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.

Totally Out of Sync

While dealing with the insanity with a school system that we are frustrated with, we noticed that Benji was having a whole lot more sensory related behavior issues. He was being VERY whiny, sensory seeking, sleepy and not wanting to eat. The not wanting to eat, we contributed to his allergy medication. He takes flonase and if he takes it straight for more than two weeks his appetite wanes. That did not explain the rest though.

Tuesday morning we made a sick visit appointment for Wednesday afternoon thinking we should get him checked before the holiday but not in a rush because there was no fever.

Benji got to the doctor's office and was all over the place. In the exam room he was climbing and jumping and "crashing" and ... you get the picture. The doctor comes in and we go over everything. Benji had a low grade fever of 99.3, his ears and nose was clear and aside from a little irritation his mouth/throat was good too. Blood pressure was good (100/68) and even though he had a mucus-y cough his lungs were clear.

So Dr. talked with me for a few minutes and I shared that in Kindergarten the "Slap Cheek Measles" was going around and so was Strep. Dr. didn't think it was strep but with Benji's aortic valve he figured best to check.

Benji has strep.

Doctor - "Why do you think he is sick?"
Mom - "He is out of control with his sensory issues."
Doctor - (after getting test results back) "You might be on to something there."

Slowing Overcoming...

So, Benji still has the cough with the flu. He's been fever free since Saturday. Slowly getting better. Couldn't tell he was sick during the day. It's at night that it all catches up with him.

The down side to this is that he missed the last two days of school before fall break and we are out for two weeks. So those of you with sensory kids can understand when I say it's been rough!

Being sick, schedule changing, not able to play outside cause it is raining, etc... is driving him crazy! So glad we found the Sonic collection at Game Stop last night for the PS2. It was only $12. So at least he can focus on playing it and have something to do.

We go to the dentist tomorrow for the regular check up/cleaning. I pray all will be okay there. He is oral defensive. Doesn't really like us messing with his mouth.

Getting Behind

I am so sorry I haven't updated in a while. It's been crazy.

For the first time since Benji was born we had to go to the doctor for a sick visit that put him on meds. It was a sinus/ear infection so nothing major. Thank God. The same day big brother was diagnosed with Strep and Scarlatina. This is dangerous for Benji because Strep can go into Rheumatic Fever and affect the heart. (Benji has a bicuspid aortic valve with stenosis already)

So we had that to contend with and lots of other family stuff going on.

Today Benji has his yearly IEP at school (he attends preschool for special needs kids so he gets his socialization and therapy 3 hours a day, 3 days a week.

I am praying that it goes well. I never got the notes and recommendations from the OT he was going too and I don't have anything in writing from the PT that he is still going to. *sigh*

I'll post later to let you know what all goes on. I know that after his birthday he goes up to 4 days a week. (The days are based on age. 3yos go 3 days a week, 4yos go 4 days a week.)

~ Faith

Set Backs and Improvements

Benji has had a hard couple of days lately. This past week was a bit overwhelming for him with Christmas parties and decorating and such. He never responds too well to things being different. Wednesday one of his sisters stayed home from school and then another came home early while he was at school. He got very cranky with that.

Off and on the last two weeks Benji has had minor congestion and a dry cough. Thursday it got to be a wet cough and his sugar took a dip without wanting to stay back up. The lowest it got was 73... but considering below 80 is hypoglycemic and he has ketotic hypoglycemia... I was the concerned mom. Made sure to keep his food and beverage intake written down and his outputs too. This is when we realized it is quite possibly a tummy bug with loose BMs. Called the dr and the nurse said that he needed to come in Friday, but if the sugar went below 60 to take him directly to the ER. Friday his sugar was fine but still having the loose stool. Dr said to make sure to feed him complex carbs and that he didn't feel there was really anything we needed to do right now.

Yesterday was bad... the cough got very moist and congested sounding. (Benji can't take benedryl because of his heart stuff) His sugar levels would dip but for the most part we were able to keep them between 90-120.

Last night was awful. He made Micah's croupy cough sound like nothing. Put some vapor rub on him and the texture and smell bothered him until he passed out asleep. (He was so tired that the relief it gave was better than complaining about the senses going crazy. Poor guy.)

Today we are monitoring the cough and his sugar level... he's staying between 75-91 even after eating. He has diarrhea, thankfully we have pedialyte pops. Stayed home from church so I can keep a closer eye on him.

In staying home Benji has been playing Sonic on the old Genesis... he loves it. He's doing good with the hand eye coordination. Trying to get him away from the video games I pulled out his Bilbo for him. (It's a great toy... there are so many different uses) He sits in it and spins like nobody's business. While this typically should be a surprise... Benji has hypotonia... his core muscles are weak, it's the reason he goes to physical therapy. He spun! He did it!

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.