Large Ketones!!!

[EmmasMom]

Emma has a cold, she's been sniffling for a week. When she's gets sick she doesn't eat much. I've been testing her ketones regularly even though her blood sugars are normal because she tends to make ketones very easily. Yesterday she was .8 on her Xtra meter, and moderate in urine when she woke up and it took a couple of hours to clear them. The only thing I could get her to eat were raisins, which are luckily full of carbs.
This morning I could smell the ketones on her breath, I tested and got 2.2:eek: on the meter. OMG!! I have no idea why she's doing this, she's not eating a lot, but she's eating some and drinking milk. Her basals are normal, she's just not getting much bolus insulin.
I'm waiting for the endo to call me. I'm not sure what he'll say... She has done this several times in the past year and has always needed IV dextrose to help clear the ketones. I'm hoping and praying that I can fix it myself. :(

[pookas]

We had to do the dextrose IV thing last May when Hunter had a stomach virus and couldn't keep anything down. Will she drink or sip water to help flush them? What about juice so you could giver her more insulin? How are her numbers? I hope you can get through it w/out being admitted. Good Luck!

[BrendaK]

2.2 on the Precision Xtra is enough to induce Panic!!! Are her blood sugars normal? That does seem really weird since she's eating at least some and not throwing up or anything. I really hope you don't have an ER visit today. Could you give her the mini glucagon injections so you can give her extra insulin if she's not eating much? I've never done that myself unless Carson is vomiting. I wish I could help more -- your family is in our prayers today especially!!!

[Mary Lou]

I'm so sorry to hear that, Amy. Hopefully, there's just a concentration first thing in the morning, and the keytone numbers will come down through the day. Still....it's pretty scary. I hope you don't need and IV...

[EmmasMom]

Her blood sugar was 260 when she woke up, so high, but not crazy high, she was 160 at midnight. Her blood sugars have been pretty normal, but usually when this happens her numbers start to drop because of the lack of food in her system. I'm about to test again.
She is drinking for me, but only milk. She wont touch anything else. At least she's not throwing up... knock on wood.:confused:

Of course there's an endocrinology meeting this morning so it's taking them forever to call me.:mad:

[selketine]

Sorry to hear Amy - will she drink anything like soda or juice - some drink with carbs? Even chocolate milk has more carbs.

The day after we got home from the hospital after William was dx'd (he was 26 months at the time) we were still on regular insulin and NPH and had given him his shot of regular in the morning for breakfast - only to figure out that he was sick and wasn't going to eat :eek: Gosh I remember my husband and I following him around the house - finally resorting to spoonfuls of sugar. Any port in a storm I guess;)

I hope she is better soon.

[EmmasMom]

On days like this I resort to a bottle, yes I said it... I gave my 2 year-old a bottle today :o. After refusing anything from a cup all morning, she drank almost 20 oz of milk out of a bottle. She kept asking for more, so I happily refilled it twice. She won't drink chocolate milk or juice, so I just have to give as much regular milk as I can.
I'm so glad I never threw them out, they are priceless when she refuses to eat or drink anything else. They've come in handy during severe lows too. Anything that saves her from a day, (or days) at the hospital with an IV, (which usually takes several attempts), is worth hanging on to!
Her ketones are down to .5 now, so I hope we're in the clear. As long as she'll keep drinking I think she'll be OK.
BTW my endo's office still hasn't called. I'm furious!!!:mad: Calling about a "crisis" is pretty useless if they don't call you back for 3.5 hours. I've left two messages and a third time I was on hold for 10 minutes and finally hung up. It's a good thing I know what to do, because if I had to count on their guidance for everything we'd be in trouble.

[hartpukas]

Yikes! You are so prepared as it sounds. Once the endo calls you may have better direction. Hang in there and keep us posted. We are thinking of you guys :(

Oh, what about sugar free or regular popsicles (depending on her bg's) - to keep her hydrated?

[jeep_bluetj]

Wow... I hope you let them know that 4 hours wait is not exactly acceptable.

You can always throw a few spoonfuls of sugar in the milk too. (BTDT) Unless she will refuse based on the taste.

[sheila]

Hope Emma feels better soon.

[zimbie45]

Amy
SOrry emmas sick... How are you hanging in there??? We have had same problem befor that you are normal #'s High ketones.. they still refer them to starvation ketones since they are not getting same amount of insulin as befor.. We also had them with lows and sick.. for that we had to do a mini glucogon shot, just to get #'s up them give insulin for hte HIGH number to make ketones go away.. Hang in there This darn sniffly cold is reeking havic everywhere...

