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Matthew's Journal Page 3
Thank you for visiting the first page of Matthew's Journal. Use the table of contents to look up entries either by date or subject of entry. Journal 3, which is where you are now, contains the most recent entries. I hope other families facing this diagnosis find the information helpful in some way. There are so many factors that make it tough to have a child diagnosed with this rare disorder. You feel secluded from the rest of the world. You start asking around and no one has heard of it. You really start to feel as if even the medical professionals have limited general knowledge on the disorder.
Table of Contents
I think I was inspired to provide new information because we are struggling to control seizures right now. Matthew currently takes Lamictal and Keppra 2x daily, but recently we are seeing seizures daily, sometimes a few a day. We are going to the Tuberous Sclerosis Clinic in Alabama in December, but they are assisting us now with regaining control of these seizures.
Matthew started school in mid-August. It seemed to be going smoothly for the first few weeks. He is developing some anger/aggression towards the kids in the class. I just couldn’t understand what they were seeing that I had NEVER seen out of Matthew. He was hitting the kids in his class, showing them his fist and putting them in headlocks. I didn’t know Matthew knew what a headlock was, so I was extremely surprised, until I saw it for myself. We were at the Neurologists Office a week ago. There was an unusually long wait and the kids were restless in the waiting room. One child accidentally stepped on Matthew’s hand. I cautioned Matthew that it was an accident, but he got up and stomped on that boy’s foot anyway. I don’t know what I was expecting to realize that I had to caution him it was an accident, but I was not expecting him to lash out that way. While playing with another younger girl, a toy hit him on the head. I cautioned him again that it was an accident. This time he didn’t react at all. The next time, she hit him on purpose and from then on, they managed to battle about everything. I was surprised, but realize that he did it with intensity. I discussed the incident with the Neurologist who explained that children in the autistic spectrum do not have the ability to control emotions, such as letting go of anger. Someone could do something to upset him early in the day and he will retaliate for that incident later in the day. This makes perfect sense when I compare Matthew to these situations. Matthew is currently taking ½ tablet in the morning and 1 full tablet at night of Keppra 250mg. In addition, he still takes 1.5 tablets of Lamictal three times per day. So far, this has been proven to be very effective on his seizure control. We began this dose in mid-June and I did not note any seizures again until late July. He began having quite a few all of the sudden, but then ended up with a cold a couple of weeks later and the seizures stopped. I haven’t seen him having anything since then. He is doing unbelievably well. We have had a lot going on this past month. Most of our Annual Doctor visits fall at this time of year. He has become very uncooperative for these routine visits. He will not let them get his blood pressure or take his temperature. We can’t sedate him for the diagnostics, such as the kidney ultrasounds, because they don’t work anymore. I helped hold him down for this one and he shrieked the entire time. He has an extremely high pitch scream. I told him to apologize to the technicians for piercing their eardrums and he just yelled “I’m sorry!” It was somewhat humerous to see him apologize with such a harsh tone. All of his visits have become a NASTY bitter battle. Daddy had to take him to the hospital last night for stitches. Yes, stitches! This is the third time he has needed them. Daddy asked me if he always was that difficult. I felt a sense of relief. It’s just night knowing or at least feeling that someone else finally knows what you go through. In order to avoid taking Matthew out of school and having me miss more work, I try to schedule as much as possible in one day and it completely wears me out emotionally and physically. He is singing the songs that he learns at school: Old MacDonald, 1, 2 Buckle My Shoe, Sunday – Monday, Good Morning. I love to hear that voice! I almost hate to tell him to be quiet and go to sleep. He still trouble sleeping and will keep himself up until 10-11 P.M. I met with his teacher yesterday to discuss his behavior and sleep patterns, and they do agree with me, that he does need some sensory integration. I had already scheduled him for an evaluation with a private Occupational Therapist for tomorrow. I am looking forward to seeing how we can begin to work with him. He is speaking quite a bit. If he spills, he tells me “Mommy spilled, need paper towel”. I can ask him questions and get a response. We were at the Psychologist today and the first thing he mentioned was a bear. When we got to the toy room we asked him to show Mommy the Bear. Of