dannlark
07-12-2008, 04:01 PM
Ian’s Metopic Craniosynostosis Journey
<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
I noticed that this pregnancy was different from my other two when I was about 6 months pregnant. This baby, now named Ian Samuel (as we found out we were having our 3<SUP>rd</SUP> boy after an amnio), was carrying so low in my pelvis that it hurt to keep up my power walking schedule and just basic walking was getting more and more painful. He was head down for all of my 3<SUP>rd</SUP> trimester. I kept telling my Dr., and anyone else that would listen, that Ian was coming early; I could just “feel” it. I could feel his hands move up to his head all day long, as if he were trying to push his head out of my pelvis, he was really jammed in there tight! Ian had been scheduled to be delivered on my 40<SUP>th</SUP> birthday (August 17<SUP>th</SUP>), 10 days before his due date. I was excited to be sharing my birthday with my last baby, and passing the torch, so to speak…who needs birthdays after 40, right?? But, true to my intuition, my water broke on July 28<SUP>th</SUP> after a strenuous day at the Circus and collapsing into bed by 10pm. We got to the hospital by 1am, July 29<SUP>th</SUP> and Ian was delivered, via C-section, at 4am. He came a month early (from his due date) and was 6 pounds, 1 ounce, and a little guy at 17 inches long. Not only was he NOT delivered on my birthday, he arrived on my MIDDLE CHILD, CAMDEN’S, BIRTHDAY!!! I always said that he could come early, on any day EXCEPT that day. LOL! So now, Camden and Ian are Birthday Brothers!!
<o:p></o:p>
When I finally got to see him back in our room I thought his forehead looked a little strange, very short and bulbous, but I just thought that it was a “new born” thing and left it at that. His forehead stayed that way for a couple of weeks and then started to flatten and widen out. He looked perfect!! He was a wonderful little boy with major reflux and aspiration problems that we saw a pediatric GE for. They seemed to iron themselves out after a few months, though we dealt with major spit up for months and still are on occasion.
<o:p></o:p>
At around 4 months, or so, I started to notice that the bulbousness was returning to his forehead. It also looked like it was narrowing a bit which made the bulbousness stand out more. I didn’t think much of it until it continued to get worse and I notice that at 6 months it was still progressing and his anterior fontanel was VERY small. We had Ian’s 6 month check up and although I thought his forehead was looking weird, I didn’t bring it up. Stupid me… I also didn’t think to ask about his fontanel being so small. The Dr. would have said something about that if there were a problem, right? Only later, thinking back on our visit, I realized that she didn’t even feel it. About a week later I really started obsessing on his forehead. It just DIDN’T LOOK RIGHT?!?! It was getting narrower and narrower and was really bulbous. That’s when I felt the metopic ridge… I remembered seeing a Dr. show years ago about a child with this defect where the sutures of the skull fused too early and they had to have major surgery to correct it. That made me VERY concerned!! I googled early suture fusion of the skull and BAM! CRANIOSYNOSTOSIS popped up. I then looked at all the different types of Cranio, and sure enough, there was one called Metopic Craniosynostosis that perfectly described my son’s forehead. Now, in the description it kept saying there would be pinching at the brow, but I didn’t really see that in Ian. But he had the ridge (it could be palpated, but not seen yet) and the narrowing of the forehead. I brought this up with my husband and, not to my surprise, he thought I was CRAZY and was angry that I would try to diagnosis him via the internet. I said, “Fine, I will wait until Ian’s 9 month check up and ask the Dr. then.” I let it drop, for now, although I kept up my research and found Cranio Kids which was a wonderful support group and had great information.
