So, what? It's Strep Throat.

This past week I've had strep throat. To many people, that does not mean a whole lot. You go to the doctor, get some antibiotics and be done with it.

There is just a slight problem when it comes to me.

Because of my sensory issues, I am not able to explain to mom and dad that my throat hurts and that it feels like I have razor blades cutting me every time I swallow. Instead I get cranky and whiny. Also, because I suffer from allergies the symptoms are masked and it is hard to tell. It really is funny to hear mom talk to the doctor when he asks why we are there for what appears to be allergy issues.

"I am not seeing any symptoms other than what appears to be allergies, why are we here today?"

"He's sick."

"Why do you think so?"

"Try living with him."

I imagine only families with kids that have sensory issues would fully understand that conversation. Because at the end of the conversation the nurse stepped in and relayed to the doctor that the strep test came back positive.

Then this leads to why strep throat can be dangerous for a child like me.

  If untreated, strep throat can sometimes cause complications such as kidney inflammation and rheumatic fever. Rheumatic fever can lead to painful and inflamed joints, a rash and even damage to heart valves.  - MayoClinic.com

 See, I have a bicuspid aortic valve with stenosis that leaks already. The walls of the valve were already thickened when I was born. You say you thought I had surgery to repair my heart? Oh, I had closed heart surgery to repair my aorta. The part of my heart they repaired was outside of the main muscle. I had a CoArctation of the Aorta that was repaired with the subclavian flap, a technique where they used the artery that led towards my left arm to provide tissue for the aorta because it was too narrow for blood to flow through to the rest of my body.

I apologize, I digressed slightly. Strep throat can be dangerous in anybody that has a heart condition, especially a person with a problem with their valves. Obviously, the strep would have to progress in to rheumatic fever. The key is to stay healthy and as soon as symptoms present get to the doctor. With a sensory processing disorder child, it is not always so easy. In that case, there needs to be an understanding from those around the family that the child's health is extremely important. Rheumatic fever can lead to heart attack or stroke.

We do not share this information to fear monger. It is for enlightenment. At our house, my mom and dad pray over us and before we go to the doctor we are prayed over. Mom believes in us eating a healthy diet and getting plenty of exercise. All of these things promote health. Unfortunately, sometimes I get sick. When that happens, I go to the doctor and take medicine. It is not the end of the world, but if it takes longer than normal to get over something then my parents get concerned. Their concern isn't because they doubt God, it's because they love me and don't want me to be sick.

One Day At A Time...

Seems when yesterday's post was made we were not finished. Last night after dinner, Benji's sugar did the roller coaster again. We do not know why it is doing it, and in fact it's doing it already some tonight.

Benji being his cute self... as Iron Man

Called the doctor about it and given the weather conditions and that we have it pretty much under control, we are going to wait. It isn't a critical issue unless the sugar level goes under 60 and we aren't letting it go below 70. The one thing we think might be doing this is a growth spurt, but if that is the case it makes me wonder what we are going to do once we reach puberty!

Hopefully after tomorrow, our road will be clear enough for me to be comfortable driving. It is within a mile of the house that it is bad, once we get out as long as we stay on the main roads they are in good shape.

We wouldn't mind prayers for Benji. After surviving the surgery for CoArctation of the Aorta and thriving with a bicuspid aortic valve, hypoglycemia will not be an issue! I refuse it!

We will just take it, one day at a time.

No such sweetness - hypoglycemia

One of Benji's medical conditions is ketotic hypoglycemia. This diagnosis was received December 2007 after he had an episode that resulted a trip to the hospital. The ketotic hypoglycemia is a diagnosis of exclusion. The doctors know that Benji's sugar levels bottomed out (that time it dropped to 22) and that there were ketones in his urine. However when they did the fasting test, they were not able to get it to happen again.

Since then, there have been little episodes where Benji's sugar will dip. Like during the summer when it is hot and he is sweating, if we don't keep an eye on him his sugar will drop and I get a very sick kid. During the winter the problem usually stems from Benji getting a bug and not eating well, then at night his sugar will dip.

Last night was one of Benji's episodes. I missed one of his warning signs before we ate sandwiches for dinner. That sign was the VERY sweet breath he had. He didn't have the lethargy he typically gets, or even the crankiness. Although he was very set in his ways.

