EEG Results and Sickness Update

There is so much to blog about, including the big Fishing for Tucker tournament. Despite the rain, it was a huge success!! 96 boats entered the tournament, there were bands playing all afternoon, jambalaya and cokes being sold, the raffle tickets, a bake sale, face painting, and tons of people and donations!!


My cousin and uncle came in from Kentucky, and Tucker was so excited that “Jon Micah” was there with him, he went right to bossing him around, as if no time had passed since he last saw him. Molli loves him, too, but she calls him “Michael Jackson”….still haven’t figured that one out, haha. This year they added a Kids Fishing Derby, and lots of kids came out to fish in the Cabela’s pond. The kids loved it, and some of the fish they caught were huge.

You can friend “Fishing for Tucker” on facebook or go to fishingfortucker.com to learn more about the event. It is amazing that our family and the local community put this on to help us pay for Tucker’s medical and therapy expenses.

The tournament was Saturday, and then we left for Houston on Monday. If anyone is thinking: that was a horrible idea, well you are right! I don’t know why I didn’t foresee the scheduling as an issue. We schedule the appointments so far in advance that I just take whatever date they give me, then by the time I knew when the tournament was, it would have been very hard to move the appointments for two drs. Anyways….Mom, Tucker, and I were exhausted before we even began the trip.

So we left Monday afternoon, and of course as soon as we’re on the road Tucker was asking to see Morgan and Grace. We met them at Taco Bell for dinner in LC, they were so impressed to watch him eat applesauce by mouth! That was the first time that he ate for us that wasn’t at home or at school. He did great, even with the distractions all around him. He ended up eating very well for the whole trip-pudding and yogurt when we were away from the hotel room, and then sweet potatoes and beans when we were in the hotel room because we needed the microwave. He is doing great with the eating!

I scheduled the appointments very early in the day to reduce wait time (we usually wait on the drs at least 2 hours!), so we didn’t spend the night in LC. We said good-bye and headed on to Houston. I hadn’t made hotel reservations, as I knew there was a chance we’d give up and not be able to make the whole drive. So while I drove, mom was trying to make reservations on my IPhone, which was almost dead and therefore stuck to the very short charging cord. Well, my cup full of ice and water was open, and the phone fell into it! So there went my phone, luckily mom made the reservations first, we just weren’t sure how to find the hotel after that…… but anyways, we’d been there so many times that we found it very easily.

Tucker was of course thrilled to be at the hotel, so we got ready for bed and were asleep by 1130. The next morning we were up by 6 and we headed to see Dr. K at 745. The wait was very short (yay!) as we had an 830am appointment. We found out last week that Dr. K is expecting a baby, so we had to tell her congrats, of course. She looked so excited when she came in to see us, I thought she was excited because we told her congrats…..it turned out she had some pretty great news for us.

Now, at first this doesn’t sound good. We (as in Tucker’s parents, grandparents, caregivers, teachers, etc.) have known for a long time that Tucker’s sleep and his brain activity are not quite right. We have never actually seen him have a seizure, I don’t know anything about seizure meds or dealing with seizures…but we knew that proving that he had seizures would make sense. In 2008, Tucker’s lung dr in BR ordered a sleep study, and the sleep study showed abnormal brain activity. Because he is not a neurologist, he referred us to the BR neurologist, who ordered a 15 minute EEG, and then a 23 hour EEG. Both of these came back normal. Tucker continued to have abnormal sleep studies, but the neurologist said the EEG was normal, so that was the final word, not the sleep study.

Fast forward to 2011. Dr. K saw the sleep study results, and she ordered a 23 hour EEG in Houston. We went for this test in December, I posted about it a while ago. It takes 4 weeks to get results. So we timed it perfectly to go back to see Dr. K, although that was not on purpose.

Dr. K said that Tucker’s EEG was abnormal. He did not have any seizures for the 23 hours; however, he has epileptic activity, or spikes, or charges. The way she explained it to think of Tucker’s brain as a campfire that has been put out. You shouldn’t really have any sparks. For a regular person, every once in a while there will be a spark, and it shoots out and dies off. For Tucker, the sparks are often, and at night they are continuous. And with that, there is a risk that one or more of the sparks will fly off and start a forest fire. Luckily, as far as we know, that hasn’t happened. So then why did she seem so happy to be telling me this?? Because this type of brain activity is associated with language delay and autistic characteristics, and it has been treatable in other kids with a seizure med Lamictal. When the Lamictal works to control the brain waves, it also improves the language and behavior issues….wow!! This could be huge for Tucker.

