Diagnosis Ketotic Hypoglycemia

T spent three days in the hospital at the beginning of this week. We had him go through a 36 hour fast under medical supervision in order to figure out why he keeps having low blood sugars.

The test went alright. He didn’t drop too badly. They monitored sugars and ketones. They wanted him to get down below 50 so that they could do more blood work. Instead he got high ketones which meant that they had to stop the testing before he reached 50. He was at 65 which is low but not dangerously low. But his ketones were at 3.3 when they stopped him and somewhere in the 4s when they finally were able to get the blood drawn an hour later.

The poor kid! He has veins like mine that don’t like to be available for blood draws. They kept seeing good veins but couldn’t get the blood out of them. It was so reminiscent, holding him, and having several nurses and residents trying to get blood out of him while he screamed, to what I went through a year ago with S when he was diagnosed with diabetes. I had tears streaming down my face because I couldn’t take it (Aaron had S at this time). But they finally were able to get all the blood that they needed.

We are still waiting results. But for now he has been diagnosed with ketotic hypoglycemia. Essentially he gets high ketones when he has low blood sugars. This means that when he is sick he can get in a very dangerous cycle. Let me explain a little.

All of us get ketones. When we don’t eat ketones are our body’s way of protecting ourselves. We start to eat our own fat and that causes ketones to be present. In small amounts this is not an issue. As a healthy individual it is possible to flush those ketones out of our bodies with insulin before it becomes an issue.

In a diabetic ketones are dangerous because the body is unable to flush them out without insulin. That means that we have to inject insulin into our diabetics in order to aid in the process of removing the ketones before they build up.

With hypoglycemia and ketones the insulin is already doing its job but it is not clearing the ketones. High ketones can lead to very dangerous consequences. The biggest issue though is vomiting. If a child like T has low blood sugars, can’t keep anything down, and has ketones present then the cycle keeps going. Ketones get higher, sugars get lower, and vomiting continues to make the process get worse. Its hard to understand, but essentially, the vomiting of the illness or the ketones makes the child extremely ill, landing them in the ER.

We have already gone through this twice with S. Low blood sugars, high ketones, vomiting and an inability to get him out of the cycle. Now we get to fight it with T.


So basically stomach viruses are very dangerous for my kiddos. Deadly serious. If they get a stomach virus we are more than likely going to end up in the hospital until they are clear of it. They will need to be hooked up to an iv to get fluids to help them get back on the right track and clear their system of the ketones, get their sugars back on track, and get them feeling better.

But its good to know this, and to be prepared. (So forgive me if I end up canceling on you if your kid is ill. Its nothing personal. I just have to be overly cautious.)

There is blood work still pending to see if anything else is going on. And we are keeping an eye on sugars because there is a suspicion that T is developing diabetes.

Oh joy!

And sure enough the last two days his sugars have been climbing. Not dangerously high, but much higher than ever before. Its all a waiting game at this point.

But S would be thrilled it T got diabetes. He desperately wants his brother to have a pump like him. As a matter of fact, he is convinced that we were in the hospital because T has what he has and that we are going to go back sometime soon to get him a pump as well. Poor kid! He feels so alone in his diabetes.

Anyway, I don’t share this to be negative. I just share because it is what we are dealing with now. Also to give information to anyone who isn’t aware that this could be an issue. Keep in mind that blood sugars below 50 whether diabetic or not are very dangerous and can lead to seizures and a variety of other complications. They should not be ignored!

I am NOT a doctor. I don’t claim to know everything or to understand all of this. But before I was a d-mom, I knew very little. I am hoping that by spreading knowledge it will help other parents and family members to be sensitive to people who are dealing with sugar issues (high or low), and also to be weary with their own child when symptoms are present.


If you think there is a problem, please get help immediately. Better to be overly cautious then to put your child in danger. As a mother who almost lost her child to this disease I pray that you NEVER EVER EVER have to go through that.