About an hour after dinner he came to us saying that he was 'starving' and that he would 'die if he didn't eat.' Immediately we were concerned and checked his sugar. It was 78. This is not a dangerous level, but since he had eaten an hour prior it should have been in the mid to high 90s. We fixed him a ham sandwich and got him some juicy juice. An hour later it was 122. The spike is what I was concerned with, because sometimes sugar levels will spike up and then drop.

 We asked for prayer when his sugar was 78. And we thank everybody that prayed last night. When I checked his sugar at 12:30a it was at 98. We praised God and went to sleep. This morning he is fine.

Endocrinology Update

Okay.... got up really early this morning.... (5.30am) got everything together and Benji ready to leave by 6.30am. Jeff was wonderful and started the truck so it wasn't completely frozen. Drove into Children's through rush hour traffic and got there at 7.45.... then I had to find a parking spot the expedition would fit in.

So... get Benji's bag and then my bag and I was pleasantly surprised that Benji was awake... he got to walk.... got in and rode the elevator up. checked in and he realized he was VERY HUNGRY. Tried to calm him but he wasn't having it. Finally got called back... did blood work that he was not happy about... and waited for the doctor.

With out the lab results, they think it is ketotic hypoglycemia. Good thing is he should out grow it by the time he is 7-9. Bad news we will have to check his blood and keep an eye on him, especially if he gets sick. We will have lab results in 2-3 weeks.

After all that Benji got to eat and we went to the Pizza Hut in the hospital and while we were there Santa and the Mrs, were there doing pictures. (I will upload it in a bit.)

Now... home for a short rest and then I get to grab Britt from school and take her to the pulminologist.

I need a rest... at least Benji seems to be doing well. He slept all the way home and the visit at Nana's.

This Morning...

Benji is still asleep, but we went ahead and checked him since it was time for meds. His blood sugar was 83, He was also sweaty. So, gave him his meds and some koolaid hopefully that will keep him up.

Me and my researching, I found two things of interest. 1) There is a link between hypoglycemia and propranolol. It is typically in behavioral treatment cases, so I don't know there. 2) The other thing of interest is Ketotic hypoglycemia. Benji's symptoms match it quite closely. The seizures when it dropped. He didn't eat dinner Friday night and got up hungry early Saturday morning asking for bread. Since then he has seemed peaked and we are having the vomiting. Both Sunday night and yesterday morning when he threw up his sugar was in the lower 80s. Which stereotypically that shouldn't mean anything except both momma and papa get the cold sweats and dizziness in the low 80s. So... it's a thought.

I think this is gonna drive me crazy before Monday. I don't like the feeling of not being able to fix it right now. I mean shoot, we just got the stable heart a month ago. We are suppose to be able to relax right? And I know that God is in control and I know that Benji will be healed. My hang up is I want to know when and I want to know how. And I want to know what is going on. Which I know.... God is in control. I have to accept it. I need to give Momma Bear a Valium. LOL...

It's not over yet....

Okay... so Saturday was the seizures and the ER trip.... That night Benji seemed to be okay, but tired. I would think that is to be expected with all that happened.

Sunday morning we got up and Benji was a little pale looking but other than that seemed to be fine. So we went to Worship Service at church. Figured we would just keep him with us. After the 2nd or 3rd song, he grabbed my hand and pulled me out of the pew and went towards the nursery. So we let him go based on the belief that his stuff going on was just his sugar bottomed out. After church we ran to Walmart to get prescriptions and then also snack foods for him. He seemed to be getting overloaded again... I really think it's walmart on that one.. and by the time we got out to the truck he was looking quite tired. He fell asleep on the way in to home. He slept from 1:30-4:30 and actually longer than that. It was closer to 5:30. Then we had the Christmas Program that Allie, Brittany, Josh and Micah were in. He got too fidgety during the program so Jeff took him out. He snacked alot on pb&j crackers, smarties, teddy grahams, and his juice. (I know... too much sugar... I did have other things with he just didn't want them)

On the way home from church he threw up... it STUNK!! Very sour and mostly liquid. Threw him in the bath tub when we got home and he then had a HUGE BM. I figured he was backed up (hadn't pooped since Thursday) and that was why he did both, vomited and the big poop. No diarrhea, just alot of poop. So... he setlled down, I checked his sugar level in the middle of that at it was 84. That was after he threw up the first time. I say that because vomiting can drop the blood sugar.