course, he suddenly remembered there were school busses with Stop signs so he got distracted by them. I knew the bear was brown and I could see it sitting in the corner, but I was determined to have him finish the task of showing me that bear, so I asked him. “Matthew, what color is the bear? Tell me what color that bear is so Mommy can find him.” He popped up from the busses to say, “find the brown bear.” One of the things the doctor is working on now, is the fear he has of trains. He took him outside to see the passing train. The doctor bent down on one knee to be at Matthew’s level, so Matthew bent down on one knee. He likes this doctor for some reason. Perhaps it is his monotone voice and expressionless face. It’s not a bad thing. I have been reading a novel written from the perspective of an autistic child and one of the things he dislikes is looking at people because he can’t always read their faces. He can hear them and pick up on their moods from their tone, but having to add in the expression of the face is just too much information to process. It’s odd though, how he can remember so many other tiny details like the number of tiny holes on a pair of loafers someone was wearing, the color of their shoestrings, the type of shoe, the type of pants. I can relate this to Matthew. I am often surprised by what he remembers. He remembered having this ultrasound one a year ago. He was three, but he remembers it! He recognized that room. I could see it in his face. Matthew really does like this doctor though and I’m sure he has good reason. Perhaps it is the one doctor not trying to be his friend only to end the visit with a poking and prodding and sticking! We have come across a great new toy. The V-tech Write and Learn Smartboard. Please visit www.vtechkids.com to learn more about this toy. I cannot possibly say enough great stuff about it. Matthew loves to read and write his letters and numbers. Writing them and understanding them is a bit of a challenge. They are backwards, sideways and upsidedown at times. This Smartboard demonstrates the correct strokes for printing the letters. He must then write them using those same strokes in the dotted lines on the board. He has to write them smaller and legible or the machine doesn’t realize what he is writing. HE LOVES THIS TOY!!! He is a visual learner and loves the interaction and precision this toy requires. It is endless learning as it does letters, numbers, missing letters, before and after letters, free play, counting and probably other things we haven’t discovered yet. There are so many amazing things going on with him right now, I just can’t remember them all. He is finally getting some interest in potty training. We still have days where he is reluctant to consider going to the potty, but we are getting more and more days where he is willing to sit. He has not yet actually gone in the potty. We take every little indication of progress as a leap forward.
We have had a busy summer including our vacation to Washington D.C. and a cabin in TN. Matthew handled the trip much better than I expected, thankfully. Take a look at some of our vacation shots. There should be a few in my Photo Gallery at least until the end of July. Mom's Gallery He was doing really well and not having many seizures, if any. He was scheduled to see the neurologist the day that we returned from vacation. We saw a little increase in seizures before our trip and on the trip. The Neuro decided to raise his Lamictal from the 1 morning tablet, 1.5 afternoon and 1 bedtime tablet. It was raised to 1.5 tablets 3 times a day. He has been on this dose for a month now. Matthew has not had any seizures to speak of. I am realizing today that I just have not seen him have one, and I couldn’t be happier. (fingers crossed, knock on wood) He was recently ill with a high fever and didn’t have seizure. I am amazed. The neuro was skeptical at our last visit that raising his Lamictal would have an impact at all. He is on such a low dose, he doubted it was having any impact at all. I explained to him that I felt Matthew was very sensitive to changes in Lamictal. He takes Keppra in combination with the Lamictal, but that’s only twice a day. If Matthew missed that afternoon dose of Lamictal, he was sure to have a seizure. I think his appetite has even improved. He is a little more restless at night maybe. I’m hoping that will change when school starts with all of his new daily activities. He starts Pre-school this Fall. I am sure I will cry! He is doing really so well now. He’s talking more and more and my heart still breaks when I hear from families who have older children that they still pray will talk. At the same time, they help me appreciate EXACTLY what I do have in my life. Matthew is beginning to ‘boss’ his big brother around. I find it humerous, but try not to laugh. It’s not acceptable behavior of course, but I can’t help but feel appreciative to see him act this way. He counts often. I’m not sure exactly how high he can go…at least 20. I believe he can go up to 50 if he can see printed numbers. He is learning the alphabet. He tends