So then I asked about his sleep-of course this brain activity makes him get poor sleep, correct? She explained that yes, it affects his sleep, so if the Lamictal works, he will get more productive sleep. This would literally change our lives. Tucker sleeps a lot…and on the weekends sometimes takes two naps. We have an almost 6 year old kid, but we schedule our lives like parents of a baby, never wanting to interrupt Tucker’s nap time or possible naps, or really even his bedtime because of the fear of him losing sleep. If we have an afternoon event scheduled, like a birthday party, I make sure Tucker sleeps late and takes a morning nap that day. Not exactly normal, but we are used to it. For Tucker to actually get 8-10 hours of sleep at night, and have that be all he needs?? I’m not sure Chris and I would know what to do with him, hahaha.

We will start the Lamictal next weekend at a small dose, then increase the does little by little for 8 weeks. Then he will repeat the 23 hour EEG to see if the meds are working. We will follow up with Dr K in June, since she is due in August. So that’s good for us, as August is a bad time for both Chris and me to take time off of work. As we were leaving, once again I showed my lack of scheduling abilities, by agreeing to an EEG date and return appointment that was right in the middle of the week when Matthew and Jon Michael are coming from Kentucky to visit. Oh yes, I’m sure Tucker would love to be in Houston while the boys are in Gonzales….. So mom pointed that out, and I went back and changed the appointments.

We got to visit with Missy (Samuel and Lauren’s mom) for a bit, as she now works in the clinic. I can’t say how great it is to see her, we enjoyed chatting with her for a bit, even though Tucker was bossing us “go to da hotel!” “get out!” the whole time. Tucker learned a huge skill on the Monday before the appointments, he learned to say NO, or “mo!” as he says it. And he is NOT afraid to use it! He told me no about 50 times a day on that trip, and I have only heard him tell Chris “mo!” once so far. After the appointment, we grabbed lunch at the hospital cafeteria, then we went to the hotel and took a 3 hour nap….seriously needed that!

That night we went to Olive Garden and Tucker licked all of the salad and breadsticks, and his own pepperoni pizza. He also demanded to see “Baby Kin” all through dinner, as if I had her hidden somewhere. I told him “we are in Texas, Kinley is in Louisiana”; he just stared at me.

We went back to the hotel, all had baths, and still went to bed early. The next morning we packed up and headed to see Dr. P at 815. We barely waited to see her, the early appointments are definitely a good idea. She came in with okay news. Tucker’s Feratin level is pretty low, this is a level that leads to Restless Leg Syndrome which Tucker has while asleep. She is going to discuss this with the sleep dr and hopefully treat it. So Tucker’s sleep should be improving soon. Tucker’s IgG levels are low, these are levels that show immunity. Last time they were checked (6 months before), his levels were normal, now they are on the lower end of normal. Dr. P said that as long as he isn’t sick often, she isn’t too worried about the numbers right now. Well, he isn’t sick that often, so we aren’t worried either. Dr. P had also checked Tucker’s blood 6 months earlier to see if his vaccines were effective. One of the vaccines that babies get, Prevnar, helps to fight against bacterial infections. Well Tucker had no immunity to that, because his vaccine did not work. So her suggestion was to give him the vaccine again, and then re-test his blood in 6 weeks to see if his body had the immune response for it. She asked us how Tucker has been doing in the last 6 months, and we said great. He had a few minor ear infections since his tubes fell out, but nothing big. I think he only missed one half-day of school so far due to illness, and that was a sinus infection. She asked us “anything else?” I said “well he is potty trained now.” Dr. P said that made her day! So mom mentioned that he eats by mouth. Dr. P and the social worker were obviously very impressed, so they had to hear all about ABA and how Tucker has changed over the past 6 months. Then the nurse came in and gave Tucker the vaccine, he was such a big kid about it. He was just happy about the band aid, he loves Band Aids! Santa Claus brought him some band aids in his stocking, they were all used up on fake “bo bos” by New Years.

