Adapted from Dr. Green.com
Hemihypertrophy, also called hemihyperplasia, is a greater-than-normal asymmetry between the right and left sides of the body. This difference can be in just one finger; just one limb; just the face; or an entire half of the body, including half the brain, half the tongue and the internal organs, or any variation in between. Someone with hemihypertrophy might have acne on only one side of the face. The skin is often thicker, and there may be more hair on the head, on the larger side. Rarely, children can have crossed hemihypertrophy (one leg and the opposite arm are larger than their partners).
Theories abound as to the cause of hemihypertrophy - perhaps it is increased blood flow or decreased lymph drainage, or nerve or hormone abnormalities. To date, not enough research has been conducted to choose between the theories. We don't know the cause, but we do know that hemihypertrophy is usually not inherited. People with hemihypertrophy can go on to have healthy, normal children.
http://nohandsspecialneeds.blogspot.com/2008/11/hemihypertrophy.html
Including HALF THE BRAIN. Maybe, I guess they would be able to spot this with the MRI. March 1st is when this test will be run on Nate.
It sure seems like his brain has hemihypertrophy. One side comes together for a moment with his speech and then suddenly the word doesn't happen, they do not come together but he seems to understand.
Wednesday, January 25, 2012
Friday, January 20, 2012
OOPS
So I am sitting down trying to figure out the pieces of this puzzle and why pieces aren't fitting. Nathan has not been diagnosed by a geneticist. He has seen an pediatric orthopedic who knew enough to say he has hemi a sementry GOOGLE FOUND THIS
Hemi-asymmetries discussed here include: 1) hemihyperplasia which may affect either one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as "hemihypertrophy"; 2) hemihypoplasia which may also affect one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as in hemifacial microsomia; 3) hemiatrophy, the quintessential craniofacial disorder being Romberg syndrome; and 4) miscellaneous conditions such as Bencze syndrome and hemimaxillofacial dysplasia.
TAKEN FROM http://www.ncbi.nlm.nih.gov/pubmed/7608576
AND SO THE WONDER OF WHAT DID THAT DOCTOR SAY?? My husband found hemihypertrophy. And so did I when I googled uneven limbs....and that is how we found the name for what we are waiting for our son to be diagnosed as.....UGH.
So we need to see a geneticist and when could we get the first appointment for that: MAY 24TH, 2012. How long that one has been on the books, since May 2011....I do believe. I am just so baffled as I am still comprehending all this stuff that is being done and NOT being done.
It seems as if the parents whose children are diagnosed at birth, have a certain grove they are in, while I am so far on the power curve because it wasn't noticed until Nate's second birthday by the pediatrician.
Hemi-asymmetries discussed here include: 1) hemihyperplasia which may affect either one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as "hemihypertrophy"; 2) hemihypoplasia which may also affect one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as in hemifacial microsomia; 3) hemiatrophy, the quintessential craniofacial disorder being Romberg syndrome; and 4) miscellaneous conditions such as Bencze syndrome and hemimaxillofacial dysplasia.
TAKEN FROM http://www.ncbi.nlm.nih.gov/pubmed/7608576
AND SO THE WONDER OF WHAT DID THAT DOCTOR SAY?? My husband found hemihypertrophy. And so did I when I googled uneven limbs....and that is how we found the name for what we are waiting for our son to be diagnosed as.....UGH.
So we need to see a geneticist and when could we get the first appointment for that: MAY 24TH, 2012. How long that one has been on the books, since May 2011....I do believe. I am just so baffled as I am still comprehending all this stuff that is being done and NOT being done.
It seems as if the parents whose children are diagnosed at birth, have a certain grove they are in, while I am so far on the power curve because it wasn't noticed until Nate's second birthday by the pediatrician.
All of Me by Matthew Hammitt
Afraid to love, something that could break,
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/all_of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/all_of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start
Today was Horrible
So today I decided to take a visit to my pediatricians office. I am now depressed and sick about the way things have been run and have to wonder how many other Parents go through such stupidity.