to get mixed up at P and Q when saying it from memory. He is a very visual. If it’s in front of him, he truly knows it. I have been meeting with a Psychologist to have him evaluated for PDD (Pervasive Developmental Disorder). He still has some autistic behaviors, but we are fairly certain that he is not autistic. I started reading more about autism and located information about PDD and really felt that pretty well described Matthew, even the behaviors he had as an infant. I should have one final visit with him tomorrow. Matthew has a fascination with traffic signs, particularly Stop Signs and Railroad Crossing signs. He seems to spot every single one of them no matter where we go. He has little wooden ones that came with his train set and can keep himself entertained with them for hours. He will line them up on the counter and walk around and around as if he is studying the layout. It’s a peculiar behavior to me, but I’m convinced he is getting something out of it. He will take them with him everywhere he goes including bed if we let him. It’s a bit extreme at times. I have his future planned out as a civil engineer! (kidding!) I just know there is so much I have been thinking I should put into his journal and of course, I don’t take the time to write it down. He has been so funny lately. I do remember one thing…Shrek M&M’s that are larger than normal M&M’s and come in green, brown, red and khaki. He kept calling the khaki ones “POP” and I couldn’t figure out why he was talking about Pop. (Pop is his Grandpa). After about the 10th time he said it, I realized that was the color of Pop. Pop’s work uniforms are khaki colored! I nearly died laughing and called his Maw-maw right away. He has come up with some other funny things lately and I can’t think of them. They were fully accurate things, just a funny perspective when it comes from him.
One of many catch phrases Mr. Matthew has picked up recently! We went out to east last night and Matthew was sitting next to me patiently waiting for our meal to arrive at our table. He leaned on me and I thought very little of it, until he spoke. He blurted out "Whatca doin' Monkey?" This is something I say when I am just checking on him when he seems a little too quiet. I was so surprised and couldn't help but get teary eyes and think to myself, amazed at this one little thing that would be seemingly pointless to anyone else or coming from anyone else. Now, I am also trying to get over the shock that I have not updated this journal in the past year. Someone should yell at me for that!!! For anyone visiting us for the first time, we really are happy you found us! Matthew is now 4 years old and experiences very little gross motor delay. He had an adaptive P.E. teacher that was working with him at his Maw-Maw's House (his Grandma is his babysitter). He will begin Pre-school next year and has begun going there for his Physcial Education Sessions instead. I'm sure like all parents, I spend more time being nervous about sending him to school then he spends pondering the idea of school. He has also had the chance a couple times this year to visit Big Brother Aaron's Kindegarten Class. He is speaking more and more and better and better each day it seems. He knows so much more than we could have possibly imagined. One day he picked up a marker and wrote his name M-A-T-T. It wasn't written across the paper but rather spread out and the letters were all jumbled. We didn't know he could spell it,let alone write it. What a mile stone...and he hasn't stopped climbing them sice. Climbing! (sigh) He has always been a climber, literally! I guess that is where that pet name came from, Monkey. I also call him Noodle, but I am not sure why. Right now, I just like to hear him say it!! He is very affectionate. He loves to give hugs and kisses. I still think he has some Autistic Tendancies. He will purposely walk past mirrored items such as windows or appliances to see his reflection. I can see most children doing that once or twice, but dozen's and dozen's of times EVERY TIME? I guess he is learning something from it though. He really studies it and will change something such as the toy he may be pulling to see it change in the reflection too! It's a little bizarre, just one of those things I've learned to ignore. Who knows if that's good or bad?! He HATES the motor on Daddy's boat. HATES!!! It terrifies him for some reason. It is parked right outside our front door and there are moments where he will not walk past it. I always thought it was the noise (Daddy has started it from time to time), but he still loves the vacuum. He is very fascinated with trains and train tracks. We don't live from from the railroad tracks and he can see the trains go by from his Grandma's House. When we are in the car driving down a stretch fo road that has tracks along side it, he is focused in on those tracks. I love photography and recently had a photo published in the paper of a recent train derailment. Matthew saw the picture and said "Train...fall down". I was quit surprised. I expected to hear Train and that's it. Well, it seems that has not