<o:p></o:p>
<o:p></o:p>
All the while, Ian’s forehead continued to get worse. In a few weeks, sure enough, I could now see the pinching at the temples that the Cranio site had mentioned. NOOOOO, this wasn’t happening!!!! I was positive now that he had Metopic Cranio. Looking back at his early baby pictures, I could now see that there was something going on much earlier than even I had noticed. Most of his early pictures showed a bump right over his nose and the camera flash bouncing off of it. His forehead got more and more bulbous, the pinching was getting more and more noticeable and his ridge became visible to the eye. At that point, at about 7-8 months old, my husband finally agreed that there was something going on, it was undeniable, although he wasn’t willing to talk about it. He wanted to wait to see what his pediatrician would say. Finally, Ian’s 9 month check up rolled around and the first thing the Dr. asked me is if there were any concerns I had. “YES!” I told her what I had been noticing and showed her his ridge and the fact that now his anterior fontanel was completely closed. She said, “Yes, I can see something going on.” There was another Dr. in the office that dealt with deformities and she brought Ian in to see him and he concurred that we should take him to see a NS. Ian’s pediatrician was not that familiar with craniosynostosis, having only seen 2 other cases in all of the years practicing. I doubt that she would have caught it had I not mentioned it. His head was measuring steadily in the 50% range so that would have not been an indicator. Mom’s intuition saves the day, yet again!! Needless to say, my husband was FLOORED when I told him! I made an appointment with the NS she had recommended and 2 weeks later we saw him.
<o:p></o:p>
He thought that Ian was a “Beautiful little baby…” and that the metopic ridge was mild. I got the feeling that he thought we were those “overly concerned” parents that were just a silly nuisance. Even though we told him several times that the changes in his forehead had been progressing at lightning speed, he didn’t seem overly concerned. He put Ian on a wait and see protocol and said to come back in 3 months, when he was one. He wasn’t concerned about the lack of the anterior fontanel at 9 months, nor did he really see any of the pinching or bulbousness of Ian’s forehead. He said that ICP wasn’t a concern at all. The whole meeting took less than 15 minutes. All I could do was shake my head… My husband was happy with the appointment, while I was reticent to celebrate. It just didn’t sit right with me… There was something going on with my baby and the Dr. didn’t seem to “get it” at all!!
Two weeks later, after Ian’s forehead continued to get worse (yes, it was happening THAT fast, he now had mild trigonocephaly), my husband and I decided that we needed to make another appointment with Ian’s pediatrician so she could witness the changes first hand and we could all be on the same page. That was a month from our initial 9 month check up with Ian, and a LOT had changed with him since then. We prepared for the meeting by printing up MANY before and after pictures of him. We realized that sometimes it was hard to notice in person, especially front on, and Ian’s “cute factor” was also an impediment. His big brown eyes and smile were a distraction from the forehead. That and the tons of hair he had on his head for a 10 month old…
<o:p></o:p>
When we met with the pediatrician and showed her the pictures, she admitted that there had been quite a change in just a few months. FINALLY!!! Someone was taking this seriously. We asked her for another referral and she gave us the name of another NS. She didn’t seem 100% convinced that he indeed had Cranio, but “whatever”. I was yet again hopeful that we would get all of our questions addressed and someone would finally take us seriously.
But, I guess you can’t always get what you want…because… The appointment was HORRIBLE!!! The Dr. was extremely condescending and completely blew off any of my concerns. He said he couldn’t see the pinching, said Ian didn’t have trigonocephaly, he didn’t see the bulbousness of his forehead, nor the egg shaped head from above. He said that if we wanted, we could have the metopic ridge burred off when he started school. He said that perhaps because I was with him every day that I was seeing things that weren’t there. I could have slapped the man!! I showed him pictures of another boy that had a forehead so similar to Ian’s that it took my breath away when I first saw them. The boy wasn’t diagnosed until he was 2 ½ (although his mother figured it out when he was just a baby but no one listened!) and the progression of his forehead was astounding. Even my husband was shocked at how much their foreheads looked alike at a young age. So the later pictures of the boy were a glimpse into the future if we didn’t get help for Ian. The Dr. said, upon seeing them, “Yes, see we would just burr that flat before school starts for him.” I said, “NO!!! This boy had surgery to correct it!!!!! It was considered Severe Metopic Cranio!!” I mean, it was just a CRAZY, CRAZY consultation… I left there just RAGING!!!! I was dumb founded!!!
