Unexplained low blood sugar?

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I hope it's ok, but I'm posting in AIBU for traffic, as drawing a complete blank on Google.

My son, DS13 has Aspergers, ADHD and Anxiety. He goes to a specialist ASD school.

We are having behaviour problems, getting steadily worse over last 6 months - bursts of anger and aggression and impulsivity. It's like dealing with a 3 year old's temper tantrums, but in someone with the emotional maturity of a 6 year old, and the strength of a 13 year old.

CAMHS want to try adding a low dose of a further drug called Quetiapine.

In the meanwhile, he has been having a series of routine medical checks, and the one striking abnormality is his blood sugar levels being too low.

I'm totally confused though as to what might be behind the low blood sugar. Repeated tests are confirming the same. But no-one seems clear what to do next? In my mind, something wrong with blood sugar levels could clearly be causing periodic changes in behaviour. But is this part of the whole Aspergers/ADHD side, or something completely different. Should I let CAMHS push ahead with the new drug they want to try, or should I be pushing the GP for a referral to a specialist on the blood sugar as a separate question.

He currently takes 20mg fluoxetine a day (anti depressant for Autism linked anxiety) and 20mg slow release Medikinet (for ADHD). Until 6 months ago this combination was working well.

Any advice would be really appreciated.

I don't know about his condition or medication but for low blood sugars is he eating regularly? Little and often, balanced diet. I get 'Hangry' (angry when hungry) if I don't eat regularly. A lot of people's mood is affected by low blood sugars. Is anyone monitoring his food intake? Teenagers tend to eat a lot due to growth spurts.

There is very little known about low blood sugars in non diabetics and it often ends up as being a case of 'yeah we don't know' dispite extensive testing. I'd recommend requesting a referral to a endocrinologist with a view to glucose tolerance testing. In the meantime I would suggest regular testing blood glucose e.g. before search meal and again an hour or so later plus at any point that you feel he may be experiencing symptoms of low blood sugar. Your doctor might be able to provide a glucose monitor given your child's needs but if not they are reasonably priced over the counter from any pharmacy. Keep a food diary and look for any patterns. Some foods can cause low blood sugar. If I recall correctly, some people report aspartame causing low blood sugar, but I think it's likely different for everything.

It's worth noting in case your son is not able to communicate their feelings well, that is likely that they feel awful when his sugars drop. For me, I feel incredibly cold, I get pins and needles in my feet hands and face, get disoriented and feel sick, sometimes vomiting as a result. If I don't treat the low effectively enough quick enough I collapse, but I am on the more severe end of the spectrum. Good luck. Hypoglycemia is truly horrid.

Thank you for the replies.

We've just done a thumb prick test this morning - 1.2 mmol per L. That was 10 minutes after waking up, but before breakfast. That is very low isn't it?

1.2 mmol is dangerously low (at least for my son who has type one diabetes). Yes, I would demand an urgent appointment with an endocrinologist. In the meantime, I believe that people with nocturnal hypoglycaemia are often recommended to have something containing corn starch before bed as it has been shown to release glucose slowly through the night. This might be worth thinking about as an interim measure. onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2796.1999.00432.x

I've spoken to the duty doctor at the GP surgery, who said not to worry if DS seems ok, as it is probably something that has been around for ages, and I only know about it now, as I've tested for it.

I pointed out that DS doesn't 'seem Ok' and has been having strange behaviour episodes since July, and this is why CAMHS now want to introduce the Anti Psychotic into the mix.

The Duty Dr GP acknowledged that I might have a point, but still said not to worry for now and just keep measuring it periodically to bring as evidence to our next routine GP apt on 19th Nov.

My blood sugar is often very low for no discernible reason. Particularly if I have a high sugar meal - I have been known to collapse a couple of hours later. I try to keep sugar / carbs low, and increase fat / protein. I'm not diabetic, or pre-diabetic, just have always had erratic blood sugar. I can get very confused and irritable, which usually makes things worse, as it is then impossible to decide on what to eat!

Obviously still push for answers, but as a PP mentioned, non-diabetic hypoglycemia is a bit of a mystery.

I'd also follow the endocrinologist path before adding another layer of medication. It must be very tempting for your son's team to attribute everything to ASD but sometimes it's just a bog-standard medical issue.

Well done getting a full check before going for extra meds.

My daughter has a condition called ketotic hypoglycemia which is where her blood sugars become dangerously low, and she also has ketones in her blood or urine. This is offer described as a pear drop or alcohol/acetone smell.

A blood sugar of less than 3 requires urgent correction.

Your son is also on medikinet which is known to suppress appetite. Is he eating enough? He needs to be having regular meals and snacks to maintain his sugars.

How have you got the means to test his sugars?

You need to speak to your GP and ask for an urgent endocrinology referral.

Has your son tried other medication like risperidone? Does he have a diagnosis of a mental health problem?

