Results!

The doctor called with the results of Elijah's genetic testing. It seems that he does metabolize some of his meds differently than others. This means he needs a high dosage of these medicines, which he is already on. The doctor said that it explains why he needs these larger doses that other people don't need. She doesn't want to change any of his medications at this point, but we had already changed one of his ADHD medications by increasing it. We go back on Feb. 2nd to discuss how he is doing. I am not sure if she will want to make changes then or not. Overall, I am glad we did the testing. It helps explain why he needs these larger dosages of medicines. Hopefully we can continue to use this information to assist with future decisions.

Genetic Testing

I took Elijah into his doctor today for genetic testing. The nurse swabbed both of his cheeks and will send the samples off to the company to have it tested. The testing will show which medications Elijah's body metabolizes better so that the doctor can decide which medications to try with him. It will cost around $300 and I think it is worth a try. Right now he is maxed on some of his medications and the doctor wanted to try a new ADHD medication for his impulsivity, but what to try? It is a guessing game. She did up his intuniv medication by 1 MG and we will see if that helps. We should have the results next week and they will call me to discuss them. Another parent had mentioned genetic testing at the Tourette Syndrome Support Group meeting back on December 12th and said that the results had really helped with medication decisions. I am hoping this helps the doctor to made future decisions about Elijah's medication.  Elijah takes medication for OCD, ADHD and for his tics, and it is always hard to know what is helping him and what isn't. I'll keep you all posted!

Our Christmas Break

Elijah and I are off for two weeks for Christmas break and Jacob will be home for a whole month. My hone still has to work, but has the next three days off! We have actually gotten to sleep in a few mornings and we are enjoying the nice weather.

I completed my Master's Degree in Special Education from Texas Tech University this month. I am not a certified Educational Diagnostician. I am still waiting for my diploma to arrive in the mail! I can't wait to get it. I was able to print my certification out on the TEA website, and that definitely made it feel more real. I can't believe I have my master's degree! Jacob has only one more semester left in school and he will graduate with his associate's degree in May of next year!

Elijah is doing well. We went to see his doctor for his Tourette Syndrome, OCD and ADHD. She got to see a lot of his impulsivity at this visit. He was persistent at trying to get his way when she tried to talk to him. We are changing his medication a bit, and will go back in about six weeks. She mentioned a genetic test that might help pinpoint which medications would work best for him. The interesting thing, is this was mentioned at the Tourette Support Group meeting we attended back on Dec. 12th. I called the genetic company, and our insurance is not on their list yet, but I was assured the out of cost for me would not exceed an amount that I am willing to pay. I am going to take him next week for a cheek swab and then see what we can find out. The family at the support group meeting said that when they had the testing done, they learned a lot about the medications that would help their son and it has been very helpful. The doctor wants to possibly change his ADHD medication, but it is hard to know what to change him too, but hopefully this testing will help. I am excited about it, but don't want to get too excited

We are very excited about Christmas. Elijah got a new bed, which my hone, Jacob and I put together yesterday. Elijah helped some, but it was a small room and we needed all the room we could get to put the bed together. He did run some things back and forth for us and keep an eye on our progress. He was so excited to get his bed. Jacob's big gift is the car he is now driving. I have a few surprises for both boys. All of my other shopping is pretty much done. I have a few more things to pack. My honey and I want to go shopping and look at some jewelry. We just aren't sure if we want to fight the crowds tomorrow.

We have also been busy baking. I have been making snow ball cookies and will be making pralines later this week. We have also been making truffles! Jacob and Elijah love to help make truffles.

TRUFFLES

 My honey and I roll out the truffles and then put them in the sprinkles. The boys are in charge of making sure the truffles are covered in sprinkles.  They then put them in the mini muffin cups. Every 10th truffles requires a taste test for quality control and we each take our turn testing the truffles. We let them know what time we will be making truffles and the boys make sure they are there, or they know they miss out. We have fun as we make the truffles and it is a nice time to talk! We have made several batches of truffles.



Jacob and Elijah making truffles.

