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!

Why is it?

Why is it, when someone is trying to excuse the profanity they use, they refer it to having Tourette Syndrome....or having a case of Tourette Syndrome? This past Saturday night I caught a repeat of an episode of Kitchen Nightmares with Gordon Ramsay.  It was for Amy's Baking Company. This was one episode where Chef Ramsay actually refused to complete the make over of the restaurant and help the owners. They re-visited the restaurant and a reporter went back to talk to Amy and her husband. This is a segment of the interview, so please watch and see how she mentions Tourette Syndrome. (here is a link to youtube just in case my video doesn't work..... https://www.youtube.com/watch?v=lMKyiiVuu7I 

 

 

This person wants to say that she had a severe case of Tourette Syndrome and this excuses why she uses profanity. I wish people would think before they talked. This is one reason why misinformation on Tourette Syndrome continues to spread.

A Little Bit of Sugar Goes a Long Way

I took Jacob and Elijah to see The Lego Movie this morning. I was surprised that Jacob decided to join us and we had a good time. We snuck in some candy and of course bought popcorn and some drinks. Sugar has always affected Elijah. It makes him moody and argumentative most of the time. I knew this when I let him have Sprite and M&Ms, but he has the right to be a kid on some days. I knew this going in, but boy did it really affect him today.

At first he was argumentative, which didn't make for an easy hair cut after the movie. We managed to get through that and arrived home. He didn't argue much the rest of the day, but his tics were off the chain. He was constantly making noise and chewing on anything he could put in his mouth. His tics have not been this bad in a while. He was full of energy, from the sugar I am sure, and basically drove me nuts. Well, he drove me nuts after several HOURS of listening to him. At some point, it does wear on my nerves.

He finally calmed down some time after dinner and his tics even seemed to subside a bit. It may be a while before I take him to another movie, but we did have a good time while we were there!

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!

New Tic

Elijah has a new vocal tic. It is a sound I cannot even explain. His "clearing throat" tic is also back. I wish I could explain this new vocal tic. It is a tone that is at a high pitch and the tone changes. It starts as a low pitch wound and then gets higher. Like a "aaa AAAAAAAA". It is actually a little louder on the second part of the tic along with the higher pitch. Thankfully, this is not a tic he does ALL day. It does come and go. The throat tic also comes and go, but I hear both daily right now. His chewing tic is also pretty intense right now. He actually got his chewelery and used it the other day, with no prompt from me.

The tics don't seem to bother him, as far as I can tell. Right now, the tics aren't bothering me too much. I can usually tolerate them, unless I am under stress, and then the noise just seems to bother me more. I think he has been excited about the holidays and this has caused his tics to increase. All we can do is just keep on keeping on! That is life with Tourette's!

Time for an Update

Wow, I just looked at my last post and it was done several weeks ago! I have been so busy with work and grad school! I am happy to say that grad school is going well. I am ahead in both of my classes with my assignments. I have five projects that need to be completed in the next few weeks, but I think I have a handle on them. I really only have ONE more assignment that needs to be done!

Jacob continues to work at a grocery store each weekend. He still likes his computer maintenance class. He will be applying to Texas State Technical College next month! We then need to decide about housing! WOW! His senior year seems to be flying by already.

Elijah is still doing well. He has had a few minor issues at school, but when you compare them to what has happened in the past they are really minor! He is really into Pokémon books and loves to read! It is cute to see him with his nose in a book all excited about what he is reading. He and I went to Tourette Support Group meeting this past weekend and he had an awesome time. He call them the "tic meetings"! Next month we are going to the Perot Museum with the group!

Work keeps me busy, but thing seem to be slowing a down a little. I'll take whatever I can get. The weather has turned cooler and we are all enjoying that. My honey is working a LOT of late nights, and I wish I saw her more. We have plans to go out to dinner with a friend on Sunday afternoon, so that will be nice!

I'll try to post more often, but really there isn't much going on but work and school for all of us!

Having a Schedule

Tomorrow is the big day that I go back to work. Jacob and Elijah still have one more week until school starts. Jacob will be staying home with Elijah to babysit! I sat down this morning and made out a daily schedule for Elijah. He does much better at home, if he has a schedule. Jacob has even agreed to play the Wii with Elijah twice a day! Elijah will be sure that Jacob sticks to the schedule. We even write in lunch and a snack time!