I have had two pediatricians for Nate. The first one was in Macon and the other local. Both didn't notice his leg length issue when I mentioned it. As usual they checked his hips, but no measurement of his length and width was ever taken on his legs. I don't know what to think, I just know I noticed this problem February 5th, 2009. Yes, the day he was born. I was blown off, ignored, by both pediatricians. I am the mother of five children a preschool teacher, when I notice something it is there. Excuse me why I vent. I am just baffled by the entire process and then how things can still be ignored. My son is almost three.
May 16, 2011 is when the leg length was finally noticed. What did my pediatrician say, "How did I miss that?" Well you did, you also don't know what hemihypertrophy is from my comprehension. I get that, I get that the leg length thing was slight and got worse with time, I get it and am thankful that I had two pediatricians that both didn't notice what I saw. Deep breath.... But why is my son not being seen every 3 months like other kids with hemihypertrophy, why isn't he getting blood drawn every 6 weeks like the other kids.....or am I not reading enough. I am tired. Tired of trying to figure out what is the right thing to do.
I lost it today, I didn't yell I didn't scream, all I could do is cry. As I drove to the pediatricians office listening to Klove All of Me came on and I am still a wreck tearing up.
I spoke to the referrals office. UGH they are the screw up and why I spent a bogus day yesterday driving to the wrong doctor. So while there I checked Nate's records. No mention of Hemihypertrophy is there, no notes given from the Orthopedic doctor to my pediatrician. So my pediatrician doesn't know about hemi from what I understand. And the orthopedic doesn't know about the Neurologist so they don't have each other to talk to about Nate......so this system is NUTS. There is no plan of action for this child, no study team to figure out what his problem is. Just doctors working independently.
I was right my referrals have to come via the pediatrician, the thing I didn't know is once that is done the pediatrician doesn't do anything he just sees you again later when you have an appointment. I am now wondering what this new computerized system is and thinking weird but maybe a computer can do a better job than these doctors at figuring out what the best course of action is. I am thinking some BONES thing where come the year xyz they can be looking at a virtual body in Japan for example and say yes we concur this is xyz and here is what we do for this condition.
So now I will call the Pediatric Orthopedic and hope I get some answers.
I have had two pediatricians for Nate. The first one was in Macon and the other local. Both didn't notice his leg length issue when I mentioned it. As usual they checked his hips, but no measurement of his length and width was ever taken on his legs. I don't know what to think, I just know I noticed this problem February 5th, 2009. Yes, the day he was born. I was blown off, ignored, by both pediatricians. I am the mother of five children a preschool teacher, when I notice something it is there. Excuse me why I vent. I am just baffled by the entire process and then how things can still be ignored. My son is almost three.
May 16, 2011 is when the leg length was finally noticed. What did my pediatrician say, "How did I miss that?" Well you did, you also don't know what hemihypertrophy is from my comprehension. I get that, I get that the leg length thing was slight and got worse with time, I get it and am thankful that I had two pediatricians that both didn't notice what I saw. Deep breath.... But why is my son not being seen every 3 months like other kids with hemihypertrophy, why isn't he getting blood drawn every 6 weeks like the other kids.....or am I not reading enough. I am tired. Tired of trying to figure out what is the right thing to do.
I lost it today, I didn't yell I didn't scream, all I could do is cry. As I drove to the pediatricians office listening to Klove All of Me came on and I am still a wreck tearing up.
I spoke to the referrals office. UGH they are the screw up and why I spent a bogus day yesterday driving to the wrong doctor. So while there I checked Nate's records. No mention of Hemihypertrophy is there, no notes given from the Orthopedic doctor to my pediatrician. So my pediatrician doesn't know about hemi from what I understand. And the orthopedic doesn't know about the Neurologist so they don't have each other to talk to about Nate......so this system is NUTS. There is no plan of action for this child, no study team to figure out what his problem is. Just doctors working independently.
