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Matthew's Journal Page 2
Thank you for visiting Matthew's Journal. This page contains entries about Matthew's TS from August 2001-June 2002
 Table of Contents
He is still having seizures and even more now since he has been sick for a week. He had a fever 103 last week and now has a sinus infection. Big brother Aaron is starting with the same cough so it may be a virus. I hope not! I am hoping the antibiotics will work on Matthew to get him better. He may be starting early headstart this Fall. The session ended for the summer before we could find out much about it. I am hoping he will be able to go part time. Will write more later.
We now have a speech therapist coming once a week to work with Matthew. This week we have heard a lot of bababababa..stressing the b of course. Sometimes at an appropriate time sometimes not. She is great at coaching me on things to do to work with him. I was quite happy just to hear his little squeals. I was amazed he finally had a voice. After reading letters from some parents with children who have TS, I realized I needed to be more aggressive with his speech. It dawned on me that I had to be aggressive when it came to teaching him to roll over (which he didn't do till he was 10 months). I had to be aggressive when it came to teaching him to crawl (which didn't happen till he was over a year). I think walking was the only thing that eventually came in time (first steps at 18 months). So, speech now has my full attention. She is suggesting an OT or Occupational Therapist (her non-professional opinion) because she felt that some of his lack of attention was a sensory issue. I will need to find out who helps me out there to get that help. The early intervention program has been great so far!! On other notes...he is showing an interest in sitting on the potty. Has even sat on round toys and peed on/in them! haha He has the greatest smile, greatest laugh and a super personality. It is finally nice to see it coming out. He still gets his pacifier at naptime and bedtime and on his really rotten days. It seems to be an oral fixation and the speech therapist has recommended a special vibrating tool that is suppost to help. I will surely give it a try!
We saw a pediatric neurologist at The Children's Medical Center in Dallas on the 27th of December. This was a superb visit for us for this doctor personally has seen 500+ cases of Tuberous Sclerosis in adults and children. We were so relieved and got so many answers. He suggested that we could taper Matthew onto a new treatment, Topamax and off of the phenobarb. Surely, you can imagine, I was in the palm of his hand with those words. Finally, someone was telling me there is an alternative to phenobarb. I wasn't too comfortable with Matthew having seizures while on the phenobarb. He was already maxed out on the highest dosage and I could not even imagine adding another medication to his day. He was having so much trouble with walking at times that he could barely walk 10 feet without tipping into a wall or literally falling forward on his face. He wouldn't even try to catch himself. If you need an understanding of how little knowledge people have of this disorder, read this carefully. We were told in early December to be happy with 3-4 seizures a week, even though at times, he had them all in one day. Children with TS have 10-20 a week and sometimes that is in one day! It is amazing what you accept for comfort from physicians, even though in your heart and gut, you know this CANNOT be right. The doctor in Dallas was reading my mind when he said, "He does not have to have seizures and we don't want him to..." He made it pretty clear to us the seizures would only hurt in the long run. Children who have seizures apparently have no recollection of what they learned up to two hours prior to the episode. He went on to explain that children who have 3-4 seizures in a day, have learned nothing in a day. This guy really knew his stuff and put so much into perspective for us and gave it all to us in the simplest of terms. We held onto and understood his every word. He also gave us the impression that allowing the seizures to continue was only setting Matthew up for one massive seizure one day that could put him in ICU. We understood that changing medications would be some work, but that surely sounded better than a trip to the ER one day! Matthew was re-admitted to physical therapy in early December because of this backwards turn with walking. They had not seen him in a month when we saw them a second time last week, and he stunned them!!! He is now walking all over without difficulty. He opens doors. Plays with toys. Still ignored their every attempt to get him to do their "play". They were so happy to see him doing so well, I don't think they minded. The early intervention teacher was here last week for her evaluation too. Matthew was coming down with a cold so I let him sleep and just gave her a verbal update on his progression. I had not realized till now how much he had accomplished in the last month. He could stack 5 blocks with no trouble at all. I was lucky to get him to stack two during our play time and he just sat down one day and stacked 5 blocks on a table. He had more interest in his toys in the last month that the dog dishes...Thankfully! He throws a small ball over hand (right-handed) without any struggle. I can ask him to throw it to Mommy and he comes up fairly close and just whips it. Quite an arm!!!! I have seen him try with his left arm, but he realizes he has less control of where the ball travels. He is vocalizing so much more. Mostly just sounds but it is something and I am happy to see him trying. His Nanny got him a Blues Clues sing along radio. It has a microphone attached and he loves the songs from Blues Clues that this radio can play. He knows to press the button on the microphone and hold it to his mouth to make the noises in the radio. I am in awe when I watch him do this. I would have been lucky to show him this radio a month ago and get a second glance from him. He has said "hi" and "bye" and uses both in the right context and when we ask him to say them. I don't see his fascination with light switches as much as before. Maw-maw got him a toy that has several different switches and knobs on it. Each making a different sound and producing a different light pattern. The sound is different for each direction that switch is pushed. Blues Clues radio also has buttons to press so could be that this action-reaction business is giving him the stimulation he was looking for from the light switches. Nothing seems to have curbed the fascination with swinging objects though. He still just has to push them.