Elijah also has a schedule at school he follows. When I met with his principals, I let them know that on days that the schedule changes, they need to let Elijah know a day ahead of time. He knows how to tell time, and he doesn't like it when his schedule changes. Some people may think it is a hassle to have to do all of these extra things for Elijah, but I am glad I finally have figured him out! I am sure I will have more figuring out to do in the future. OH and his chewing tic is back. He is munching down on chewelry.

Lot's of Noise!

Tics are back in abundance. Elijah has been making noises now for two days and chewing on his shirts again. He is now wearing his chewlery(pictured left, he uses the larger necklace one), so he doesn't chew a hole through this shirt. The noises aren't too bad, but I have had to remove myself from the living room a few times. There are a lot of loud raspberry types of sounds and loud sighs. It will stop for a bit and then start back up again. I don't know how it doesn't drive him crazy.

He is also letting the coil on his left ear processor dangle a lot. He goes through phases where he does this. If I ask him if he wants to take off his left "ear" he says no, so not sure why he lets it dangle. He can't hear without the coil on his head.

MORE TICS!

OH MY OH MY, those darn tics! Elijah is just making all kinds of noises! I emailed his teacher and two principals tonight giving them a heads up. He is out of school on Monday, but the holiday is over then and back to school on Tuesday. I hate to say it, but the tics were on my last NERVE today.(Hence the cat picture, we love cats!) This may be totally TMI and gross, so please skip ahead to the next paragraph if needed....but one of his tics is SNORTING. He blows his nose out as hard as he can with no Kleenex. He will do it several times in a row. I know this is a tic, but it is a gross and unhygienic tic. I gently inform him that it is not very NICE or CLEAN to have this tic and to try to stop. He will for a while and then there it is again!

I warned the school about this tic in particular, because it is so gross. It also looks very purposeful. I think sometimes they forget he has Tourettes and that means tics. They wax and wane and you just never know when they will hit hard. Elijah has a status sheet that comes home everyday with him, and sometimes there is a note that he was making annoying noises that bothered other students. WELL DUH, might we assume they are tics and keep an eye on them. Might you even ask him if they are tics, because he doesn't lie(I wrote about this in another post, one teacher was just SO SURE that Elijah's cussing was a tic. She assured me it was. I asked him and he admitted he was just saying the words and not a tic....so if he won't lie about that, then why lie about other tics?). I know Tourettes is hard to understand, but I wish his teacher would try to remember that! He doesn't get in trouble, but sometimes the more you ask him to stop the more he will tic. I wanted to give the school a gentle reminder and I suggested they have a plan in place JUST in case these TICS do annoy other kids. Asking him to stop his tics, is like asking someone to stop a sneeze. They can maybe hold the tic in for a bit, but it will come OUT at some point!

Hopefully this phase will pass and things will calm down. I know if it drives me crazy, it must drive him crazy. Tomorrow is another day, right?

Darn Tics!

Those darn tics are back. Elijah has been making noises all weekend and had chewlery(a type of necklace a person can chew on) around his neck since Saturday. If he doesn't wear the chewlery he will chew a hole in whatever shirt he is wearing. I am fine with the tics, really I am, but at times they can push me over the edge. It is just too much noise at times. I tune them out and don't say anything. I know he can't help it, and I hate that he has to deal with them. At least they are only vocal tics and not too many motor tics. About two weeks ago he was laying on his stomach, with his legs bent at the knees and knocking his ankles together. OUCH! It even sounded like it hurt. I am hoping they calm back down again before he goes back to school. At least we are out for Spring Break.

LABELS!

We live a life in which we are all labeled at one point or another. When we are born, we are labeled as a boy or a girl. We are labeled by our race, hair color, eye color and how big we are and all of this happens on the day we are born. There are many other labels that come later. Some of them are nice to have. Labels that tell us how smart we are or that we are loved by somone. However, many labels that are given to children in school are usually not fun labels. Many of them are generic labels that are used on MANY children. Then there are the labels used in special education and medical professionals.

Elijah was labeled as a premature baby on the day he was born. He then received the label as a child with a hearing loss when he was five weeks old. This was confirmed four weeks later. He went home on oxygen and received the label as medically fragile having a reactive airway. Grant you, he was not as fragile as many children, but he certainly wasn't healthy.  These are the  labels he lived with for a long time. I like to remember that he was and still is a blue eyed red headed precious boy!

