Logan's Story- A mild metopic that had issues
Logan was born on August 1, 2007. She was healthy and we felt very blessed! She did have a weird bump going down her forehead and an unusually shaped head, but we chalked it up to birth trauma and her positioning in the womb. We took her home and were amazed at how easy going she was compared to our older daughter. Logan was content as long as she was fed when she was hungry and slept for five hours her first night home. Everything changed about four days later. Logan screamed constantly. High pitched, shatter glass screams that lasted hours at a time. She wouldn't sleep for more than 10 minutes sometimes, waking up screaming. Nothing would console her. Our family's life came to a stand still. She was diagnosed with severe acid reflux and colic. We tried several meds, several formulas, and nothing worked. We were told that she would outgrow most of this and that the colic would start to dimish around four months of age. At Logan's six week check up I asked the pediatrician about Logan's headshape. I figured six weeks was enough time for things to "work out" after the birth trauma and I was starting to get concerned. (In fact I had been concerned for awhile, but my dh told me I was worrying over nothing and to give it sometime.) I had been positioning Logan since birth trying to get her head to even out to no avail. Her forehead was slanted, her ears did not match up, she had slanted bumps on the back of her head and she had the bump, ridge, down her forehead still. Logan also had problems with movement in her neck and held her head in a slanted position. The pedi said Logan had torticollis. She showed us some exercises to do with her and said for us to come back for a recheck and possibly PT. At Logan's four month check up we again mentioned the ridge going down her forehead. By now family members were questioning us about it, wondering what it was. They too thought it would fade after birth and it wasn't. The pedi said that Logan had a metopic ridge and that it was just where the plates were together, nothing to worry about. (I should mention that this was not our regular pedi.) We also asked the pedi and her pediatric gastro doc about her colic. It was not diminishing. It was as bad as ever. By now we were used to her. We couldn't travel, go for car rides longer than 20 minutes, couldn't leave her with anyone (she scared everybody, even family members). They said that sometimes, rarely, it takes longer, up to six months before it is gone. Six months came and went, same Logan. At her six month check up I asked about her headshape again. It was a little better, but was still odd in the back and her ears did not line up. The pedi said, "I am not as worried about her headshape as I am about the ridge down her forehead." The pediatrician mentioned the possibility of craniosynostosis and said that Logan needed to see a pediatric neurosurgeon. We were floored! How many times had we questioned her head, the ridge, and nothing... We were so upset, scared and confused. I started researching everything I could on cranio and found this website (YAY!!). I knew the questions to ask the nsg and was ready for our appointment in February 2008. The nsg did an x-ray and said that yes, Logan does have metopic cranio, but mild. He said that she would probably never need surgery, unless it was a cosmetic procedure to "shave down" her ridge around age 4. He said that we would monitor her for any changes and wait and see what happens, but that he felt fairly confident no surgery would be needed. I was relieved, but still not convinced. We did some research and scheduled an appointment with another doc for a second opinion in March 2008. We wanted to see a cfs, but the policy of this group sent you to the nsg first. So we went. He echoed what the other nsg said, but added that Logan did have temporal pinching and a slightly narrower forehead too. He said that he would recommend a CT scan though, just to make sure. We scheduled the CT scan for May 2008. Things still weren't sitting right with me. I wasn't convinced about this "wait and see" approach. Meanwhile, Logan's "colic" did finally start fade around 9 months of age. It was not gone, not by any means, but she had maybe 3 to 4 days a week instead of 7. I told my dh that I was still very worried about Logan and that I wanted her to see a CFS. I found one out of town and scheduled an appointment. I told dh that if this doc said the same thing...I would be done. In June 2008 Logan saw the CFS. He looked at her CT scan and did an exam. He said she was mild and put us on the wait and see approach. After that, I let it go ... for a little while. We had been taking pics of her head for awhile and we just continued to do that.
