NOAH AOC

I have been to a few conferences and have heard people talking about their children with Albinim being very active. I have a 5 year old with OCA and I am having a hard time with her concentrating, sitting still, and getting her to complete certain tasks with out me asking her several times. Is this related to her OCA or maybe just typical 5 year old stuff? Any advice?

My son has OCA1a and has always been very active since birth. I always thought it would get better with age but now at 4.5 he is still VERY active, has trouble concentrating, sitting still. It is getting worse, not better with age so I am having an eval done for ADHD. Some of his actions/behavior seem more to me then just that he cannot see things well and he is reacting to it.

So I guess I have no specific answer, can just share my experience with my son.

Has your daughter always been active or is it just more recent? I noticed more since the time my son was 2 that his attention span was not equal to most kids his age.

i've heard that ADD is more prevalent in persons with albinism. i know that my 9yo son has a tough time keeping focused. we're going to start him on meds this month to see if it will help him feel more confident so he can do his job (going to 3rd grade) better. as his doc said, it's to help him, not help his teachers.

As a child I was really active.  Back then there really was nothing like ADHD or ADD.  My mother just did not allow me hardly anything with Sugar or Red dye food coloring.  She said it was very easy to tell if I had eaten or drank something with one of those in it.

My own son who does not have albinism, was diagnosed ADHD 2 years ago.  Medication did help him focus in school.  But has some side effects that are not the best.  We are currently reevaluating him and looking in to his sleeping patterns and sensory issues to see if that might be part of his hyperactivity issue.

If you are looking into ADHD, really look into sesory issues, sleep, diet, and work with a specialist...not just your pediatricina.

 My Zachary is almost 5 years old and goes to school everyday/all day.  He has no trouble sitting still, following directions, listening to a book, watching a movie etc....  in school.  He plays nice with other kids and often wonders why other kids aren't following the rules.  

At home, he is active, but not hyperactive.  He runs around, jumps on the bed, fights with his brother but he can sit and watch a movie for the entire time, read 2-3 books sitting still, play a board game or two with the family and will play with his brother for hours--with his brother directing.

He sleeps throughout the night and will fall asleep on his own and wakes up talking and ready to go!  It does take SEVERAL times for him to do something sometimes (put on his shoes, brush his teeth, get dressed) and I am constantly telling him to "go do it".  It usually works best if I count to 10 (and he has to finish the task before I reach 10) or I direct him to the task myself (take him into the bathroom and then leave for him to brush his teeth).  I never thought of this as a attention issue--more like a 2nd child issue who has better things to do then brush his teeth.

 Please think the whole medication thing out.  As a former elementary teacher, I saw the effects of Ritalin and Adderall on these kids in school.  I taught 4, 5 and 6 and it was downright scary sometimes.  I would really consider the effects of medication on a 5-6-7 year old--that just seems too young for me.

Zachary loves structure and a schedule.  When he is prepared and knows what is coming next, he is much happier.  We work very hard on talking with him and letting him know of changes or differences in schedule.  Sometimes, I get so tired of talking, but he is such a happier kid when he understands how the schedule is going to go.  We and the school are very clear with rules and boundries and our expectations of him. 

 I do several kids that have trouble concentrating and focusing (and that are around 4-5) and none of them have albinism.  My friend had her triplets repeat K because 2/3 kids had trouble with concentration.  Another friend actually takes her son to a counselor, but he also has some other issues.  

Jo

I have done alot of reading lately on Sensory Processing Disorder, and alot of people sometimes confuse it with ADD, ADHD, and even Autism.    SPD explain's ALOT of my son's behavior, although he has not officially been diagnosed with it. 

Cheryl,

Where have you researched?  I am just curious becasue I would like to research it myself.  Jathan is too young to be showing this behavior but there is nothing like being prepared for waht might be. 

I know that I was very shocked with the results of Dr. Summers' study that she present at the conference.  There were a lot of children with Albinism also labeled as ADD / ADHD.  I am wondering if maybe even that wasn't actually something more like what I have referred you and a few others talking about as sensory processing disorder.

Jo-

I am so glad to hear you say that.  I know that medication must be used on some cases of confirmed ADD / ADHD but as a nurse that works with several Autistm clients that also have diagnosis of ADD / ADHD I have seen some of thse side effects that you are talking about.  These medications can totally change a person and end up having a very negative effect on them.  Again, I know that in some cases it is needed, but I think that a lot of doctors out there are using these medications without thinking of the effects that it can cause to children.

I have researched it online..   A doctor has not confirmed him having SPD, (he has an appt w/ a Neurologist this month) but several websites list "sympton's" that match my son to a T.  It really explain's things for me, things that I thought were more than quirks, and it makes sense after reading up on it.   Here are a couple of links..

http://www.tsbvi.edu/Education/vmi/si-dysfunction.htm

http://www.incrediblehorizons.com/sensory-integration.htm

I don't mean to get us off track on this discussion, but we have not talked about food and behavior in this post.  I have really become interested in this topic and how what are children are eating effects their behavior.

Our children are eating a diet of highly processed chemicals.  The Oreos we ate are not what they are eating.  We ate an Oreo with chocolate, vanilla, and sugar in it.  Our children eat chemicals that imitate these flavors and colors.  Some children are very senstive to these additives and when removed they see dramatic results.  

I stumbled on the Fiengold Society  and think that they have some very good information and compelling case studies.  I joined to get the information about good foods for kids.  For Mark, I did not feel it was necessary to go through the stages of the "diet" as I did not feel he was hyper-senstive.  

I know all our kids with behavior problems are not boys, but another book boys and behavior problems is called "Boys Adrift".  I got it from the library and I really think it gives a different perspective on our sons and their behavior.

I have tried with my son for the last 6 months to modify his diet ....low sugar, all homemade no processed foods, no dyes or HFCS and I notice a very small difference with his behavior. I plan to continue because it is healthy reguardless. I really wished a change in diet would have made more of a difference because it would have made everything much better.