Elijah started school at the age of three with the label of auditorially impaired(AI) and wears cochlear implants. Auditorially Impaired is the Federal term used for a hearing imparied child. He started off as a total communication AI student and then later was labeled as an ORAL AI student. He was also a child with behavior issues and later earned the label of ADHD. He started medication and things were OK for about 18 months and then the tics started. At the age of eight he received the label of Tourette Syndrome and a few months later the label of OCD. These were given my medical professional and at school fall under OHI(Other Health Impaired). The school sent forms off to his doctors and one of them decided to put the label of Aspergers on the report. The school called me and DID NOT agree with this label at all and neither did I. I called the doctor and had it removed.

Elijah has lived with these labels most of his life and have overcome many obstacles. We are planning on taking him to a camp for kids with Tourette Syndrome in April. I completed the application and sent it off about two months ago. His doctors then needed to complete a medical form for all of his medications and I just recieved the form from his psychiatrist. All of his labels were listed along with PDD-NOS. This is an acronym for Pervasive Developmental Disorder that is non specific. Basically it is atypical autism. Well, here we go again. I looked up this disorder AGAIN and this is what I found.

As for the other PDD's, diagnosis of PDD-NOS requires the involvement of a team of specialists. The individual needs to undergo a full diagnostic evaluation, including a thorough medical, social, adaptive, motor skills and communication history. Other parts of an assessment can be behavioral rating scales, direct behavioral observations, psychological assessment, educational assessment, communication assessment, and occupational assessment.

I have to say I am more than just a bit irritated with his doctor. She sees him for 15 minutes every two to three months. A full diagnostic evaluation has never been done on him for PDD-NOS or any form of autism. Many hearing impaired children may show symptoms of autism as do some children with Tourette Syndrome. I don't believe hs is PDD-NOS and neither do the deaf educators who have worked with him for YEARS.  This is one label that I am not going to allow to be used with Elijah. Assumptions are made with labels, and he already has way TOO many and doesn't need another one. We go back to his doctor in May, and I guess she and I will need to talk.

Phoebe in Wonderland

Phoebe in Wonderland is a movie that depicts a family dealing with a child with Tourette Syndrome. The family does not know this is what they are dealing with at first. The daughter acts strangely, makes sounds, spits, has OCD tendencies and overall is just not acting "normal". It was a hard movie for to me to watch, because I had gone through the range of emotions that the mother in the movie goes through. I had thought there was NO way that Elijah had Tourette Syndrome. Even when we suspected it, I didn't grasp the full effect of this condition.

I would recommend this movie to anyone who wants to get a better understanding of Tourette Syndrome and its co morbid disorders. There is a point in the movie when the family is eating dinner. There are the two girls(Phoebe and her younger sister) and the parents. I don't remember exactly how it all starts, but the girls tease their parents about having a baby. They keeping being silly and saying the mom should have another baby. The parents are extremely stressed with everything that has been going on with Phoebe and the father looks at her and says(and I paraphrase) "Do you think your mom can handle another one like you?" Of course, he regrets it as soon as he says it. The daughter is hurt and the mother is upset. Later the parents talk and the father tells his wife that he has apologized to Phoebe, but the mother is still very upset with her husband. She finally says(and paraphrasing again) "You said exactly what I was thinking. You are right, I can't handle another one like her." I cried through this entire part of this movie. It was at a time, when I felt the same way about Elijah. I just didn't know what to do with him or how to best help him.

Elijah is doing very well now and I am thankful for that. We have had some very rough years, and we may have some rough times again, but I am better equipped to handle it. He has good doctors and a great staff at his school. We just take it day by day!

My Day Off and Doctor Visits

I took the day off from work today to take the boys to the doctor. I had originally planned on only taking half a day and taking the boys to the pulmanoligist(asthma doc), but then Elijah needed a check up with the psych, so I made it a whole day!

Overall, it was a good day. We slept in to 7:30, which was really nice. We had a lazy morning and then Elijah and I left around 9:15 to go and see the psych. It was an awesome visit. We talked about how well he was doing and she noticed a significant decrease in his tics, just from the time we were in the office. I left her the paperwork to complete for camp. It has to be dated for next week, so I couldn't get it today. Elijah and I left there to run a few errands and then dropped off his prescription at CVS. We also stopped and grabbed a pizza for lunch and brought it home.