So for now, T gets to have his sugars checked any time he is ill, acting unusual, and first thing after he wakes up. Not too often, but often enough that we will hopefully be able to watch his trends and catch anything abnormal. Hopefully the blood results will give us some more answers and pinpoint which direction we are headed.

Unfortunately they still know so little about what causes diabetes or how it starts that we really have no way of either preventing it, prolonging it happening, or even knowing when it might happen (if it is going to happen). All we can do is be diligent and hope to catch it before it lands him in the ICU, if he does go from hypoglycemia to diabetes.

So that’s where we are right now. With one child’s pancreas not making insulin and another child’s pancreas making too much. How I hope and pray that baby number 3 comes out with a pancreas that is fully functioning and continues to function for all of his life!


10 thoughts on “Diagnosis Ketotic Hypoglycemia

  1. Sarah French says:

    Dana, I can’t even imagine what you’re going through. You have become such a strong mama through all this. It’s amazing what we’re capable when our kids need us. I’m praying for you and the boys!

    • adaynasmile says:

      Thank you! Our strength is never known until we are weak. But then again, it is through our weakness that God is strong and shines through us. I don’t feel strong at all. I just take it moment by moment. That’s all I can do.

  2. valwanberg says:

    I know this post is old, but I am wondering where you are at in your journey? We resenting had our 3 year old diagnosed with KH, but have noticed blood sugars have been on the rise also. Diabetes is in our family. The Endro that we see is always very non schilant about HP acts as though it isn’t a big deal. She literally told me that is he went into a ketotic state again(which is how we found out about it, he dropped to 30 and had a seizure, before I even knew what was going on) anyways, she says, you wouldn’t want to see if happen, but he would be fine in about 3 hrs, because that is how our bodies work and his body would replenish itself on its own. Of course this is contrary to the Mayo Clinic site which says, you drop, have seizure and then coma. 😞
    I am becoming more and more concerned about diabetes…for now I am awake at 2 am, checking blood sugar, because it appears we may have the stomach flu 😞 this will be our first sickness since diagnosis and I would be lying if I said I wasn’t a little nervous.

    • adaynasmile says:

      Hi Valwanberg! I completely understand your nervousness! It is a scary, very unknown disease! We were very fortunate in that T was diagnosed at the Children’s Hospital of Philadelphia which is ranked number 1 for hypoglycemia. We had an amazing endocrinologist who followed him and taught us a lot about the disease. Thankfully he has not had any major issues recently. But to be honest we have gotten past the point of checking sugars on even a semi-regular basis. He still has a meter and strips, and I do check whenever he has symptoms that are not cured by feeding him. And anytime there is vomiting in the house by one of the kids, sugars and ketones are checked. Are you being followed by a pediatric endocrinologist (you mentioned an endo) who knows about hypoglycemia? If not, I highly recommend that you find one who specializes in hypoglycemia and get your little one in to be seen. Unfortunately you may have to drive some distance to see someone who actually knows anything about, depending on where you live. But it is worth it, even if it is a few hours drive, to have your child followed every so often. We took T in about every 6 months for a followup and were able to call in anytime there was an issue. This was a huge relief for us! Good luck on your journey and I hope that you find the answers that you need!

  3. bunhash says:

    For over a year we didn’t have an answer to my daughter’s weird vomiting episodes. We asked doctors, looked online, whatever. ‘Stomach bug’ was all we ever got, but it war not a stomach bug. We actually got our first hint when she was so sick and pale and out of pity I let her have a popsicle. It worked like ithad magic properties on my daughter. She felt great after eating it, she stopped shaking, her skin returned to normal color and no more vomiting.

    I found out about kh and it fit. She was treated for diabetes and that was neg, so it was clear to be Wyatt dye wad suffering from was hypoglycemia. I kept a little journal about her food intake and it turned out her episodes correlated with eating too little the night before. Still no peds believe me so is not documented.

