Diagnosis

[momforthe1sttime]

Hi. I am new to this site and think that it will be very helpful. My son, Trenton is 2 months, 2 weeks, and 3 days old. He is doing awesome. However, when he was born, he was tested for downs because of his high forehead. Then we were told he was fine and the test came back negative. The dr then said that his fh was a family trait b/c my hubby has a high fh also. So, we thought we were in the clear. Then his dr decided to send us for an xray to just make sure there was nothing going on. The xray came back reading that the saggittal, coronal, and lambdoid sutures were not visible. Now, my son has no assymetry and is beyond milestones for his age. I am scared to death. This happened on May 19th and they were no able to get us into the neurosurgeon until July 18th. I am so frustrated b/c I read that the closure of all of those sutures is the rarest forms and that it comes with distinct facial and physical characteristics. However, he looks like a normal little boy. He is amazing. He actually is growing by leaps and bounds according to his ped. He was born at 7 pounds, 10 and a quarter ounces and 19 inches long. His head circ was 34 cm at the time. He now weighs in at 12 pounds, is 23 inches long, and the last time (June 8th) his head was already 39 and three quarters. His ped told us that his head is expanding the way it should, but she couldn't promise his brain would grow in his head properly, so therefore we still will be going to the ns. I don't know what will happen next. I know that he should go for a ct, but our ped wants the ns to look at him first and then he can send us for the ct. But, I hate the prolonging of this whole thing. I am so scared of icp and always think that there is something wrong with our child. He is full of life. He is always "talking", rolling over from belly to back both right and left, stands up when putting pressure on feet, starting to hold head up for 20 min at a rip, he eats 7 oz at every sitting 3 - 4 hours apart, he follows objects with his eyes, he is now batting at hanging objects when on his play mat. I see nothing but "normal" milestones and above average happenings with him. I am concerned about the xray reading and wonder if it could have been read wrong. I see the long narrow head sometimes when I look at him and do feel that he def. has saggittal closure, but the coronal and lambdoid I just am not seeing at all. But, if has all fo the closed, what does it mean?????? I'm so scared and just need to talk to others who have been thru this. I am so worried about him going thru the surgery, but feel that he is strong and will be okay. Seems it's harder on my hubby and I.:no

[Jennifer]

First off---:welcome I am glad you found this site. I'm positive we can offer you tons of support. Secondly- He is soooo cute!!!!!

I'm sure this is a very scary time for you all...it's so hard to think that your baby may have to go through surgery...:hugg And there seems to be ALOT of waiting in this journey. If surgery is needed..please know that these babies are so strong and bounce back sooo quickly. It is amazing how well they do. Also, it has been caught early- so that's also helpful- it gives you more time to research and see what the different options are.
X-rays can be wrong. I've heard of it many times. They can also be right. I would call the NS's office and see if they want you to get a CT done before meeting with them. They are definantly more accurate and if it is questionable that there are fused sutures- maybe they would want to see that?

In the meantime, I would recommend researching all you can to help you be informed going into your meeting with the NS. We have a list on this site of questions to ask that me be helpful to you. Mainly though- enjoy your son, try not to let cranio be in your every thought (way easier said than done!)....just enjoy him and love him.

[Matthews Mommy]

:colors I know how you are feeling and it is totally normal!
Saggital is very common actually especially in boys, x-rays usually are not always as accurate because they are not done in 3D. The Ct in 3D with bone windows is usually the common one and it's good because the pictures can be done in slices they will definately get a better look at all areas. It took 2 CT confirmations for my son, because the NS wanted to be absolutely positive.
heres a link for more information: http://www.ninds.nih.gov/disorders/craniosynostosis/craniosynostosis.htm

March Of Dimes was very helpful I called them when my son was diagnosed and they referred me to a program that linked me with a family, I received that families phone number and was able to call them and they walked me through the whole thing their daughter had her surgery almost a year before.
It really helped me. Good Luck and I will keep you in my prayers.

