Sleep, precious sleep

For those that have known me, it comes to no surprise when sleep issues are brought up. I don't sleep. Or, perhaps I should say, I do not sleep much.

Up until a few months ago, my sleep didn't really matter too much. I was getting enough rest to go to school and do my work. I was a pretty good kid with some hyperactivity and a few quirks.

Then the headaches/migraines started up again. (I say again because I had a flair last spring, but it only lasted about two weeks.)

This headache/migraine flair has been going on since the middle of November. There are a couple of ideas floating around as to why, but we started with keeping a diary. Turns out in the month of December I had 11 bad headaches. (This is not good.)

I went to the doctor yesterday. Mom pointed out the fact that I don't sleep and asked if that could have an impact of my headaches. While at the doctor's office, I was bouncing all over the place and talking a mile a minute. The doctor thinks my sleep problem may be causing other issues with me, based on my behavior.

So, starting last night, I am on a tight regimen at bed time in order to get me to sleep. We do realize this may be quite an adjustment, but in order to get everything else under-control, effort now will be worth it.

My new regimen is the following:
• 8:00 Bath time w/ lavender epsom salt
• 8:10 Sleep meds
• 8:20 Laying down in bed with a book or TV on quietly.
• 9:00 Lights out
Prior to my bath, my room has to be cleaned up and school work done. It worked last night. I was asleep by 8:45 and I felt so good this morning. I hope that once my schedule is set I will be feeling a lot better.

Being a SPD kid can add its own quirks to the equation to. This just means that we are grabbing hold and hanging on during this ride.

Oh, we did talk to the cardiologist about my headaches when I went for that check up two weeks ago, she is of the opinion that my headaches are not related to my heart at all.

Annual CHD check up!

Today I went to my cardiologist, Dr. Hermo at Children's Hearts in Nashville.  We got there a little early, but I didn't mind. I knew mom needed to allow time for traffic and everything since Nashville can be crazy at times.

My oldest sister came with this time, but she pretty much stayed quiet. I think she just wanted to get out of the house. And she sure did not want to get caught in a picture.

Anyhow, we ended up getting there about thirty minutes early which I guess is better than being late. That was fine with me, I brought my LEGO Ninjago: Character Encyclopedia with me plus there was the fish tank and a few toys there to play with. Which, as mom skillfully captured, I had to fix the blocks. Can you believe somebody had mixed the colors up? I of course had to put them where they belonged.

 Once we were taken back to the exam room we had to wait a few more minutes, but I was able to humor myself there too.

So, for review... At a week of age I had a subclavian flap repair for CoArctation of the Aorta and to take care of the patent ductus arteriosis. In addition to that my Aortic Valve is bicuspid with stenosis.

 There are a few things that Dr. Hermo does to make sure my heart is working well. She starts with a basic exam that involves listening to my heart and checking for my pulse in the extremities, that tickles sometimes. After that she checks my blood pressure, which was excellent (87/62). Then she uses the pulse oxymeter to measure the amount of oxygen in my blood and my heart rate which oxygen was 98% and pulse was 76, although I was wiggling my finger. I did not like the machine she used this time because it is the one that clips onto your finger and I thought it was going to pinch me.

After that, I went and got measured. I am 4ft 6in and 65lbs. Mom asked where I am hiding my weight.

Once that was done I had an EKG(?) where Dr. Hermo put 10 pads and wires on me and this machine printed out some lines. I did not like the way the pads felt. They were gooey and sticky, that made it hard to stay still for the machine to get the information it had to get.

After that I had the echocardiogram, which is an ultrasound of the heart. My aorta was checked to make sure everything looked good, which it looks beautiful! And the valve was checked to make sure there were no significant changes. Current diagnosis is mild stenosis with negligible change from last year. Treatment is to continue what we are doing and if any symptoms show up call. Other than that, we go back next year.

Praise God for another awesome year!

Been Awhile

Wow... it has been a long time since I have updated here.