We left the doctor’s office and headed home. We didn’t stop in LC as Aunt Kim was home sick and the girls were at school. We made pretty good time and got home before Chris came home from work. We did stop at Whole Foods on the way home, as Tucker was out of his Soy yogurt and pudding. I bought $50 worth…seriously…that way I don’t have to go back for a long time….and knowing that my son was going to eat every single bite made me not even care about the price. That evening was pretty low-key, as we were all very tired.

The next morning, I got up and got ready work. Chris started getting Tucker ready for school (Chris was off for two days), and he realized Tucker was very warm. Then Tucker really couldn’t put any weight on his leg that he got the shot in. His temperature was 101, and he never runs fever. Even when he has strep throat or an ear infection, his temperature doesn’t go up. So Tucker stayed home with Chris, and they both slept a lot. He still had ABA therapy with Amy in the afternoon, and he did great with that. On Friday morning, I got up and got ready for work, and Chris started getting Tucker’s medicine ready. I went in to wake Tucker up, and he yelled “light off! Blanket on!” I told him no, he had to go to school. He said “Mo! Stay home wit Daddy!” Well, excuse me! Luckily for him, that was an option, hahaha. We did take his temperature and make him try to walk a little, and he did not look good. Chris realized that we had been giving Tucker the Ibuprofen and Tylenol dosage for a 4 year old, and Tucker really needed an extra 2.5 ml to keep up with his weight. So once he figured that out, Tucker’s fever and pain were much better controlled. I did not realize that he had gotten big enough to increase the dose, good thing that Chris checks those kinds of things!

So I went to work again, leaving them home together. That day was a little better and more active, so by Saturday Tucker was bored.

By Sunday, Tucker had a cold and a scary sounding hacking cough. Chris went to the camp with his dad, and I pushed cold meds and pain meds all day. That afternoon Chris got home and took Tucker to the after hours doctor. They came home with meds for an ear infection and cough meds. I thought that maybe the ear infection and cough were related?? But unfortunately after 4 days of antibiotics, the cough is still very much there. It’s awful :( Tucker has coughing fits as long as he’s awake. He doesn’t have a fever or anything else, though, so he spent most of the week at school. He was especially excited on Tuesday when he got to bring his “vawentines” to school for his friends. On Thursday morning, the cough seemed to be much worse, and he asked to “stay home wit mama”. I called the pediatrician, and she suggested a different cough medicine. Because he had no other symptoms, she suggested I give him the new meds and watch him at home until Monday. So on Thursday Tucker watched about 8 straight hours of Mickey Mouse Clubhouse, and didn’t move around, but the only time he really had coughing relief was during his nap. We started the Delsym, along with Mucinex and the regular cold meds Thursday evening, and Tucker didn’t cough from 630pm up until 2am. Oh, and Chris lathered up Tucker’s chest with Vick’s vaporub about 5 times, and every time he woke up coughing, Chris woke up to put more on. At 2am I gave Tucker more night time cold meds, which put him back to sleep, so no more coughing until this morning.

I guess we’ll see how the weekend goes, I am hoping he has some relief soon. He is certainly a very good patient, no complaining or whining. If I was coughing like that, I would have had several meltdowns by now. Even with the hurt leg last week, he just hobbled around, no whining from him. He is such a sweet boy, thanks for checking in on us.

