I don't understand the Dr.

[EtMom]

Hi, Glad I found this site. At our 6 month pedatrician visit the dr said oh, the soft spots on her head seem to be closed, we better watch this. Then sent me off. <kicking self now...that I didn't do something at that moment> So, months go by until her 9 month apt...long story short..she goes for a quick visit, and Dr says yes, I can't feel them, "but that doesn't mean they are not there" I am going to refer you to a nuerosurgeon, get a head ultrasound, and some other things..but I need a few days. (we live in a tiny rural area) I am in CT and it looks like to me there is only Hartford Hospital Childrens Med. Center and Yale Med. Center. This was on Monday. I have not heard back yet.
Since she seems to not think this is a "rush" thing, do you think she is being over cautious about this? What is the likelyhood of us going in there and them saying oh yes we can see them, she just couldnt feel them? At her age are we getting to a critical time to be doing this? When we do get a referal - do you go to get the ultrasound, meet w/a surgeon the same day - so you know right then?
Thank you:puke

[mrs j]

Hi Etmom, welcome to the site, yours seems to be a similar story to mine, drs that are just too slow, Bradley has metopic cranio and is going for surgery in 5wks, if i were you i would chase these appointments up, keep pestering them, on the other things you were asking, i dont really know a lot about the way surgeons where you are work things, i think you generally have a ct scan and the neurosurgeon gives you the results. But as far as the age thing is concered, your right, your daughter is now over 9mths old, i would def push for these appointments, the sooner the better. There is a lot of mums on here from your end of town, so im sure you will get better answers than im giving you, i just wanted to say hello.xx

[xl1200c]

I would definately push if you can. Our CT appointment was scheduled right away but the date was a month away. Due to this our doctor scheduled a neurosurgeon appointment (because there was a month wait for that too). So we ended up having our neurosurgeon appointment be just 3 days after the CT, instead of long waits between the two. I thought it was smart of them to book both appointments at the same time so I could be seen asap after having the CT.

I would definately advise having the neurosurgeon review the actual pictures from the scan, and not just the report from the radiologist. Our radiologist mis-read the images and we lost alot of time.

Also, I have heard good things about Hartford, CCMC. We considered them for a bit, but decided on Boston in the end. I would be happy to supply a pile of references if you feel you'd be interested in Boston. Nancy just recently used CCMC and maybe will chime in. Other Mom's in CT have also used Montefiore in NY and been very happy.

[EmmaLacey]

ET Mom. Yes, I think that you should take matters into your own hands because this is your child and even though our Ped's are suppose to have our best interest at heart they have so many patients and are so busy and this is something that is just out of their hands. I don't know where in CT you are...but I am in New Milford and we recently went to CCMC in Hartfort (Children's Med Center) and had our daughter's sugery.

Basically at our 6 mth appt. in Nov. our ped said the same as you -no soft spot - however she told us to make the appt immediately with the Cranio facial team in Hartford. I called the next day and our appt. was for 1 week later. We went and about 6 doctors looked at Emma and said she had sagittal Craniosynostosis. WE did not need a CT scan or anything. If you go they might want one depending on what they see with your child. With Emma it was clear she had sagittal and they didn't need to see inside. Our surgery was scheduled for 1 month later.

We were extremely pleased with the hospital and the entire craniofacial team and especially our Neurosurgeon, Dr. Kanev. Please PM me or call me on the phone. I would be very happy to give you all my contacts and phone numbers so you can get an appointment right away. Not sure if you need a referral. My ped. just gave me the number and told me to call myself so I did. I just told them that my ped said to call, so I'm sure that you could do the same. I would recommend you take this into your own hands as your Doctor is kind of being slow. ONce you get your appt. at CCMC then things can progress quickly for you. Originally we were told our surgery wouldn't be until Feb (Emma would have been 9 months old). I spoke to the program director (who is really really great) and she went to the NS and they looked at his schedule and because of Emma's age they bumped somebody (I feel bad about that but they said its not first come first serve, but what's best for the child) so our surgery was Dec 13. Please read more about my story if you like in the our stories forum or click on the link below my sig.

I would be happy to help you with this as I just went through it myself and I know what you are going through.