curbed his interest in trains at all, but has invoked a little bit of a fear about being too close to a passing train. We cannot STOP at a RR crossing when a train is passing and we CANNOT STOP on the railroad tracks (which you shouldn't do anyway of course). He gets absolutely fearful so much so that he is fighting to get out of his car seat. Within seconds he is in a panic. I find it bizarre and hope he will grow out of these little fears. We began seeing a new Neurologist last year since our's had moved out of state. We are extremely pleased with the new Doctor. He immediately changed Matthew's medication from Topamax, which never really worked for Matthew but had no side effects in him, to Lamictal. Lamictal had worked...somewhat. It changed the time of day he was having seizures. He seems very sensitive to changes in his Lamicital. Too much or a missed dose does cause him to have more seizures. I think it was March or May of 2003 that we began using Lamictal. In July, the Neurologist added Keppra and warned that behavior is usually the thing affected. Immediately, his tantrums became more frequent than before and resulted for unknown reasons at times, BUT, we went from 16 seizures in June down to 4 seizures in July. I wasn't about to ignore that. We dropped his dose down to 1/4 of what he was getting. I believe he was getting 1 pill in the AM and 1 in the PM at that time. We dropped down to 1/4 of a pill 1x per day and it still seemed effective and behavior quickly returned to 'normal'. We gradually did have to increase the medicine, but his body had adjusted to it so there was no longer a dramatic change in behavior. He is now taking 3.5 25mg tablets of Lamictal per day and this has been the dose for the last year. Plus, he gets 1-1/2 250mg tablets per day of Keppra. We MIGHT see 1-2 seizures per month and I have to wonder if this is related to the times that he choses to chew the tablet instead of swallowing it. Other great Matthew Achievments...counting (I have heard him count as high as 22), identifies by pointing and speaking letters and numbers, he now will answer questions when asked, he says please and thank you at the proper times, he has told a couple of stories about things he did that day or the day before. I have caught him singing Blue's Clue's songs and imitating the actions of Steve or Joe. I have also heard him answer questions before they GIVE the answers, which really amazes me. He never seemed to like TV. I think the first catch phrase I heard him pick up was from TV though. "Can you hear me now? Good!" Verizons commercial, and it's really funny since I work for their major competitor! He pretends to have a conversations on the phone. Out of the blue he will pick up my cell phone and pretend he's talking. There really is no limit to what he can't do or won't try! He is still a little wonder to me!
Matthew turned 3 years old in January. He underwent evaluations in December to determine if he would qualify for the special education program through the school board. He seemed to lack the most skill in self expression and some gross motor exercises. Since then, he has really progressed in leaps in bounds. Everyone who seems him from month to month comments on how much he has changed. He is a little parrot saying EVERYTHING we say. He loves to mew like the kitties. Calls the girls (dogs) in for dinner. Calls everyone in for dinner! I saw him undress himself completely for the first time last week. I cry thinking about it. Something that most kids achieve on their own, we don't think twice how or when they began doing that task. I have learned to savor every triumph. Last week was Mardi Gras. He loved the parades and was waving at the float riders to throw him beads. It's probably the first time I have seen him initiate an interacation with someone he really didn't know. We cut his hair really short. I will have to get a picture up soon. Everyone was stunned how different he looked. He looks like a 3 year old now. He still takes a pacifier. He is very attached to it. We put it away for bedtime and naptime use only. I've noticed him putting his fingers in his mouth more and more, like he's teething. I have also started to see him put ojects in his mouth, his shirt or toys. I have to constantly ask him to take things out of his mouth and he usually responds immediately. We are still working on getting him to stop pulling us to items he wants. We encourage him to use his voice, but sometimes he just looks at us like "Quit wasting my time, you know what I want! Now get up!" He now has speech therapy two times a week and adaptive PE once a week. He also has a teacher who comes to the Grandma's house to work with him. We are looking for a play kitchen for him and Thad (his cousin who is his playmate at Grandma's). They are two domesticated little boys. Matthew just loves to help with housework. Loves to wash dishes, loves to vaccuum and really loves babies. I love to watch him around the. He really adores them and loves feeling like he is helping by putting a pacifier in their mouth. We were looking forward to having a little