Today my nephew and niece came over and we made Christmas cookies. This is something else I enjoy doing this time of year. We had a lot of fun and the kids got to cut out cookies, bake them, and then decorate them. We use sprinkles on the cookies as well! My honey also has some Christmas favorites she likes to bake. We have been baking for several months. Elijah takes treats to all of his teachers and I hand treats out to my staff.


I am looking forward to 2016. I can't believe how much has happened this past year!! I hope you all have a very Merry Christmas!


Elijah's Tics are UP!

Elijah's tics seem to have increased in the last few days. Thankfully, he doesn't have many oral and/or motor tics, but when they appear, boy do they appear. I have heard a lot of "HMMMM" and "HMMM HMMMMMMM". It is hard to explain, but it can be constant and after a while the tic can grate on your nerves. Another vocal tic he is doing is a loud SIGH or GRUNT type of sound. Again, it is hard to explain. The other tic I noticed today was him licking his hands and then whipping his face with his hands. This is one of his older tics that I have not seen in a LONG time.  One time, he was riding on the bottom of a grocery cart and he actually licked his hands and ran them on the floor, then went to LICK them. Let's just say, I stopped him in time. The licking can be a CONSTANT TIC for him when it starts. He has also been a bit more argumentative this weekend, which usually happens when his tics increase. I am sure it is because the tics bother him more than he lets on.

I just never know when the tics will start or how long they will last. They just happen and then they are just gone or at least occur less often! If he weren't on his medication then I am sure the tics would happen more often and be more severe!

Turkey Bacon

When Elijah was very young, I worried the child would be TOO skinny. He just never seemed to gain any weight or to grow taller. I took him to an endocrinologist and he was behind the curve when it came to growth, but the doctor thought we should wait and see if he would catch up to his peers. He did and is finally growing TALLER.

 Unfortunately, many of the medications the takes for Tourette Syndrome, OCD and ADHD have cause him to EAT, and now that he is 14 he is really EATING. We got him walking over the summer and started counting calories, and he lost 10 pounds. Overall, he is doing well and we monitor what he eats. However, when he is very hungry he eats and eats whatever is around. He has been known to eat a whole package of luncheon meat or a package of pepperoni in the fridge. We recently bought a small box to lock up a few things in the refrigerator, for two reasons. He cannot just EAT all the time, or he will really gain weight and he has to learn some self control. We also keep the freezer in the garage locked.


Some of you may think I am a mean mom! Well, my honey found an empty package of TURKEY BACON in the fridge today. There had been about 3 slices left two days ago. He stated that he had eaten it. Upon further questioning, I learned that he ate it RAW. OH GROSS....that is all I have to say to that. Later tonight I was putting clean sheets on his bed when I reached down between the bed and the wall to grab a few stuffed animals. I found two bowls, several dried up orange peels and CHOPPED PECANS. We found the empty bag in the fridge when we went to look. Somehow he had grabbed the bag of pecans and spilled all of them between the wall and the fridge. We had not even noticed they were gone, because we use SO many pecans during the holidays for baking that we can't keep track of them between us. I found a LOT of pecans under his bed and we are going to flip the mattress off tomorrow to see what else we can find. Pecans are expensive, and he didn't even eat them, he wasted them. I also don't think he is hungry most of the time, but thinks he is hungry due to the meds. The doctor told me kids like him on these meds will eat trash out of a trash can. I didn't really believe him, until Elijah ate RAW TURKEY BACON! YUCK!

Doctor's Visit

It seems to never fail, that Elijah has a psychiatrist visit and then the next day has an AWFUL day at school. Yesterday, we visited the PRN for the psychiatrist Elijah sees and discuss his behavior. It has been off and on for a few weeks, but the PRN didn't want to change any of the dosages on his medication. I was not happy, but she is the expert. He just always seems to be "ON THE EDGE". He  tries so hard to make the right choice, but his body and brain won't let him at times.