[Scotwr]

:icon_mrgr Hi Amy!! Glad to see you here! I think I might be able to help you feel a little bit better. My son is five and a half months old. You can see frm his pic that he looks perfectly normal. At his 3 month check up I asked the doc to check out this very small flat spot on his forehead. He sent us for an x-ray which came back noting left coronal CS. We were devestated of course. Then he suggested we go to Duke Children's Hospital in Durham, NC. I called the NS there and he requested a CT first. We did the CT the following week, and it came back reading "no CS". Those results and the scan and X-ray themselves were sent to Duke and the doc there took a look at them. He thinks now that he probably will NOT need the surgery and that it is most likely plagiocephaly which can be corrected with a band or helmet. Still, we are going to Duke this coming Monday for him to look at the baby (Luke) and give us a definate diagnosis. Anyway, the point I am trying to make is that there are lots of tests, different findings, and lots of waiting. Just don't be satisfied by one test. Get everything done and try not to worry too much until you have all tests are finished and the NS gives you a definate answer. If you need to talk, we are kinda in the same boat here so I will be happy to listen.
~Pam

[snickers9246]

Hey Amy!! You sound soooo stressed hun!! :hugg We all know exactly what you are going through, so you've definately came to the right place! My little one was diagnosed at 3 months with Coronal cranio and it was the longest wait in my life. Jen is sooo right, X-rays are not a way to diagnose cranio, defiantely call the NS office and see if they can get you in for a CT prior to the visit, if he does have multiple sutures fused, the sooner the better. Also, realize when they do send him for a CT they may have to sedate him, some little ones are so squirmy that they won't ly still or stay asleep for the CT, so you may need to prepare for that as well. It's not bad, a little oral meds and they fall asleep for a couple of hours, still something I hated. :)

We're all here if you have any questions at all, please feel free to ask away, you've got some of the best resources around on this site. Mom's who have already done what you're doing or who are waiting like you.

[Katie]

Hi Amy, welcome :hugg We all know how scared you are right now and how hard the waiting is. Just remember, like the others said, an X-ray is not a very good way to diagnose craniosynostosis. I'm sure the neurosurgeon will send you for a CT scan, but it couldn't hurt to call and see if they want Trenton to have it before your appointment. If the wording on the report said the sutures were not visible, rather than saying they were fused, maybe they mean that it's not a clear enough shot to say for sure? My son Dillon had multiple sutures, and I'm happy to say that he is doing very good now. We're all here for you, and hope that July 18th comes fast for you :hugg

By the way, Trenton is adorable!

[momforthe1sttime]

I want to thank all of you for your support. This has been a very trying, worrisome process with my son. Trenton is the joy of our lives and I just want to make sure he has the very best care in the world. I will climb whatever mountain I have to if it means he will have a normal, successful, and most importantly, healthy life. The waiting in this process is just horrendous. With encouragement from all of you, I just contacted Trenton's dr and asked to have either an mri or a ct ordered so that when we go see the ns on July 18th, we will hopefully have a definate confirmation as to what is happening. I just pulled out his xray report again and reread it. It read that there are non-visualized sagittal, coronal, and lambdoid sutures and there is a craniofacial disproportion where the cranium is bigger than the face. It meantions something about few wormian bones too which I have no idea what those are. I am assuming the bones behind his eyes. He sees fine and hears fine according to testing up to this point. So, my concern is not too great about those things. It is just so scary not knowing what is happening next. I think what is bothering me too is that everything I read says if multiple sutures are fused it needs immediate attention and surgery. Yet, the ns we are scheduled to see on the 18th didn't seem to be in a hurry and has waited this long. The xrays were done on May 17th. So, I keep trying to stay positive that the ns was not overly concerned. Thanks again for all of your support. Your children are all so beautiful and the support that you are giving me is really helping to push me in the right direction.

[KALEMSMOM]

Hello Amy and Welcome to craniokids. As everyone mentioned, this is a very scary journey to embark. I remember being devasted about the whole ordeal. It ate me up, it's all I thought about. Try to get as much info as possible and don't be like me and let it consume your life. Like the girls said, enjoy him. These babies are amazingly strong and resilient. They bouce back sooo quickly. Good luck on your appointment and please keep us updated.