Nancy

[EtMom]

Ty so much for the replies everyone :)

Nancy,....I am up the road from you in Kent. wonder if we have the same pedatrician, ...? I just have a sec. in between naps checking the forum, but I would very much love to talk more. I guess, I am sort of in denial since the dr is so slow, but everyone is right I need to take this into my own hands now.

Evie was born at New Milford Hospital :)

Talk more soon, at next nap,
Joy

[EmmaLacey]

Joy, I am glad you are close to me. My kids were both born at NM hospital also. I go to Candlewood Pediatrics in New MIlford. In my Ped's defense - she sent us to NM hospital when Emma was 1 month old cuz she didn't feel a soft spot and the radiologist said that all was fine with the XRay and so we weren't concerned. Finally at 6 month appt. when still no soft spot they told us we better see a specialist. Even though she could have been diagnosed sooner I am glad that it all turned out the way it did. I will tell you more when we talk! Hang in there - you will get your answers soon.

[sarahob]

I hope you are able to get an appointment soon. We too had to push things along ourselves. The first hospital we were referred to didn't get back to us for a couple months (despite our constant calling) and we ended up getting a referral to another hospital which turned out to be a blessing because they had much more expertise in these surgeries. You do need to be persistent. Gavin was diagnosed at about 7 months and had his surgery 5 days before his first birthday. Gavin didn't have his CT Scan until a few days before the surgery (they diagnosed without a CT Scan). We had our surgery date booked before the CT scan. Please keep us posted and I hope you get some answers soon. I know that NAncy will be a great help to you. Take Care.

[EmmaLacey]

Joy- it was a pleasure to talk with you today. Just wanted to know how you made out. I am sure you probably had to leave a message and are waiting for someone to call you back. Let me know if you have any other questions in the meantime.

[EtMom]

Thank you so much you guys, you have no idea how big of a help your messages are :)

I am so glad I was able to talk to you Nancy, thank you very much. Your right, I called and they took down information and said someone would call us back tommorrow. Which seems very soon actually :) so I am happy I had that number and just called them. They asked for our pedatrician's name, so I assume they will be calling her first before they call us. Hopefully, that will speed things up too.

How do you guys post pictures here?

[EmmaLacey]

Go to the INformation Room Forum and someone else asked that question today (Libbysmom) and Jennifer posted an answer. It is kind of confusing at first but once you figure it out its not that hard. If you can't figure it out, let me know and I can help you (or if you want to post Evie's picture to get feedback from other Mom's you can email it to me and I'll post it).

Have a good night,
Nancy

[three.little.boys]

welcome to this site! Sorry you are confused right now. I am also sorry to report that my son's pedi even said that she felt a "little soft spot, so it's OK"...only after I pushed to have a CT scan did we finally see that there was NO soft spot at all (As I had always declared!) and that Quintin's metopic suture was closed.

If you have ANY doubt, have the CT done. Most parents on here will report that their child's pedi was not well informed on this condition...most don't even know what to look for!

Trust your instincts. Do YOU feel like there is something "wrong" or "off" about her head??

Good luck!
Sadie

[EmmaLacey]

ETMom asked me to post some pictures of her darling little Evie. I gave her the information for CCMC and they are suppose to be getting back to her with a consulation appointment after they check her insurance and contact her Pediatrician (who still hasn't called her back since Monday!).

http://i222.photobucket.com/albums/dd144/mnlmeyer/of50590442.jpghttp://i222.photobucket.com/albums/dd144/mnlmeyer/2323232327Ffp532633Evq3D323C3B3E-1.jpghttp://i222.photobucket.com/albums/dd144/mnlmeyer/2323232327Ffp532633Evq3D323C3B3E63A.jpghttp://i222.photobucket.com/albums/dd144/mnlmeyer/2323232327Ffp53253B3Evq3D323C3B3E63.jpg

[EtMom]

Thank you so much Nancy, I never would have figured out how to post 'em :) Smart lady!! Hopefully we will hear something on this coming Monday, nothing from anyone as of yet. A few ppl I have spoken with say they probably are talking to the pedatrician to confirm as well as talk to the insurance co. to make sure we are covered for it.
A nurse friend said some dr's are better at feeling the soft spots as well as sutures so maybe like the pedatrician said even though she can't feel them doesn't mean they are there. After reading more websites, it does seem to indicate that if the soft spots close that isn't necessarily a problem, the problem comes when sutures are fused ..which I guess is indicated by closed soft spots. Of course, with the time on my hands I keep reading all this stuff and it gets me more confused and reading into things more. Like why would she order (or indicate she'd like to order) an ultrasound, so I google what that is typically used to diagnose and that is a whole seperate thing in most cases. I think Evie might be coming down with an ear infection, she is leaning her head ear toward her shoulder as if to scratch it or make it feel better and has had some strange sleep disturbances...I guess I have an excuse to call on Monday anyways...this time I think I will go to a different pedatrician. Thanks again all :)

