Pediatric Endocrinologist

Our pediatrician referred my son to a pediatric endocrinologist. I'm obviously worried, and wondering what to expect. He's had 4 or 5 episodes now in the past several months where he's woken up and been very weak. A couple times he wouldn't get out of bed and said his legs wouldn't work. He looks pale and his lips look pale/purplish. It looks like he feels miserable, but he can't describe what's wrong. After we eventually get him to drink some juice or eat, he'll slowly start to feel better. Then he snaps out of it and looks and acts completely fine, appetite is back full swing. Some of the worse episodes have lasted 4-5 hours. The shorter ones have been a couple hours. I've always been kind of worried about his growth, he barely stays on his 5th percentile curve for weight. But he's been average for height. My first thought is blood sugar, but I honestly have no idea. And I'm a big worrier who can overreact about health stuff. Has anyone had any experience with either these symptoms or seeing a pediatric endocrinologist?

 

We saw a PE for Anthony's height(he's 38.5 inches and 33.6 lbs and 5.1 years old, back in November). They were great there.

But I know Bex(becasquared) used to work in a PE office, so she may have some insight. Good luck and keep us posted! :hug:

 

Ug! I was just reviewing the insurance coverage tonight of Sabrina's visit to the PE 2 weeks ago. $1200!!! It's a dang good thing we have secondary insurance because our primary has a pretty big deductible and we sure don't have the money to cover that. AND, it was the most useless Dr. visit ever. We went because of her size. She's only 44 inches tall and 37 pounds at over 7 1/2, so not even on the charts for either height or weight... and she never has been. We drove 1 1/2 hours to get to Children's Hospital. The endocrinologist found a single case study of someone with Achromatopsia who was quite small and said that was the cause for Sabrina, case closed. Sabrina has Achromatopsia. She's legally blind because of this fairly rare genetic condition (about 1 in 35,000). But NO WHERE in all the studying I've done over the last 4 years have I found anything that connects small stature to this condition. When I said this, she printed out this single case study, and basically told me that I didn't know what I was talking about. But this person also had mental deficencies which Sabrina doesn't have. It was so stupid to use that! She did order a bone scan and some blood work to placate me, and sent us on our way. Oh, and she shook Sabrina's hand and told her she was glad she'd come in because it was the first time she'd ever met someone with Achromatopsia and she'd learned something new (I don't think she'd ever even heard of it before we got there). And now my insurance is paying $1200 for this completely useless visit. I'm absolutely annoyed.

After going to the PE, I did an obviously unscientific survey of the Achromatopsia yahoo group I'm on and everyone said it has no bearing on size. The people on the group are both those with the condition and parents of children with it. It's only eyes that are affected. Even someone who works at one of the leading centers in the US for dealing with A. said that she's never seen any correlation between a person's size and having A.

So that's my very recent experience with the Pediatric Endocrinologist. I hope you have much better results! What your son is going through does sound a little scary, so hopefully you'll get it all figured out and he'll be set!

 

DL - I've never heard of that being a reason for short stature. If you didn't like this Endo, ask your pediatrician to do the initial bloodwork/x-rays. Once you have a better idea of the baseline (bone age xray delayed beyond 2 standard deviations, low IGF-1), either go back to the same Endo, or see a different one. I'm sure you've seen a geneticist while trying to diagnose the Achromatopsia? If the Endo doesn't give you a good feeling/workup, go see one. There might be something else causing the short stature along with the blindness. Was she physically delayed (i.e. milestones passed more with her size age rather than her chronological age?)

Denise-do you think he's having low blood sugar issues while he's sleeping? They'll probably do an A1C on him (90 day average of blood sugars), and if it's low, they'll do more bloodwork and maybe some imaging stuff. We had only one person with true hypoglycemia (that wasn't fixable by frequent, small balanced meals) in the 4 years I worked there. What you should do is keep a food diary with the times, the food, and the amount eaten, and when/if he has the shaky mornings. It'll give them something more concrete to work with. Hope that helps!!

 

I never went to the dr. about it, but it does sound like low blood sugar in the morning. It use to happen to my Timothy. I had read about it, so I didn't completely freak out when it happened as a baby. But Timothy literally couldn't just wake up at times. He would sooo groggy and his muscles would be limp. We would just start dribbling apple juice into his mouth, then he would start drinking and in 30 mins, he'd be up and running around like nothing ever happened. I would say it happened with some regularity before Timothy was 2. Then after he was 2, it tended to happen when Timothy was sick and not eating well. I don't think it's happened since he was 4.

Timothy is extremely thin, but average to tall for his age. He eats quite a bit, but he just burns through it. We try not to let Timothy get too hungry because he honestly gets extremely rude, emotional, and angry when he's hungry. It's getting better. Timothy is learning recognize now when he needs a snack.