[mikaylasmommy]

Welcome to this board. Although it is very hard to do try to wait for the CT before you get worried. X-rays are just the first step and are not used to diagnose cranio at all. They are just performed I think for insurance purposed to give a reason to get the CT done. Only the CT will tell exactly. Does your son have any ridges along the sutures that are supposedly fused? My daughter was born with both of her coronal sutures fused and by the time she was 4 months old she had very noticable ridging along the suture line. I will attach a pic of her so you can see. Anyway try feeling with your finger. They don't diagnose by feel the suture but usually if it is fused it is raised. I am sure it can be fused and not raised but usually you see it raised. Your son doesn't look to have any coronal fusion from just looking at the pics you sent. But of course I am not a Dr. In any case. This will be much harder for you to live through than him. The babies go through surgery and come out on the other side just fine. My daughter did worse with recovery from her tonsilectomy than from the cranio surgery.

http://img.photobucket.com/albums/v458/sizemore315/000_0146.jpg

[momforthe1sttime]

So I talked to Trenton ped today and she wants me to wait until we see the ns before having a ct. She does not want our littlle guy exposed to radiation until it is decided if he should have a ct or an mri by the ns. So, we are back to the waiting game AGAIN. In the meantime, thanks for posting a pic of your daughter. I sometimes see the cranio and other times, I think he looks like a normal little boy. I feel his head constantly. I think I feel dents on right and left side of front fontenelle, but my husband thinks I'm just analyzing too much because he doesn't feel what I feel on T's head. I guess we just have to wait it out....ugh!

[mom2mykidos3]

I must say trust yourself. My husband always said that my daughter was just fine too. My daughter was diagnosed with left coronal CS in May. She is 3 months now and doing great. I understand the waiting. Our CFS is waiting until she is 5 months old to do the CT, and waiting until she is 6 months to do the surgery. I think the waiting is the worst because you question everything they do. This website is wonderful to let you know that your baby is doing fine. If you want to check out Miriam's website you can. It is in our profile. There are a lot of pictures on it.:welcome

[Jennifer]

I think what is bothering me too is that everything I read says if multiple sutures are fused it needs immediate attention and surgery. Yet, the ns we are scheduled to see on the 18th didn't seem to be in a hurry and has waited this long.

The waiting is really hard- but you were lucky and got a diagnosis at 2 months- most ns's won't do surgery until 4 months....some wait until 6 months or later- that may be why they aren't in a hurry. If they see your son and feel there is ICP or anything, they could schedule the surgery right away...if they don't see the ICP they may wait for a few more months to have the surgery. Be prepared for that. We met our NS when Emily was about 2- 2 1/2 months old and we were able to get the surgery date at that appointment. Ours would do coronal surgeries at 4 months, but not a day under, so Emily's was done when she was 4 mnths 2 weeks. We met w/ another NS in the meantime (just to see a different opinion) and they said they would call us when she was 5 months to schedule the surgery between 6 and 8 months- so not only would we have to wait longer for the surgery, but we would have to wait to get a surgery date.....So there is alot of waiting involved. On the flip side- there was a family our NS's office the last time we were there and it was her first time meeting w/ the NS and by the end of the appointment their surgery was scheduled for 1 1/2 later......

I think with the fact that he is doing everything he should be, eating well, etc....there shouldn't be alot of concern for ICP right now....If when you meet w/ the NS and they want a CT right away- they can usually get you in that day if they need it.....(if they work directly w/ a hospital which I believe ?? alot of them do)

[mom2mykidos3]

Ok I am new to all of this. What is ICP??? I know I must be stupid. Just wondering.:uh

[Scotwr]

ICP = intracranial pressure

[Matthews Mommy]

It's ok your not stupid, all the little abbreviations are confusing! :hugg

[mikaylasmommy]

Wow what a cutie! I don't see coronal in him. But like I said I am not a Dr. Coronal babies don't have a prominent forehead at all. It is all flat or flat on one side. Sorry you have to wait. I am almost sure the NS will order a CT since that is the only way to get a true diagnosis. I totally understand about not wanting radiation if it isn't needed. Hope the time flies by for you!

[momforthe1sttime]

Well, the waiting continues b/c our ns wants to see us before ordering a ct. When I look at Trenton I don't see the coronal, but I'm not a dr either. I am having a hard time believing the xray and wondering if T squirmed during the xray. Although my hubby assisted with it and seems to think he was completely still. I don't want him to go thru radiation at all, but if a CT is the true way to diagnose cranio, then I want him to have one. I need peace of mind and I need to know what is happening. Right now we are just loving him to pieces each and every moment of each day. He is our miracle child, as I suffer from endometriosis and wasn't even supposed to get pregnant! I thank God every day for our little man! Thank you so much to all of you for your thoughts, prayers, and kind words. I feel like I have found some good friends here that will help me thru each step of this journey.
Trenton learned how to use his boppy yesterday a bit....so I'm attaching a pic.....he amazes us each day with something new and exciting.....

