Neurological reorganization update

puzzleAs many of you already know, Ben has bipolar disorder on top of his ADHD. We can medicate him for the bipolar, but any medication we have tried for ADHD has made him very irritable, angry and manic, so we have learned to do our best and live with the ADHD as a child who can’t focus is better than a child who puts fists through bedroom doors.

I’ve been asked recently by a few of you how the neurological reorganization has been going. We have seen some progress, but not the miraculous changes that others have seen or what we hoped to see. For those who have asked me about NR work, I still believe in it, but also believe it has its limits. For us it hasn’t been the “be all end all” that others have claimed it to be. Maybe we haven’t been dedicated enough to do the entire program each day but for those who have done it, you know how exhausting it can be. One mom on an NR group that I am in, put my feelings into words one day when she said, “I hate NR. I hate it more than my kids hate it. It consumes my life, it makes me fight with my kids, and it is just downright exhausting!” It is indeed exhausting because it is hard work and most kids resist doing the tummy crawling, creeping on hands and knees, etc, that is required day in and day out in order to see progress. For a mom with a resistant child, it is emotionally exhausting to say, “No, you can’t: watch TV, play outside, play videogames, ride your bike, etc., until your exercises are done”, knowing full well your child is going to “lose it” that he has to do those dreaded exercises yet again. Surprisingly, however, Ben has actually been more compliant with his program than Micheline has been. He is the one with more issues, and yet he is the one who will do the work required; he will do it complaining every step of the way, but he usually gets the job done.

Micheline, on the other hand seems to always manage to find a way to slip out of the room to the bathroom, or escape outside while I am watching Ben do his patterns. Other times she pretends to not know what is required of her. The two of them do not do well both creeping or crawling at the same time, nor is it good to have them both doing patterns at the same time, so we usually have one crawling while the other does patterns. I’m not quite sure how Micheline manages to get out of doing exercises, but it seems I turn my back for a mere second and she has disappeared, or she does her best to whine and outlast me until I have to go make dinner or some other task that gets her out of my line of sight.

Well, her behavior has deteriorated over the past few months. Impulses that used to be more readily controlled are not. Shrieking loudly for no reason at all, bumping into people again, and intentionally trying to hurt another child or the dog have all surfaced again recently. She will deny what she has done immediately, and “I’m not lying” are three of the most common words out of her mouth lately, even as it is evident when she is indeed telling an untruth.

As much as I would like to have faith in NR, I don’t believe in putting all my eggs in one basket. I hate medicating children and wish there were another way, but her behaviors have really gotten out of hand lately and even with using the best counseling techniques, she is more and more impulsive to the point where it is causing problems with social interaction at school.

I have recommitted to doing this program because I saw huge benefits when she first started. Retained birth reflexes were going away, she was more aware of where her body was in space, etc. However, I also know that we need some help right now, not in two years when the NR may or may not have done everything that practitioners claim it can do. I do believe that some of the regressions we have recently seen are a result of starting back with the program, and that I need to have the faith to continue. In the meantime, however, Micheline needs to function at school, which she has not been able to do when she can’t pay attention in the classroom.

Micheline used to be on Tenex, but it made her so exhausted and didn’t seem to be working as well as it used to. So, this month we tried Strattera, hoping to avoid any of the stimulant meds, but she seemed even worse on it. So, back to the dr. we went today, where I consented to try a stimulant medication.

Already having another child on antipyschotics, I just didn’t want to go the stimulant route with Micheline. I feel like I have done everything in my power to avoid it, however, from diet changes to NR, to audiovisual enhancement training, herbal remedies and counseling. Each has helped a bit, but the puzzle that is my daughter requires more than one piece to be complete, and I do feel that there are times that the medication component is necessary even though it may be hated and dreaded.

So, tonight I go to bed, wondering and worrying how she will be tmw after being given a stimulant. Will it help to control her impulses? Will it make her feel like she can finally focus on the task in front of her or will it merely give her stomach aches, and perhaps make her irritable as stimulants did to her brother?

I will say I’m very grateful for a pediatrician who doesn’t push meds. We have taken quite awhile to get to this step and tried so many other options along the way, that I feel that we are proceeding cautiously rather than rushing into this choice.

She also told me today that should the generic methylphenidate not work for us, that there are other options. I don’t even want to think about it. Anyone who has had children who build up “med fatigue” where meds seem to quit working, hates to hear the words “medication change.” When it comes to Ben, those two words rank right up there with similar two word phrases such as “firing squad” and “death wish”. Forrest Gump had it all wrong. It’s not life that is like a box of chocolates, but rather med changes that are like a box of chocolates because you truly don’t know what you will get when you start playing around with brain chemicals. Sometimes you find the perfect match and the med is a life saver. Other times, it is horrible, and you pray non-stop for 8+ hours as you wait for it to wear off.

