olds here that way more then she does.

But my question is a smell that I notice coming from her.  At frist I couldnt understand what smelled but I think it is her breath or possibly even coming from her skin.  It is a horrible sweet smell.  Her parents take good care of her...baths, brush teeth, etc but the smell is still there.

When she was an infant she was tested for all sorts of things because of the seizures and the failur to thrive so I am wondering if she was tested for diabetis.  She was tested for celiac disease and I think there was one antibody that was slightly high but I cannot remember which one it is.

She has a large appitite and is always eating but hardly gains a pound.  I am wondering if maybe she might have Diabetis one.

Any input would be appreciated.  I have not approached her parents on my suspicians but this smell is NOT normal.

Bet

[JDRF-Team-SS]

Hi gordiesmom,

First, I need to tell you that I am not a medical professional, I am simply a volunteer and mother of a child living with type 1 diabetes.  Any advice / input I give you is based solely on knowledge obtained through my personal experience.  My son was diagnosed over 6-1/2 yrs. ago at the age of 3.  My sister also has type 1 and was diagnosed over 8-1/2 yrs. ago at the age of 24.

Signs of High Blood Sugar include:

- hunger
- extreme thirst
- frequent urination / large amounts of urine
- weight loss

(These are only a few of the symptoms.)

I feel that the smell could be keytones.
SEE BELOW:

ACETONE
A chemical substance (one of the keytones) with a sweet smell that develops in the body when diabetes is poorly controlled or not yet diagnosed.  (I found this on the Internet.)

Right before my son was diagnosed, he was eating like there was no tomorrow and he lost weight.  When I see pictures of him now, from the time period right before he was diagnosed, I think, how did I not see how skinny he was?  But because I was with him everyday, I did not notice the weight loss.  I did, however, notice the EXTREME THIRST and HUNGER.  

I would definitely approach her parents.  Are you comfortable with them to bring it up?  Are you unsure how to go about it?

I just feel that the symptoms that you explained are very suspicious.  Please do not let this go.  It is very smart of you to notice these things and great that you posted here.  

I am most certain you will be receiving comments from others including some of the other volunteers who are VERY knowledgeable on the disease and would have a tasteful way for you to express your concern to her parents.  You sound like a very caring, in-tuned babysitter and this little one is lucky to have you.
Warm Regards,

SS

[JDRF-Team-LRS]

That little one is lucky you're paying attention.  I wonder if her parents have noticed the odor?  I would urge you to tell her parents right away and to urge them to have their child checked.  Talk to the parents today, even if you have to call them at home.  If their child does have diabetes, it will not get better without intervention, and can get much much worse & scarier.

If the smell you notice is from ketones (a byproduct of what happens when diabetics don't get enough insulin & begin to break down our body fat/muscle for fuel), it will also show up in her urine.  Sugar will also spill into urine if it's high enough in the blood.  Both can be tested with urine-test strips available without Rx.

Neither of those tests, however, is a good diagnostic test for diabetes but if both are negative or both are positive, it does provide the doctor with more information with which to make a diagnosis.  If the child were mine, I would be on the phone with the pediatrician now.

[gordiesmom]

Today when her father picked her up, he said "MY GOODNESS YOUR BREATH IS HORRIBLE!!" So I thought here is my window of opportunity to discuss it with him.  I asked him if he ever notices a foul fermented fruit odor in her breath and he said occasionally it did smell funny.  That was all that was said as she was awakened from her nap and a bit on the grouchy side.

Now I have heard that diabetes makes some people tired and listless.  This is not the case with this child.  Actually she is very hyperactive and also can be very ornory at times. VERY ORNORY!

She has a huge appitite but we way below normal weight for her age.  Like I said, she has had alot of tests including one for celiac disease.  I do remember that some of her results were not right. antibodies I think, but nothing came of it.

Her breath was so bad today that the whole room she was in I could smell it later when I went into the room.

My neice has a step child with diabetes and she said I could borrow some test strips to stick in her diaper and see what happens.  Maybe I will do that and see if anything comes out abnormal.  But I dont know how to approach the parents on this.  I am not a doctor so this is all speculation, but I do feel that there is something not right with this child.  

Thanks!

Bet

[JDRF Volunteer WAK]

I am the mom of  type one 9 year old.  I can tellyou tht whenmy daughter is too high oir too low she also gets very onory.

[wilsons]

Please do not wait to share your thoughts with the childs family, EVERY minute counts.  So what if you happen to be wrong, atleast you cared enough to mention them, but just think you may be right and the sooner the child receives treatment the better the child will be.  If you wait to long, it could be to late.

[gordiesmom]

To all of you that have responded.  I mentioned it to the father yesterday and all he said to me was that she sleeps with her mouth open and he thinks that is why she has the horrible breath.  I completely disagree!!!  I mentioned to him about the sweet smell, but he didnt seem concerned.  Later on in the evening I called to talk to the mother but she was out.

Today I did talk to the mother and told her that I thought the sweet smell was odd.  I did ask her when she was tested if she was ever tested for diabetes and she said she wasnt sure.  She was tested for celiac and some other metabolic disease, but she did say that some test regarding the PANCREAS was abnormal.  Now another red flag has just risen in my mind!!!!

I don't see any abnormal thirst or urintation though.  Actually, it is hard to get her to drink alot.  She seems to have alot of horribly smelly bm's though.

I weighed her today and I got 16 pounds.  I also weight two one year olds.  A boy who just turned one and he weighs 20 pounds and a little girl who turned one in October who weighes 21 pounds.

Another thing I find with her is she is so hyperactive and also can get very touchy and moody.  Lately she doesnt want to have anyone touch her or evenh have clothes on.  She keeps taking all her clothes off at nap time. AND I MEAN ALL OF THEM including her diaper!  It seems like she just never stops!  

Hopefully I will get those test strips this weekend.

Thanks for responding

Bet

[hla123]

I just read your comments and the girls symptoms jumped out at me. My son is very tiny and was not thriving the doctor did some tests for cystic frybosis, he turned out to be fine. The symptoms are not gaining weight and sweet smelling skin. She needs to be tested, if you kiss her skin does it tast salty? I hope everything works out ok.