I do apologize for the long delay in updating the blog. It’s been a busy summer, and now its over. School started yesterday.

When we left off, Sebastian was trying to learn how to swallow Intuniv. The whole process took about two weeks. I read everything I could and we tried peanut butter, ice cream, yogurt, etc. We tried practicing with tic tacs and other small candy. I bought pill glide spray and a special cup designed to make swallowing pills easy. Nothing worked. There was massive frustration and discord at my house. My husband would throw his hands up in frustration and tell him we were done; he wouldn’t need to swallow the pill. However, the results were so promising, it didn’t make sense to give up.

Eventually what did work was having Sebastian lay on his back and holding his mouth open. Then when the pill was in the proper place in the back of his throat, as long as his mouth was open, he could open his throat and swallow the pill. After several times, he could do it himself without having anyone manually holding his mouth open. This was very unpleasant for everyone, but it did work. Thereafter, Sebastian would happily show anyone who would watch his new-found skill. He was very proud of himself.

Intuniv is working really beautifully. Sebastian is the child that he has always wanted to be, patient, mature, relaxed, emotionally connected. He isn’t constantly fidgeting. It makes me realize just how miserable he must have been for the first 6 years of his life. No one wants to be angry and volatile and agitated all the time. No one wants to be out of control. Sebastian has also been doing neural-bio feedback all summer.

The bio-feedback started with a brain map. The brain map was a session where he was hooked up to probably 30 or so electrodes that measured the brain wave activity in the different parts of his brain. The actual mapping was VERY stressful for Sebastian. The worst part was the electrodes on his ears. It was scary and therefore hurt much more because of his anxiety. However, he got through it and the result was information about what was going on in his complicated and talented little brain.

I am not a nuero- psychologist, but here are the basics as I understand them: There are four different wave lengths in the brain, Alpha, Beta, Delta, Theta. Children with ADHD typically have too many slow waves (Delta and Theta). Sebastian’s map revealed he had eight times too many slow waves. Typically children with ADHD have three times too many slow waves. Dave, Sebastian’s nuero- psychologist was able to pin point areas of the brain that are most susceptible to problems and formulate a therapeutic plan.

Again, in a nutshell, here is how his therapy sessions work. Dave hooks up three or four electrodes to an area of Sebastian’s brain. Then they establish a baseline for the day with about a 30-60 second snap shot. If his delta and theta waves are let’s say, at 50, Dave will set the “goal” at 40. Then Sebastian watches an airplane on the computer screen, the airplane rises and falls with the number of delta/theta waves his brain is producing. As the number of waves is in the target zone he receives “points.” It’s like a video game for your brain. Sebastian has had 20 sessions and his baseline is dropping. It’s working. He will need to do a minimum of 20 more sessions, but when he is done, he should receive permanent relief from some of the symptoms he has.

The summer has been really wonderful. Sebastian was wonderful during a week long vacation with extended family. He has been at home with his brother, sister and a nanny for the time when I am working. However, he has happily taken a daily nap. (Intuniv side effect)

About three weeks ago, I decided to phase out the nap in order to adjust to a school schedule. By the end of week one all of his symptoms were raging. It was like all of his progress had been “undone.” I was freaking out! He can’t go to school like this. He’s emotionally volatile, impulsive and aggressive. He got sick, and I reinstituted the nap. With sleep, Sebastian was totally fine.

School started yesterday. So far day 1 and 2 weren’t horrible, although he did come home and crash after serious meltdowns each day. Overall, I’m really hopeful that we won’t have any four-visit-to-the-principal weeks. J

Sebastian has ADHD, there isn’t really any question about that. The biggest problem for him is a total lack of impulse control. While we have spent countless hours trying to strengthen the pathways in his brain that are the”good decisions” it hasn’t worked. He has definitely improved, but he still makes really bad decisions on a daily basis. The Melmed Center told us about Intuniv. It is a non-stimulant ADHD medication that seems to be particularly helpful with impulse control. It is a medication that has been used to control high blood pressure for years, and they think it works by improving information flow to the frontal lobe of the brain. After one particularly bad week with FOUR trips to the principals office, we decided it was time to try.