<o:p></o:p>
Throughout this whole horrible journey, I had learned about a Dr. in Dallas, a pediatric CFS that was on the cutting edge of treatment for craniosynostosis. I researched and researched him, got excellent recommendations from other parents whose children he had operated on and had heard nothing but great things about him. I had sent a series of pictures via the internet to the Dr. of Ian, as well as his story, and he concurred that Ian was mild metopic with mild trigonocephaly. As his Cranio progressed I sent new pictures, and this time the Dr. said, “If it were my son, I’d have the surgery.” I had mentioned him to my husband as an option for Ian but my husband wanted us to exhaust our choices here before we went out of state. Well, after that horrible appointment, my husband said, “Call Dr. Fearon’s office and make an appointment. It’s time to go to Dallas…” I was crying tears of relief!!! I called and we had an appointment booked for two weeks later. Those were the two longest weeks of my life!!
<o:p></o:p>
I took Ian out there on a Thursday and had the consultation the next day. Dr. Fearon was a wonderful, caring person that took the time to really hear me, hear my questions and answer them fully. He was the first Dr. to take pictures of Ian’s head, from all angles. He asked me what my concerns were and what brought us to see him and I told him the story. He said, “Now wait! How did YOU know about craniosynostosis but Ian’s pediatrician didn’t?” I told him, “Exactly!!! That has been our problem for the last 2 months!!” He said he wasn’t surprised that the NS’s didn’t see Ian’s problem as they aren’t trained to know what to look for. He said that he believes so strongly in Mother’s Intuition, as it’s always right. When I was done telling our story, he said the words I had been waiting to hear for so long… "First of all, YOU’RE NOT CRAZY. I can see exactly what you are talking about. I could see it when you first walked in here, before you said anything.” I could have hugged the guy!!! I asked him the nagging question my husband and I had, “Once this starts, does it ever stop or reverse itself?” The answer, “No, it only gets worse.” That was what we both had feared for so long…but it was a relief to finally get an answer. He said he often sees kids that didn’t get the right diagnosis in the beginning or the parents didn’t know what to do, and now, they’re 3,4,5 + years old and the condition has become severe. Dr. Fearon diagnosed Ian with Upper End of Mild, Metopic Craniosynostosis (a 3-4 on “the scale” but only because I asked, Dr. Fearon doesn’t use the scale). He said that if his case were any milder, he would recommend waiting but since Ian was almost a year old, and it had been progressing so rapidly, he thought he would be a good candidate for surgery. We got my husband on speaker phone and he was able to ask some questions too, which was very helpful to him. He asked him if, now seeing Ian in person, he would STILL have the surgery if Ian were his son? “Yes.”, was the answer. We told Dr. Fearon that we would talk it over (Dr. Fearon said, “Yes, it’s not the kind of decision you want to make over speaker phone…” We agreed. LOL!) and we said that we’d get back to him.
<o:p></o:p>
I called my husband when we got back to the hotel and we both felt very strongly that surgery was the best option for our beautiful little boy, no matter how hard it was to come to grips with. I sat there, eating dinner, watching Ian play, and just cried and cried. I felt as if a HUGE weight had been lifted off my shoulders, like I could finally breathe again… I was SO exhausted… Ian and I took a 3 hour nap after dinner. It was the best sleep I’d had in 3 months…
<o:p></o:p>
So, we now have Ian’s surgery scheduled for August 27, 2008. We’re freaked beyond measure, saddened that our son has to go through this, but steadfast in the knowledge that we are doing right by him with this surgery. We’re confident that when all is said and done, Ian will have a beautiful forehead and we can put craniosynostosis behind us. I’ve learned that Mother’s Intuition needs to be listened too and that the squeaky wheel does gets the grease. You have to keep pushing for answers!!! That’s what I hope to pass on to those that read about Ian’s journey.
Please check out Ian's pictures in my profile, I hope they help someone...