[hrermgr]

Oh my goodness! I would be freaking out! Amy, good idea with the bottle. I will have to remember this if it happens to Teagan. Let us know what the endo says--we're all here for you!

[wendyc]

I hope Emma is feeling better soon. So what if you are using a bottle, I wish I had one last year, it probably would have saved us a visit to the ER. So, tell Super Nanny to kiss off! We gotta do what we gotta do! When Abby is low, we still use the sippy cup the hospital gave her when she was admitted. It's a definite comfort thing.

Please tell your doc that the time they made you wait was beyond unacceptable. Abby had a reading of 485 last week, and they made me hold while they went and FOUND someone for me to talk to. Maybe they need to be reminded of how quickly DKA sets in...

You handle things so well. Hang in there, and we're all pulling for you guys.
In our prayers...
Wendy

[hold48398]

Amy, you are sucha great mother! Emma is a lucky little girl. Glad to hear things are improving!

[EmmasMom]

She seems to feel much better now and ketones are almost gone,(.3). I'll test for ketones when I test her at midnight and try to stay "ahead of the game" tonight. She's breaking out in a rash on her chest and face now... :eek: :( :mad: What Else!!! She just got over a bad case of measles, (caused by her MMR... seriously) and she still has a bizarre rash that no one can figure out on one side of her body. I'm going to call her Pedi tomorrow and ask for a dermatology consult and insist that we do the testing for JRA too. She has so many symptoms; limping and stiff joints, unexplained rashes, swollen lymph nodes. I'm tired of this "wait and see" attitude he has about it. He doesn't think I need anything else to worry about, I just want to know whats going on.

Oh, and the endo nurse finally called just before noon. She was very upset that she hadn't gotten my message. She gave me the back line numbers to the nurses desk and the endo's secretary. That way I can always get someone quickly.

Thank you all for your concern and suggestions!!!

[wendyc]

Hang in there Amy!
Glad to hear things are getting better. Keeping fingers crossed it isn't JRA, what more is God going to test you with?

Hope you can get a little rest tonight.

[Kelly]

Poor Emma! I hope they clear up real soon.
When Anastacia got sick, we checked her ketones... 1.1... we took her to the hospital cause she really was unwell, and by the time we got there 1 hour later her ketones read... HI... meaning above 6.6! We have been told that if she is vomiting/ or looks just plain ill with Ketones, even small ketones we are to call the hospital and her endo will more than likely organise for us to get an Ambulance so she can get in there fast and get on an IV to try and stop this happening again and prevent DKA.
Ketones build so quickly in little kiddies. Big Hugs to you and Emma.

[pookas]

You said earlier that she had the sniffles, etc. Could it be strep [Scarlet Fever]? Any fever? Both my kids have had Scarlet Fever. It's strep w/ a red bumpy rash that can start on the abdomen and/or face/neck. We think that's the virus that triggered Hunter's D.

[EmmasMom]

You said earlier that she had the sniffles, etc. Could it be strep [Scarlet Fever]? Any fever? Both my kids have had Scarlet Fever. It's strep w/ a red bumpy rash that can start on the abdomen and/or face/neck. We think that's the virus that triggered Hunter's D.

She really only seems mildly sick, of course that's how it's been almost every time she's ended up in the hospital.:confused: Her only symptom is the runny nose, and of course the lack of appetite. She has had a low grade fever, but nothing above 99.5. I'll be sure to ask her pedi about it in the morning!!

[EmmasMom]

Well, at 2:30 am she was 325 with 1.6 ketones.:confused: I just don't get it. I gave her a correction and water, and now (3:45 am) she's down to 265 and .5 ketones. Her urine ketones are still moderate, but I know the blood is more accurate.
Do you find that you get a rapid drop in blood ketones after giving insulin? I'm amazed that they can go from large to small in an hour, but that seems to be norm for her. The blood ketone instructions say to seek medical attention if you're over 1.5 and 300+ blood sugar, but I know from experience that as long as I can give insulin she'll be down significantly in an hour. We actually went straight to the ER one day because we got a 3.0 reading, :eek: :eek: (she was sick and refusing to eat), by the time we waited in the lobby for an hour, feeding her skittles and giving extra insulin, she was down to 0.3, so we just went home. (of course she ended up being admitted the next day because she still wouldn't eat) Ugh!!!