Our original pulmanoligist appointment was for 2:10, but due to a scheduling problem on their end they called and we moved it to 4:00. We spent the afternoon at home and just hung out. I paid a few bills and just enjoyed the time at home. I started some chicken in the crock pot and cooked some rice! We got to the doctor's office around 4:00 and left around 5:15. This was actually a quick visit and now we just had to fight traffic home. We arrived home around 6:00 and dinner was basically done, so we warmed things up and ate.

I think all of us needed an easy day today. Just a day to not have to do a lot of chores and to relax. The next doctor's appointment is on March 4th to see the neurologist!

Dealing with a Special Needs Child

This is a link to a blog titled, "I am Adam Lanza's Mother: A Mom's Perspective on the Mental Illness Conversation in America."

http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html

I read this blog and thought it was very well written. I hate to say, that since the shooting in Connecticut I have thought of nothing else then could this be my son? Elijah has a neurological condition and his brain doesn't always work right. He can get angry at time and have full rages. I don't share this too often on this blog, because it is hard to talk about. He takes four different medications in the morning and then two at night to help him with his implusivity and his tics. People with Tourettes can have Tourette Storms--he has trouble controlling his anger and when he is in the middle of one of these storms, there is no reasoning with him.

Thankfully, these storms do not happen very often and very rarely happen at home. When he is at home he is in his most comfortable place and there are not as many demands as there are at school. These storms seem to happen at school and we can go months without one and then when he has one it is out of the blue. When he does have one it is a lot of yelling and kicking at walls. He has been known to bite objects and people. He may also spit at people.

We manage as best we can with medication. I run a strict household with written rules. He has no access to the iPad, computers or video games during the week. He gets limited amounts of these things on the weekend. Many people may think I am too strict with him, but they don't understand. We don't go places during the week so we aren't out late at night. He needs to be in bed by 8:00 if it is a school night.

When I hear other parent's stories, I am thankful that Elijah's problems don't seem too severe, but then when it flares up I am saddened. At times, I wonder if I can continue, but there is no other choice. I am thankful for my partner and for others in my family who support me emotionally. Jacob is an awesome big brother, but even he has his limits.

I do love my little man though and we will keep on keeping on....it will get better.

Mansions Have Ghosts!

Elijah and I have the house to ourselves this weekend. Jacob is away for two nights on an ROTC field trip and my honey is out of town until Monday! I had a dinner mystery shop, so Elijah and I set off for a 20 minute drive to eat dinner! We had a pretty interesting conversation driving there and then driving back!

Most of the drive is on a two lane road that has a lot of nice homes on it. You can even see a large lake! We discussed some of the homes and other things we saw as we drove there. We had a nice dinner and much of the conversation on the way home was on what we saw. We had seen a three story house and Elijah was looking for it again, because he had never seen a three story house. We saw it again and then we came upon a LARGE house up on a hill. There is even a gated entrance to this house. I pointed it out to Elijah and he said, "that's a mansion!" I was quite impressed he knew that word! I wouldn't say this was a HUGE mansion, but just calling it a house was not appropriate. Plus it sits on top of a hill and has a gated entrance. I told him he was correct, that was a mansion! He then said, "mansions have ghosts!" He laughed as he said it. I asked him why mansions have ghosts and he said, "because they are OLD!" I started laughing at that one! He told me the house was one thousand years old, so then I told him how old I thought the house was and we talked more about houses! I wondered where he might have heard the word mansion and realized it was probably from "Scooby Doo" cartoons and of course, in that cartoon mansions usually did have ghosts!

I still marvel at my son and how well he has done with learning language and using his cochlear implants. Today was a day that I realized how lucky I am that there is this technology out there and good therapists to work with us! I wish parents would realize that implants do work, but there is a LOT of time and effort that must be put in. It is not an easy fix. I look back at all of the therapy sessions we attended when he was first "turned on " and wonder how we did it all. How we drove back and forth to Dallas once a week for me and then David too him once a week. Jacob went with me when I took Elijah and we were after 6:30 getting home most days, after sitting in traffic for at least 90 minutes. All of those sacrifices were worth it though and as I watch Elijah today, I am thankful that we did put all of that time in with him. He is a joy to me, as is Jacob.

Things are not as hard these days. Tourettes, OCD and ADHD seem to get in the way some days, but for the most part things are going well there. He has had good days at school, with some minor issues, but nothing serious. I am glad he and I have had this time and still have time until Jacob comes home tomorrow afternoon/evening!