We are coming towards the end of our Summer Break. We have a little over a week to go and then everybody goes back to school on August 3.

Benji is moving up to the 4 year old class room in the developmental preschool. He has made much improvement in all areas, although he is still considered globally delayed.

In June we under went standard developmental testing along with autism screening. The doctor believes that Benji is more at risk for ADHD combined type than anything else. As the primary caregiver and mother of Benji, I disagree. The doctor believes it's the ADHD because Benji's attention span lasts about 20 minutes. Also because Benji has a hard time adjusting to schedule change. And when Benji is over-sensitized he gets hyper and has meltdowns.

Benji has sensory integration disorder. He is very tactile defensive. He is also sensory seeking. Examples... eating pancakes and Benji gets syrup on his hands, he has to get it washed off as soon as possible. Benji enjoys 'crashing' into the wall, or falling. We handle his sensory stuff by doing exercises. He jumps on the mini-tramp, swings in the sling swing, swims in the pool, body massage, bouncy ball, and stretching exercises. When doing things that will set off his tactile defensiveness we keep it to a minimum and at meals keep a damp wash cloth handy.

Benji also has food intolerances. His is VERY lactose intolerant tot he point we avoid lactose, casein, whey and anything that hints of having to do with cow's milk. Benji can not tolerate food dyes, specifically red 40 but others are suspected, we just discovered another chemical that sets him off too. (azodicarbonamide) His reaction is extreme hyperactivity and moodiness.

It has been known for quite some time that food intolerances can mimic ADHD. So why, when a child has known food intolerances are they still quick to point to ADHD?

I am disheartened right now when it comes to doctors listening to parents. I know my child. I also know that there is something going on. For now his labels are global developmental delay ~ NOS ... The Sensory Integration is I suppose an informal diagnosis now.

Our other concern with Benji right now is that we notice while he is sleeping there is a lot of restlessness. Normally that wouldn't bother me because I know little ones can be active in their sleep. But that combined with moments throughout the day where he just stares off has me concerned. Working on getting in to the doc... again. Praying the suspicion is wrong.

Roller Coaster

We been going through a roller coaster (little one) for the last couple of weeks. I was so excited when Benji's pediatrician finally saw what we were talking about with Benji that I lost my mind. Okay, maybe not completely... but I did forget to follow up with the developmental pediatrician.

I found myself a week after the appointments, with no follow ups scheduled. So of course, I had to start emails and phone calls.

Benji goes to the Food Allergist on April 16th. It's in Franklin, but I figure if we can get answers it will be good. It would be great to know if he is outright allergic to things. We know the digestive problems with cows milk. We know the hyperactive reaction to anything with red 40. We avoid high fructose corn syrup due to his hypoglycemia, we also try to limit other sweeteners. I still have pages to fill out for that appointment. (I love paper work, at least I make copies after I feel things out now.)

Finally got the call back yesterday about developmental testing.. It won't be until June 16th. That has it's pluses and minuses.... I am suppose to have his teacher fill out a questionnaire on him close to the test date. We get out of school at the end of May... hopefully it will be good enough.

I believe Benji is about to hit a growth spurt, his moods are erratic and he is sleeping alot more than normal these last couple days. He just got off of antibiotics too... He had strep. Little guy always keeps us busy.

The Good, The Bad, The Stimmy! Pt 2

So... the last post was about our visit to Vanderbilt Children's CDC and seeing the developmental pediatrician Friday. This post is about Monday's visit to our regular pediatrician for Benji's well check.

I feel I need to note that at the CDC Friday, Benji was VERY well behaved.

Obstacle #1 Monday.... "I wanna stay home and play Batman."

Obstacle #2 ... "I don't want to go to doctor, I wanna stay home."

These were the first two hints that I was going to have a very enjoyable morning.

Loaded the young master into the Expedition and buckled him in. Hopped in myself and we began the 24 mile trip to the pediatrician's office. (We live in the sticks... to get a doctor with permissions at Vanderbilt, he's the closest.) The trip in was rather uneventful until we got in close the the office... then it starts.