I just offered her milk and a variety of things she normally likes to eat but she refused to touch any of it, even a cookie. I was hoping to give her extra insulin before I put her back to bed, but no luck. I really hope she'll eat in the morning.:( I'm willing to try the mini glucagon, but I know that's only a very temporary fix.

I'm so tired of D!!!! It's 4 am and I'm going to try to sleep for 2 hours. Wish me luck!

[Kelly]

You poor thing! Try and get a coupla hours sleep. I hope tomorrow is easier for you. (((HUGS)))

[momof2]

. She's breaking out in a rash on her chest and face now... :eek: :( :mad: and she still has a bizarre rash that no one can figure out on one side of her body.

Hi Amy

When Ben had an unexplained rash, the docs just kept saying it was a 'virus'. It turned out to be 'Urticaria' (Hives) which is normally associated with food allergies. After eliminating all sorts of foods, we were still no wiser on the cause of the rash - it wasn't a food allergy. The rash went on for 2-3 weeks. Could this be a possibility?

Consequently 2 months later Ben was dx'd with d. We think the virus triggered it.

Good luck, you're doing a great job, hope things settle down for you soon.
:cwds:

[BrendaK]

Do you find that you get a rapid drop in blood ketones after giving insulin?

Yes, absolutely. Carson has been in the 2 ish range with the Xtra monitor before. We've been all packed to go to the ER and within 20 or 30 minutes of giving insulin the ketones are completely gone. The ketones can also develop just as quickly -- especially when Carson has the stomach flu.

That's the main reason I like the mini-glucagon shots when he has the stomach bug. If I can just give him a little insulin after the glucagon, the ketones usually go away really fast.

Did you say Emma has an appointment with her pedi today? I hope you're getting some sleep before!! You have got to be exhausted.

[hartpukas]

Good luck today with Emma ~ I hope the new day brings some answers or at least a break in the crazy D cycle. It can be so very frustrating and I am sorry it gets like that for all of us here. As if raising a toddler is not hard enough, ugh! But, you are one of the most diligent and on top of it mom's, Emma was given to you for that exact reason - you are an angel of a mom! Positive energy being sent your way...:cwds:

[HB1]

A few weeks ago I couldn't eat due to a tooth abscess (could barely handle even water touching it, and this was during the 36 degree London heatwave too!) I was showing ketones, and this is the advice my doctor gave me.

1) If you aren't eating, you will get ketones. Non-Ds will as well. Try to take a little sugar in water or sugared drink if nothing else. This will bring the ketones down. Try to drink plenty of fluid anyway.

2) Keep an eye on the blood sugars. Test every hour while awake. If they go above 10mmol (sorry no idea in US measurements, can anyone help?) take 2 units of Humalog (or whatever your little'un takes as a fast-acting) and be even more vigilant with the blood tests.

3) If the blood sugars are fine, then let her sleep as normal and test again when she wakes up. If the blood sugars are normal, then ketones are not harmful. (Of course if your daughter is prone to overnight highs, ignore this point and do as you feel is right.)

Hope that helps.

[AmyMcCracken]

Amy - I'm so sorry you are having such a rough time. You are doing an AMAZING job with Emma. I don't have much to offer other than support. I hope Emma is feeling better soon. I think the dermatology consult is a good idea. I'll be thinking good thoughts for your family.

[EmmasMom]

Hi Amy

When Ben had an unexplained rash, the docs just kept saying it was a 'virus'. It turned out to be 'Urticaria' (Hives) which is normally associated with food allergies. After eliminating all sorts of foods, we were still no wiser on the cause of the rash - it wasn't a food allergy. The rash went on for 2-3 weeks. Could this be a possibility?

Consequently 2 months later Ben was dx'd with d. We think the virus triggered it.

Good luck, you're doing a great job, hope things settle down for you soon.
:cwds:

The pedi said the rash on her side is "Unilateral Asymmetric Exanthem of Childhood". Which simply means a weird rash kids get one side of their body. He said the cause is unknown, but they think it could be an unusual reaction to a virus, but they don't know what virus. It's been there for about 8 weeks now. It isn't red anymore and it doesn't look like any allergy I've seen, it's just hundreds of tiny little bumps. It's easier to feel than it is to see now. Who knows...
I'm taking her in tomorrow morning and he's going to do more lab work and try to figure some of this stuff out.
We're supposed to be leaving town Friday morning for a much needed mountain getaway. I guess we'll just have to see how it goes. There's no way I can take her to remote mountain resort, (an hour from Taos, NM) if she's having large ketones every night.