Feeding Appointment

Mom and I took Tucker to the feeding/motility appointment yesterday at Children's Hospital in New Orleans. Tucker slept the whole way there (he almost never sleeps in the car), and was a little "off" at the appointment. It was the first time I'd ever been to Children's; it seems like a nice enough place. Tucker weighed 15.8 kilograms and was 39 inches tall, this put him in the 22nd percentile for weight and 2nd percentile for height. This cracks me up because he seems so tall and skinny to me, I have to buy him long enough pants and then get them altered to be skinny enough. But according to the growth chart, he is a little chunky. I'd hate to see if he lost any weight, though. So the good thing about this is that he is growing, both height and weight wise. The feeding team includes a GI doctor, psychologist, and an OT. Two students also sat in on the meeting. The whole appointment took about an hour. I went over Tucker's entire medical history....at the end, the psychologist said, "well, it's no wonder that he doesn't eat." They watched him eat a little. He doesn't mind touching or playing with food (many kids get sick from the sight or smell of food), so he rubbed the cheetos crumbs and spaghettios around the plate, and ate a little of each. He also took a few sips of water. The team thought that Tucker actually had more potential than I had explained. They agree with his OT (Tucker had gone to OT Monday afternoon and we discussed his feeding) that Tucker wants to eat but several things are stopping him. His sensory issues are stopping the development of his oral motor skills. They agree with his OT that his food isn't even getting to his esophagus, so esophageal motility is not likely the problem. The doctor actually thinks Tucker doesn't have any motility issues, which was surprising to hear. Many kids with mito have motility issues, and lately Tucker has had constipation and diarrhea so much; the doctor said that didn't sound like motility issues, just sickness. He also looked at Tucker's belly and said that he isn't distended. Hopefully Tucker wasn't just having a skinny tummy day, and this doctor is right about his having no issues. The team all kind of looked at each other, then the OT suggested that Tucker start a medicine to help with his sensory issues. Tucker has been in sensory therapy for 2 years, and I had never heard of medicine to help those issues. The other members of the team nodded their heads in agreement, and the doctor wrote a prescription for Gabapentin, (neurontin), which is a medicine for seizure and pain management. It helps to stabilize membranes, which also helps with sensory issues. It will help to desensitize Tucker's mouth and tongue so that the food is not so hard for him to eat. As I took this information in, I asked if this drug would help all of Tucker's sensory issues. The doctor said it would, and that this medicine would likely help Tucker to improve in many areas. He said that Tucker might have pain every day, and he just can't tell us about it. Giving him this medicine could give him his first experience at a pain-free day, which would make his life better all around. I did not like that idea! To think that my son has been in any kind of chronic pain without us knowing is very discomforting. Tucker pulls his hair and grinds his teeth all the time. He looks like a pretty stressed out kid. Sometimes when he is just "off" with his behavior I will give him Advil or Tylenol and he becomes much happier. This only happens occasionally, but we always wonder if there is more going on with Tucker than what we can see. And of course he doesn't tell us anything. So, if he does have any chronic pain, this medicine should help. The doctor gave us a medical study that he co-authored. It was about using a pain management approach to getting nonverbal tube-fed kids transitioned onto oral feeding. It is a very interesting study. They began with 9 nonverbal toddlers, who had various medical complications that led them to be fed 100% by g-tube. These kids also had obvious stomach pain and issues, such as retching, which Tucker doesn't do. So the kids all got two things-one, they were put on the gabapentin, and two, they switched to a g/j tube so that for 8 weeks they got their formula straight into their intestines to give their tummies a break. Tucker is not getting that part. So at whatever point the kids each started eating better by mouth, the doctors added the megace in (medicine to increase appetite-Tucker was on this for many months with no real progress). After 8 weeks, 8 of the 9 kids were eating 100% by mouth. Months later, this was still working. The last kid was eating 50% by tube and 50% by mouth. The kids were weaned off of the megace at some point, not sure when. The GI doc said that the approach we tried two summers ago (giving Tucker megace to increase his appetite, then basically starving him out) is the second step in this protocol, not the first-that's why it didn't work. Tucker has to have weeks of positive eating experiences to unlearn all of the negative associations he has with food. They expect that once he has a more positive view of food, working with OT and speech once a week (plus the school lunch and snacks each day) will help his oral motor skill level improve. We have a follow up appointment in two months, and by then they just expect him to be trying food three times a day; they want him to take 5-6 real bites at each feeding. Their goal is not volume, just a change in his skill level and comfort. That's fine with us, just seeing a change like that would be great. As we left the office, Mom tried to gauge my reaction. I said the appointment could have been the best news we got in a very long time....IF it works. I am very skeptical of any good news, or any new medicine that is supposed to fix Tucker's issues. I am happy to try anything to help him, but I guess I just don't want to get my hopes up. After actually reading the study last night, I feel much more excited about the new medicine and how it could help Tucker. I will be filling his prescription tomorrow, and starting the med 3 times a day on Saturday. There should be no side effects, but I still want to wait for a non-school day to start the new medicine so I can watch Tucker carefully all day. I would love for him to be able to enjoy food. Having him eat even 50% of his food by mouth just seems unreal to me, but we will see:) It is so funny because Tucker's doctor in Houston is actually the doctor who suggested we see this feeding team. Tucker's therapists in Baton Rouge didn't even know that Children's had re-opened their feeding clinc after Katrina. (Apparently, they re-opened 2 years ago, but I had never heard of them...and believe me, I have asked around!) So we had to go to Houston to get referred back to New Orleans, and hopefully we are finally headed in a good direction.