I was right my referrals have to come via the pediatrician, the thing I didn't know is once that is done the pediatrician doesn't do anything he just sees you again later when you have an appointment. I am now wondering what this new computerized system is and thinking weird but maybe a computer can do a better job than these doctors at figuring out what the best course of action is. I am thinking some BONES thing where come the year xyz they can be looking at a virtual body in Japan for example and say yes we concur this is xyz and here is what we do for this condition.
So now I will call the Pediatric Orthopedic and hope I get some answers.
Thursday, January 19, 2012
Orthopedic Pediatric
I spent numerous phone calls between yesterday and today and maybe other days trying to figure out what and who and where I was going. It seems communications is not a strong point with appointment makers, doctors and more appointment people. So I ask questions and more questions and go all the way to Macon for an appointment that I was correct wasn't to be scheduled because we liked our doctor.
http://www.emoryhealthcare.org/orthopaedics/physicians/orthopedic-surgeons/robert-bruce.html our doctor that we like and will continue with.
http://www.emoryhealthcare.org/orthopaedics/physicians/orthopedic-surgeons/robert-bruce.html our doctor that we like and will continue with.
ummm well they haven't done this with my son.
I noticed today that treatment is different for all kids with hemi but there is one thing that no one in the group is arguing with....excuse me while I now freak out:
> Yes, ultrasound and AFP bloodwork every 6 weeks is the protocol to
> monitor for cancers related to hemi.
AHHHHH!!!! It's almost time for me to see yet another ortho guy, I don't understand what is going on.
> Yes, ultrasound and AFP bloodwork every 6 weeks is the protocol to
> monitor for cancers related to hemi.
AHHHHH!!!! It's almost time for me to see yet another ortho guy, I don't understand what is going on.
Wednesday, January 18, 2012
Neurologist Appointment
9am on a Wednesday, not a good time for me, but you take what you are given. I had not forgotten, I just could not find where I had the information written down. I called when they opened at 8:30 and found that yes my memory served me correctly and I had an appointment, I was even able to find the correct place to go. Baffled by where to go, I turned on the GPS and drove to Macon.
I had to park in the parking deck. (always a joy.) I found the general location of where I needed to be. I got my son out of the van, but I DID NOT PUT THE STROLLER IN THE VAN. He had to leave his favorite toys (for the day, they switch regularly). Today it was his 10 pound train engine and a stiff plastic top of a desk with ABC's on it. Yelling, screaming, and my carrying him out of the parking garage in a fireman's carry with purse and diaper bag in tow. Once we exited the parking garage thankfully his screaming came to a halt. Oh he also did not have on a coat, long since lost his socks and his shoes that were packed, I didn't even know if they fit. I made a picture of the ever caring Mother of hey a fifth child. He had a shirt on and a pair of pants, he was clean and he was dry for the moment.
I went into one Children's hospital and looked for the neurology department, it seemed logical to me that I was in the right place...NO. 9th floor of the surgery building, so back out and into the proper place. In finding the correct room we passed The Mickey Mouse show, Nathan spotted it and didn't want to move, so I had to drag him away, but thankfully it turned out to be the room where we were to be. He remained happy while in the waiting room. Then they put us in a room to wait and be seen by the doctor. I dealt with a screaming child, sitting in front of the door he wanted to get out of as he did what he could to destroy the room.
I spoke to the doctor over Nathan and dealt with his behavior by having him stand in the corner while the doctor asked me everything they had asked me at the FIND program and less. The information he was asking was all typed in a file on my daughters IPAD. He wanted to know what words my son could say. I gave him a brief list. He gave me lab work to have run on my son. WHAT I AM ALONE GETTING BLOOD DRAWN FROM THIS CHILD. Not thrilled but wanting this part of the exam over with so we could move forward on a plan of action for Nathan I went to the lab.