*********
We are on the other side!! Surgery went very well and Ian, 2 weeks post op is doing amazingly...we couldn't be happier. Here are some before and after pictures.
http://i40.photobucket.com/albums/e211/dannlark/Project1.png http://i40.photobucket.com/albums/e211/dannlark/Project2.png
and 6 months post op:
http://www.craniokids.org/support/picture.php?albumid=121&pictureid=3073
Ian, sleeping, 1 year post op!! http://i40.photobucket.com/albums/e211/dannlark/100_0444.jpg
<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
I noticed that this pregnancy was different from my other two when I was about 6 months pregnant. This baby, now named Ian Samuel (as we found out we were having our 3<SUP>rd</SUP> boy after an amnio), was carrying so low in my pelvis that it hurt to keep up my power walking schedule and just basic walking was getting more and more painful. He was head down for all of my 3<SUP>rd</SUP> trimester. I kept telling my Dr., and anyone else that would listen, that Ian was coming early; I could just “feel” it. I could feel his hands move up to his head all day long, as if he were trying to push his head out of my pelvis, he was really jammed in there tight! Ian had been scheduled to be delivered on my 40<SUP>th</SUP> birthday (August 17<SUP>th</SUP>), 10 days before his due date. I was excited to be sharing my birthday with my last baby, and passing the torch, so to speak…who needs birthdays after 40, right?? But, true to my intuition, my water broke on July 28<SUP>th</SUP> after a strenuous day at the Circus and collapsing into bed by 10pm. We got to the hospital by 1am, July 29<SUP>th</SUP> and Ian was delivered, via C-section, at 4am. He came a month early (from his due date) and was 6 pounds, 1 ounce, and a little guy at 17 inches long. Not only was he NOT delivered on my birthday, he arrived on my MIDDLE CHILD, CAMDEN’S, BIRTHDAY!!! I always said that he could come early, on any day EXCEPT that day. LOL! So now, Camden and Ian are Birthday Brothers!!
<o:p></o:p>
When I finally got to see him back in our room I thought his forehead looked a little strange, very short and bulbous, but I just thought that it was a “new born” thing and left it at that. His forehead stayed that way for a couple of weeks and then started to flatten and widen out. He looked perfect!! He was a wonderful little boy with major reflux and aspiration problems that we saw a pediatric GE for. They seemed to iron themselves out after a few months, though we dealt with major spit up for months and still are on occasion.
<o:p></o:p>
At around 4 months, or so, I started to notice that the bulbousness was returning to his forehead. It also looked like it was narrowing a bit which made the bulbousness stand out more. I didn’t think much of it until it continued to get worse and I notice that at 6 months it was still progressing and his anterior fontanel was VERY small. We had Ian’s 6 month check up and although I thought his forehead was looking weird, I didn’t bring it up. Stupid me… I also didn’t think to ask about his fontanel being so small. The Dr. would have said something about that if there were a problem, right? Only later, thinking back on our visit, I realized that she didn’t even feel it. About a week later I really started obsessing on his forehead. It just DIDN’T LOOK RIGHT?!?! It was getting narrower and narrower and was really bulbous. That’s when I felt the metopic ridge… I remembered seeing a Dr. show years ago about a child with this defect where the sutures of the skull fused too early and they had to have major surgery to correct it. That made me VERY concerned!! I googled early suture fusion of the skull and BAM! CRANIOSYNOSTOSIS popped up. I then looked at all the different types of Cranio, and sure enough, there was one called Metopic Craniosynostosis that perfectly described my son’s forehead. Now, in the description it kept saying there would be pinching at the brow, but I didn’t really see that in Ian. But he had the ridge (it could be palpated, but not seen yet) and the narrowing of the forehead. I brought this up with my husband and, not to my surprise, he thought I was CRAZY and was angry that I would try to diagnosis him via the internet. I said, “Fine, I will wait until Ian’s 9 month check up and ask the Dr. then.” I let it drop, for now, although I kept up my research and found Cranio Kids which was a wonderful support group and had great information.