[verdon2]

:adore What a cutie!!! I too would like to :welcome you!!! You are in good hands here, we are a close-knit group and very supportive. Hope you find it helpful!!! Love the pic!!! GORGEOUS!!!!!!!:icon_mrgr

[mom2mykidos3]

Yes, as I went to bed last night I realized what ICP was. It just popped in my mind. Not to discourage you, but is he always wide eyed. Because Miriam's one is alway wide open. His eyes seem to be wider open to me. I am sorry you have to wait more. We can't see you CFS again until the end of August and it is killing me. Then they will do the CT and we will meet our NS. So I have a feeling that September is going to be a busy month for us. Best wishes.

[Katie]

He is our miracle child, as I suffer from endometriosis and wasn't even supposed to get pregnant!

I just wanted to pipe in and tell you that Dillon is our miracle in more ways than one also! We went through years of fertility treatment because I also have endometriosis and PCOS. :hugg

[momforthe1sttime]

Mom2mykids - my prayers will be with you as you move toward September. Trenton is not always wide eyed. He tends to get a bit excited when the camera comes out. His eyes look open in a normal way all the time usually. He's just a ham when Mommy is taking pics. He's a stinker!
Katie - all children are miracles, but ours are extra special, wouldn't you agree?

[mom2mykidos3]

I know how it is to have a cheeser. My 2 year old is that way. The camera comes out and he jumps for joy. Thanks for the good vibes our way. :yipee

[momforthe1sttime]

Well I just got in touch with my son's ped. office. It amazes me that if I am not on top of things, pushing for things to get done, they just do not get done. As you all know, we have to see the NS on the 18th. I wanted a 3D CT done BEFORE we go to see him. However, after speaking to the ped. office, Dr. Waldman's office called and said that he does NOT want him to have anything done. He just wants to see him in the office. Now, I am taking this a couple of different ways. First, he did not rush to get him in after xrays on May 17th saying it was not an emergency. So I think maybe he feels xrays were not read correctly. So I think maybe him just wanting to see him first, maybe he just wants to make his own assessment and then send us from there. Then, I think he just is already thinking surgery and Trenton will be 3 months and 1 week old when he sees him, so it will be closer to scheduling date. I am trying to stay positive about all of this, it is just so frustrating and hard. I really want him to have a 3D CT to rule out everything for sure! I don't understand why the NS wants to see him first. It bothers me that my son has a "big" head and according to the xray it says that his cranium is bigger than his face. Why do they drag this whole process out????? I am the kind of person that likes to know what the plan of attack is. The sooner we get the CT done, the sooner we can move forward with how we are going to handle the whole situation. Any thoughts/feelings on the NS not wanting to have Trenton have a CT before he comes? I just don't know what to make of this. :banghead

[Matthews Mommy]

Well, when Matt had his first x-ray and CT to rule out hydrocephalus by the pediatrician. I took Him to the NS with the results and he just wanted to see him first too, then he said he wanted to do the 3D with bone windows at his facility (more high tech)? Then we were rescheduled to come back in 3 weeks and thats when the diagnosis was confirmed, he was scheduled for surgery. I found that going only to a NS institute, without craniofacial team is a little more of a wait. With Matt's second time around the CT consult, and surgery being scheduled took me a month, as opposed to the first time he was 2 months at the start and 5 months before everything was finalized and surgery performed. His new doctor is amazing there is a whole team, NS, pediatrics, plastic surgeon the works. Are you seeing just a NS?

[momforthe1sttime]

We are scheduled to see the pediatric neurosurgeon at Albany Medical Center. My ped. referred us to him b/c he specializes in craniosyntosis and hydrocephalus. I believe/pretty sure he has the cranial team in the same building, but we have to start at the NS first. I am just worried b/c my son's cranium is bigger than his face and b/c these sutures are fused. I really want a 3D ct done, but I guess I just have to try to be patient.:no

[Jennifer]

My 2 cents.....It's so hard to not look into things, but it could really be many things:
1. He may want the CT done through his team- as it gives him the access done(ours wanted it done through her hospital as her patient- that gave her access to the CT online- she just had to put in her code and patient name and could look at it virtually as the scan was going on).