Where is the lab? Make a left out of the building, another left after the child's hospital and you'll find it on your left. Oh Joy!!! Haul child, diaper bag, purse and get there. What? you want a urine sample also!!! OH JOY!! He just peed. So here I am in yet another waiting room. Nate's bored and when he is bored he runs away. Top speed down the hall way and yes there is an exit door. He did this a few times, it seemed forever until this child was called and thank God the door had a bolt on it. Now I get him to pee a bit in a cup, not enough. Sit in the room and wait, wait, wait, thinking the nurses are flipping to who gets to draw blood from this kid. Eventually a nurse knocks on the door, I open it and ask her if she lost the toss and has to draw his blood, she was puzzled by my insanity at this point. Eventually another nurse came in and another and another. Smart, all hands on deck for this little guy, they seem to understand this is going to be difficult, they have been here before.
Nate wants to hold the valves, smart nurse doesn't argue, just gets new one. I am thankful they seem to comprehend how to get r done. Nate screams and holds tighter to the valves instead of trying to get the needle out, I am so thrilled to only have him crying but not fighting, but sigh, his vein gives out and they need to switch arms. Poor baby realizes for a second he can touch the needle and it is hectic but he decides holding the valves is better. I believe they took about 7 valves of blood. I am trying not to watch as I cry with him, distracting him by tickling, eating his ear, pinching him (yes saw this on a dentist special once, you'll trick the nerves into focusing on another area.) Anyway we got through it. They still need urine and Nate is empty so we head to McD's to fill him up.....yeppers back to hauling child, diaper bag and purse, really missing my stroller at this point, and a pair of shoes that fit this kid. (a weekend in Atlanta with the older 4 have thrown me off for this appointment that was scheduled before Christmas, half the information is long since forgotten.)
Apple juice and lunch and the boy is back to happy go lucky guy, jumping on the bench and having a blast at McD's. I try to get him to drink a second juice but he likes his smoothy more. Time to go back and pee again, not much but I am so done. I did go from McD's to the parking garage to get my van to drive to the office after starting to go without it. Exhausted from my 3+ hours in Macon, I head home and wonder what my next adventure holds for tomorrow.
Tomorrow is here, 1. PUTTING THE STROLLER IN THE VAN!!!
I had to park in the parking deck. (always a joy.) I found the general location of where I needed to be. I got my son out of the van, but I DID NOT PUT THE STROLLER IN THE VAN. He had to leave his favorite toys (for the day, they switch regularly). Today it was his 10 pound train engine and a stiff plastic top of a desk with ABC's on it. Yelling, screaming, and my carrying him out of the parking garage in a fireman's carry with purse and diaper bag in tow. Once we exited the parking garage thankfully his screaming came to a halt. Oh he also did not have on a coat, long since lost his socks and his shoes that were packed, I didn't even know if they fit. I made a picture of the ever caring Mother of hey a fifth child. He had a shirt on and a pair of pants, he was clean and he was dry for the moment.
I went into one Children's hospital and looked for the neurology department, it seemed logical to me that I was in the right place...NO. 9th floor of the surgery building, so back out and into the proper place. In finding the correct room we passed The Mickey Mouse show, Nathan spotted it and didn't want to move, so I had to drag him away, but thankfully it turned out to be the room where we were to be. He remained happy while in the waiting room. Then they put us in a room to wait and be seen by the doctor. I dealt with a screaming child, sitting in front of the door he wanted to get out of as he did what he could to destroy the room.
I spoke to the doctor over Nathan and dealt with his behavior by having him stand in the corner while the doctor asked me everything they had asked me at the FIND program and less. The information he was asking was all typed in a file on my daughters IPAD. He wanted to know what words my son could say. I gave him a brief list. He gave me lab work to have run on my son. WHAT I AM ALONE GETTING BLOOD DRAWN FROM THIS CHILD. Not thrilled but wanting this part of the exam over with so we could move forward on a plan of action for Nathan I went to the lab.