I hope you find some answers. Like I said earlier, we never went to a dr. about. I had previously read about it, so when it happened I just pulled out the apple juice and went with it. Timothy seems to have out grown the overnight stuff now. I always had apple juice ready for Timothy when he woke up for several years. I also never let him sleep in late. If he's not up by 9, I woke him up so he wouldn't have to go through the low.

I don't know if this is your problem or not. I hope you get some answers.

Marissa

 

This sounds a lot like my son. But I didn't notice him having episodes until recently. Never as a baby. a couple times at 3 and 4, that at the time I thought was related to another illness, and then these few times recently. But I read about it, and seeing the dangers associated with having hypoglycemic attacks during the night completely freaked me out! Hearing someone else like this makes me feel a little better. It does seem to be worse when he sleeps in, and thinking back to his behavior and meltdowns and how much worse off he was with an illness, it makes me wonder. He is similar in that he is thin with a high metabolism and average height. At 5, he's 34 lbs and 43 inches. I can't help but wonder if he's supposed to be bigger sometimes. My daughter is 46.5" and 42 lbs. I know all kids are different, but both my husband and I grew the way my daughter is as kids.

 

So far, I've only ever noticed an issue when he wakes up in the morning like this. How accurate is the 90 day average if he only had one or two low spells in that time? Would that stand out? I'll definitely start on the food journal, thanks for the tip. There are some days where he's a horrible eater and I figure he'd have another episode, but he'll wake up fine the next day. Then there are other times, like this last time, where I don't remember him eating poorly the day/night before and he wakes up like this. This last time he did have juice and some cheerios, didn't really want the cheerios. He wasn't completely lethargic like in the past though. My husband took him to the zoo, and gave him fruit snacks when they got there and that did the trick. I'm confused why the juice didn't work immediately though, or maybe it just took the edge off and kept him from feeling even worse?

 

The Achromatopsia was diagnosed with an Electroretinogram. We've never actually had the gene work up. Drs just know that Achromatopsia is a genetic condition. She was diagnosed as having Complete Achromatopsia, and she has exactly all the aspects of that condition: complete color blindness, severe photophobia, nystagmus, incorrect iris function, uncorrectable nearsightedness over 20/200 (hers is 20/300).

A couple years ago, we were sent to the genetecists at Children's to see if maybe her tiny size was some how "bundled" with the Achromatopsia. They reviewed her stuff, said it's super expensive for gene testing, our insurance probably wouldn't cover it, and that it wouldn't change anything anyway. So we didn't do it. Frustrating.

She does seem to be kind of physically delayed. Although she's really thin, she has pretty much followed her own curve... just very slowly. Her height to weight ratio is actually "ok" at 5%ile. Everything else is WAY below the charts. All of my other kids got their first tooth at 5 months. She got hers at 8. She didn't walk until 18 months. Lost her first tooth after Sydney had already lost 8, more than a year after Sydney lost her first. Mentally, there are no delays, she's totally where she ought to be for school. The PE we saw did have a bone scan and blood work done. I haven't heard the results yet. I'm going to call the pediatrician today to see if they've gotten them. While the visit to her was frustrating, it was infuriating to find out that the entire, useless visit is going to cost $1200... even if I'm not the one paying it.

 

We had our appointment today. She just took his history and did an exam. We go for a bunch of bloodwork in the morning. She said it doesn't quite sound like low blood sugar, since he doesn't wake up sweaty, shaky, or starving. Although, after leaving, I did remember one incident where he was sweaty and shaky. She did say everyone is different though, so you never know. She said the next time he has an episode we should take him to the ER to get his blood sugar checked immediately. That will give us more info. But hopefully all the blood tests she's running will tell us something. She seemed honestly more concerned about his growth than she did the blood sugar thing. She did mention there are several things, including celiac disease, which could explain the stomach pains he gets after eating certain things, the growth issue, his meltdown issues he used to have, and can also tie into these low blood sugar episodes.

Marissa, this got me thinking, didn't you post something about your son doing better on a gluten free diet? Maybe the episodes he was having that you described here could be related to celiac too? I'm anxious to get the results, but it's supposed to take 2 weeks.

 

My son is on a dairy free diet due to dairy appearing to trigger some mild tics in his eyes. We're figuring out that there is likely a mild tic that is genetic in my husband's family. We now know what to look for and are seeing the mild tic in a few other people. It seems that when Timothy eats dairy it sets off the tic. We are letting Timothy cheat a bit since he's not in school yet. Once school starts, he wants no part of dairy because he doesn't want to try and read with his eyes ticcing. Though since he did cheat today, I noticed that he had a stomach ache tonight. Last summer during ice cream season he also had a lot of stomach aches.