baby brother or sister later this month for Matthew, but I did have a miscarriage at 15 weeks back in September and I've been really pretty busy since then. We still battle seizures. For some reason yesterday he had 3 of them. He usually has about 3 or 4 a week. We have all been battling colds and sinus infections so I will keep an eye on him, he's probably comging down with another virus. We should have a new neurologist soon. The previous one has moved to PA since her contract was not going to be renewed. I don't know where to beging with the words he can say, cat, kitty, cow, spoon, fork, medecine, pudding, milk, chocolate milk, car, van, truck and he can point them out if I ask him to. Which reminds me that 2 weeks ago for the first time I asked where's Daddy and he pointed. Taking advantage of a good thing, I asked where's Aaron (brother), where's Grandpa ( who is living with us for awhile), where's Mommy? He pointed to them all. Now I have him practicing this one all the time! I am still so hopeful that he will progress as close to his age group as possible. So far I think it is determined he is about a year behind in most things. As always, we welcome your comments and offer support and people to turn to for those families new to TSC. Email me at tscawareness@bellsouth.net We would also be happy to share your story.
On Tuesday this week, we were scheduled for a Brain MRI to check the tumor progess and Kidney Ultrasound to look for tumor development. We were not able to do the MRI, because the sedative did not work on him. We will have to visit Tulane to have the procedure done after he is given an IV anesthetic. I was hopeful they would find nothing on this kidney ultrasound. The first one done in April 2001 revealed two normal kidneys. In my reading and through the people I have met, the people who have complications from TS have them because of the kidney tumors bleeding, rupturing or becoming cancerous. Not everyone with TS will get these tumors, so I can only be optimistic and hope he will never have them. However, they have developed. I only know that it doesn't look good according to the doctor, and that is all the information I have been given. I don't know how many, how big, which type? I hate being left in the dark, but I guess sometimes it is better to take those punches one blow at a time! While we are at Tulane, we will have to see a urologist of course. Now this 2.5 year old has a Pediatrician (like most kids), a Neurologist (to monitor seizure progress), a Genetacist (who oversees the whole TS developement), a Cardiologist (who monitors the tumors in his heart), an Opthalmologist (who monitors the tumors on his retinas) and now a Urologist. Poor guy! I do say that with a smile though, it is pretty tough to say that and not laugh when I imagine this little "terror" climbing on my furniture, singing and talking himself to sleep, feeding himself with utensils, drinking from a cup with no lid. I guess AMAZING would better sum it up. Plus, he is adorable in his new glasses! So, if tears start falling from my eyes, I am happy for having such a gift like Matthew, extremely happy. He has really made me appreciate every developmental milestone that any child reaches. I am scared, scared of the unknown. Will he ever have to suffer as a result of these tumors or will he be one of the lucky to never really know they are there except in pictures? Pregnancy makes it more difficult to face I think. Emotions run really high!!!
Matthew's Progress - August 8, 2002 We saw the Genetacist today. We see him about once a year. I drove to Tulane in New Orleans which is about 2 hours. There was another family there who had a 6 year old daughter with TS. They wanted to meet us, and I am always happy to meet more families facing TS. I don't know if this was true for all of them, but they had never met anyone else who had Tuberous Sclerosis. Their daughter (wish I could remember her name) has seizures and is currently taking Tegretol. She had a reaction to Phenobarbital. She has the hypo-pigmented patches all over, and the rash on the face. She was quiet and seemed to be quite a busy body, much like Matthew! She looked to be a real sweetheart too. She was entering the first grade, and I think she was of average intelligence with some speech trouble. It was wonderful to have met them. There were a few medical students present today, which I enjoy. I am happy that we can help TEACH more people about TS. Matthew displays both hypopigmented patches and hyperpigmented patches, which seemed of interest to them. I also pointed out the Shagreen Patch, which is more visible now. One year ago, I had a tough time convincing a doctor that it was there. They took a few pictures, but I don't know if they got any good ones. I may attempt a few myself. His seizures have increased again. They were 2-3 per week and are now 2-3 per day. At least that is how many we recognize. There are times when I can't decide if he is having one or not. The Geneticist would like us to do another CAT scan and see if there is a link there to go along with his decrease in coordination.