"I wanna go home." "I wanna play batman."

I had forgotten that a few weeks ago they had a lesson week on doctors and dentists. I had forgotten the relief on his face when he accepted that Dr. Cooper wasn't that kind of doctor... you know, the kind that give SHOTS.

We get in and we check in. Uneventful. Then nurse Tammy comes and gets another child and it starts...

"I dun wan shot momma."

Of course, I came up blank and couldn't remember if any were due. (I am one of those mom's that don't believe it was the vaccinations that caused Benji's problems... with everything else going on, I think it was always there.) So I told him he probably didn't need any today. I had even resolved it in my mind that we wouldn't get them then, if he needed them we would come back another day.

So that was the waiting room.

Then they call us back. It was a different nurse that we didn't know, but Benji seemed okay at first. It was time for a hearing test. I laughed inside as I realized what he was doing. See for the hearing test he had to wear the headphones and have the button to push in his hand. He would hear the sound and push the button but then keep pushing the button like he was flying an airplane or a fighter jet. It was cute. The nurse didn't appreciate it.

Next was height and weight. The young Benjamin is 39 pounds and 41 inches tall.

Next was vision. This was fun. He couldn't stand still... He was wiggling everywhere. He was still able to read the chart though. I finally got him to stand at the right spot (still wiggling) and he told the nurse every single shape on the next to the last line. And the first 4 on the last line.

Once we got into the exam room we did the blood pressure which was 94/60 on the right arm. (Arm is important since he had the surgery on his aorta.) We went over his history and concerns and then waited for the doctor.

While we were waiting, we had to strip down to undies. He wasn't too crazy about that. It was then that he decided to jump... off the exam table to the floor. I caught him just as the doctor and a fellow came in. Benji was wild. Got him back on the exam table and he grabbed the 'flashlight' from Dr. He started examining himself... It was funny until he dropped the light.

Dr was asking about the concerns with Benji's eating (lactose/casein intolerance, red 40 sensitivity, MSG sensitivity/intolerance, the hypoglycemia) his pottying (even though I try to keep him in undies we do have a lot of accidents.) and then Dr brought up about the CDC and such. I explained how that went.

Through the conversation Benji would interject random things about Batman and shots and siblings, and school, and.... you get the picture. He was also being wiggly and giggly.

When it came time to the exam, I actually had to hold Benji so that Dr could do the exam... Mr Tickles...

Physically Benji is doing great. His height has jumped up to above 95% and his weight is right at 90%. Which is good considering his heart and then the hypoglycemia. He is growing, and thriving.

So... as we were talking and Dr saw this wild thing in his exam room he asked me similar things as Dr. Cooper. And came to pretty much the same conclusion. We may be looking at a 4yo with Asperger Syndrome. This is the first time that Dr has entertained the thought. It may have to do with the existing diagnosis of Sensory Integration Disorder.

So we are waiting for an appointment referral to a food allergist/nutritionist.

All and all the visit was good. Benji has progress. And we are taking steps to narrow down what is going on.

The Good, The Bad, The Stimmy!

So, Benji went to the Child Development Center at Vanderbilt Children's for his suppose to be yearly developmental pediatric visit. His last visit was 18 months ago when he was diagnosed with the Disorder of Childhood and was referred over to Vanderbilt Bill Wilkerson to be checked out for Sensory Integration Disorder which he was then diagnosed with.

So, Dr. Cooper was glad to see us and reviewed Benji's progress with me. Or.. I should say I shared Benji's progress.

• His Speech is almost completely caught up. He still has some articulation to work on and he needs to pronunciate better, but he is a talking machine once he gets going.
• His fine motor skills are nearly on par. It's more of a stubbornness problem than not being able to do something. (i.e. He knows how to hold a pencil/crayon but chooses not to do it right)
• Gross Motor is improving. He still needs to strengthen his core muscles and we still need to work on those ankles.
• He is off the blood pressure meds for his heart. It's will be a year in May!
• While he does have low sugar episodes, we catch them quickly and he recovers fine. Mostly happens when he has been playing all day outside and doesn't want to stop for anything.