[three.little.boys]

<TABLE id=HB_Mail_Container height="100%" cellSpacing=0 cellPadding=0 width="100%" border=0 UNSELECTABLE="on"><TBODY><TR height="100%" width="100%" UNSELECTABLE="on"><TD id=HB_Focus_Element vAlign=top width="100%" background="" height=250 UNSELECTABLE="off">I think your daughter looks metopic! Sorry! As a mommy of a metopic, I see some of the same traits in Evie as in Quintin. See the shadowing on her temples...and I see what looks like a bump or ridge running vertically on her forehead. I hope I am wrong!! I have attached a photo of Quintin that has this shading of the temples, as well as his CT scan so you can see what Quintin looks like with no soft spot (plus the metopic suture closed)

Sadie

http://i270.photobucket.com/albums/jj82/sadieadecker/quin2.jpg
http://i270.photobucket.com/albums/jj82/sadieadecker/q1.jpg
http://i270.photobucket.com/albums/jj82/sadieadecker/q1st.jpg
http://i270.photobucket.com/albums/jj82/sadieadecker/quintin1-9mophotos.jpg

</TD></TR><TR UNSELECTABLE="on" hb_tag="1"><TD style="FONT-SIZE: 1pt" height=1 UNSELECTABLE="on">

</TD></TR></TBODY></TABLE>

[EmmaLacey]

Since I mostly have experience with sagittal, I felt the only thing I could offer was that she definetly didn't have sagittal. Her head is nice and round. I wasn't sure about the other features. I see the indentations around the temple area and you can see a line that runs around her forehead kind of but I didn't see any ridge down the forehead. Maybe I'll try and post some bigger pictures or at least a link to her photo album that she sent me.

[EmmaLacey]

this is a test
http://www1.snapfish.com/share/p=124111200073656644/l=344118591/g=99472866/otsc=SYE/otsi=SALB
http://www2.snapfish.com/thumbnailshare/AlbumID=170153341/a=119384941_99472866/t_=119384941;jsessionid=D1A387E3D863F1BE092C2F6A7F 13FC90

[EmmaLacey]

Not sure if the above links will work for you guys. Hopefully Joy doesn't mind - if you do Joy, we can delete the links.

[cheryl2]

Hi, my daughter had her surgery 4 years ago when we lived in California, but we live in Bethel, CT now, so not far from you at all. She had a "touch up" cranio surgery at Yale done by Dr. Persing and 3 eye surgeries at Yale as well. Our ped also did not rush. We all noticed right from the start that she had some assymetry, but she wasn't diagnosed with cranio until 7 months and had surgery at 10 months. Good luck, hope you will get some definite answers real soon.

[three.little.boys]

I took a look at the photos on Snapfish. It's hard to tell...those photos did not seem to show as much of a ridge as I thought I saw in the photos before...I could still see traits of the pinching in or shadowing on the temples associated with metopic. She is adorable and has a very nicely shaped head!! I'd still do the CT so that you don't have to face this down the line when she is older just in case she is metopic. The fact that you can not feel a soft spot concerns me. Could you ever feel one when she was a newborn? I could never find one on Quintin when he was new and it always bothered me! Also, you could just get a second opinion from another pedi. who has treated babies with craniosynostosis before and is better at feeling for sutures.

Either way, she is a doll! And, no matter what...trust YOUR instincts. Does your gut feel something is wrong?? If so, then there usually is!

Good luck!
Sadie

[Springy]

Libby is a saggital baby. I dont really have any experience with other types of cranio. I am glad you found this place. Everyone on here is wonderful! And Evie is beautiful

[angeleka]

We had a CT scan the same day as our NS appointment. That worked best for us because we went right from the CT to the NS where the NS read the films ont he computer. The bad part was that Andrew was really screaming because of the sedation meds and my husband had to take him away so I could her the Dr. I had to re-explain everything to him later and he had questions I did not get answers to. On the positive side, we had all the answers in right away and only had to make one trip to the hospital.
Hope that helps. I would push to get the scan though. Better safe than sorry. I would not let the pedi wait on this.
Angi

[EmmaLacey]

Joy, did you hear anything today?