<o:p></o:p>
<o:p></o:p>
All the while, Ian’s forehead continued to get worse. In a few weeks, sure enough, I could now see the pinching at the temples that the Cranio site had mentioned. NOOOOO, this wasn’t happening!!!! I was positive now that he had Metopic Cranio. Looking back at his early baby pictures, I could now see that there was something going on much earlier than even I had noticed. Most of his early pictures showed a bump right over his nose and the camera flash bouncing off of it. His forehead got more and more bulbous, the pinching was getting more and more noticeable and his ridge became visible to the eye. At that point, at about 7-8 months old, my husband finally agreed that there was something going on, it was undeniable, although he wasn’t willing to talk about it. He wanted to wait to see what his pediatrician would say. Finally, Ian’s 9 month check up rolled around and the first thing the Dr. asked me is if there were any concerns I had. “YES!” I told her what I had been noticing and showed her his ridge and the fact that now his anterior fontanel was completely closed. She said, “Yes, I can see something going on.” There was another Dr. in the office that dealt with deformities and she brought Ian in to see him and he concurred that we should take him to see a NS. Ian’s pediatrician was not that familiar with craniosynostosis, having only seen 2 other cases in all of the years practicing. I doubt that she would have caught it had I not mentioned it. His head was measuring steadily in the 50% range so that would have not been an indicator. Mom’s intuition saves the day, yet again!! Needless to say, my husband was FLOORED when I told him! I made an appointment with the NS she had recommended and 2 weeks later we saw him.
<o:p></o:p>
He thought that Ian was a “Beautiful little baby…” and that the metopic ridge was mild. I got the feeling that he thought we were those “overly concerned” parents that were just a silly nuisance. Even though we told him several times that the changes in his forehead had been progressing at lightning speed, he didn’t seem overly concerned. He put Ian on a wait and see protocol and said to come back in 3 months, when he was one. He wasn’t concerned about the lack of the anterior fontanel at 9 months, nor did he really see any of the pinching or bulbousness of Ian’s forehead. He said that ICP wasn’t a concern at all. The whole meeting took less than 15 minutes. All I could do was shake my head… My husband was happy with the appointment, while I was reticent to celebrate. It just didn’t sit right with me… There was something going on with my baby and the Dr. didn’t seem to “get it” at all!!
Two weeks later, after Ian’s forehead continued to get worse (yes, it was happening THAT fast, he now had mild trigonocephaly), my husband and I decided that we needed to make another appointment with Ian’s pediatrician so she could witness the changes first hand and we could all be on the same page. That was a month from our initial 9 month check up with Ian, and a LOT had changed with him since then. We prepared for the meeting by printing up MANY before and after pictures of him. We realized that sometimes it was hard to notice in person, especially front on, and Ian’s “cute factor” was also an impediment. His big brown eyes and smile were a distraction from the forehead. That and the tons of hair he had on his head for a 10 month old…
<o:p></o:p>
When we met with the pediatrician and showed her the pictures, she admitted that there had been quite a change in just a few months. FINALLY!!! Someone was taking this seriously. We asked her for another referral and she gave us the name of another NS. She didn’t seem 100% convinced that he indeed had Cranio, but “whatever”. I was yet again hopeful that we would get all of our questions addressed and someone would finally take us seriously.
But, I guess you can’t always get what you want…because… The appointment was HORRIBLE!!! The Dr. was extremely condescending and completely blew off any of my concerns. He said he couldn’t see the pinching, said Ian didn’t have trigonocephaly, he didn’t see the bulbousness of his forehead, nor the egg shaped head from above. He said that if we wanted, we could have the metopic ridge burred off when he started school. He said that perhaps because I was with him every day that I was seeing things that weren’t there. I could have slapped the man!! I showed him pictures of another boy that had a forehead so similar to Ian’s that it took my breath away when I first saw them. The boy wasn’t diagnosed until he was 2 ½ (although his mother figured it out when he was just a baby but no one listened!) and the progression of his forehead was astounding. Even my husband was shocked at how much their foreheads looked alike at a young age. So the later pictures of the boy were a glimpse into the future if we didn’t get help for Ian. The Dr. said, upon seeing them, “Yes, see we would just burr that flat before school starts for him.” I said, “NO!!! This boy had surgery to correct it!!!!! It was considered Severe Metopic Cranio!!” I mean, it was just a CRAZY, CRAZY consultation… I left there just RAGING!!!! I was dumb founded!!!