    Now I’m googling it because there’s been a lot of stomach bugs going around. She’s never caught one thank God, but I’ve been obsessive about avoiding them. I’ve been concerned that if she caught one that it would trigger her hypo and would end up a horrible cycle. I see from your blog on pretty spor on in that guess.

    If we do catch a bug, should I take her to the er, no waiting you think? I don’t want to wait until she’s worse to take her. It’s been pretty awful for her once or twice. Terrified me. She was almost non responsive those times.

    • adaynasmile says:

      I would definitely go to the ER. Make sure it is a children’s hospital if possible. I would also suggest picking up an inexpensive meter (they come with a few test strips and you can get a good one for $20 at Walmart). I would check a fasting sugar (first thing in the morning) and anytime that you experience vomiting. If you ever see a number 50 or below you need to get her to the nearest doctor ASAP. It is an emergency. Do not let a nurse or doctor dismiss your concerns. Ketotic Hypoglycemia is not well understood or studied. Most doctors dismiss it saying that the child should just eat more. It is not always so simple. Hang in there! Hope that you get the answers you are looking for and that your little one does well.

  4. Soli Deo Gloria says:

    Hi there! I stumbled upon this post as I’m researching any links between KH (undiagnosed as of yet in my 5yo because I’m just learning about it after 3 episodes) and T1 (my 12 yo dx-ed 7/13). Thankfully we have our quarterly visit tomorrow with our endo so my 5yo will be tagging along. How ironic to have these little bodies in our care with such opposite yet similar problems. And I am NOT designed to be a substitute pancreas! 😂

    • adaynasmile says:

      Sorry to hear about your possible diagnosis! I know how scary it can be to figure it all out. The good news is that it is manageable. T has reached a point in his life where we just know to treat with food. MUCH easier than dealing with S’s diabetes! Not to minimize the scares or the problems that can come with it. Just giving you hope that it is more manageable and that you can do this!

  5. Rachel Pierson says:

    I feel like the same thing has been going on with my son. For over a year now he will randomly have episodes where he wakes up and is very lethargic and refuses his breakfast and just wants to sleep. Then the vomiting starts. The first time it happened we checked his temp and then decided to test his blood and Urine(hubby is type 1, so is his dad and sis) and his blood sugar was in the low 60s and he had high ketones. We immediately tried to get him to eat/drink something sugary. Eventually we were able to get some sugar in him and the vomiting stopped and he went to normal again. Anyways these episodes continued about once a month. Then last month he had a really bad one. So we got some sugar in him (15g carbs) and we tested 2 hours after and his blood sugar was then higher than normal (183). Now fast forward to today. Wyatt woke up and was lethargic, refused food/chocolate milk. Then at 10 he vomited so hubby tested and he was at 74.(not low so we didn’t worry too much). Then vomiting continued, he just wanted to sleep, refused anything with sugar in it, retested at 11:30, bs was at 62. At that point husband went to get juice in kitchen, to try that, and when he returned Wyatt was out of it, husband had to shake him to get him to respond even a little. That’s when we went to er. He vomited again on way there and was acting VERY strange. Kept dozing off and wasn’t responsive. Finnaly 1/2 way to er he asked for drink, husband gave him juice and he drake 1/2 (30g carbs) then we got to er. It was about 45 min from time he drank to time they tested his blood and his blood sugar at er was 210. Isn’t that high?? The dr at the Er weren’t worried about anything. They say he’s fine. They didn’t even do blood work, of any kind. Anyways I wanted to let you know how much I can relate to your story. Did T ever go on to developer diabetes? Also how old were your boys in comparison to this story?

    • KAthleen Steinel says:

      This is the same situation I am in right now with my daughter. We have had several lows, some after eating some in the morning ( fasting) but we have also had some elevated blood sugars. Once we received a number of 275 and a few other times between 175-210. Has your child developed diabetes? Any updates at all

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