I know that it would be nice to have both on the same day. I had asked if we would be able to have our CT scan when we went for our first consult and they said "no" you'll have to come back for it - but then we didn't need one anyway. I guess it can't hurt to ask though. In Emma's case it was obvious I guess that she had sagittal so no CT was needed. Maybe for you, since its not obvious that Evie has it (at least not to us) when they book an appointment for you it would be beneficial to ask for a CT scan appointment as well. Plus it will save you having to drive there twice!

[EtMom]

Thanks guys, it is such a help being able to talk with all of you :) The waiting sucks. Still have not heard back from either the pedatrician or the Children's Medical Center in Hartford, CT. Will keep ya posted
Nancy, not today, but maybe tommorrow when the roads are better when snow melts more, I am going to try and make an apt for Evie at the pedatrician at Candlewood in New Milford (for an ear infection - and then when there ask them about her head - I would think since they have experienced maybe I will get a better, quicker, ?more accurate? response)
Joy*

[mrs j]

Hi Joy, sorry you haven't heard anything yet, it is very frustrating waiting for things to move, but just wanted to comment on Evie,s pics, i agree with everybody else there is a slight pinching around her temples, although her head is quite a good shape, there is a slight ridge but its just so hard to tell from pics, i would say if anything she would be more likely metopic than sagittal, but a ct scan would tell you more, good luck.xx

[EtMom]

a little bit off topic, but I called Candlewood Pedatrics, and was told they won't see Evie as she isn't a "patient" of their's. We can choose our provider and do not need a referal, I don't understand how they can say they won't see a child. What differance does it make?...they rather see you go to an ER for something simple. So annoyed right now. <end of vent, thank you :)>

[EmmaLacey]

Hi Joy,

I am so sorry that you haven't heard back. Try and call CCMC again and see what the hold up is. If you can try and talk to Kerri directly, I think I gave you her number. I hope they aren't waiting for a callback from your Ped. Yes, definetly go to Candlewood Valley - I know that when there was first an issue with Emma's head - mostly the ridge that they felt. They had a couple of doctor's come in and feel it to see what they thought. I see Dr. Beck, but they are all good. Dr. Hack and Dr. Able are also familiar with Emma's case. I was just there last week and they were all looking at her and looking at the pictures I brought so hopefully they will be "on the ball". Hopefully, they can give you the referral you need for CCMC. Let me know how it goes. Call me if you want or just post on here! Good luck!! THe waiting is the worst!!

[Janet]

Where do you live? I know here in Canada we need referals to see doctor's. When I was doing research when I found out Fiona was metopic, I called Sick Kids in Toronto and they said they needed a referal from our family doctor, which we got THANK GOD. But I agree you should be able to bring your child to any hospital if you feel comfortable with them.

[EmmaLacey]

Hi Janet. Just to clairfy, she is thinking of taking her daughter to a Pediatrician Practice here in New Milford, Connecticut. Its the same one that I go to with Emma. Since her pediatrician (in one town over) isn't returning anyones phone calls she is going to see a group of Doctors in New Milford for an ear infection and hopefully they can give her the referral after seeing Evie. I think that is why CCMC hasn't gotten back to her with an appointment - they can't get in touch with her Ped. My appointment was scheduled within 1 day so CCMC wouldn't have any problem getting the referral from this group of doctors.

[EmmaLacey]

Ooops! Sorry guys, I didn't read the latest post from Joy before I chimed in. Joy....is Candlewood Valley not taking new patients? Even though you are not a patient of theirs why can't you just call and say you would like to be? Since your Ped is moving her practice I would think you would be entitled to go somewhere else.??

[EmmaLacey]

Joy - I just called Candlewood Valley and asked if they were taking new patients at this time and they said Yes? I'm sure that maybe if you are only thinking of bringing Evie there for one appointment that is probably why they won't see you - if you are interested in bringing her there from now on they would probably get you in today if you think she has an ear infection. They usually block off a few appt's each day for people that call in and need to be seen that day. I've never had a problem getting in on short notice. I just tried to call you - no answer.