Boo Hoo, I'm just having one big pity party lately!!:D LOL. I don't mean to be so whiny!

[aidensmom23]

Whine away;) That's what we are all here for. I really hope you don't have to miss your vacation.

[sheila]

I hope everything works out in time for your vacation.

[Brensdad]

A few weeks ago I couldn't eat due to a tooth abscess (could barely handle even water touching it, and this was during the 36 degree London heatwave too!) I was showing ketones, and this is the advice my doctor gave me.

1) If you aren't eating, you will get ketones. Non-Ds will as well. Try to take a little sugar in water or sugared drink if nothing else. This will bring the ketones down. Try to drink plenty of fluid anyway.

2) Keep an eye on the blood sugars. Test every hour while awake. If they go above 10mmol (sorry no idea in US measurements, can anyone help?) take 2 units of Humalog (or whatever your little'un takes as a fast-acting) and be even more vigilant with the blood tests.

3) If the blood sugars are fine, then let her sleep as normal and test again when she wakes up. If the blood sugars are normal, then ketones are not harmful. (Of course if your daughter is prone to overnight highs, ignore this point and do as you feel is right.)

Hope that helps.


Spoken like someone who doesn't have a little one with D...

[pookas]

BTW, Hunter also had a rash like that when he had Coxsackie at age 2-1/2. With that and Scarlet Fever the rash starts out red and it feels like sandpaper. And why couldn't the doc see her today? That just doesn't seem right, especially w/ the D problems on top of it all.

[EmmasMom]

They close at noon on Wednesday, and of course the nurse didn't return my call until 11:00, and they could no longer work her in. It never fails.
The pedi did say the other rash could've been caused by Coxsakie, but she never had any symptoms. Of course it would've been 2-3 months ago and it should be gone by now. The new rash is very different. It looks like teeny tiny red pimples in clusters.:confused: Some on her cheeks, some on her chest, and a few scattered around on her body. I've never seen anything exactly like it.
She's still not eating much of anything, but her blood sugars are starting to climb. At least I can give the extra insulin she needs now.:rolleyes: If we can just get through the night w/o mod-large ketones I'll be thrilled.

[lisamomtotwins]

Amy, I am just seeing this, how is everything? How is Emma? I really havnt had any experience with starvation keytones. i hope things are getting better.

Lisa

[bkfkmc]

Come on, Brensdad...

"Spoken like someone who doesn't have a little one with D..."

It seems like HB1 was really trying to offer help. HB1 just signed on this month and probably isn't familiar with Emma's history. I don't know anything about HB1 or whether they have a child with D or not. I personally don't have experience with an infant or toddler with D, as my child was 5 at diagnosis. I do have a daughter (non-d) who is literally the same age as Emma (same b-day) and I have thought of my daughter and tried to imagine your experiences many times while reading Amy's posts. I can't imagine the challenges you face.
I really like this forum and visit several times a day because of the support here and knowing we are all in the same boat. I have learned SO MUCH from so many people here, Amy being one of them. I just hope this continues to be a "safe" place to post and share because for many of us this is the only place where I feel like somebody else truly understands.

I hope Emma has a better night and gets straightened out very soon.

[Kelly]

How is Emma doing today? Been thinking of you guys.

[EmmasMom]

She is much better today! She woke up with only a trace of ketones and is eating a little better. She still has a runny nose and low grade fever, but overall things are improving.:)
He did a ton of lab work in hopes of finding a cause for her limping and enlarged lymph nodes, and rashes. He warned us about the slim possibility of Lupus, and talked to us about where we would need to go if she needed a pediatric rheumatologist, (there are very few of them in the country). Ugh!! But most of the labs were done this afternoon and he called with very good news. So far everything is perfect and she has no signs of chronic inflammation, so rheumatoid is unlikely. The other lab, (ANA) will be done on Tuesday and will show if she has any active Autoimmune attack going on in her body. So far so good. Even her blood sugar was a perfect 112, (makes me wonder if they got the right blood, ;) LOL!). He referred her to an ophthalmologist, because eye inflammation can be a sign of JRA, and other similar issues. Has anyone ever had to have their 2 year-olds eyes dilated? Yikes! This is going to be interesting. He also wants her to see an orthopedist for a second opinion. (My God how many doctors can one kid have!:rolleyes:)
She was such a trooper. She sat perfectly still and watched while they filled the 5 tubes of blood. She didn't even flinch when they stuck her, (and the girl missed and had to move the needle around). I was grateful that she took it so well, but it also made me sad that she's so used to being poked.:( Our poor babies don't even know how abused they are.