Where is the lab? Make a left out of the building, another left after the child's hospital and you'll find it on your left. Oh Joy!!! Haul child, diaper bag, purse and get there. What? you want a urine sample also!!! OH JOY!! He just peed. So here I am in yet another waiting room. Nate's bored and when he is bored he runs away. Top speed down the hall way and yes there is an exit door. He did this a few times, it seemed forever until this child was called and thank God the door had a bolt on it. Now I get him to pee a bit in a cup, not enough. Sit in the room and wait, wait, wait, thinking the nurses are flipping to who gets to draw blood from this kid. Eventually a nurse knocks on the door, I open it and ask her if she lost the toss and has to draw his blood, she was puzzled by my insanity at this point. Eventually another nurse came in and another and another. Smart, all hands on deck for this little guy, they seem to understand this is going to be difficult, they have been here before.
Nate wants to hold the valves, smart nurse doesn't argue, just gets new one. I am thankful they seem to comprehend how to get r done. Nate screams and holds tighter to the valves instead of trying to get the needle out, I am so thrilled to only have him crying but not fighting, but sigh, his vein gives out and they need to switch arms. Poor baby realizes for a second he can touch the needle and it is hectic but he decides holding the valves is better. I believe they took about 7 valves of blood. I am trying not to watch as I cry with him, distracting him by tickling, eating his ear, pinching him (yes saw this on a dentist special once, you'll trick the nerves into focusing on another area.) Anyway we got through it. They still need urine and Nate is empty so we head to McD's to fill him up.....yeppers back to hauling child, diaper bag and purse, really missing my stroller at this point, and a pair of shoes that fit this kid. (a weekend in Atlanta with the older 4 have thrown me off for this appointment that was scheduled before Christmas, half the information is long since forgotten.)
Apple juice and lunch and the boy is back to happy go lucky guy, jumping on the bench and having a blast at McD's. I try to get him to drink a second juice but he likes his smoothy more. Time to go back and pee again, not much but I am so done. I did go from McD's to the parking garage to get my van to drive to the office after starting to go without it. Exhausted from my 3+ hours in Macon, I head home and wonder what my next adventure holds for tomorrow.
Tomorrow is here, 1. PUTTING THE STROLLER IN THE VAN!!!
Tuesday, January 10, 2012
Another blog about hemihypertrophy
http://nativeeagle8.blogspot.com/2012/01/ultrasound-january-5th-2012.html There aren't many people that understand this problem without explaining it. Happy to find another Mom that understands what I am feeling.
FIND Program
I went to the evaluation yesterday. They went through check list for what Nathan can and cannot do. They sent me home with a list of things to try and get him to do. They'll call me again in a month and we'll go over them. He'll be three in a month and that is the age the FIND program begins.
Saturday, January 7, 2012
Nate you are Great
I look at you, and who can help but smile. Jump, jump, bounce, bounce, yes you are our bouncing baby boy always filled with JOY, but sometimes you throw a fit. Oh this year is the year of truth, of facing reality. Who are you little boy? What goes on in that head of yours? What do you like, it seems that it can change in a moment.
For the past couple of days you have carried around a paper thin di-cut of a fish. Weird, but you love this plastic thing, it came with your chalk from Pop pop.
I can hear you trying to sing Twinkle, Twinkle, little star.....so cute. Two words but I understand what you are singing. You can put puzzles together, trying to figure out your intelligence is not easy. It is such an unknown. You are so unique in everything you do.
Neurologist appointment is coming up. Monday you meet at the school. So much to do in learning about you. Another scan to make sure you don't have that tumor hemihypertrophy is known to cause. Higher risk for cancer, is one of the problems.....so our life will go on with a new normal this year.
For the past couple of days you have carried around a paper thin di-cut of a fish. Weird, but you love this plastic thing, it came with your chalk from Pop pop.
I can hear you trying to sing Twinkle, Twinkle, little star.....so cute. Two words but I understand what you are singing. You can put puzzles together, trying to figure out your intelligence is not easy. It is such an unknown. You are so unique in everything you do.
Neurologist appointment is coming up. Monday you meet at the school. So much to do in learning about you. Another scan to make sure you don't have that tumor hemihypertrophy is known to cause. Higher risk for cancer, is one of the problems.....so our life will go on with a new normal this year.
Subscribe to:
Posts (Atom)