2. If he's pretty sure based on the X-ray it's cranio, he may want to see him (alot can be confirmed visually) and then he may be the type that want the CT done just before surgery (our surgery was scheduled before any CT was done. She just wanted it done before surgery so she could make sure there wasn't anything else- and she does surgeries early so there wasn't a real threat of ICP yet- we did it a month before surgery/a month after her diagnosing it and then reviewed it at our last appointment pre-op).

I'm sure there are many other things it could be. If you meet w/ them and he says NO, it's not cranio- w/o a CT- that is when I would demand one just to confirm everything, so you wouldn't have to continue w/ the "what-if's"

[momforthe1sttime]

No matter what happens, I am demanding a 3d CT b/c I am not going to live my life with questions in my mind. It's ridiculous. I feel that the reason he is waiting to just see Trenton is b/c he wants it done where his team can access it. After thinking about it more yesterday, I feel fortunate that we are early into this and that it can be fixed. I am trying to go a day at a time. I just want to make sure there is no ICP.

[plukids]

Hello and welcome! Sorry this post comes so late!! Our NS wanted to see our daughter first, too. After his evaluation/exam he sent us to a special new offsite CT place because he said they had better equipment and would do a GREAT (I was thinking he meant better than the hospital) job. We were very pleased with the service that we received both from the NS and from the CT place. I do have to say the waiting drove me nuts though! I thought I would lose my mind waiting. However, the NS did tell us by physical exam of Sylvia what he suspected and did tell us that most of the time his suspicions are correct. So we did have a preliminary head up even though we were waiting for the final formal diagnosis. ((HUGS)) to you and I will pray that the time passes quickly until your appointment. Keep us posted!

[momforthe1sttime]

Thank you for your response. I am anxious and for some reason I thought the 18th was Monday, but it's Tuesday. UGH...one extra day to wait. Thank you for your prayers. Right now we can use all we can get. It's in God's hands.

[ExpatJen]

First, welcome to the site - it has been so helpful to me I don't know how I would have coped without it.

Now for my two cents:

I think you need to take a deep breath. Your doctors sound like they are on top of things: you have been referred to excellent specialists, and you yourself say that Trenton is happy and thriving (which would not be the case, I imagine, if ICP were present). Be glad your doctors are taking a thoughtful approach. The 18th is not far away - and my guess is that the NS will have a fairly good idea by examining Trenton as to whether he has fused sutures. If they have any suspicions they will schedule the CT right away and you will probably have a minimum wait.

So many people have had the same view as you regarding CT scans before seeing the NS for the first time and I have never heard an NS wanting that done. In my own case, it was exactly the same - I called wanting to have the 3D CT scan in hand for that first meeting but was told that they had to see the child first and the NS spent alot of time explaining to me why it would be done later. CTs must be done with some thought - they are not x-rays but expose your child to 100 times the level of radiation and doctors are rightly reluctant to do them as readily as they do x-rays. They are a miracle test, for sure, and I am very grateful for them, but they still need to be done with caution. Take that deep breath and keep a close eye on Trenton's behavior - if he is happy and fine then don't worry. And Jennifer is no doubt right that your doctors probably have other reasons for waiting, like using their own machine - keeping in mind that a craniofacial center will more likely have a child CT scanner and not only an adult one (some facilities only have adult ones and expose kids to the same level of radiation as an adult would have). You want a machine that can be calibrated for babies and children because Trenton should get the lowest dose possible. Ask your doctor if these are some of his concerns - sometimes doctors are reluctant to educate parents and need to be asked.

Good luck and keep writing if you have more fears because chances are most of us have had the same ones.

A Big Hug,

Jennifer C

[momforthe1sttime]

Jennifer - your thoughtful words and advice truly help me get thru times of worry and struggle. Last night was a bad night for me b/c my mind was just moving so fast ahead. I know that we are in good hands and after reading so much, I am glad to know that truly my son's cranio has been found early enough to be treated. I know we will make it thru this journey. Trenton is a stinker. 3 months old already today and yes, thankfully, doing so well. Our appt is so soon that I'm getting anxious and nervous, but yet so elated that we will finally have answers and hopefully a plan of attack. As for the CT scan - I don't want him to have any radiation, I just want a definate diagnosis. But, going to a Children's Hospital with a team available is where we need to be. So, that's what we are going to do.