I'm wondering if there could be gut problems in the mix here - these often do go alongside many spectrum conditions and I am guessing that anxiety affects them quite noticeably too.
If some things are not being absorbed or processed as they should, this could either be causing irritation or having a knock on effect on a lot of other physical responses (in my case, it's especially nerves, and I think the vagus nerve in particular as the bowel/headache behaviour seems to fit what I have read). Also would second that if my digestion is sensitive, both sugar and caffeine have a really ramped-up effect and a very noticeable crash. I am usually quite sensible with sugar, though not caffeine, but there was a point when very stressed where I would eat even a little square of flapjack and go on a weird period of rollercoaster of mood and sugar crash, could also cause something like travel sickness when I had never had this before or as a child.
I'm better if I make sure I eat smaller amounts but never too long a gap (about 3 hours is the limit) and bananas, dates and nuts are my new godsend snacks in terms of what they do and how they digest - more slowly. They don't compare to sweetened or bready things which I would really like, but they are handy to have on me most days.

Does he ever act like he's drunk? Its extremely rare but there is a condition where your gut flora uses sugar to create alcohol.

I’m autistic and have some similar sounding issues with my blood sugar. They eventually called it post prandial syndrome - means my blood sugar plummets an hour or two after I eat, particularly high sugar meals. It affects my mood and behaviour hugely, and I feel exhausted afterwards.

I was seen by endocrinology and given an extended glucose tolerance test which showed my levels going down rapidly after the sugary drink. Mine was well managed with acarbose - taken with meals.

I found on an autism board somewhere that lots of autistic people had the same/similar sounding issues with blood sugar, possible link to a sensitivity to insulin (not sure if a medical link was given, may just be anecdotal).

What kind of food is he eating? If its refined carbs and sugary stuff then its likely to be contributing.

@Navy123 That's so interesting! I'm pretty sure that I am on the autistic spectrum, although I have never gone for assessment. As I said earlier on in the thread, I have really similar issues with my blood sugar, although if I avoid high glycemic food, I tend to be okay.

My son has had hyperinsulinism and ketotic hypoglycaemia. We are therefore quite familiar with non-diabetic hypoglycaemia and 1.2mmol is shockingly low. When my ds has been that low it has been a “blues and twos” into hospital. He also has autistic traits which we associate with brain damage caused by the lows.

• go to your GP and get a referral to an endocrinologist, preferably at GOSH or Alder Hey
• buy a monitor and take sugars each morning, before lunch & dinner and 30 mins after meals - keep a record
• join FB groups on ketotic hypoglycaemia you get extra advice
• any blood sugar lower than 3.5 - wait 10 mins, take again, if still low then feed, wait 20 mins take again. If still low phone 111.
• any BM below 3 feed immediately and check 10 mins later
• anything below 2 - phone 999, feed and check 10, 20 mins later. You can always stand them down but you need a paramedic there in case they don’t come up - don’t mess with your child’s brain!

That is low. Sounds like he could do with a metabolic work up.

@Generallybewildered that’s really interesting. Can I ask if you’re aware of any research done on the link between low blood sugar and the effects on the brain as you’ve described? I’d love to know more about this but I can only find information about brain damage caused by high blood sugar or one off extreme lows.

Thank you for all the advice everyone.

We have seen two GPs in our Surgery now, and both seemed to be very dismissive of my concerns, as in their case DS seemed well, so why worry. Apparently children's blood sugar levels can vary. And as they put it, if I hadn't seen the test results, I wouldn't have known there was any issue to worry about.

Each of the GPs did take a bit more notice when I pointed out that DS isn't ok, and we have been having new episodes of very strange behaviour since the summer term, which is why CAMHS were looking at a further drug. Yes, those symptoms could be a sign of blood sugar imbalance.

The 1.2 mmol/L reading may be a problem with the home device, we've been told to test again with a new strip, if we get a similarly strange reading. However, the full blood test results (non fasting, 45 min after breakfast) have come in with 2.2 mmol/L, now we've been shown the results.

Long and short of it, we are now referred by GP to a paediatric endocrinologist. My works private health cover should cover it (just sorting out paperwork), so should hopefully not be too long a wait.

Good luck.

I have 2 children who have autism (autistic features) secondary to a genetic mutation. Both experience significant low blood sugar episodes without warning or sense. They can have an episode an hour after eating, but have perfect readings after not having eaten for 12 hours.

I have the same genetic defect, and also experience the same blood sugar issues. We all carry something sweet to counteract a low, and all have a glucometer to verify if we are feeling "odd" but can't put a finger on it.

Both of my DCs also smell strange when their blood sugar is low - it is hard to describe the odour. That is a big trigger that they need to be checked.

We have found that cheese and crackers (or peanut butter and crackers) between meals does help to prevent the episodes. It doesn't take much, just a couple of crackers and a small slice of cheese will do. That, or nuts - the dietician told me that a small snack that includes fat, protein and carbs might help - fortunately, she was right.

As for the quetiapine, my oldest was started on it (and remains on a low dose) several months ago. She is more stable and on an even keel than she has been in ages.

We