We're off to the mountains tomorrow, so I hope it all goes well. I'm a little nervous, but now that ketones aren't a big problem I think she'll be fine. Wish us luck!!

[Kelly]

I'm so glad Emma is doing better. I kwym about the amount of Dr's... Anastacia has been in hospital and seen more Dr's then me and hubby put together... and she is only one year old. Makes you wonder why these innocent babies are plagued with such ill health.
Anyways, enjoy the mountians. :D

[Ben'sMommy]

Amy,
I've only just seen the thread. I'm glad things are improving and just wanted to tell you a few of my experiences.

90% of the time when Ben gets an infection of any sort it is accompanied by a rash. It usually is the first thing to appear and the last thing to disappear during illness. Even if he just has a cold he will ususally have a rash.

My nephew who is 4 and has no health issues has had a rash all over his torso since he was a baby. It's not very visible but feels coarse and bumpy. Sounds very similar to how you described Emma's rash.

As for being checked for lupus, PLEASE keep me updated as my sister has it (both forms) and I'm concerned about Emma.

Let me know how the little princess is doing. Poor little angel is having it rough.

xxx

[HB1]

Brensdad:

"Spoken like someone who doesn't have a little one with D..."

I'd really like to know where this comes from, and for what reason exactly am I being attacked here?

No I don't have a child with diabetes. Or any children for that matter. Am I being lambasted for being a non-parent?

I have diabetes, have done since age 5. So I WAS a little one with diabetes. So was my sister, diagnosed at the same age 3 years later. My parents brought up two diabetic children and when I had to control my own diabetes I drew heavily on the expertise my parents had from when they were in control of the diabetes care.

The advice I posted was given by my doctor, a few months ago when I was unwell, unable to eat and showing ketones. This worked very well for me and quite probably would for the original poster's child too.

Above all I wanted to offer support and reassurance to the original poster. They were obviously upset at their child's being ill and I was trying to reassure them that, what with the facts they had posted, their child's diabetes could be managed in this situation. Yes - diabetes makes any-old-illness much more complicated, but children will get unwell and they do get better again. Diabetes just requires a little extra vigilance on sick-days.

I'm interested to know why advice coming from someone who has had diabetes for 20 years (my diagnosis anniversary is today, in fact) is any the less valid than that of a parent of a diabetic child, who, with all respect, may have only been dealing with diabetes for a couple of years? (I'm certainly not saying that my advice should be taken as MORE valid either - there's a place for everyone's advice and expertise.)

More to the point, since you obviously are a parent of a little one with d, what would you do differently to what I suggested? (I'm interested to know for next time I'm unwell - no harm in having a few strategies is there?)

[Pammers]

Amy -

I'm so sorry about Emma. I want to tell you about Joey's brother and perhaps it will help you:

A year and a half ago, Zack was in an overcrowded class and strep kept getting passed around. By spring, he had had it 4 times and had enlarged tonsils that we all determined he needed removed (he kept getting sick and couldn't breathe in his sleep). At the SAME TIME, he developed severe joint pain for which we had a rheumatologist rule out JRA through bloodwork and xrays. However, once his tonsils were removed and the strep infection cleared, his painful joints disappeared. I believe it was reactive arthritis caused by the chronic strep infection.

Strep can cause ALL of the symptoms (fever, swollen lymph nodes, rash, joint pain)that you have described Emma as having and I hope you will pursue this with your doctor (of you haven't already done so).

Here's a link but there are thousands more to Google, or whatever:

https://www.healthatoz.com/healthatoz/Atoz/ency/strep_throat.jsp

[pookas]

Amy, I agree w/ Pam. Did the doc do a strep swab? It only takes a few minutes if they can do the results in office.

[bkfkmc]

My daughter (non-d) did complain of joint pain for a long time and I took her to the doctor. They did blood work to investigate (thinking possibly JRA) and found an untreated strep infection. However, she never had a rash associated with it. I'm sure not every case manifests itself in the same way. I would think the blood work that they have done would have revealed this if there was a strep infection though. My daughter's Dr. noticed this first thing and prescribed an antibiotic. I hope it works out to be something that simple for little Emma.