Dr. Cooper appreciated my knowledge on what was going on. Which this is a soapbox of mine... Do parents just not pay attention to their kids? I mean really. Benji has some medical issues, so I do the research and I do what I can at home to help him. That's how we realized it was the cow's milk that was causing the colic when he was little. That's how we discovered the sensitivity to red 40. (OH MYwas it wonderful when we got rid of that! The hyper activity disappeared!)

Anyhow.. so Dr. Cooper thinks we should do pretty much the same testing we did last time and see what comes up. His non-official opinion is that Benji is either a quirky 4 year old or we are looking at Asperger Syndrome. This does not surprise me at all.

• Ridgidty ~ Must have schedules. If normal routine changes he gets very non-compliant with anything. It completely disrupts him. (eating, sleeping, pottying, mood, etc)
• OCD type ~ While this isn't as bad as it could be. Benji is very particular about how things are. If he puts something somewhere, it had better be there when he gets back. Things also have to be 'just so'. It's hard to explain... would you like to come over and see one day?
• Obsession ~ for over two years the only thing Benji wanted was Cars. You know Disney Cars? It is still an obsession and he has moved to include Hot Wheels, Wall E, and Transformers with it. They are all mechanical and he loves to "help" work on the car or just to help with tools in general. He is also now obsessed with video games (PS2)
• He is very sensory seeking. The deep pressure type. He loves getting in his sling swing all cozy and swinging. Also jumping on a trampoline. When he is seeking he will throw himself on the ground or against the wall and laugh.
• While exercises have helped he is very tactile defensive. He will play in finger paints now but he doesn't like it and the second he thinks he is done he wants his hands cleaned.
• Can't stand to be sticky, slimy, itchy, etc.

So... that was the visit with Dr. Cooper. We are waiting for the call to get the testing done.

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.

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.

Once again.... he got to sleep while I drove...

The evaluations went well... Benji was asleep when we got there and a bit on the stubborn side but for the most part, he cooperated. He did show his tantrum side and he did get overwhelmed. The appointment was at 1:30, we were called back about 1:45 and I was leaving the Vandy parking garage at 5:22. He leaves with no diagnosis. They HIGHLY suggest OT for his sensory issues (oral and tactile along with the vestibular, he loves to spin). He could be considered for PDD-NOS except he is too social. He could be considered for Asperger Syndrome except he has the speech delay. (He was diagnosed in June with Speech Apraxia) Neither have been thrown out. They do believe he has a form of OCD. (Things have to be just so, he obsesses on certain colors and order, he is repetitive but not a certain amount of times) And they have said his hyperactivity may be an indicator of ADHD in the future. So... there is no official diagnosis, but we will be getting more therapy. They have also told me to call once he transitions to the school system out of early intervention if there are ANY problems getting him the help he needs.

All in all it went much better than it could have. Although Benji was over stimulated both days, he calmed down quickly. I believe it was because he got the flu shot Monday. He's been snotty and sleepy since so it helped me. And thank the Lord I do not have to go back into Nashville until Monday.

Benji's trip to the Cardiologist

After falling asleep on the way in to Children's Heart, Benji was more than content to stay asleep.

He stayed asleep until it was time to do the pulse ox. Little man's feet are ticklish. Anyhow his oxygen level was 93-94% pulse 122.

His blood pressure readings were high but that was because he was upset and crying about it. Not even Elmo could calm him down.

The ECHO went good. Benji cooperated mostly and all measurements were made.

So, I guess you want the news huh?

Praise the Lord!! Rejoice! His aortic valve is stable.

Flu Shot

So, we went to the Dr. today to get the annual flu shot. It was rather uneventful. Thank the Lord!

=]

He cried when he first got it but then was fine. I think he was more upset because he had to stay still than getting poked... LOL