I got a phone call from his principal today while I was at work, that he was having a ROUGH DAY. He was in the office having a meltdown. I finally got him on the phone and talked him down. I then made a call to the PRN and waited for a call back. When she called she stated that she thinks it is all behavioral, that he can control himself if he will calm down for me. Well, he used to calm down for the principal and teacher. Now it is a phone call to me. She increased one of his morning meds by 0.5 mg and we will go and see her in a month. I have also asked the school to pull the behavior specialist in to do some observation. I also asked for an ARD to discuss counseling and the STAAR-A exam. For those outside of Texas the STAAR is our state assessment and there is a new version...A is for accommodated. It will be on the computer. I want to discuss that with the school as well. Now I'll just have to wait for the diagnostician to give me a call.


I'll let you know how it all goes. Hoping for a better day tomorrow. I just hate to see him struggle with these behaviors.

Just One More Thing

Elijah just can't seem to ever catch a break. When we went to the pediatrician on Monday, he had blood drawn. He is on so many meds for his Tourette Syndrome, OCD and ADHD, that the doctor wanted to check his liver function and whatever else could be affected. The doctor also checked his cholesterol which was a little high, but not too bad, and also checked for diabetes. Well, he doesn't have diabetes, but he is not too far from it. The nurse said she was going to send me information on a Step 1 diet. I really wasn't too surprised, he has put on so much weight in the last two years. I can blame it on medicine, but I can also blame it on poor food choices.

I was at the rec center when the nurse called and then my honey actually called me. She was close by, so Elijah and I met her at the grocery store. We picked up some fruit, yogurt and Cheerios. Cheerios will be for breakfast. The fruit will be for a snack as will the yogurt. I have needed an incentive to lose weight and now I have one....for Elijah, because he needs to lose weight. I am also going to have him walk with me whenever I go walking. All we can do is get up every morning and tackle this the best that we can. I am going to start counting his calories too. I tried to explain to him why we have to change things up with what he eats, and finally told him if he doesn't make these changes then there are needles in his future. I know this isn't going to be easy, for any of us. He doesn't have diabetes now, and my goal is for him NOT to ever get it. This is a true kick in the rear for me, but I think I needed it to put these changes in place!

Follow Up on the Cough

I took a half a day and took Elijah to the pulmonologist on Wednesday of last week. His breathing test was not as good as the one he had back in March. The doctor decided to put him on steroids for five days and gave me a prescription for an antibiotic as well. He also increased his inhalers to 4 puffs 4 times a day for a week of albuterol. Then for another week it would be three times a day and then back to two times a day and only two puffs.

I kept him home on Thursday, because he didn't sleep well and I wanted to get in breathing treatments over just using the inhalers. I also knew he would be wound up on steroids and he was. By Saturday, the cough was about the same so I filled the antibiotic prescription. Today was the first day that I haven't really heard him cough much. He it using his inhaler at school with the nurse watching him to be sure he is doing it correctly. I am glad he is over this hump. He has not had issues like this in a long time.

We already had an appointment for June 9th and we are keeping that one as a follow up for this cough as well as a typical check up. I am fortunate to have a doctor who is very pro-active when it comes to asthma! Some people wonder why I keep using a pulmonologist, and not just my pediatrician and this is why!

Elijah has a Cough

Elijah has a cough. It is most likely due to the change in the weather. The rain came in and so did the cool air. He has had the cough since Sunday. If he were a typical kid, I would just keep an eye on him and give him allergy meds, but this is Elijah. His lungs are not at 100% and may never be at 100%. His premature birth and being on a ventilator are the reason for issue with his lungs. He was on a high frequency ventilator for five days and on a regular ventilator for seven more days. The ventilator saved his life, but it also damaged his lungs. Thankfully, he has not had a cough or issue for over a year. I will call the pulmonologist tomorrow morning and see what the nurse thinks. I gave him a breathing treatment Sunday night, last night and again today when I got home from work. He will take another one before he goes to bed. I have also given him Mucinex.

I know I may sound like a hypochondriac when it comes to Elijah and this cough, but if I am not vigilant he can get sick very quickly.

The Flu!