I do have a bil that is celiac. I know that Mama Kim deals with celiac also.

I'll also mention that when Timothy would wake up with the low blood sugar,he was never shaky or sweaty. It was much more like he just couldn't wake completely up.

Marissa

 

Oh right, dairy free. That's what it was!

he had the blood drawn this morning, so I guess we have 2 weeks to wait and see.

 

We got some of the lab tests back. Everything seems pretty normal, but they're waiting for a few more.

Growth Factor was 77, I cant' remember the standard normal range, but I think it was very normal.
No evidence of inflammation (SED Rate, CRP ok)
Hemoglobin was 5.2 - they said was normal
Thyroid, adrenal, and insulin tests all ok
urine - he has a trace amt of protein we're following up with the pediatrician on

but his level for caloric intake was low at 17.3 (I think under 17 is considered low). Now I'm feeling like a horrible mom not feeding her kid enough. I swear I give them three healthy meals and a couple snacks. I'm very cautious to give them healthy snacks, they eat fruits and veggies and I keep them away from a lot of crappy stuff. I feel like I'm so judgmental about a lot of the neighbors or friends kids who are always eating out at fast food places, eating fruit rollups and cheetos for snacks, when my kids eat lunch there, they actually give them cheese puffs as a lunch side...now I'm feeling like I've got it wrong and they're doing it better. Maybe he's not getting enough high calorie stuff? But my daughter gets the same stuff and is completely normal for her weight. She's so much bigger. His problem is he just doesn't eat what I give him. He gets so distracted at meals because he's not interested in eating. He usually eats half of what I give him for lunch, and hardly any dinner. I leave it out for him, figuring if he's hungry he will eat it. But I don't push too much. Now I feel like I have no clue what I'm doing. They want me to meet with a nutritionist. Feeling like a failure, when I really thought I was doing good at this for them.

Here's what he had yesterday:
Breakfast - ego waffle, yogurt and blueberries - he ate it all
snack 1/4 cup granola - he ate it all
lunch grilled turkey & cheese sandwich, cut up cucumbers and red peppers, strawberries - he ate half the sandwich and the strawberries
snack - (bad!) my husband took them to the park and they all shared a milkshake on the way home
dinner (around 7:00 - so it was late, and not close to the milkshake) we had jambalaya with chicken, cauliflour, pineapple and a slice of bread with butter. he said his tummy hurt (which he says a lot, and I'm not sure if it's true or if it's to get out of eating). but he ate the bread and later he ate the pineapple. that was it the rest of the night. I left his plate out until bedtime. He never went back to eat and never asked for a snack. I asked at bedtime if he was hungry and he said no. I thought maybe he'd wake up weak today, but he didn't.

How do you make a kid eat, when they just don't want to? Half the time at dinner, I end up bargaining and telling him how many more bites and sometimes feeding him myself. It's ridiculous. Does this sound like he's eating enough to you? Is this normal?

Does anyone know if this test takes into account your metabolism and how much you burn off, or is it strictly picking up your caloric intake and nothing else?

 

I was just coming here to post about my son and daughter with this issue. I think I may have finally found the cause, Ketotic Hypoglycemia or accelerated starvation and was wondering if anyone else dealt with it.

Ketotic Hypoglycemia tricks the body into thinking he is starving. His metabolism is so fast, that it burns through all the food he eats and tells his brain that he is starving. The brain triggers his ketones, which then depletes his sugar levels.

The only thing that doesn't fit is my kids always seem to eat normal the day before the episode. They have both ate dinner around the same time the day before. I don't know if they just haven't eaten as much as normal and that's what throws their bodies off or what.

My son had his 1st episode at 14 months. I got him up and he was unresponsive and floppy. Rushed him to the dr and his blood sugar was 35. Into the hospital he went and they ran every test they could think of. He's had tests run off and on since the 1st episode. 4 yrs later he still has the occasional episode with extremely low blood sugar. He has never been sweaty, shaking or starving when he wakes up. He is also very thin. At 5 he weighs 40lbs and 44 inches tall. Skin and bones but he eats constantly! The dr has ran test after test and has never found anything wrong with him. The thing is we can't replicate the low blood sugar when we make him fast for tests.

This morning my 3yr old had the same exact symptoms. When I checked her blood sugar it was at 50. Once I got food into her she perked up but has been off all day.


A blood sugar meter has saved my sanity. I don't have to wonder if they are acting weird if its blood sugar issues or not.