[BrendaK]

A few weeks ago I couldn't eat due to a tooth abscess (could barely handle even water touching it, and this was during the 36 degree London heatwave too!) I was showing ketones, and this is the advice my doctor gave me.

1) If you aren't eating, you will get ketones. Non-Ds will as well. Try to take a little sugar in water or sugared drink if nothing else. This will bring the ketones down. Try to drink plenty of fluid anyway.

2) Keep an eye on the blood sugars. Test every hour while awake. If they go above 10mmol (sorry no idea in US measurements, can anyone help?) take 2 units of Humalog (or whatever your little'un takes as a fast-acting) and be even more vigilant with the blood tests.

3) If the blood sugars are fine, then let her sleep as normal and test again when she wakes up. If the blood sugars are normal, then ketones are not harmful. (Of course if your daughter is prone to overnight highs, ignore this point and do as you feel is right.)

Hope that helps.

There are several points in your suggestion that I think Brensdad was referring to. (Hope you don't mind if I respond, Brensdad, because I agreed with your post too!)

When you tell a parent of a diabetic baby to keep an eye on the blood sugars and to test every hour, that is an understatement at the least. Blood sugars can swing 400 points up or down in a baby within sometimes 20 minutes. Sick babies can be especially unpredictable When Carson was a baby, taking 2 units of Humalog would have killed him.

Also, when you said "if blood sugars are fine, let her sleep as normal and test when she wakes up"... again, the parent of a sick diabetic baby can never sleep as normal!!! She could be dead when she wakes up. We still have to check Carson once every night and he is 6. Sometimes when he was sick as a baby we had to check him every hour all night long, sometimes even more.

That's great you have been taking care of your diabetes for 20 years!! But even being diagnosed at 5 years old is COMPLETELY different than having a diabetic baby/toddler.

Emma's parents do more than anyone possible could in managing her diabetes. You gave advice that would be more appropriate for an adult diabetic. Diabetic babies are SOOOO different to care for than adults and even school-age kids. You also gave advice that could be life-threatening if it was followed. I believe that's what Brensdad was referring to.

[Pammers]

BTW, Amy, I wanted to also let you know that I too used the bottle when necessary to get fluids and carbs into Joey when he was sick. And I did it until he was 3 and a half - so if anybody gets the award for "not following pediatric guidelines" its me. :o

I think you have a way to go before you catch up. ;)

[selketine]

More to the point, since you obviously are a parent of a little one with d, what would you do differently to what I suggested? (I'm interested to know for next time I'm unwell - no harm in having a few strategies is there?)

William got diabetes at 26 months so BTdoingT. I think your advice was fine and helpful and I appreciate getting advice from type 1's. Sometimes getting the perspective of a long timer is an eye opener.

I think we all have to keep in mind that whatever advice we offer or read has to be put in individual context for our kids or ourselves, etc. Babies and toddlers are different than elementary age kids who are different than teenagers. I still appreciate advice from those who never had a little kid with diabetes - sometimes with modifications for our situation it works out rather well. I would suggest that no one base insulin doses or make drastic changes based on something posted here - but we all know that right?;)

[monkey97]

Phillip had to have his eyes dilated twice. It was before he was dxd so i don't know how it would affect that. He was fine with it, I just couldn't look at his face for a few hours cos the huge irises made me get dizzy. The eye specialist warned me about this.

[Kelly]

Quote:
Originally Posted by HB1

More to the point, since you obviously are a parent of a little one with d, what would you do differently to what I suggested? (I'm interested to know for next time I'm unwell - no harm in having a few strategies is there?)


William got diabetes at 26 months so BTdoingT. I think your advice was fine and helpful and I appreciate getting advice from type 1's. Sometimes getting the perspective of a long timer is an eye opener.

I think we all have to keep in mind that whatever advice we offer or read has to be put in individual context for our kids or ourselves, etc. Babies and toddlers are different than elementary age kids who are different than teenagers. I still appreciate advice from those who never had a little kid with diabetes - sometimes with modifications for our situation it works out rather well. I would suggest that no one base insulin doses or make drastic changes based on something posted here - but we all know that right?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I totally agree. I think it is amazing how much things have changed. :eek:

Everyone is different, especially babies compared to adults, even compared to toddlers, babies are a totally different kettle of fish.

