In the past few weeks many of my "facebook" friends have noticed my posts and status talking about Collin, some issues, and Neurofibromatosis. Lots of people have asked what is going on? What is neurofibromatosis? when did this all start? what does this all mean? So I thought I would start a blog to answer some of those questions as well as to help keep people up to date on Collin. As well as hopefully find and help other families that are going through the SAME thing.
So where do we start? I guess I will start with What is going on? The easy answer to that is "alot." Basically Collin has a lot of learning disabilities and Matt and I are searching to find answers! I won't leave you hanging...I will get back to all of that!
Basically all these things that are going on are attributed to Neurofibromatosis...What is Neurofibromatosis? Well Neurofibromatosis or NF for short is a genetic disorder that can cause a plethora of Learning disabilities, and "tumors" to grow on the skin, and the brain http://nfnetwork.org/what_is_nf/ <-------- here is some good info on what it is. If you click on the link you will see it talk about a few different kinds of NF..although he doesn't have an official classification we believe he has NF1. We will know for sure once we see a Genetics Dr.
I guess that brings us to When did this ALL start? In someways it started the day Collin was born, in other ways it just started a few weeks ago. If you followed the "link" I posted you will see that one of the things with NF are Cafe Au lait's or CAL's in NF speak. With in weeks of Collin being born he began noticing he had some CAL's...here is where I should tell you that I myself have NF, but it was NEVER an issue and I have never given NF a second thought until Collin! Of corse we asked our old Pedi whom we shall call Dr. Doo-doohead! (This will become evident as to why as you read on). So, Dr. D told us Oh it's nothing to worry about. He probably has NF like you, but it WILL NOT be an issue. Ok, makes sense to me. I never had any issues, never saw a special Dr so all is good in our world.
Around the age of 6 months although he was sitting and commando crawling I started noticing that to me anyway Collin seemed to be a tad weaker on the left side and I felt like his left him turned in ever so slightly. So of corse I brought THIS up to Dr. Doo-doohead. and I point blank asked him "Could the NF be causing this? Should I be worried" to this he responded that Collin was perfectly fine and that given my background (if you are reading this and DON'T know me, I was a Early Intervention Teacher) I was just reading to much into it all. OK seems feasible. I mean I work with kids disabilities all day maybe I am just looking for something.
Fast forward to age 14 months. I am extremely pregnant (due any day) and Collin is still NOT walking. He can pull up and cruise the furniture but he's not independently walking. I yet again address Dr. D and he gives me the same answer. He is fine..NF has NOTHING to do with this and he is just being a LAZY baby. Ok, ok..he is probably right. He finally started walking a few weeks later and I think to myself OK, guess I am just paranoid.
Fast forward all the way to the start of Kindergarten, other than mentioning a few times to the Dr that Collin is "flaky or in his own world" I don't really address any concerns. Dr. D has told me he is fine. School starts and it quickly becomes evident that Collin is just not where he should be. I call the Dr and he says not to worry that Collin will catch up, and we will further discuss it at his well child check up. Thank Goodness Collin got an AMAZING Kindergarten. Mrs. Castriotta. She addressed me that Collin wasn't where she would like him to be and I agreed 100% she helped Collin get every service they could throw at him. I am talking Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST), and extra Math and reading help.
Even with IEP (individual educational plan) in hand Dr. Doo-doohead still says "Collin is FINE, he will out grow it, and NO you don't need to see a specialist". So now I am starting to second guess myself...for the above and a other things I didn't like that how he handled with my other kids we decide to switch Dr.'s. Matt and I decide it best that we see a Pediatrician (Dr. D is a family practitioner). I ask some friends and come to learn about Dr. Osterov. With all the amazing things we hear, and in investigating into her practice we decided to take the plunge and make the switch. This ladies and gentlemen is the best thing I EVER did and where it ALL STARTS. One look at Collin's skin and the question "who are the specialists Collin sees" set it all in motion. Dr. Osterov is stunned and dare I say disgusted when we say "no one" and proceed to tell her what our FORMER DR has told us. Dr. Osterov tells us that NF is not a thing to mess around with and that kids with NF can develop tumors in their brains and on their optical nerves..it can cause BLINDNESS. She also said the NUMBER 1 factor that most kids with NF have is Learning Disabilities. Dear lord, what have I done to my kid by waiting SOOO Long. Dr Osterov gives us the names and numbers of people we need to see and so we begin our journey of finding out about NF and more importantly about Collin.
By this point Collin is about to start 1st grade and the waiting list is UBER long to get into the first Dr we need to see. A pediatric developmental specialist in Boston at the Tufts floating hospital for Children. Can I just say what a LONG process this is. First before they will even put him on the waiting list there is a TON of paper work to do. It required myself filling out a 15 page report on Collin. As well as his teacher doing a 10 page one. Ohh here I would like to add a huge shout out to not only Mrs. Bohigian Collin's class teacher, my also Mrs Zib who at the time was Collin's special needs teacher. They both filled out a report so they could get a true pic of Collin. Finally, on April 6, 2012 we get to meet with Dr. Davis. A very very sweet Dr. We start off in her office and she sets Collin up at a desk with some blocks while she talks with Matt and I about Collin's medical history, our concerns and basically why were were there. Let me just tell you we could have knocked this women over with a feather when she heard the "Old" dr's opinion and that seeing a specialist was NOT important. Anyway I digress. After talking with Matt and I for a good hour she sent us to the waiting room and did some "games" with Collin. She also called us back in and did a quick physical so she could see his CAL's and what I meant about his left hip/leg.
Two weeks later with OUT Collin, Matt and I went back into Boston to meet with Dr. Davis about her findings. This visit brought so many answers, some relief and some anxiety. So this kind of goes back to the "What's going on" question that everyone keeps asking me. So basically Dr Davis said YES the NF is defiantly attributing to Collin's "issues" and he is now the proud owner of several diagnosis.
Collin has the "traditional" kind of learning disability that you think of when a kid is having a hard time learning Math or reading. This is called a "Language Based LD". But, he ALSO has a "NON VERBAL" (nld) learning disability. NO this doesn't mean that he can't talk. Lord knows he can...this means that here is a great link that talks about what a NLD is http://www.ncld.org/ld-basics/related-issues/aspergers-a-nonverbal-ld/nonverbal-learning-disabilities-nvld. If you go here you will see the mention of Aspergs ( a form of Autism). I had mentioned to the Dr that all though I didn't think Collin had Aspergs every once in a while I saw a glimpse of it. She said that is part of the NLD..NO Collin doesn't have Aspergs, or any form of Autism, but because of my back ground that is why I was able to pick that up...it's part of a nonverbal learning disability. As if those two things (well 3 if you put the NF into it) weren't enough Collin ALSO has a "Visual Processing Disorder" It really is just what is sounds like. What he "takes in visually" is misinterpreted by him brain..so to speak, and just because that is not enough he ALSO has a "executive processing disorder" Here is a great way to understand what that is. Think of a secretary...they keep everything on task, running smoothly and on time and organized. Well the "secretary" part of Collin's brain (this is the front part of the brain) miss fires. It has a hard time staying on task, keeping all he is suppose to be doing organized. AHHHHHHHH it all makes so much sense. What we thought of as being flaky and in his own little world even at a young age was this the executive processing disorder! So, that is that...
As for "What's next" well, Collin is about to finish up first grade. He will have to do the "extended school year" yeah..summer school. Can anyone guess how happy he is about that? NOT! (unlike his sister who thinks it's NO FAIR Collin gets to go to school in the summer and she can't).
Collin had his eyes examined in December, but needs to go back again in June for a recheck and decide if glasses are needed. Most kids with VPD's wear glasses.
In late June (the 26th) he will see a Genetics Dr to get classified as to what type of NF he has. As well as make sure there are no other kind of Syndrome's lurking. Then in Late July he will see a Neurology Dr. It is important we see the Genetics Dr first so the Neurology dr will know just what type of NF we are dealing with and what type of tumors we are looking for. He will more than likely..basically most defiantly need a MRI to make sure there are no tumors in his brain.
We are on the "Wait list" for the Neuro phyc doctor who will be able to tell us EXACTLY the type of programs that will help a kid like Collin. Problem is he is number 134 (as of last week) on the wait list and it's a 8 month (or longer) wait. Then in Feb we will go back and see Dr. Davis the behavioral specialist.
So THAT is what is going on with Collin...all of this is curtsy of two little letter NF!!!! I hope to update this often and encourage you all to ask questions, pass this blog on to someone else or what have you!
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