The worst part so far has been trying to get Sebastian to swallow the pill. It cannot be crushed, chewed or taken any other way. On day 1, after about 1.5 hours, he was able to swallow the 1 mg pill with a straw. The most common side effect of Intuniv seems to be lethargy or sleepiness that can last for the first three weeks. He was a bit calmer and seemed more in control of himself. He yelled at a friend and immediately corrected himself. So far so good.

The next day, day 2, he couldn’t swallow the darned pill and ended up chewing it up. He was very sleepy all day. He took a nap and was very mellow. He also seemed to be very in control. At one point he went outside before dinner. My husband followed him out and  asked how he was doing. He said he was sad, because he was hungry and dinner wasn’t quite ready. Even though, I, mom had told him he could have a snack he didn’t want to ruin his dinner so he was waiting. This isn’t typical for Sebastian. He had a great day. Intuniv seemed very promising.

Day 3- we weren’t going to let Sebastian chew it up today, seeing as though it had made him so tired. The morning was fraught with the drama of trying to swallow the dang pill. We tried honey, peanut butter, ice cream, a straw, and multiple mouth positions. Sebastian was very frustrated and so was my husband. Tony, in a moment of frustration, said “this just isn’t going to work for us.” And told Sebastian he didn’t need to keep trying.  I was really bummed. We had said we would try for three weeks, unless there were any major problems, since that was how long it could take to really understand if it would help. Tony’s point was a good one, tomorrow would be Monday, and we simply couldn’t spend hours every morning trying to get Sebastian to swallow a pill. I decided to read more mommy blogs, get some ideas and start giving it to him at night. That way, maybe he wouldn’t be so tired and we wouldn’t have the pressure of trying to get out the door in the morning. That evening, things were much more calm and he managed to swallow the pill. He was very proud.

The next day, Monday, was day 4- sort of. He had taken the Intuniv the previous night and now would be going to school. Tony and I had met with the IEP team the week before and we were trying a different behavior modification plan too. He would both earn and lose “dollars” for certain behavior. I e-mailed his teacher to let her know we were trying the intuniv, but when I checked in with her at the end of the day, she hadn’t gotten the e-mail. She said she didn’t notice any behavioral difference. He had netted $4 by the end of the day. Apparently he had earned $5, but then lost it for hitting someone, and earned an additional $4 that he kept. Not a terrible day for Sebastian. That evening he swallowed the pill with minimal effort! YAY!

Today, Tuesday, is day 5. He didn’t sleep well last night and is experiencing some dry mouth. He has been eating really well while on the drug, but he also complained of a headache yesterday. I gave him some tylenol in the afternoon. So far, it’s too early to tell. I think it is helping him feel calm and better control himself, without changing his personality or getting him “high” on amphetamines.  The side effects of dry mouth, headache and sleep disturbance should be temporary. At this point, we are willing to give it three weeks. I just hope it helps at school. Because, while I am thrilled he is doing so well at home, school and friends are the real issue.

I’ll keep updating

SINGULAIR may cause serious side effects. Behavior and mood-related changes have been reported: agitation including aggressive behavior or hostility, bad or vivid dreams, depression, disorientation (confusion), feeling anxious, hallucinations (seeing or hearing things that are not really there), irritability, restlessness, sleepwalking, suicidal thoughts and actions (including suicide),
tremor, and trouble sleeping. Tell your healthcare provider right away if you have, or your child has, any of these symptoms while taking SINGULAIR.

Sebastian has been on Singulair for 3.5 years. We have had blood tests looking for food allergies related to behavior problems. We have been to pediatricians, developmental pediatricians, and naturopaths and NO ONE has recommended we cease singulair! How did I find this? A mom’s blog. Thank you Momma’s

GRRRRR

It’s been awhile since my last post. Honestly, the past several months with Sebastian have been really really tough and I couldn’t bring myself to write about the roller coaster we were on.

Sebastian started at a new school right after Christmas vacation. The first two weeks went very well, both at home and school. Then things began to unravel with a vengeance. At home, Sebastian was angry and moody, non compliant, and sometimes quite mean to his brother. For my husband and I, this is not new and not an emergency. At school however, this constituted an emergency. He visited the principal three times in one week and on several days I had to pick him up from school because of his behavior. No amount of boundary setting or discipline seemed to make a difference. To me, it was obvious that he was literally out of control- he could not control his mood or behavior. He was EXTREMELY impulsive and frequently lashed out in anger or frustration.

