Sugar problems

Ronan is back in the hospital.  Tuesday night my mom was watching him and he started stumbling around and acting funny.  She's diabetic so she checked his sugar with her monitor and it was 39.  After drinking some juice his sugar level stabilized and he seemed fine. The next morning he woke up energetic and ate his breakfast.  Around an hour and half after breakfast his sugar dropped to the 30s.  I called his Endocrinologist to inform her about the new sugar lows.

She advised me to increase his protein intake to stabilize his sugar for a longer period of time.  Since he can only have pureed foods she suggested I get him some Greek yogurt because it has a lot of protein.  She couldn't figure out why his sugar was dropping after eating especially since he was on the pediasure and they often give that to diabetic babies to keep their sugar up.


I did what she requested and increased his protein.  By Wednesday night he was having another sugar low.  I gave him juice and he laid down on the floor and his left arm began to jerk.  After it stopped I checked his sugar and it had gone back up. By this morning (Thursday) he woke up once again fine.  He ate yogurt for breakfast and I had to leave to get Xander to an appointment.  My mom was staying with Ronan.

When I arrived back home She informed me that his blood sugar had been 21 and she had given him 4 ounces of juice and a half an hour later it was just 23.  She gave him another four ounces and a half an hour after that it was 29.  I called his Endocrinologist and told her what was going on and that we couldn't raise it.  She told me to get him to the children's hospital right away.  My mom fed him Greek yogurt while I was on the phone and when I got off he was clapping and happy.  I took him into the Children's ER and his sugar was 115.  They put his IV in and he didn't even flinch he was so tired.  They checked his sugar and it was 80 so they started him on a sugar drip since it was dropping so quick.


Tonight they informed me they think he has a rare metabolic disorder that I can't remember the name of.  They told me the Endocrinologist would be by in the morning to explain what this meant and about the testing involved in confirming this diagnosis.  The entire day he kept his sugar level stable.  He ate dinner and had pureed beef, yogurt, pediasure and carrots.

The nurse checked his levels around 9:00 and he was 109.  Around 10:00 I heard him make a squeaky sound and I looked over at him.  he was jumping with each squeak.  It looked odd enough that I called the nurse and she was in the room within seconds.  We flipped him over so she could get a pulse ox on him and she left to get the glucose monitor.  He started jerking his arms and upper body.  I tried really hard to get him to respond but got nothing from him.  His eyes were rapidly opening and shutting.

The nurse came back in and saw what he was doing.  I asked her if he was having a seizure and she said she didn't know but got the on floor doctor.  She came in and confirmed he was having a seizure.  His blood sugar was low again and causing the seizure.  The doctor told me as soon as they got his blood sugar up the seizure would stop.  They gave him a load of sugar through his IV and then ordered a more sugar concentrated IV drip.  The seizure lasted 3 minutes but it felt like longer. 

He is now on a lot of sugar through his IV and he is now on a very low protein diet.  The disorder they think he has would cause his body not to process protein properly and so protein causes the low sugar.  Which means as long as he remains on a low protein diet his sugar should stay up.  This is why he got worse because we had increased his protein intake as normally that would keep sugar up.  This is also explains why he dropped while still on the sugar IV drip because he had had a lot of protein for dinner.  Now he can no longer have pediasure or yogurt.  Before he was put on pediasure his weight was dropping and he wasn't growing.  So I'm not sure how they will compensate now.


Also since he can only have pureed foods it makes our choices very difficult but dietary is coming in the morning to help me make a plan for him.  The Endocrinologist will also stop by to tell me her plan.  I was also told the arm jerking I saw at home was probably a small seizure.  He is going to be here for awhile.  He will not be going home until he can stay off all IVs and be on his at home diet and not have a single sugar low.  I'm not sure how long that will take but we will be here until he meets all of that criteria.

I think it's sometimes easy to forget how all of this affects the other kids.  Inara watched Rona fall to the floor today when he had his sugar low and she saw how concerned Grandma was.  My dad was sitting on the couch and she crawled up into his lap and said "I'm scared.  I'm scared."  Then tonight when I came home to get my stuff she said "Mommy, MoMo" (her name for Ronan) and then she pointed to the spot Ronan had fallen to.  She is very perceptive for 17 months and I feel bad she is still trying to process everything after several hours and it still worries her.  

Hopefully tomorrow we'll have answers and they'll be able to figure Ronan out.