I mean if I was to follow this well meaning posters advice, and give 2 units of insulin every hour if Anastacia's BSL was over 10mmols/L... I would kill her. Anastacia's sensitivity to insulin means 1 unit drops her 55 mmols/l... so 2 units would put her BSL at about -100mmols/L at least. And to leave her to sleep if she decides to and check her when she wakes... well, I would be waiting forever and a day... cause I'm afraid she'd probably never wake up.:(

I agree, everyone should be mindful that not everyones situation is the same, and what helps another person, may indeed kill another. Therefore what advice is given here (for big things like insulin dose changes and such) should not be followed unless you have ran it past your Dr first. Peoples experiences are invaluable though and I read all of them with an open mind. Anyway had to add my 2 bobs worth. :p

[Pammers]

I know you're knee-deep in it right now, but I sure hope to hear from you soon, Amy. I've been thinking about sweet, beautiful, little Emma all day.

Hope things are better. :cwds:

[Pammers]

I'm so worried. :(

[hold48398]

Pammers, me too :(.

[bkfkmc]

Pammers and Hold-

It seems like Amy may have said in one of her posts that they had plans this weekend. So, no news may mean that they are off having fun instead of something bad. I could be wrong, it just seems like I may remember reading something along the way...

[Pammers]

Oh yes, the mountain getaway. I hope they are there having a great time. :)

[hold48398]

Oh, I must have missed that post but that's a relief. Sure hope they can enjoy every minute of it!!!

[words4mom]

Amy,

I'm new, reading lots of posts. I hope by now your Emma is feeling better and the ketones got resolved. My heart went out to you (belatedly) about waiting 3.5 hours and not getting a call back on a sick day w/ a diabetic child. We are only 4 mos. into my 15 year-old son's Type I, and he recently got a fever and vomiting (stomach virus, lasted 3 days, and he lost 3 pounds!). The secretary of the large hospital clinic we get care from told me to call our pediatrician. I had to explain to her that after 15 years of being a mom, I know how to care for a routine stomach virus. What I don't know is how to care for a diabetic kid w/ a stomach virus (grit teeth, try not to swear). She put me on hold (I'd already tried to get through to them for half an hour) and in 30 seconds came back to tell me to give him his usual morning insulin shot/dose and solid food (!). He hadn't vomited yet, but I could tell it was on the way, lots of gas and queasiness and climbing fever. She wouldn't let me talk to the nurse to find out why she would recommend solid food. Sure enough, a couple of hours later he was vomiting. I left messages for another nurse to call me, & she was annoyed that she'd gotten a busy signal 3 times. I told her I was trying to get informal support since I couldn't get good or timely help from them! She apologized and said the desk should not have handled it that way.

We got through it (I have new grey hairs, however, lol), but long way of saying I totally understand and sympathize with how distressing and crazy-making slow service can be with a sick, diabetic child (especially how young yours is). Hugs to you!

Candice in Maryland
chaaga@aol.com

[EmmasMom]

Emma is doing much better!! We did go away to the mountains for the long weekend and just got back. (It was a fabulous home, not camping or anything that would be hard on her ;)) She's still not eating great, but we managed to keep the ketones at a trace, and other than running low from all of the activity she was great.
I'll be sure to ask about strep cultures, but since he did complete blood work I'm sure we would've seen an elevated white count... I think. It never hurts to ask though.

I'm sorry I didn't make it clear that we were leaving! As always I appreciate all of your concern and advice! You're all wonderful!!!:D

I'll post tomorrow when I've got more time...

[bethdou]

Glad to hear you got away and had a good time, and especially glad to hear that Emma is doing better. Having a sick child is bad enough; having a sick small child with D is just too scary!
:)

[EmmasMom]

[quote=HB1;10200]
I'm interested to know why advice coming from someone who has had diabetes for 20 years (my diagnosis anniversary is today, in fact) is any the less valid than that of a parent of a diabetic child, who, with all respect, may have only been dealing with diabetes for a couple of years? (I'm certainly not saying that my advice should be taken as MORE valid either - there's a place for everyone's advice and expertise.)