If you or someone you know has been given the diagnosis or probable diagnosis, I strongly urge you to take a look at this site and join their list. I get about 30 emails a day from them. The list consists of adults who have TS and/or have family members with TS. If someone has a question, it is sent out to everyone. If someone has a suggestion for playtime with these kids, it is sent out to everyone. It is a must have for anyone affected by TS. It is all done by through replies to email. I can't say enough about positive things about this site. This is their link.
December 6, 2001More Seizures and recent doctor's visits and testsSince October 19, we have been quite busy. We had a follow up CAT scan of the brain which indicated no change in the tumors. On the same day, we had an EEG, which indicated abnormal activity but so far that is all that I have heard from that report. We saw the Neurologist, Cardiologist and Opthalmologist earlier thsi week. The echocardiogram of the heart also indicated no new development in the tumors. She did indicate that the tumors seemed to be "growing" towards each other but they presented no problem with heart function or blood flow at this time.Matthew is still having seizures. They vary from week to week lasting 10 seconds to 1 minute. They also vary in number from 3-4 a week and sometimes all in one day. I still can't understand why he is having seizures at all. They keep telling me that this is okay, because most kids with TS have 30-40 a day. I just can't understand why we can't control them when I read cases of children who have no seizures. We will be seeing a neurologist in Dallas on the 27th. He works with and manages quite a few TS cases from what I have heard and read. I am looking forward to it. Matthew still has some peculiarities about him and his behavior. He can throw some pretty wild tantrums. He just recently started head-butting if he disapproves of something. If I tell him not to do something and move him away form it, he will head-butt my leg a few times. Sometimes, he is doing it with spite and others he makes it a game. He is fascinated with turning things off and on, swinging objects (swings, bird feeders, ect.), pushing things with wheels and spinning things. I mentioned this to the neurologist and she suggested it was possible it was possibly the autistic tendancies that TS kids can produce. At the same time, she is thrilled to see this behavior since she says Most kids with TS don't operate at a level to have an autisitic behavior. Overall, he is doing well then. And oh so determined!!!! He had to get stitches in his in November. We are not sure what he was doing but no doubt he was climbing on something. I can't keep him on the floor. Last night we were hanging lights outside and I had to pull him off the ladder a few times. He DOES NOT take no for an answer!!!! I only hope this determination will stay with him and I am trying to find ways to divert his attention to other activities but it is not easy at all.
Last night at the table, he was staring off. Daddy was trying to get his attention by clapping and waving. He even slammed the table with his hand, with no even a flinch from Matthew. Suddenly, he is all alert and laughing again. It is strange how the transition into the "episode" and out is so instant. The seizures he would normally have are called focal seizrues, because they only involve one part of the body. I think of it as focusing on one part of the body, which was usually his left side. They appear to be becoming more general now and involve both sides from time to time. I am starting to see some shaking of the right hand, and he defintely picks at his clothes and has even hit himself (right hand slapping the other.) It is almost funny because at the time he was in the process of doing something, he knows he shouldn't. Otherwise, we have more words and more alertness. I am so excited. He said "wa-wa" yesterday in the van when I asked Aaron if Matthew could have some water. He loves to play chase with Daddy. The other night, he was trying to put my shoes on my foot. He was having a blast! He has the most amazing smile and great laugh!
Back to his improvements though. He is muttering and mumbling a lot more lately. He is always saying Mamamamamama, nananana, a-a-a-a-a, da-da-da, de-de-de. Funny to hear him finally saying all these things!
Already this morning Matthew has had a seizure. This one was very brief, about 10 seconds. It was around 10:45 am.