Endocrinology visit today!

Elijah makes a trip to the endocrinologist every six months. The last time we were there, he had not grown much and didn't seem to be entering puberty yet. Today's visit was a little better. He had grown an inch in the last month and according to the doctor he should hit puberty pretty soon. The doctor said that his boy parts had grown so that means there is testosterone, so that is good. Elijah wasn't too happy to have these parts checked out, but it was painless and quick. We go back in January and I hope we see more growth! This kid just doesn't seem to catch a break in any area it seems. He is done with doctor appointments for the summer at least. Tics are about the same, maybe a little better. I noticed today that he doesn't tic much when he plays the Wii!! I wonder if he is just concentrating on playing and this keeps him from making tics. Who knows!

Tics Are Still Here!

Elijah's tics have lessened a very small bit in the morning, but are still pretty intense in the afternoons and evenings. I called his doctor today and she decided to add 1/2 a milligram of his tic medication to the mornings. We will see if that helps. One of his new tics is to BLOW out of his nostril as hard as he can. He sounds like he is blowing his nose, but has no Kleenex. I know he can't help it, but it is sort of gross. The licking tic is also still here. He licks his hand or fingers and touches his face. He will do this over and over again. He also makes his noises! They don't seem to bother him much and they really don't bother me, but I know it is hard for people who don't get it. Its not like you can tell he has tourettes when you look at him. Hopefully adding this medication back to his morning will at least lessen the intensity of these tics. I am also hoping the blowing the nose tic runs it course and goes away before school starts. We may have to get him some tissues to carry so at least when he feels the urge he can put a tissue near his nose.

Update on Tics and Sleeping!

Elijah's tics are still around, but they seem to be a little less intense.  I notice them more in the afternoon and early evening before he goes to bed. I realized today that I hadn't heard any LOUD tics in a while, but had heard some quiet ones. I'll have to pay a bit more attention tomorrow.

Now Thursday and Friday night he had a hard time going to sleep. We had eaten dinner late and he had a late bath. He gets an hour of electronics at night and I think he was playing to close to his bed time. I changed things up and now there are no electronic games after 8:00 and he fell asleep just fine last night. I am very glad of that! He slept almost eleven hours last night! He fell asleep quickly tonight too! I'll update things in a few days and hopefully we won't have to add an additional dose of a medication.

Friday Night is Pill Night!

Once a week, I sit at the kitchen table and get Elijah's medications ready for the week. He has this exact pill dispenser that you see pictured above. It really does help to have this organizer.Jacob takes two medications a day and I take three, so I get those ready two. However, Elijah's medications are the real work. He takes four pills each night and seven pills each morning for a total of eight different medications. There is one pill I have to cut in half! That makes life even more fun. He never complains and takes his pills each morning and each night. He even goes and gets them out of the weekly dispenser each night when I remind him to take them.

I so wish he didn't need all of these medications. There is one pill for his asthma and the rest are for his ADHD, OCD and tics. He also takes two inhalers in the morning and the same two in the evening! Some pills are yellow, others are green or white, but they all help him. His tics are about the same and throat clearing has been added to his list of vocal tics. I hate to say, but they wore me down today and so I know they must wear him down at times. If they continue, then I will call his doctor by Tuesday and see what she has to say. I have tried to catch him on video again, but if he hears me turn on the flip camera he just stops. Now some would say he can control his tics. Well, he can for a while, and then watch out...he explodes with tics. I just can't seem to catch them on video.

I am thankful there are medications that can help him. However, there is no blood test that can show which ones really help and HOW they help OR if we need to change something. It is all a big of a guessing game, and sometimes doctors make very good decisions and sometime we try something and it just doesn't work. I'll keep y'all posted on how it goes!

More Tics!

I took another video of Elijah, actually two videos, and figured out how to splice them together. I am technically challenged when it comes to videos. You hear more of his noises on this one and see the licking again. He is making a LOT more noise than is what on the video, but I can't seem to catch him in the act.

You may wonder why I video him, well, he doesn't tic on command and there are some(teachers, principals and some doctors) who have never really seen him TIC like this before! I want to have evidence for the doctor when I call tomorrow. I'll be more than happy to email her a copy of the video or send her a link to the website. I know she believes me, but I want her to see it. This video is just a small example of what he is going through right now.

Here it is!