<o:p></o:p>
Throughout this whole horrible journey, I had learned about a Dr. in Dallas, a pediatric CFS that was on the cutting edge of treatment for craniosynostosis. I researched and researched him, got excellent recommendations from other parents whose children he had operated on and had heard nothing but great things about him. I had sent a series of pictures via the internet to the Dr. of Ian, as well as his story, and he concurred that Ian was mild metopic with mild trigonocephaly. As his Cranio progressed I sent new pictures, and this time the Dr. said, “If it were my son, I’d have the surgery.” I had mentioned him to my husband as an option for Ian but my husband wanted us to exhaust our choices here before we went out of state. Well, after that horrible appointment, my husband said, “Call Dr. Fearon’s office and make an appointment. It’s time to go to Dallas…” I was crying tears of relief!!! I called and we had an appointment booked for two weeks later. Those were the two longest weeks of my life!!
<o:p></o:p>
I took Ian out there on a Thursday and had the consultation the next day. Dr. Fearon was a wonderful, caring person that took the time to really hear me, hear my questions and answer them fully. He was the first Dr. to take pictures of Ian’s head, from all angles. He asked me what my concerns were and what brought us to see him and I told him the story. He said, “Now wait! How did YOU know about craniosynostosis but Ian’s pediatrician didn’t?” I told him, “Exactly!!! That has been our problem for the last 2 months!!” He said he wasn’t surprised that the NS’s didn’t see Ian’s problem as they aren’t trained to know what to look for. He said that he believes so strongly in Mother’s Intuition, as it’s always right. When I was done telling our story, he said the words I had been waiting to hear for so long… "First of all, YOU’RE NOT CRAZY. I can see exactly what you are talking about. I could see it when you first walked in here, before you said anything.” I could have hugged the guy!!! I asked him the nagging question my husband and I had, “Once this starts, does it ever stop or reverse itself?” The answer, “No, it only gets worse.” That was what we both had feared for so long…but it was a relief to finally get an answer. He said he often sees kids that didn’t get the right diagnosis in the beginning or the parents didn’t know what to do, and now, they’re 3,4,5 + years old and the condition has become severe. Dr. Fearon diagnosed Ian with Upper End of Mild, Metopic Craniosynostosis (a 3-4 on “the scale” but only because I asked, Dr. Fearon doesn’t use the scale). He said that if his case were any milder, he would recommend waiting but since Ian was almost a year old, and it had been progressing so rapidly, he thought he would be a good candidate for surgery. We got my husband on speaker phone and he was able to ask some questions too, which was very helpful to him. He asked him if, now seeing Ian in person, he would STILL have the surgery if Ian were his son? “Yes.”, was the answer. We told Dr. Fearon that we would talk it over (Dr. Fearon said, “Yes, it’s not the kind of decision you want to make over speaker phone…” We agreed. LOL!) and we said that we’d get back to him.
<o:p></o:p>
I called my husband when we got back to the hotel and we both felt very strongly that surgery was the best option for our beautiful little boy, no matter how hard it was to come to grips with. I sat there, eating dinner, watching Ian play, and just cried and cried. I felt as if a HUGE weight had been lifted off my shoulders, like I could finally breathe again… I was SO exhausted… Ian and I took a 3 hour nap after dinner. It was the best sleep I’d had in 3 months…
<o:p></o:p>
So, we now have Ian’s surgery scheduled for August 27, 2008. We’re freaked beyond measure, saddened that our son has to go through this, but steadfast in the knowledge that we are doing right by him with this surgery. We’re confident that when all is said and done, Ian will have a beautiful forehead and we can put craniosynostosis behind us. I’ve learned that Mother’s Intuition needs to be listened too and that the squeaky wheel does gets the grease. You have to keep pushing for answers!!! That’s what I hope to pass on to those that read about Ian’s journey.
Please check out Ian's pictures in my profile, I hope they help someone...
*********
We are on the other side!! Surgery went very well and Ian, 2 weeks post op is doing amazingly...we couldn't be happier. Here are some before and after pictures.
http://i40.photobucket.com/albums/e211/dannlark/Project1.png http://i40.photobucket.com/albums/e211/dannlark/Project2.png
and 6 months post op:
http://www.craniokids.org/support/picture.php?albumid=121&pictureid=3073
Ian, sleeping, 1 year post op!! http://i40.photobucket.com/albums/e211/dannlark/100_0444.jpg