 September 27, 2001More SeizuresI had better add these before I forget. I am already forgetting what times they happened today. I can remember where he was and what we were doing but can't remember what time it was. First, don't know if changing his medication around just a little would affect, but one day shouldn't. I tried giving him his phenobarb three times today instead of two times daily. I gave him 1/4 this morning, 1/4 after his nap and 1/2 at bedtime. It was great for his attitude today. No Mr. Cranky Kid at all today. He got his medicine about 9 am. We went out to play about 11:00 am and he had a seizure while we were out playing. The expression on his face has become my key that the seizures is coming. I would call it a clown face. He holds his mouth open with a big silly grin on his face. I think it is the most peculiar thing considering what he is going through. His left side seems to be most involved but I think he does some picking at this clothes with his right hand. I am trying to watch this closer. His second seizure today must have been right around lunch time. I was heating something up in the microwave and he was watching me. I remember that expression came back to his face and he sort of just froze. If he doesn't try to move I don't notice the twitches as much. I was really starting to question if I was really messing things up by changing the meds around....but at the same time, I had my happy baby back again. I hope they decide soon what we will do about the medications. The third seizure, was about 6:20 pm. We were heading out the door so I could attend my 1,2,3,4 parenting class. It was very obvious. He was defenitely struggling to even stay on his feet. That silly expression was there. His whole body seemed to quiver. It is almost like an overly excited kid who just can't sit still. They squirm with excitement. They heads sort of bob up and down with anticipation. Everything about them says they are ready for excitement. Hands twitch, legs kick (or in Matthew's case, legs turn to rubber). Fortunately, these three seizures are back to the usual length of about 10-20 seconds. I am starting to question whether they are more involved though. Oh, he also had a seizure last night. This one I got on tape. Again, unless he is trying to move, it is hard to tell they are happening. The more I watch the tape though, the more I say what else could this be?? So, I guess these seizrues were actually going on before I started changing his meidications times. Other than that..more new words. I am sure I heard him say all done or as he puts it "a-da." He has completely amazed me with his abilities this week. He knows when we are going somewhere now and shuts all the doors I would normally shut on to pen the dogs to one room. He even follows me around the house to make sure I do everything just right. He knows where his shoes are and will even get them and climbs on the bed for me to put them on him.
Yes...seizures again!I wasn't completely sure he had those seizures last week. They were so short. This week, he is definitely having them. He had one Sunday evening and Monday evening. Both lasting about a minute. This is the longest any have been. After talking to the pediatrician, he wanted to increase his Phenobarb, which I am absolutely against doing. Matthew was just staggering a few weeks ago from what we thought was the medicine levels being high normal. It seems we would like to add another medication to the dose. I would much rather just have him off the phenobarb and start with something else. It seemed to never really completely eliminate seizures but maybe I am expecting too much. We will have to consult with the neurologist and get her options.
This is feels like such a step backwards after nearly 3 weeks with no seizures. All the sudden Matthew is using so many new words and repeating sounds I make. I have heard Aaron (in his own way), ball, mamama, dadada, bababa, nanana..all associated in the right context. I hope we get these seizures figured out soon!
Seizure FreeMatthew hasn't had any recognizable seizures in about two weeks. Of course, I share the news with everyone and he starts having them again. He had a couple of very mild ones this morning. They last barely 10 seconds, but that facial expression and hand/head quiver is unmistakable to me now. He didn't sleep to well last night so that might have had something to do with it. Walking is progressing pretty well. We still can't get him to keep the glasses on his face.He is vocalizing more and more...I am so excited about this of course. I am hearing (b-b-b-b sounds) for things that begin with b...bottle, bed, bath, bye. He also says (d-d-d-d) pretty often...not sure if he is saying it for dog or dinosaur. We do know that those dinosaurs roar though. He has a pretty distinct sound for that. I distinctly heard (k-k-k) this morning...I am thinking maybe car!
Eye Glasses and Eye Tumors
Tumors can be found on the retinas of patients with Tuberous Sclerosis. They usually do not affect the patients vision but more tumors can develop later. I have talked to a few other parents and don't recall any of them having children with the tumors. I was greatly disappointed this morning when the opthomologist told me Matthew has one in each eye. I don't really know why it is so upsetting. I know they should not be interfering with much. I guess things have just been going on so smoothly, I was sure they would find nothing. They are located on the retina near the nerve, and like all people, Matthew has a natural blindspot. located there. His is likely to be a little larger than most people. Aside from Tuberous Sclerosis, he will need eyeglasses for his astigmatism. Will be strange to see that beautiful face covered by glasses. We will get them in a week. Still trying to figure out just how we will keep them on him. I guess in a way..I can't wait to see him in the glasses...they made him look so big! :-) Kisses and TeethFinally, Matthew is cutting those lower front teeth. He has had the two in the middle for some time, but the two on each side are just beginning to emerge. Creating quite a cranky kid at times. For a couple of weeks now I have been the lucky recpient of those sloppy wet Matthew kisses. He is finally sharing them with everyone else. He has also figured out that keys go in the door. Give him a set of keys and he heads right for the door.
Aaron is always trying to help him now. Encouraging him to walk. I think he just can't wait till Matthew can really chase him. He still talks constantly about going play with his cousins Cora, Ryan (or lion as he says it) and Roy. I just can't seem to make him understand that they are quite a long ways away!.
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