[EtMom]

I am sure it depends on the insurance on has in the US, but we have a kind where you can choose your provider and no referal, there are other types of health insurance I think called HMO which are different.
---------------
Your probably right about both, the reason for not getting a call back and about if you only want to go once, I like what you said though, say we want to switch. (I still don't get it why they wouldnt see someone once if you were not able to get in contact w/reg doctor....lol, maybe should move to Canda :)
--------------
In any event, I got a hold of someone at the dr.'s office in Kent and took Evie in today for an apt w/the pedatrician - she says it is just a cold.
She then says let me give you the info. for the ultrasound. She goes to her office but I can hear her making the call then,..so before that she had done nothing, great to know..sigh. So, she comes back with a prescription forum for Danbury Hospital radiology for a head ultrasound for closed fontells. OK, Now I think were going somewhere. Until I get home and call Danbury Hospital. The person who does Ultrasounds told me there must be a mistake, and asked several times which DR gave me this script, and said there would "be no point to doing a head ultrasound if the fontells are closed..you would need a step up which would either by an MRI or a CT Scan, but I do not do those,...so you need to get back with you doctor for clairifcation."...So I call back the pedatrician and get voicemail and leave a message. and here I wait again.

This doesn't seem right to me. If she doesnt know which test to order how can she interperate them. ???

[EmmaLacey]

OMG!! This is unbelievable!! Joy, I went to New Milford Hospital when Emma was 1 month old and had an XRay (or ultrasound) and they said to me "NO, she doesn't have craniosynostosis". Well, guess what they were wrong. The person at Danbury hospital is correct you need to have a CT or MRI in order to diagnose cranio. Your Pediatrician doesn't know what to do here. She needs to give you a referral to Connecitcut Children's Medical Center - Craniofacial Team. Has the hospital called you back yet?? I am assuming not. I wish there was something I could do for you.
????????? I am frustrated too as I want to see you get some answers. Why don't you consider changing doctors? If you called Candlewood Valley and said you would like to be a new patient I think you might get somewhere.

[Jenny]

Your doctor is crazy.. it wont be found on an ultrasound. An xray isnt going to do it either (long story short... er visit, thought healed bone from kayla's CVR was a fracture!). Definately need a CT scan.. I haven't heard of any other way to detect it. I hope you get some answers soon. I don't know what your doctor is going to say, but usually there is someone else that actually examines the tests and writes the report.. So.. as long as your doctor can read, all she has to do is read the report that comes back.

[EmmaLacey]

Yes, Jenny is correct - your pediatrician won't be reading anything - once you get your referral to CCMC your ped's part will be essentially finished. The CT scan will be done at CCMC and then the Neurosurgeon and other Drs from the team of "experts" in craniofacial disorders will review the scan and give you the diagnosis. Your pediatrician is giving you a referral to the wrong place.

There must be a breakdown in communication between the "experts" (the Craniofacial teams across the country) and the pediatricians who do the well check visits and give the referrals. You would think they should have a manual somewhere in their office that says......."at each well check baby visit first during the first year of life, check the baby's head for the existance of soft spots (fontanelles) and for any abnormal ridges or bumps along the surture lines. If soft spots are absent and/or ridges or bumps are present please refer child to the available hospitals in your area that have a Pediatric Neurosurgeon and/or Craniofacial Team." and then list those hospitals for each state.

Duhhhhhh!!! Do you guys agree with me there is definetly a problem with the way this currently works? I was soooo lucky that I didn't have any of these problems that I know so many of you have. It just makes an already scary, painful, terrifying, horrible time in your life worse!

[cheryl2]

Well, Clara wasn't diagnosed until 7 months because her ped in California thought she had some sort of plagio, which doesn't make much sense with coronal, since her forehead was recessed and she was sleeping on her back.

Hope you get some answers soon. I don't know much about the pediatricians around here. I live in Bethel, but I still take Clara to her pediatrician we had when we lived in Norwalk. I think of switching, but haven't yet.

Good luck!

