Mystery Solved

 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 it:

http://allergic2motherhood.blogspot.com/2019/02/the-ongoing-mystery-of-11-year-old.html

Well we finally found some answers, and it wasn't at all what we expected. We began testing for neurological siezures and found inconclusive nothings. BUT at least we had already done those and so when an opening finally was available at the neurologist we had a pile of paperwork to share and no answers. What the neurologist determined was that D had Migraine Variant Disorder. This means that she had been in pain virtually since she was 6 years old. Headaches without knowing that that was not normal. She grew up in pain and all of the other symptoms of migraines and she just thought this horrible life was what she was doomed to live. Living this way for so long caused the drop in self esteem we had seen and the tendency to be a hermit and avoid any location where headaches got bad enough to actually slow her down. 

As a mom there is not much more humbling than realizing that you missed something as simple as a headache all of these years. The reality is though her pain tolerance has always been high so she noticed the other symptoms of a migraine long before she registered the pain. She had also developed some anxiety issues over these years, because of second guessing herself. We started her slowly on some meds to prevent migraines. It didn't take long and we noticed a definative shift in her outlook on life and how our relationship grew. We fought far less, collaborated more, and really started to enjoy each other again. 

Her body is adjusting to the meds. We have had to up her dose several times now as headaches become more frequent again. The difference is that now she has pain free times so she really knows when the pain is coming back. The instant mood shifts no longer happen. Although she is now 13 and so any parent of a teen girl will tell you that mood swings are natural, but those mood swings have a predictable pattern and you can usually see them coming if you are paying attention.   We haven't completely ruled out silent seizures but we are more confident that we will be better able to see them if they do happen.

This is HUGE for our family and her friends. Our neurologist has moved off island and we know that we will have a revolving door of neuro specialists for her future, but we are so grateful for the ability to see these drs and have some answers finally.

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.