 Matthew is saying quite a few words, or attempting to say them. He says bye-bye, Bob the Builder, up, down, open, close, all done or all gone - I can decide which it is supposed to be, more ( I actually heard this for the first time today!), Aaron, lights on, lights off, Mom, Matt, Matt-Matt (which is what we call him), Maw-maw, uh-uh-uh, which he tells me at times he knows he is doing something he shouldn't. He will often grab our hands an try to pull us to things he wants like milk, juice, or going outside. I have heard him attempt to sing songs...Row Row Row your Boat, This Old Man and Maw-Maw insists she has heard Ba Ba Black Sheep. He is doing a bit of pretend play. He carries a baby doll around and "loves" it. Everyone usually has to give it a hug and kiss. He pretends to feed the baby as well. Maw-maw says he put a dog driving a tractor and kind of chuckled to himself at the very idea of the dog driving. He loves to help with housework- laundry, feeding the pets, dishes (of course, he is convinced EVERYTHING belongs in the sink, clean or dirty) There is a Speech Therapist who works with him once a week. I think that has helped greatly. She has literally given him his voice. I really don't know what she does that makes him talk, or even show the interest he does now, but it works. I don't know if that it is because he is forced to sit down at least once a week and pay attention. I really dont' know. He is very mechanical and she uses sign language with him and that was how he first began expressing himself. He signs light, more, all done or finished. He babbles all the time. Who knows what he is saying now? One night last week after his bath, he climbed on my lap, his face was completely lit up and he was rambling on about something. His hands seemed to be flying all over the place as if he were trying to act out this exciting story. I wasn't feeling very good, so didn't pay very close attention I'm afraid. I did notice him put his hands together and put his right thumb inside his lift fist while he rotated that right hand, thumb turning inside that fist, and fingers waving. I even noticed him studying this action. I would just see his mind plotting every action. I wish I knew what he was telling me...it sure sounded like a great story!!! We just started having an occupational therapist work with him once every couple of weeks. She is supposed to be really good at Sensory Integration work. Matthew seems to "crave" some peculiar behaviors. I know he is two and most two year olds do these things anyway, but with Matthew it is almost like an obsessive-compulsive behavior. They are things done to an extreme that most kids or adults would not tolerate. These behaviors seem to be increasing since an increase in seizures, so I wonder if they are related. He is literally drawn to the light switch, which he hasn't played with in months. He has to open and close doors over and over and over and over and over, which he hasn't done in months. He is also going through the climbing stage all over again. He just has to do it! He appears to have no control over it sometimes. He completely understands that we do not want him climbing on the desk, yet he does it over and over and over and over and over and over. He has always HAD TO lie on the floor and push a car within 3-6 inches of his face. He will do this when he is winding down or tuning out it seems. I notice he does it in a room full of people. It is almost like it is his way of shutting out the noise, and he has no other way to do this! He simply has to walk around our Dodge Caravan, EVERY time we go outside. He will either walk completely around it with one hand always touching it, or his cheek has to touch every 3-4 feet. I do mean he ABSOLUTELY HAS to this. He is drawn to the van by some invisible force. Given the choice to play on slides and swings at the park or walking around the van. HE WILL CHOOSE THE VAN EVERY TIME!!!
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Let's see if I remember how to do this!!! So much to update...new little brother and baby sister to introduce, Matthew participated in his first Special Olympics. Uh oh...little one are waking up, will have to return later.