[quote]

HB1, I appreciate your advice, but as others have mentioned the care of a baby is very different than that of an older child and worlds away from an adult. My husband "Brensdad" is also type 1, and though he also had years of D experience prior to Emma's dx's we had no idea what we were in for. We had to re-learn everything about diabetes because the only similarities between her care and his is that they both require insulin to stay alive.
We always test 10-14 times a day, even on good days as a 300+/- change in numbers can happen in less than an hour. We always test during sleep,(she has more severe lows during sleep than any other time despite going to bed with great numbers, she also has huge spikes from growth hormone that change nightly). Even with perfect blood sugars large ketones can cause DKA, in anyone not just a baby, so I would never advise ignoring ketones just because blood sugars are normal. Emma's insulin sensitivity is about 275 per unit, so a 2 unit bolus could drop her 550 points. We could never give a correction like that. Illness further complicates all of this making it very difficult to manage, and the fact that you can't "push fluids" on a toddler also makes it very dangerous.

So no offense, but the validity of your advise is obviously questionable in this particular situation, and was the reason for my husbands comment. We have learned more about managing D in an infant in 1 year than most doctors learn in their lifetime, even our pedi endo's have very limited experience with infants and toddlers and learn along with us at each new phase of her care. It is a highly specialized area, and having diabetes only gives you a small understanding, as my husband now knows. I'm sure you have a lot of wonderful experience to share about growing up with diabetes and how to handle life's challenges, so we are grateful you've joined us. But please know that most of the parents on this forum are more knowledgeable about new cutting edge diabetes care than the average type 1 adult, (maybe not you) and know significantly more about the care of small children with D. So if we question or counter your advice please understand that we are only protecting our children. It is not a personal attack.

[EmmasMom]

The final blood work came back today and her ANA is perfect along with everything else. Our pedi thinks the possibility of JRA is ~0~ at this point.:D :p I'm going to get some video of her walking and he's going to get a second opinion from an orthopedist just to make sure there's nothing else going on.
Huge Relief!!

She seems to have developed an allergy to strawberries, so the rashes could've been related to that. She had a pretty bad reaction this morning where her skin turned bright red and puffy everywhere her strawberry yogurt touched it. It was mostly on her face and around her mouth, but even yogurt specks on her arm left bumps that looked like hives.:confused: She also got very congested within minutes and red around her eyes. I've never dealt with a food allergy before, so I'm not sure what to expect. The peds nurse just said to keep her away from strawberries... Thanks!:rolleyes: I guess I'll have to start reading about that now too.
I so should've gone to medical school, it would've made being her mother so much easier!!! LOL! I'm sure you all feel the same way!

[Ben'sMommy]

A lot of other mums on this site have mentioned their kids have food allergies as well as D. I wonder is there a connection or is it just an unfortunate coincidence??? :confused:

I'm delighted to hear that Emma is ok now and that JRA is not an issue. :)

Are there still concerns that she may have lupus, Amy???

[Kelly]

I'm so glad all the tests came back a-o-k!:D
If I were you though, I'd be taking her to have allergy tests... asap. I mean if it causing all those symptoms you really dont want her to be in contact with it again, like what if its not the strawberries and something in the youghurt? You don't want it getting any worse then that and allergies get worse with increased exposure... eek! Scarey! You poor thing! :(

[zimbie45]

Yeah, great news NO JRA.. what a relief... Itsnt it weird how you can eat somethign one day and not the next cause of an allergy!!! I used to eat oranges adn lemons all the time then one day.. Anytime i touched anythign with citrus on it or around it i would break out head to toe in hives.. then after a few years that allergy went away!! not sure how or why... I know food allergys can be scary things though. I would go get her tested too just to see if there are any thing else.. SHe is getting older and still probley hasnt even tried everythign yet.... ANd yes some times i too feel like i should go get my PHD... Although im VERY far from it i at least have my degree with medical assisting with certifications with blooddraw and injection... ( no i decided not to work in this field_) So I had some what of a small upper hand at some of this than most, but my AUNT ( she raised me ) tells me every day that my knowledge of this stuff amazes her and I tell her stuff we all go thru with our d kids and she always says we all should be DOC's.. lol

[EmmasMom]

Are there still concerns that she may have lupus, Amy???

I think the blood work he did pretty much ruled out Lupus as well.:) He was concerned that IF she had already developed another AI problem so soon there must be more going on, something systemic. But it appears that she is in the clear for now!! Thank God! He was almost as scared as I was about the test, and he was really trying to prepare us for the worst. Luckily we were both wrong!:D I can almost sense the fear when I bring Emma into his office now. LOL! He never knows what to expect from her.:rolleyes: