Chiari Malformation

Well yesterday Matthew had a Neurosurgeon appointment.  Very thankful he was able to get in.  ( I had been trying to get him in since last year for this year)  After pestering the Neurosurgeon's Assistant (A wonderful Lady named Andrea) she was able to squeeze Matthew in the schedule.  So a valuable lesson is to get as many email addresses and phone numbers for contacts at your doctors office.  We were at this appointment for almost 3 hours.  YES!!  First a RN came in and got all Matthew's information, symptoms...etc.  Then a Neurosurgeon Resident came in and asked all the same questions....but was there for most of our appointment.  I was VERY impressed with this Resident.  She was very knowledgeable about Chiari and related conditions.  We discussed the idea of a Spinal MRI and maybe a swallow study.  I informed her that I asked for a Spinal MRI last year and was passed on to a Neurologist.  I will get started on the Neurologist in a bit!

So, finally Dr. M came in and confirmed that Matthew would get Spinal MRI, and a speech/swallow study.   And we are to return in 3 months.  So, I am pleased we had a doctors visit that was not a waste of a copay!!

  The Neurologist:  UGHHHHHHHHHHH  Well after over a month I still do NOT have all the genetic blood test results!  I have the results of the Chromosome Analysis and the Fragile X Syndrome both negative.  I am still waiting on the Microarray Expanded. 

   I am just tired of not knowing what is going on!  Matthew cannot even walk home from the bus stop most days.   If he plays hard at recess he is down for the night.  If he has gym it effects him.  A 6 yr old boy should not feel like his legs are giving out on him.  That they feel like pins and needles.  We are stuck between a rock and a hard place.  I cannot get him much help because he has not been diagnosed as "disabled". 

          I have decided not to organize a Chiari walk this year.  My husband still does not believe me on this but it is true.  It just takes SOOO much out of a person to organize one.  Especially if you do not have the amount of help one needs.  And going though all this with Matthew....I need to devote more time to getting him answers and treatment.  Not to mention the rest of my family.  I do have two other son's that do not get my 100% attention due to Chiari Malformation.  Over the past year or so I have helped many families and organizations at the expense of my own family.  I am not giving up on the other families, I will always be there if I am needed or can help.  But I will not be spending 7-10 hrs a day on the computer anymore.  I do work part time also.  So, if it takes me a day or two to get back to you please understand.  I will get back to you but it might not be as soon as before.  I do know how it feels to need people to understand what you are going through.  What its like to have someone listen to you when you think you are going crazy.  What its like to know what you child is going through and not getting any answers and you are second guessing yourself.  So, I will be there for you!!

Well today we seen a Neurologist.  It's the first time Matthew has seen one.  I made the appointment due to his anger/agression issues, leg/arm/belly pain and his what I think might be a form of Tactlie Dysfunction.  Of course his Neurological exam was "normal".  The Neurologist ordered blood work.  The blood tests included Fragile X Syndrome and a Chromosome Analysis.  Maybe the blood work will give us some answers but I am not counting on it!  We will see the Neurologist in 3mths. 

I was reading the paper work for today's visit from the Neurologist.  On it, there was future appointments.  He has an appointment with his Ped. Opthalmologist on the 27th and then there was an appointment with Dr. Mangano (Neurosurgeon) on March 26th.  I was like what??? I have been fighting to get an appointment with Dr. M for months now.  I even bugged the heck out of his assistant to get Matthew in for an appointment.  (I thought with no luck)  Matthew was due for his yearly visit this month and I was told that Dr. M was booked up through December.  Which you know really pisses a parent off!!   I called the scheduling center to find out about the Neurosurgery appointment.  Dr. M's nurse called the scheduling center and had them "squeeze" him in.  Which I am now a 80% happy parent with the medical field. 

While at the Neurologist appointment I receive a phone call from Anthony's school.  Letting me know that he has three unexcused tardy's and if he receives one more that he will have to have a Friday Night School.  Here I am freaking out thinking something happened to him because the school is calling.  The lady that called is VERY LUCKY I was in the middle of talking to the Neurologist and let the call go to voice mail.  (Knowing that if he was ill or something my husband would be calling me right after their phone call)  I listened to the message and she is very lucky that I did not call her back.  I still may but will try to calm myself before then.  I have told his school over and over about Matthew.  That there are days where it is a fight to get Matthew ready, or he is having problems and I cannot get Anthony to the bus stop on time.  Which results in him having to wait till I get Matthew on the bus then I can take Anthony to school.  I was told at one point that he could walk, well I am sorry I am not making any child of mine walk ANYWHERE in 20-30 degree weather.  If he has to serve a Friday Night School because of being Tardy...WHO CARES!!! It is not that important for a phone call.  Send a letter home!!!

_popupControl(); I haven't been checking our site for a little while now.  Life just seems to be throwing curve balls lately.  I haven't even wanted to see the name Chiari lately!  Our walk on September 20 went well.  We raised about $4,000.00.  All the walks raised about $170,000.00 for Conquer Chiari.  Which is very good for the first year.  I had a wonderful set of ladies to help me with our walk here in West Chester.  Cherly and Callie were extremely helpful and wonderful ladies!!  Greg and Eric (our family friends) took all the picutres the day of the walk and put them on Cd's.  They even made a video out of the pictures for me.  Thank you!!  Due to unseen circumstances I was not able to get out individual thank you notes to each participant. We had a family that was at the Voice of America Park the day of our walk that really touched me.  We had passed this family, their son was riding his big wheel as we were walking.  They stopped over at our tables to get more information on Chiari and to donate $10.  To that family wherever you are....Thank you!!  I do really appreciate all the people that attended, helped out and the ones that donated items!  Our business sponsors are owed a great big Thank YOU!!! They include:

Studio 42              J.K. Stucco Inc.           Professional Poured Wall      The Backyard Bar  Edemco Services, Inc.       Norton Concrete        Kenneth Brown         Waffle House    Kroger's      Widmer's   Pizza Hut (Miami Valley)    Coldwell Banker (West Shell)    Gannett Media Technologies International      You Guys/Spa Chocolat    The Bird Garden Orthodontic Specialists/Dr. Kevin Ison DMD PSC

And a special Thank You to the West Chester TWP. paramedics.  They were on hand the whole day to assist if needed. 

I myself am going back and forth on doing an event/walk for 2009.  It really takes a lot to organize and time away from my family.  If you are interested in holding an event for Southern Ohio please let me know.  I can put you in contact with some wonderful ladies to help you!  There was even more that volunteered to help at future events the day of the walk. 

Matthew seems to be doing well.  He does have his days though!  He is seeing a Neurologist in Febuary.  Matthew has never seen a Neurologist before.  I am hoping Children's Hospital can squeeze him in to see his Neurosurgeon this year.  Dr. Mangano is booked up till December.  He is due for his follow up in March.   Matthew is still having problems with his left eye.  Right now we are putting Atropine in his right eye to build up his left one.  We are not patching anymore.  He still struggles with frustration, aggression, his temper..etc.  I HOPE we find out why at his Neuologist appointment.  I am going to ask about his Tactile Dysfunction.  I know he has it but it has never been addressed.  I did switch all the boys to a Pediatrician Practice that has 5 other Chiari patients.  It is WONDERFUL to know that they do keep Chiari in the back of their heads when something is wrong! 

To all!!  Keep your head up and your sanity!!  You will find the answers you need to help yourself and your children.  Be active and assertive! 

_popupControl(); Matthew started summer school on Monday.  His Kindergarten teacher referred him to take part in summer school this year. He will be receiving a extra boost in the Language Arts area.  His teachers wanted to make sure he was strong and secure in Language Arts before he started first grade.  They will be reflecting on sight words, writing, reading leveled books and reading stories.  At my last IEP meeting with his Kindergarten teachers and specialist I was shown a book that Matthew had written at the beginning of the school year and one that was written at the end of the year.  There was a profound improvement.  Matthew has made so much improvement that he will not be starting First grade with an IEP.  But they will monitor him and check his status through out the year.  They will put him back on an IEP if needed.   Matthew at the age of 3 was put on an IEP in pre-school.  He has had one every year since. 

Matthew almost missed his last two days of school because of strep throat.  He wasn't contagious the last two days of school but was running a fever.  I ended up going ahead and sending him the last day.  I just couldn't let him miss his last day! 

We would like to thank our local Kiwanis for providing scholarships for the Summer Learning Camps.  If it wasn't for your generosity Matthew would not have been able to attend! 

Our week started of with meeting the most wonderful family.  We met a family for dinner Monday night from New Jersey.  This was not a coincidence meeting this family.  This family also has a son (Dominick) whom has Chiari Malformation.  They flew in for his decompression surgery which was taking place at Cincinnati Children's Hospital.  I think we were all a little nervous in meeting.  The Mother Nicole and I had talked for weeks/months about Chiari, our children..etc. online.  You never want to meet people when sickness is involved but I tell you it is a blessing.  It is so wonderful to have people there who know what you are going through and can really understand.  It is so much of a reassurance!  To have support when your world comes crashing down is marvelous. 

I sat with the family the day of Dominick's surgery.  Man, did it bring back so many memories.  The waiting, the updates, the sheer panic.  When most parents read the information online it really discourages them, they are in a panic thinking their child is doomed.  When it is just not simply the case.  Each person, each child is different.  I want to instil that just because that Matthew's surgery and recovery went so smoothly that just isn't the case in all cases.  Nicole and her family kept thanking me and thanking me for being there.  Thanking my mother for taking off work to watch my kids so I could be there for them and Dominick.  Thanking me for just taking the time!  We all need to be there for each other.  It is very overwhelming for a family to go through this.  This is Chiari!  Not a well known disease/condition like so many others.  People's biggest support for Chiari is online.  Not in a hospital support group.  Not a big national support group in every state.  These people mostly only have the people online that they rarely ever get to meet. 

Yes!!! It was extremely gratifying to meet this wonderful family and know that I did help!! I helped in whatever way I could.  Even if it was only a minuet way of helping.  Get involved!!!  Whether it be with a non-profit, the online support groups, having an awareness event or walk.  Bring attention to yourself and to families like yours!!  All we have is each other!!  Nobody is going to advocate for us, we need to be advocating for US!  Just like we advocate for our kids with their health care or with the school system.  Stand up for each other and be that rock they need in their time of need!! You will never understand the simplest act of kindness.  That kindness means so much to the person receiving it! 

I had a mother call me this morning.  Her child was just diagnosed with Chiari.  She and her family live not too far away.  I was really shocked to get the call.  She read the newspaper article on Matthew.  Usually people I hear from are online.  Or have been referred to me.  She has herself scared to death because of some of the information she has read online about Chiari.  I am NOT saying that "no do not be scared".  Just gather information, talk to your Neurosurgeon.  Most cases it is NOT as bad as the picture you have painted in your head.  I have to admit I had myself thinking that Matthew was going to die, nothing was going to work, that once they started the decompression surgery he would just die or be mentally handicapped.  We have some of the BEST Pediatric Neurosurgeons around RIGHT here in our back yard.  I know families that have traveled from all over the USA to have their children seen by these Neurosurgeons at Cincinnati Children's Hospital.  I am not saying that other Neurosurgeons are not as great by no means.  You just have to see which Neurosurgeon is the right fit for you and your family.  There is ALWAYS second opinions and sometimes third opinions!  You must have great communication with your Dr!  Your Dr. should make you feel comfortable in what he is going to do. 

 I am sorry I am going on and on.  Just please start being there for each other!!  Sending a thinking of you card to someone who is not feeling well can lift someone's spirits so high.  Be there for them when they are sitting there in that hospital surgical waiting room, be on-call for them, let them know they can call you at ANY time.  Worries, fears do not have bankers hours!  Let someone you know that YOU ARE THERE FOR THEM!!!  They are not in this alone!!  So Thank You Chiari for making me be the person who is willing to help others!!

Nicole and family.....Thank you!!! United We Stand Chiari We Conquer!!

I received a letter from Matthew's school from the Attendance Officer.  Matthew has missed 9 days of school this school year.  And Matthew is in Kindergarten.   Not all his absences were due to being ill, most were due to doctors appointments.  I called the Attendance Officer asking him what he would like me to do.  I mean the school already knows of Matthew's condition.  They have been educated on the Chiari, symptoms, how they can come and go, different situations...etc.  He informed me that I needed to provide medical documentation stating that Matthew has a condition for his records.  Now keep in mind it is almost the end of the school year and they are just now wanting this document!!  I am not understanding why they didn't request this information the day I had a meeting with the Principal, Asst. Principal, all teachers and the school nurse.  Do they think I have made this whole thing up?  Oh, and where do they think he was last year when he was having his surgery?  Do they wonder if his teachers lied when they came to visit him in the hospital?  lol  UGH!! This whole situation has be irate! So make sure at the beginning of every school year you provide a document stating that your child has Chiari or whatever condition they have!!!

Summer School:    I get a letter informing me that Matthew was recommended by his teacher for Language Arts Summer Learning Camp (Summer School).  Which is a great idea since he has been on a IEP since pre-school (age 3).  He has made great progress in his delays but they want to make sure he is prepared for 1st grade.  I fully support this idea.  What gets me is the classes are from 8:30am-10am for 3 weeks.  The charge for this Summer School is $120 and an additional charge of $100 to cover the charge of bus service.  I get this letter a 1 1/2 weeks before its due.  Where do they think I am going to come up with $120 or even $220 within that time frame?  By no means are we rich or even have that to spare right now.  I have asked to be considered for the scholarship program that covers the costs of the classes and bussing.  I hope and pray we get approved for this scholarship.  I just cannot see how they charge so much for summer school.  Keep your fingers crossed for us!!!

I just received my copy today and I am very excited to start reading it.  I have skimmed over the book and know that we are all so blessed Rick has written this book.  This is a book you want to buy once you learn you have Chiari Malformation.  This is a book you want you family and friends to read.  If you can buy a copy for your local library!!  Use this book when you talk to your child's school.  I did start reading the first chapter and was almost in tears reading it.  What we go through is right there... 

Reading this book is something I am going to have to do when the kids are sleeping (so I am not interupted)     Pass along the news to everyone you know about this book.  It is well worth the money!! 

Today we had a follow up visit with Dr. Mangano.  We have been nervously awaiting the results of his MRI he had on 2/29.  Dr. Mangano was excited with his MRI results.  Matthew shows no symptoms and no signs of other related conditions.  This is wonderful news.  So here is to the wonderful free flowing fluid!!! 

It starts back in December when Matthew lost his glasses.  I couldn't get him in to see his regular Ped. Ophthalmologist so I took him to mine.  His vision had changed and the Dr. noticed something in Matthew's left eye.  It is an eye freckle.  This eye freckle can turn into melanoma.  GREAT!! Just what we needed to hear.  There is no treatment for this.  They just watch it and hope like H*ll it doesnt turn into melanoma.  My doctor contacted Matthew's Ped. Ophth. to talk to him about this.  His appointment is in April.

Matthew just had a follow up MRI (for his Chiari) this past Friday.  He will see Dr. Mangano on Thursday for this follow up visit and the MRI results.  I have seen the MRI images and in my non-expert opinion I think the Chiari is still stable.  Matthew has had NO problems with his balance, walking or any type of headache.  He is improving on his fine and gross motor delays.  In some areas he is ahead of his class.  I would have to say surgery was a success!!  Right now Matthew is at 13mths post op.  So here is to positive outcomes this month and next!!