I couldn’t understand what had changed. He had had a month or so when he was amazing. Mature, happy, totally under control. At some point I was reading about different foods that could help with impulse control. Oranges were on the list. We have 10 orange trees on our property and during the time when Sebastian was so awesome, he was eating 3 or more oranges a day! Now, the problem was how to get him to continue consuming the oranges. Was it vitamin C or something else about the oranges?

At this point, we were just finishing up initial testing with Dr. Texidor. This academic testing took about 6-8 hours and measured all of Sebastian’s learning. The results were very interesting. He is very advanced in certain areas only, other areas he is at grade level and he seemed unable to put two different skills together to perform a separate task. My husband and I talked with Dr. Texidor about Sebastian’s spiraling out of control, he said Sebastian has ADHD, impulsive and hyperactive, not inattentive. He suggested we try stimulant medication and get him functioning prior to starting neural bio-feedback.

My husband and I have been resistant to medicating Sebastian, but we were ready to try. The next week, we gave Sebastian Adderall. The adderall worked, sort of. He focused during the day and was calmer. He could get through the school day. However, in the afternoon Sebastian crashed hard. He became very sad and had meltdowns I hadn’t seen since he was two. He also stopped eating and seemed to be having sleep problems. All in all, I was pleased he was doing better in school, so was he. But, I was getting him high every day using amphetamines and then witnessing him crash off his high into the depths of despair.

I talked with his pediatrician and we agreed to try a different medication. Vyvanse is the newest stimulant medication. It is reported to have a slower release and therefore may lessen the adderall crash. We tried the Vyvanse on a Sunday. The first several hours, Sebastian was happy and very affectionate. Then he started talking and couldn’t stop. He couldn’t put a sentence together and at the same time couldn’t stop talking. He then sat down a played with legos- all day. After a few hours, he was no longer happy and affectionate. Now he was angry, violent and very agitated. He couldn’t leave the legos. Eight hours later, when I insisted we go outside, my six year old was like an out of control mental patient. He kicked, screamed and cried. I felt so bad for him. He was obviously having a terrible reaction to the drug. There was nothing to do except wait it out. He didn’t sleep that night. Instead he kept getting up and going back to the legos. I felt terrible, guilty and like a total failure. But, at least it was clear that I would rather do almost anything else than give Sebastian a stimulant. I would rather Sebastian be in a classroom completely focused on behavior and work on his underlying issues than ever give that to him again. I felt as if I was using him as a lab rat.

The next weeks didn’t get any better. He had had a cold and his asthma became completely out of control. Over the next two weeks we had two trips to the hospital with Sebastian, one in an ambulance.  In order to get under control, we had to give him a nebuelizer treatment of albuterol every two hours, around the clock. A side effect of the albuterol is a jittery high- awesome. That is just what he needs. He also was unable to engage in any physical activity without having a terrible asthma attack- just what a hyperactive kid needs.

After my experiment with stimulants I began researching. I read about amino acids that you can buy over the counter that are thought to effect the same neuro transmitters as the stimulant drugs. The problem is that no one has done any reliable research. No one could tell me the right dosage, how long the effects would last or what combination of aminos to try. We had been using GABA calm for several months and it seemed to make a big difference. I visited an herbalist and bought soothing relaxing tea, asthma tea, allergy tea. I consulted with a naturopath. He said that the cause of the allergies, asthma and the behavior problems is a “leaky gut.” Peptides seep out of his stomach into his body and reek havok on his whole system. He recommended two approaches. 1. A homeopathic remedy of sulphur tablets before bed and 2. Cut out all meat, wheat, and dairy, add a probiotic.

I decided I couldn’t cut out all meat, wheat and dairy quite yet. I booked an appointment with his allergist intending to request a full blood test for allergies. We had already done a skin test, but the results were inconclusive.  If we were going to make a drastic diet change, I needed to get my whole family on board.