[mrs j]

Joy, just wanted to say that im thinking of you, how bloody frustrating some docs are, unbelievable, i do hope you get somewhere soon.xx

[EtMom]

Got a call back today from CT Children's Med. Center, and they told me they were scheduling an apt. for March 11th in the morning to meet with the team. ---From the little contact I have had with them I am pleased with how fast they were able to get back to me. My pedatrician still has not gotten back to me. They said they had trouble getting in touch with her but would keep trying. (So, I am taking it they did not need a referal from her, if they haven't talked to her)
If the pedatrician does call back, maybe she will have a way to do testing beforehand that we could bring with us. The ppl on the phone from Hartford said they meet them first then determine what testing to do. It just seems like a long wait, as Evie will be very close to a year old at that apt. (Wish would be sooner, but I am so glad someone called me back I didn't want to push my (bad lol) luck.
Will keep ya posted, and thank you for listening to my rants in the mean time :)
Joy*

[melsch]

That's great news! So glad you have an appointment. It is a long time, but it's progress!

[Ally]

Good luck. I just found this site myself. My daughter is now 3 and a half years old, she had surgery a 7 months old. I was lucky, they found out that she had it when she was 3 days old (we were in the NICU). But on the plus side, as sceary as this is for you, you are lucky to have found a great support group. And it seems like most of the babies did and are doing well post surgery. I know that my daughter did very well, better than the docs. expected. So I hope you get a good surgeon and get the answers you need.

[mattricia]

Joy, reading the dates i'm wondering if this issue is a moot at this point, but in case it's not, i wanted to chime in...

I agree that you should definitely have the CT scan done before you meet w/ the surgical team. We were told several times, "BRING ANY SCANS WITH YOU TO THE APPOINTMENT". I only stress this to you, b/c as you are finding out, there are soooo many delays in the process already.

After our three month wait to see a neurologist, he arranged for our CT the next day! Then of course, we had to wait another month after that for the surgical consult. But at least the neurologist's office called us a couple of days after the CT scan was done to give us the results.

So we picked up those films a few days later and kept them for a month until we went to UM to meet w/ ns/ps... I kept fearing that i would forget to take them and we'd have to wait another month to get in again! I posted a sticky note on the door, and my husband put them in the car the day before. Haha... Can you tell there are memory issues in our house?

Keep us posted...

[EmmaLacey]

Hi Tricia,

The problem is that the place in Connecticut that does the CT scans (Connecticut Children's Medical Center) is the same place where her initial meeting is with the team. Since you need a referral to get the CT scan done I'm not sure how she will be able to do that before the March 11 meeting. Can you just walk into a hospital and ask for a CT scan on your child's head??

[mattricia]

Hi Nancy. I see what you're saying. That IS frustrating.

No, we definitely need a referral for a CT, which the neurologist ordered before we ever met w/ our surgical team.

[jennifer kichar]

Hi my name is Jenn and my son is metopic.We will also be meeting with Dr.Kanev on Feb 6th.We were told to bring our sons ct scan with us because it would save us another "trip".My son had his ct scan done at Waterbury hosp. without sedation.My pedi ordered the ct scan and we got in 2 days later.(the childrens hosp had a 2 week wait)Its amazing to me how little pedis seem to know about this.An ultrasound?To check for cranio?Im sorry you had to deal with that.My sons pedi actually ordered the ct scan wrong,they were looking for hemmoraging(sp?).Its scary.I hope everything works out at ccmc Ive heard from another mom on here that she really liked Dr.Kanev,and since Ive found more info out from moms than Drs it really made me feel better to hear that he did a great job with her daughter. Jenn

[mattricia]

Jenn, it is amazing how little the peds seem to know about it, considering that it's not super rare.

[jennifer kichar]

Especially since the head is something that is measured and felt at every visit!When I told my pedi that I knew what the ridge on my sons forehead was(after asking about it since birth)She said "dont worry Ive seen the same ridge twice before and it was worse then your sons and I never mentioned it to them".Guess what,my baby needs surgery.So theres atleast 2 patients out there with possible metopic and they have no clue---real nice.Did you have aproblem with your pedi also? Jenn

[mrs j]

Omg Jen, thats terrible, this really makes me so mad, how can this be missed by professionals, i would think something like this would be included in their training, especially our local docs, and docs at the hospitals where these babies are being born, how can they miss something so serious and dismiss so many mums as it being nothing to worry about, welcome to the boards by the way.x

[EmmaLacey]

Hi Jenn, That is great that you already have your CT scan. I wonder if Joy would be able to get a referral to Waterbury hospital and have the CT scan done before March 12th??? Her Pediatrician still hasn't given her any good information yet.