Logan's first birthday came and like most parents, we took a ton of pictures. When we looked back at the pictures, we were shocked. Even dh was upset and shocked. It was very obvious that her forehead was narrower, her temples were pinched more, her brows were ever so slightly not covered and you could actually see some mild trigon. We emailed Dr. Fearon (we had emailed him back in April too..and he said she was mild, wait and see). This time he said that he did see mild trigon, but that we should continue to monitor over the next few months to see how bad it is going to get. She was one year old now and her head growth was slowing down. Then, in late August, the bottom fell out. Logan started having some serious medical problems that no doctor could give us answers for- despite LOTS of tests. MANY days went by that Logan screamed all day- high pitched screams like the colic, but worse. She would lay her head on my chest and literally wimper and look up every few minutes screaming in pain. She also started to lose some of her milestones- in a matter of four days she "lost" the ability to walk, then to take one step, then to stand. She lost her balance and would even fall over, and backward, while sitting. She also had problems regulating her body temp- a "normal" rectal temp for her was 96 and it could range up to 104. She also had only one word, delayed for her age according to her pedi. I called her nsg and told them what was going on with Logan. Unfortunatley I got his nurse and assistant. They told me that in no way could any of this be related to Logan's "mild" metopic cranio. They said that I needed to find a good pedi and good ENT doc to get to the bottom of things. I was so mad. Logan had an ENT doc, she had tubes, and had them checked. One day while at the ENT's office, he said that we immediately needed to go and sit at the pedi's office until someone could see us and demand that they get to the bottom of this. She was that bad! The pedi's office ran test after test and everything came up "normal". They said I "should feel confident that nothing is wrong with her..look at her tests, they are normal". She was NOT normal. This lasted for a little over two months. Over the 9-10 weeks when Logan was so bad in Fall 2008, I can't tell you many times I prayed while holding her and crying. As a parent it is so hard to not be able to help your child when they are suffering. Many others were praying for her too. I needed God more than ever and prayed harder than I ever had before. With the push of some of my ck and cappskids friends, who were just as concerned about Logan, I sent an email about Logan, with pictures, to a great cranio advocate. She immediately got back to me and said that she was very concerned that all of this might be related to Logan's mild metopic cranio. She sent the email to Dr. Staffenberg, who has a special interest in "mild" cases. He contacted me on a Friday afternoon at 5:00 pm, convinced that he knew what was wrong with Logan and not wanting another minute to go by without speaking to me to let me that I was not alone or crazy. We spoke for about an hour. He said that Logan's case was exactly what they expected to see in a "mild" metopic case that was going to have issues. That in fact she may appear mild, but not really be. He said that they looked for several things, head hitting/rubbing, high pitched screaming, inconsolable crying, vague but potential learning and behavioral issues..ALL of which Logan had. I told him that we had a CT scan done in May. He does not recommend them, but since we already had one, wanted to see it. I mailed it up and heard from him soon afterward. He said, "By my eyes I see thinning of the frontal bone." He said that this thinning could indicate that her brain is pushing against the skull, trying to make room, and thinning it out. ICP, intercranial pressure. This was a CT from 6 months earlier!! All I could think of was how bad is it now. I talked to him about Logan's balance issues- you could watch her sway back and forth and side to side even when holding her hand to help support her, she still couldn't stand or walk, and I was also very concerned about her body regulating its temperature. We agreed that Logan should have an MRI prior to her coming up to NYC for an appointment and official diagnosis. We scheduled an appointment to fly up to see him, relieved that we finally had someone listening to us, helping us and had answers, but scared to death because we knew the only "fix" was for Logan was to have surgery. We were also very scared about ICP and wondering if her "colic" was related to it all along. By the time we flew up to see the Dr. Staffenberg in mid November, Logan was starting to turn a corner. She still couldn't walk, but she could stand for a few seconds. Her temps still fluctuated, she still screamed and cried in pain, but not every day..every other day. Dr. Staffenberg said that Logan's metopic cranio was mild, but that it didn't completely account for her headshape. He said that she was almost identical to another patient of his that had metopic and squamosal suture fusal. That her forehead was like a "dolphin" (bulbous) and that she was very long and narrow from the ears forward. We discussed Logan's "symptoms" seemingly starting to get better. They, Dr. S and his nsg, said that this could be because Logan came to a crisis point and her body used this pressure on her brain to "blow" her skull plates out to make room. That maybe that is why we saw major changes in her headshape during that time as well. And that maybe now she had room for her brain to grow and the ICP was diminishing. At this point my dh and I were so relieved that Logan was starting to get better that we, and the docs, agreed to monitor her just a little bit longer to see what she would do. At this point Logan was 15 months old and they said that around 85 percent of her brain was done growing so hopefully the worst was behind us. They said that the exact same surgery is done up until age two. We had some time..so lets monitor her. We knew what things to look out for if ICP started to get worse or return..so lets see what happens. Logan did continue to get better! At Christmas family members started to comment on how she seemed different. By February even the pediatrician was commenting that Logan was a completely different child. YES! Even the pedi came in to an appointment said "Oh my gosh, this is not the same child." The pedi also apologized to me that they didn’t, or couldn’t, help Logan last year. She said that although they are doctors, they don’t know everything and they are learning too. She thanked me for educating them and said that from just looking at Logan you would never have thought that her cranio would have caused any problems…but that from seeing her now and the change, it was so obvious that it did. She also told the intern in the room that you really need to watch even mild cases because ICP can be an issue.
Logan is happy and healthy. She smiles, plays, is outgoing, gets into everything- just like a "normal" child. Logan has never been like this- not since birth. I have known since she was about three days old that something very serious was wrong. I guess it was mommy intuition, but I have always had that knot in my stomach and worry that wouldn't go away. Well, I don't have it anymore!!! Besides being in speech therapy, Logan has no issues! She still has a metopic ridge, but somedays we think it is softening. She still has temple pinching and a narrow forehead, but it has not gotten any worse...and we can live with that!
If you made it this far...thanks! I know this long!!
Please feel free to check Logan's pics in my profile. Here are few-
8/1/2007-Birth
September 2007 (shows the torticollis- her head/forehead is actually slanted too)
April 2008-
May 2008-
August 2, 2008 (First birthday)
End of August 2008
October 20, 2008
Aidan 9/8/2000 Camden 7/29/2003 Ian 7/29/2007 - Upper end "Mild" metopic. Surgery 8/27/08, Dr. Fearon, Medical City Dallas. We're on the other side!!!
Kaci