 

That's very interesting. Thanks for posting this. When your children wake up this way, are they "starving" like the doctor told me they would be if it were a true hypoglycemic episode? It's interesting that you don't have all the symptoms on the list, but you have proof of the low blood sugar. Reading about the Ketotic Hypoglycemia, it still sounds like my son, whether he has 100% of the symptoms or not. How long after eating do your kids "bounce back", and how long does an episode normally last upon waking?

 

there has only been 1 time that my son asked for something to eat or drink when he had an episode. He asked for soda to drink as soon as he got up. That is what made me check his blood sugar that time because he doesn't ever drink soda and it was down in the 40s. Usually as soon as my son wakes up I can tell if his blood sugar was low just by his behavior so I would test and then give him something to eat or drink right away. Within 30 minutes he's usually back to normal if I don't give him too many carbs. If his blood sugar spikes he acts sluggish and not himself too.

 

You aren't a failure! You've noticed an issue with your son and you're taking steps to figure out a) what it is and b) what to do about it. I can't speak to most of your concerns but I would say that not feeding your kids cheetos as a side dish for lunch on a regular basis is a GOOD thing. I promise. IF you need to increase his caloric intake, I can guarantee the nutritionist will have suggestions for how to do that while still fostering life long healthy eating habits. I mean, you don't want to throw the baby out with the bath water. A few things I can think of off the top of my head are any healthy fat - avocados, peanuts, olives, coconut oil, etc and proteins - meat, greek yogurt (check labels - some of the flavored options contain a lot of sugar), full fat cheeses, etc. Keep us posted as you learn more!

 

Thanks!

 

I agree with Rachel. You are NOT a failure. My oldest won't eat what I give her for the life of me. You cannot force a kid to eat. I have tried. I do let her eat some of the junk to get in some calories but honestly she's not all that interested in the junk either. She just doesn't eat much and most of what she does eat has almost no calories (strawberries, cucumbers, watermelon, cherries). The only things she will reliably eat that have calories are yogurt and cheese.

We had to get lots of blood work done and got sent to a pediatric GI just to be told she wasn't getting enough calories. Ummm...I could have told them that. The good thing was that we got a list of healthy high calorie ideas. I would be happy to share those if you like (though I do see that you may be going to a nutritionist so I completely understand if you'd rather get the information from them).

 

Jess. I would love to see the list of food they gave you if you don't mind sharing.

 

Sure. I'll post it later tonight.

 

Thanks, I'd love to see it too!

 

Here they are. I personally wasn't able to utilize a whole lot of them because Vivi has lots of texture issues. She has gotten better about textures but that's only since we got her weight back on track.

Let's start by trying this link: High Calorie Foods for Kids. If that doesn't work for anyone, let me know and I'll try to post them in a better way.

 

I haven't read the other replies so it may already have been mentioned. but I would suggest to get a glucose meter from walgreens. You can get them for 10.00 with the testers included. when he wakes up like that test his sugar. and keep track of it on a piece of paper if the machince doesn't have a memory,and take it with you. they will check his sugar at the dr. and will have him back in after fasting. but I would have one at home just for your comfort level. if it is low 70 or lower or if he is acting like that get him some juice. write that down on the paper what you did. writing everything down is important. I'm diabetic and have been since I was 18 months old so I have been around endo's for quite awhile. I am sure you are worried but you have a lot of resources at your reach now. And it sounds like you guys are handling it well. I can relate to how your son is feeling. It is hard to describe especially not growing up with it, so it probably is hard to describe. You might also write down what his symptoms are on the paper as well. As many details as you can will help. His reactions to low sugars may change over time but not to worry.
If you have any specific questions you can ask me I did shots for about 16 years. I have a insulin pump now.

 

Denise, I wanted to also say there are many times that my sugar has been low and I haven't been hungry at all. You don't have to have each and every symptoms on the list. I think I would keep good records and get the glucose meter. If your able to handle the "lows" if that is what is happening. You don't need to go to the er. If ever he isn't waking up or responding to you at all, then yes you need to call the er. but so far it doesn't sound like he is running that low at all. As for his weight and height. My twins one is now 20 pounds bigger than his bro. the other is barely on the charts 1%. He is just small they get healthy food and healthy snacks he is just small. The dr is ok with that ,as we have told her what he eats. I would continue to offer your son the meals and snacks that you have been. Of course if your trying to get some weight on him. Advice from my dietian friend is gravy and biscuits, and shakes with whole milk. Of course my son doesn't eat shakes. Your doing a good job, kids will eat when they are hungry.

 

Thanks, I'll have to look into that.  I didn't realize they were readily available like that.  Luckily, he hasn't had any episodes like that lately.  But he has been having other issues.  It's always something with him!