Thank you for your support and listening. I just need to to vent and talk to others who understand because although my husband is truly the best dad and best husband and I love him early, he will not accept that our son has cranio. He still says there is nothing wrong with Trenton and that he is not convinced of the xrays. He thinks I am analyzing Trenton's head too much. There are moments when I look at T and wonder why they are "picking on my son when his head seems to look fine." But, then reality sets in and I know it's because he needs to have the best medical care in order to have a normal, happy, healthy life. I am just dreading the many hours of surgery sitting in the waiting room and pacing. I don't know how I will handle it, but know that I will somehow.

Thanks again!

[mom2mykidos3]

My doctor did the same thing. We won't get the CT scan until we go back a month prior to surgery. I am lucky in knowing that by the way that Miriam looks we are 99% positive that she has CS.
Lately, I have found that I just need to take the time to enjoy everything that she is doing. Don't dwell on what is to come. Trust your doctors and pray for them.
Miriam does go to Primary Children's Hospital in Salt Lake. I am so thankful for the resources a children's hospital can give you. Good luck on the 18th.

[plukids]

((Hugs)) Amy! I have been there. I was the only one for a very long time that noticed Sylvie's assymmetry. I couldn't put my finger on it. I would see it and then when I was talking with my husband, family member or friend I would try to point it out and they could not see it. My husband thought I had really jumped off the deep end. In our case Sylvie was not diagnosed until she was almost 10 months old. Probably a week or two prior to diagnosis my husband was finally agreeing with me on her look. By then the cranio had progressively changed her appearance even more and it was more visible. I could see her's more in the mirror image and also from the back of her head. He ears were misaligned. I am praying that when you go to the NS you'll leave feeling informed. Don't forget to bring a long list of questions and a notebook to jot notes. I remember my husband and I at the same consult heard the doctor different ways. This was good but I was glad I had jotted down some things just to double check what I thought I heard. It is extremely hard to trust yourself, your child and God. On the cranio-rollercoaster, as it is called, that is what helped me immensely. That and Crankokids. The support here is what I needed more than anything! Let me know if you need anything even if it is just to chat or vent! Feel free to PM.

[Matthews Mommy]

During the whole thing diagnosis, etc. I was very strong and understanding. I prepared myself through timeless research, and educated myself for the whole surgery, and Craniosynostosis. My husband was very emotional and weak. The day of surgery the nurses and doctors were prepping Matt for surgery and I fell apart, I burst into tears and ran out of the room. My husband pulled himself together and went to his bedside...he became me!
It took me all that time to cry, 3 months!
The reason I tell you this is because everyone hides behind strength, others use denial, some people are emotional! but the day of surgery, or event in life takes place it sorts itself out. My husband and I switched roles that day he became the strong one and I was the worry wart.
When matt came out of surgery. I was back to me, and my husband felt better knowing he could be strong when he needed to, and I knew it was okay to cry and fall apart, because as long as you have support there is always someone there to help pick you up and put you back together!:hugg
Don't worry it will work out.

[momforthe1sttime]

Thank you for sharing your stories with me. I am finding more and more each day that thru all of my crying and my researching, my hubby is trying to be the strong one. However, I feel as if he is a bit in denial about everything. We have alot ahead of us and I don't know if he is ready to accept that. Although he says that once the NS confirms diagnosis, he will accept it. I am struggling with acceptance myself b/c no one wants anything to be wrong with their child, regardless. I just don't want to be ignorant or uneducated about what lies ahead of us. It is eating me alive knowing my little man has so much ahead of him, but yet, I'm a peace knowing that we are going to a very good dr. I'm experiencing so many different emotions through this process, it's scary. I don't know how I will handle the moment in the hospital of handing over my son and that's when my hubby's strength will most definately be needed.
Thanks again for keeping me in your thoughts and just for listening. I feel better each time I talk about my feelings with ppl who truly understand!

[Jennifer]

I'm glad we can make you feel better! :hugg :hugg

Josette- you said it so well. We all handle our fear in so many different ways, yet we all make it through.

[plukids]

"I feel better each time I talk about my feelings with ppl who truly understand!"
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Hooray that's what Cranio Kids is all about!!