At this point, Sebastian was taking multi-vitamins, omega 3, singulair (asthma), a nasal spray(allergies) xopenex(for asthma), flovent(inhaled steroid for ashma), zytec (allergies), Gaba, sulphur, and a probiotic. His health was so screwed up there was no way of telling what was causing or helping what.

Eventually, the allergies and asthma became under control. His behavior also improved. We ran out of the sulphur, the nasal spray, and the GABA over a period of several weeks. Days later, not having each of these didn’t seem to make any difference. We had a big bottle of vitamin C that I bought back when I came up with the Oranges theory. Sebastian requested them and I started giving him 1000mg Vitamin C morning and night. The vitamin C really seems to have improved his mood. He wakes up happy and affectionate.  His asthma and allergies and under control and while he is still Sebastian, he is doing fairly well in school. His teacher reported his best morning ever last week!

Now, in April 2011, we seem to have made it through a terrible stretch into a better season. I am left not knowing what “works” and what doesn’t but happy to be out of survival mode and happy to make it through a week without a call from the school

When your “outside-the-bell-curve child” goes to school, you are understandably a little nervous. Prior to Sebastian going into pre-school (at an excellent catholic school) I talked with the teachers and I tried to warn them. They assured me that they were professionals, they had seen children for many many years and there was no reasons that they couldn’t handle Sebastian. I was over-reacting.

Well, things seemed pretty good at first, but the thing with Sebastian, is that with a typical child you may have to correct a behavior 2,3 maybe even 10 times, with Sebastian it may take 100. So, by the end of the first month of school when most kids had settled down and into a routine, this wasn’t the case with Sebastian.

Soon enough picking him up from school became a nightmare. Everyday there were issues reported to me. While the teachers were supportive of me and Sebastian, they were frustrated. I received several calls from the principal, a good friend of mine, when Sebastian had been sent to the principal for various issues. A few times I even needed to pick him up from school early and everyday after school he would fall apart completely. I talked with my mentor and children’s babysitter who I mentioned previously. She has two older twins who have not been easy. She has the experience to know where I am coming from, and she gave me some of the best advice I had ever received. “Go to the school and hang out.” Why hadn’t I thought of that? I tried to enforce the rules at home and had reprimanded him plenty. But Lisa’s idea, I hadn’t even thought of. The next day, I spent the entire day in the classroom.

This was the best thing I could have done. These committed and loving teachers were all over my child. During the day he was corrected for everything. He was actually reprimanded for coloring with more than one crayon at a time. In an attempt to prevent bad behavior or incident’s they were over correcting and over reacting to Sebastian. No wonder he fell apart at the end of the day- he was so stressed out. I also noticed they had virtually no unstructured time. It wasn’t that his teachers were bad or mean or anything but well intentioned, but the environment had some problems. At this point I made several decisions, first I needed to change him to a half day program and talk with the principal about my observations, second I needed to bring in help.

I contacted a local agency called EC Cares, they brought in a third party to observe Sebastian in class and do some evaluations to see if he qualified for special education services. He certainly didn’t qualify under the usual categories, but because he was having significant issued at school, home and with sitters, they squeezed him in under a “other health impairment” or “emotional problems” not a great label, but if you really want to advocate for your unusual/advanced/special child you may have to think outside the box. EC Cares did an evaluation and pointed out Sebastian’s strengths, weaknesses and came up with a plan to improve certain problematic behavior. They also stated in their report that Sebastian was corrected more often then his peers for the same behavior and that he needed more positive reinforcement. Yes! I had effectively advocated for my child without being a huge pain for the teachers. Between the principal and the outside consultant the teachers changed the class not just for Sebastian, but for all the kids. They implemented more unstructured time and more positive reinforcement and with an actual plan to address behavior we wanted to change, the school and home got on the same page. To me, this is Victory! This doesn’t mean we didn’t have issues, but we were all empowered and consistent.

We have applied this to every school Sebastian has been at. I learned that you may think you know what’s going on, but without spending time at school you can’t assume. Forming a partnership with your child’s teacher is essential. The year ended with actual improvement in all the areas we were looking for!

This is by no means the end of the story or the end of the problems. Just as we were figuring out the school and resources we needed, we moved to Phoenix.