I know there are some who might not agree with our decision, but with both kids, I never resorted to meds until I felt that we had exhausted all other options. Meanwhile, it’s back to the grind with more neuro work with Micheline. I have faith it can help. As Nina, one of the practitioners has said, we can do two years of he** or we can not do it and do many more. My vote is for two years.

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8 Comments

Filed under ADHD, Medications

8 responses to “Neurological reorganization update

  1. Wow, im so impressed by the way your family is handling these problems. I look forward to reading more about your progress.

  2. This is the second time I heard of this today. Interesting.

  3. Peggy

    My prayers are with you for sticking with the neuro. We have a public DHS related agency that is sending a worker once daily to do some of the exercises with our son. We hope to convince his school to allow the paid for associate to take on some of his execises as well. I do the clean up, leftovers of exercises in the evening. When I was doing all the exercises by myself it was just too much. Look for free help, friend help, family help, volunteer help, school help, agency help, church help and get some relief for yourself.

    Praying for you in Iowa.

  4. Cassytoo

    I just read this after it came up in a google search for neuroreorganization. It has now been almost two years since this post. My husband and I are looking into NR for our two adopted children, and I am wondering what your thoughts are on NR now.

    Thank you!

    • nineisenough

      I know some people swear by NR and say that it really changed their kids, but I also know quite a few who gave it up due to the stress it added to their lives. We decided to quit it because it was damaging my relationship with the children. They hated it so bad it was making our lives miserable.

      I will say the crawling on the tummy helped my daughter with her proprioception and she quit running into people. She still will walk between 2 people who are conversing rather than go around them, but she does have an increased awareness of where her body is in space.

      We switched to Rhythmic Movement Training because it has movements that the children really enjoy. They also test for retained reflexes and we do movements based on what each child needs. You might want to look them up under Harold Blomberg. I went through the first two levels of training myself and was amazed at how much better I felt after having movements done on me. The kids actually request the passive movements sometimes when they are out of sorts and I can watch them calm down right before my eyes.

      I have also done a first level training of H.A.N.D.L.E. and do some generic exercises for the kids in that program as well. I have not paid to have them fully evaluated and a program designed for them but rather follow some general basic movements that are calming and centering for them and movements that help them cross the midline.

      Now that we are no longer formally doing NR, they are willing to do creeping and crawling as kind of a “tune up” to their systems if I only ask them to do it 3 or 4 times across the room and back. It was when they were doing 10-15 minutes at a time 3 x/day that they were really fighting me on it.

      I also throw in a bit of Brain Gym that I have picked up along the way from my daughter’s OT and a bit of Bal-a-Vis-X as well that her OT taught me. I have not been trained in either, but the Bal-A-Vis-X is great for helping her cross the midline which is one of her biggest weaknesses. She is also taking piano lessons to help with that and although she hates them, I tell her she will thank me one day. :-)

    • nineisenough

      I forgot to add that now that I am homeschooling my 3 youngest, Micheline is off of all ADHD meds. The methylin only worked for a short time and then she needed her dose increased too much. We then tried Concerta and it gave her eye tics. Dr. tried to add Clonodine to stop the eye tics but it didn’t work. The Clonodine alone made her exhausted and I finally said “to heck with it.” If we can handle her behaviors at home without meds, then that is what I prefer to do. She is off task quite often but she isn’t bothering a classroom full of kids so we do what we have to. If she needs to do her math facts hanging upside down or up in a tree, I don’t care as long as we can get the work done. One of the great positives of homeschooling…among many! My four youngest are very kinesthetic learners so we do LOTS of hands-on science experiments, math games, art, etc., and they are much happier than when they were in public school.

  5. Cassytoo

    Thank you for taking the time to reply; I really appreciate it!

  6. Boni Moretti

    I am 9 months into NR with my son. I have seen changes in him but slowly. I do find it is easy to forget the improvements I see as behaviors change. My son is 11 from Russia with FAS. Aside from NR other therapies only offer “management” of the symptoms. Realistically I know improvement can be made, and is being made but the damage in his brain cannot be fully repaired. After 9 months he is more in control of his body, his reading has improved, I think, 2 grade levels this year. (The testing comes in May) His teachers see much more maturity in him. I think the biggest change is empathy. He can intuit what others may be feeling. A subtle but important change…
    As far as getting him to do the program. Ours is about 25 to 30 minutes if he just does it. Of course he almost never “just does it”, So I find ways it is fun. He commando crawls as I shoot him with the nerf gun. I walk back and forth leaving a treat at each end. We have a game called hyper dash and I carry the game piece and he crawls to the target. I can do this another year for sure…
    Boni

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