Elijah has the flu! He told me he didn't feel good last night and even wanted me to feel his forehead. He didn't feel warm, but boy he sure acted like he didn't feel good. He has had a cough for a few days, but it didn't seem serious. Well, he woke up feeling warm this morning and still not looking good. I did the web check in with CareNow and we got in around 9:30. The flu test came back positive and they did a lung X-ray based on his respirations and heart rate. There is one spot on one of his lungs that is questionable and could be pneumonia. I'll get up tomorrow morning and call his pediatrician and get him in to see her. The clinic wanted to see him again, but said we could follow up with his regular doctor if we wanted, so that is what we will do. He has also had several breathing treatments today.

Poor kid took off his processors two different times to nap. The doctor put him on Tamiflu, an antibiotic and a cough syrup. He is now asleep in his bed, but I'll be listening for him tonight!

TV Show--Parenthood IEPs

I watched last nights Parenthood episode tonight on my DVR. The subject of IEP (Individualized Education Plan) meetings was the story line for the family with Max, who has Aspergers. The writers did a decent job of portraying an IEP meeting and how overwhelming it can be for a family. I really wanted to jump in there and advocate for the two families involved. Max's mom went to an IEP meeting to assist another mom, and felt that she could have done more to help. Max's mom then finds out that Max is being sent to the library to do independent work because his teacher can't teach when Max is in the room. Max's parents are frustrated and don't know what to do or how to advocate for him. I think this part was something the writer's got correct.

Parents do have to educate themselves on the law and what the school needs to provide under IDEA (Individual's with Disabilities Education Act). I am a deaf education teacher I was used to being in an IEP meetings(ARD meeting here in Texas) in that role. As a parent, I find it difficult to know how to handle all of the situations I find myself in with him. I have learned to use the acronym FAPE(Free and Appropriate Education) as well as LRE (Least Restrictive Environment) to my advantage. I have also learned to say things like, "You are making my son fit into a program instead of making the program fit him." This phrase been a good one.

Elijah's next ARD meeting is in April! He is being re-evaluated this year and we will discuss those scores as well as the plan for next year. He has had a good year so far, but has just recently been having some issues. Of course, we just went to the doctor on Monday and NOW he is having problems with touching others. ARGH....I know this is probably a tic, but how to handle it. I am going to email his teacher again and ask for the behavior specialist to come in and see what is going on.

I am glad to see a TV program take on real life issues of families of children with special needs.

Update on Tics!

Elijah's new tic is still around! He seems to be experiencing a LOT of tics lately, both vocal and motor. He has also been more argumentative with me at home and teachers at school. He has had more issues at school too! We had already increased one of his medications by 0.5 mg in the morning, but I went ahead and called the doctor after another phone call from the school. He is now taking 1.5 mg of this same medication three times a day. Overall, this is an increase of only 1 mg per day. Overall this seems to have helped with his behavior and with tics.

We go back to see this doctor around the middle of January. I am hoping things stay stable between then and now. It is amazing to me how his behavior is tied to his tics, but I know his tics get on his nerves and drive him a little crazy. I know when I have the hiccups for a long period of time, that I am a little snappy with people, so imagine having tics constantly. I also think his tics tend to increase around the holidays, because he is excited about them. He is also out of his routine, which is  never good.

I took him to the movies today and he had several loud tics during the movie. Thankfully, they were spread apart and didn't all happen at once. He does pretty good and I tap his leg so he knows he is being a little loud. Here's hoping these tics calm down for him when we get back into our routine after the holidays!

Filed the Claim

The rechargeable batteries for Elijah's Freedom Processors arrived on Friday. I went online and found my invoice and filed the claim by fax to be reimbursed. The insurance company said it would take about 30 days for them to pay on it, and just hoping they do. I have decided that I will probably keep the batteries even if they don't pay on them. I will just have to suck it up and pay for them out of my own pocket. At least I can write it off on my income taxes, and YES, I have enough to write medical off on my income taxes. Between both boys, they have MANY prescriptions and Elijah has several doctors he sees each year. I keep it all in an EXCEL document and keep it updated!

We are still waiting on the Nammu hat to arrive to use for swimming. The aLoksak bags arrived yesterday! We use his backup Freedom processors when he swims!

I'll let y'all know when insurance pays on his batteries. This is ME being optimistic.