The ongoing mystery of the 11 year old

Waaaaay back when my oldest was 7 I posted this very frustrated post:
https://allergic2motherhood.blogspot.com/2014/
Then a year later I posted this:
https://allergic2motherhood.blogspot.com/2015/06/blood-sugar-mystery-follow-up.html
Here we are 5 years later still dealing with the same mystery! After 5 years of monitoring and keeping track of things here are her current facts.

Blood sugar monitor is still used, only now we monitor it based on emotional state not time of day of diet. Diabetes and Hypoglycemia have been ruled out due to normal A1C numbers and no other symptoms.

Symptom 1: Feeling like walking super speed through deep mud.
Symptom 2: Amplified sound
Symptom 3: Food tasting like soap
Symptom 4: Moments of lost time and when she's alert again a random blurting of dream like memories will sometimes follow.
Symptom 5: Blood Sugar spikes of over 250 at peak of episode
Symptom 6: Dramatic mood swings and shifts
Symptom 7: Anxiety

Just this Christmas break her mensis began for the first time, which effectively proves the precocious puberty that was suggested back when she was 7 out of the water. We have been monitoring now to see if the cycle changes the length of time between episodes. So far with only 2 cycles we haven't noticed any correlation.

Back story: Miss D had a traumatic birth, she lost 75-80 percent of her blood volume before birth and the drs and nurses at birth did not diagnose this until her body had been low blood volume for nearly 30 minutes. She had full liver and kidney failure and clotting issues over the next 14 days. At birth the specialists told us we may or may not ever see any effects from the blood loss on her brain. She has proven very smart and with no apparent learning disabilities. She has shown some testing anxiety and worry, but that is more related to her emotional state than anything brain related.

This past November we had a short EEG study done. Sleep deprived and triggered her scan showed nothing of value. Only to have an episode that afternoon. grrr.

So now we've been keeping track of all of these symptoms and issues for several years. Her pediatrician has been TRYING to get us a neurology appointment. Trouble is we live in Hawaii, and of the 4 on island they are all over booked and one just left to return to the mainland, bringing us down to 3 meaning that no one has time to dig through a mystery situation. The Endocrinologists don't believe it's hormonal anymore so they feel it is outside of their perview. It's very frustrating. At this point our best diagnosis guess is Silent Seizures with Adrenaline spikes which mask as blood sugar as her body's way of fighting for the control back. Naturally that Adrenaline spike causes anger and frustration at any and all around her.

Today I put these thoughts onto the internet hoping that someone can help us find a solution or suggestion.

The blood sugar mystery

This summer while I was nearing the end of my pregnancy, I began to get increasingly frustrated with my almost 7 year old. She would be starving an hour before her meal times, and in that time she was teary and insulting, she would walk away stomping and singing under her breath about how momma hates her and never loved her. It was like she was trying to pick a fight with me. I just dealt with it, and realized if I gave her some food her attitude would instantly be better. I felt like such a push over because I gave in to her cranky. I figured once school started things would be better. What happened was it just became more dramatic. Just a couple weeks ago now, we had her school conference. At her conference we learned that this is happening at school too. All of a sudden things began to fall into place. There was more involved than baby jealousy and school getting harder. We went to the dr. The doctor and I both assumed that we were looking at a case of hypoglycemia where blood sugar drops dramatically before meals. He prescribed a blood sugar monitor and a set of lab tests. We've been charting her blood sugar now for a little over a week. But the mystery lies in what her blood sugar is doing.

In the morning when she wakes up after no food for 8-10 hours her blood sugar is still about 100. This is not typical. Then after she eats it drops down to 90. This is backwards. It should not be like this! In the afternoon after school it jumps to 130 then back down to the 90's after a snack, then before dinner it spikes back up to anywhere between 130-180. About an hour after dinner it will be back down to 100 or so. This pattern is not one I can find any information on. It is making me mental. The fits, Whiney, mean comments, attitude, and just plain nasty are symptoms of the high numbers. She had been especially cranky at me yesterday morning as we readied the house for our church to come over. Finally a lighbulb clicked in my brain and I tested her blood. 180. The highest it had been so far. She always tells me not to yell at her, when in fact I am talking surprisingly calm for someone who is being confronted by such attitude. I asked her if things sounded funny when she was hungry and she said everything seems loud and echos like a tunnel. The dr has asked us to watch what she is eating because her BMI number is high, but now to curb the attitude we have had to start feeding her more often. This is a problem because she always feels starving when she is like this so she over eats. Even if I try to control he portions it's never enough. 

If anyone has any ideas as to what is going on inside this little girl I would love to hear them. We go the results of her blood work today and everything was within the normal range. Dr. Was like it looks fine, lets just feed her more small meals. Then I told him the numbers we've been getting and how it's backwards and now he is referring us to an endocrinologist. I'm hopeing for a quick appointment date, but I'm not holding my breath as there is exactly one pediatric endocrinologist on the island. Oh joy.  That means there is no second opinion either.

Update: follow this linkhttp://allergic2motherhood.blogspot.com/2015/06/blood-sugar-mystery-follow-up.html