About an hour later he climbed into bed with me and a little while later he sat up and started throwing up again. And again... and again... Jeff grabbed him and got him in the bathroom... and he threw up again... Cleaned up our bed and him and he went to sleep happily.

Monday morning Benji got up about 7am and got his meds an hour late. Checked his sugar then (before meds) and it was 105. He asked for drink so we gave him a little bit of koolaid and he wanted bread to eat. He had two slices and then crawled back in bed. He fell back to sleep. At 9am I called the dr's office and set an appointment for 11a with him. Benji slept until we got there.

Once there he started waking up. By the time we got back in the room, Benji was literally bouncing off the walls. Talked to the doctor and explained the symptoms and everything. While he wished that Horizon had done at least an EEG, he felt there were no tests that he could run right now. He assured me that we would attempt to find out what is going on. He then cited that with Benji's runny nose that he could just have a virus and that is what caused the vomiting. He also reassured me that if anything else happens to call and he will do what he can. Also that if Benji's sugar went below 80 to call. He also told me worst case is a glucose problem. Seizures can be treated and possibly grown out of. Hypoglycemia is for life.

So... at the doctor's office Benji snacked on fruit snacks, had a chocolate chip granola bar and koolaid. Went to Nana's house where he got more drink. He also ate some cheerios. At Nana's he was mostly relaxed. He did hurt Papa's ears a couple times with his squeals. Most of the time we were there he was lying down though.

Last night he seemed to be okay. He had another granola bar and then for dinner had some french fries and a grilled cheese sandwich. He was asleep by 7:30.

Then... we were awakened this morning at 4:58a to him throwing up. Several times. Checked his temp... normal. Once he stopped throwing up and we were able to get him to calm down we checked his sugar. It was 83. Since then he has eaten applesauce and peanut butter crackers, along with some koolaid.

He has speech today at 11, so... not sure what else today will bring. Hopefully the throwing up will just be a viral thing and go away now.

Bad day today

This morning I was woke up to Benji having seizures and turning blue. When he had his six o'clock medicine Jeff had said he felt a little clammy like maybe he got hot while sleeping and started sweating and then got cold. So he put him in the bed with me. An hour and 15 minutes later I got woke up to Benji stiff as a board and muscles spasming. We called 911, they argued about who needed to respond (we are in the middle of two districts) then 10 minutes later called back for directions. Meanwhile we got Benji to start breathing again and the blue started going away but still gray. It was shallow breaths and still seizing. The first responder got here with an oxygen tank about 20 minutes after the call. Another 5-10 minutes the first responders and then the ambulance got here. Girls it was so scary. I thought I was going to lose my baby.

As soon as they got him into the ambulance they checked his blood sugar, it was 21. Which is so not good... if mine hits 60 I am passed out. Because his sugar was so low and he was having the seizures they gave him a Valium and we went to the local hospital that I do not like. After there for about 4 hours they sent us into Vanderbilt Childrens. Vandy checked him out and gave him food and drink, set up an appointment with the pediatric endocrinologist for the 17th.

We are now home.... and I never want to ride in a ambulance again. we got from Horizon in Dickson to Vandy in Nashville in about 20 minutes... it's normally a 45 minute drive. And you can imagine traveling that fast the bumps were horrible... Benji would start to fall asleep and we would hit a bump. Poor fella...
Benji is calm, he still is weak and he looks like he don't feel well. We have to make sure he eats every 4 hours and before bed complex carbs.. (i.e. peanut butter and jelly sandwich)

So... tomorrow we are getting the glucose meter from my SIL's sister... she just happened to get a buy one get one free this past week. (Thank you God) And it has everything with it. We are hoping to make it to church, we really felt the power of the Lord over us from our church family. While we were waiting for the ambulance I had called my mom and they rushed over here only stopping to call my SIL. Once here, my mom went two doors down to the neighbor that also goes to our church and got her on the phone to call everybody. It is so awesome to see the body of Christ lift each other up.

Please just pray that we find out what is going on. The hospital has diagnosed him with hypoglycemia... both me and my dad and one of my brothers have it. So it didn't surprise me until we found out that it is EXTREMELY rare in young ones. Then when Jeff was talking to the pdoc the pdoc told him it was either he had hypoglycemia or a seizure disorder that was also very rare. So please... just pray for my little guy. We know he's tough, but momma can't handle these scares.