[EtMom]

Tricia, how did you get a referal to a nuerologist? Maybe that would be easier to get from my pedatrician.
I can not convince my pedatrician to order anything, ...I asked about ctscan or Mri (per danbury hospital after calling them with my script for an ultrasound they told me that is what I needed) and DR told me she doesn't want to subject her to the radiation if it isn't necessary and wants time to consider other options (yeah..uggh..lol so that was over a few weeks ago)
I'd imagine like you said, she probably would order the wrong test even if we got one lined up.
So, I feel we are stuck waiting for the experts at CCMC.
It already is hard waiting until March 11th, I am not looking forward to move of a wait for tests and then another appt. Wish I could get something done before hand.

Jen...Please let us know how your Dr. visit goes..I would be interested in hearing what you think of him :)

Boy, CT pedatricians don't seem very bright on this topic do they.

[mattricia]

Joy, my pediatrician referred us to the neurologist at our 2 month check-up. He'd sent us for an ultrasound at about five weeks. Then when that came back normal, showing no fluid (DUH, right?) at the 2 month visit, he referred us to the neurologist. The neurologist, after examining Jack and asking us a host of questions, suspected sagittal cranio. He referred us for the CT two days later.

This is maddening! I understand her point of view about the radiation. I'm one of those radiation-fearing people too, but she's missing the big picture. I can't remember if you mentioned craniosynostosis to her. If so, what was her reply?

Is there any way you can see another doctor at your peds practice? Make up another reason to get back in there. ;) There's no reason you should have to stay with a doctor who's not meeting your child's needs.

Keep us posted!!!

[EtMom]

Tricia,
Hmmm, that sounds like what my pedatricians "game plan" would be...except when I got the script for ultrasound and called for apt they stopped me and said my ped. was wrong to order this for what she suspects is wrong and to talk with her. I did, and she said she has to think about what to do now, still havent heard back an answer. She is the only Doctor in the whole town we live in.

She was the one to bring it up to me at the 6 month apt, but she did not use the word crainosystosis. She said, she cant feel the soft spots, but lets watch it, cause that makes for not so smart babies. And they require surgery to correct it. Then 3 months or so later, no still cant feel them, go get u/s...and u know the rest.

So, I do get the idea she knows what it is, but she doesn't know how to proceed because she has not seen it before.

Did your dr refer to a nuerologist because of the soft spots? or something else?

I have considered going to another practive, but they only take you if you become an official patient there, and 2 things worry me by doing that. #1 i have read other moms say the other Dr thinks there is no problem -so that makes me want to just wait for the experts and if they say nothing is wrong then I feel comfortable with that, instead of a doubt. and #2 the next town over is probably 30+ mins away one way and I just worry that is too far to go in sick time situations (at that point we would be right near the hospital anyways).

[mattricia]

Yeah, he referred us b/c of 1) almost no soft spot, 2) head shape/size (it wasn't so long/narrow yet then though, which is the big indicator of sagittal), and 3) strange ridges across the top/back. He told me to make sure to bring my husband and 4 year old, so the neuro could rule out familial things, as far as shape. (They both have big melons, but not the narrowness.) The more i think about it, the more it seems that he knows very little about cranio.

As far as the distance goes, i understand your hesitancy to move to a practice so much further. We live in a small town and we drive about 30 minutes to our ped, b/c we have no other options.

Could you keep your surgical consult, even if you tried a new ped, or would you have to have a referral from the new doc? I seem to recall you saying that you don't have an HMO, so you might be able to keep it even if you see a new doc.

It's a tough call. But i'd want to try to get the ball rolling instead of waiting almost two months and then who knows how much longer to get the CT and another appt. with them. One of the great benefits of this site, in addition to the comfort of the friendships with other cranio moms, but also getting the second-hand expertise of all their doctors.

What if you mention to her the process that most of the other peds follow? If you can't speak to her on the phone, leave a detailed message w/ her nurse. If she really doesn't know about cranio, she might appreciate the information. Then again, it might irritate her, but who cares? Your priority is your baby, not the doctor's feelings. I hate to think about a delay in care, b/c of the doctor's inexperience, when a suggestion from you might expedite the process.

[Holly]

Maybe you ban be a patient at both dr.'s offices? Just use your current one for emergencies. I dont understand peds either. I took Tyler for his 2 month well baby checkup and I told her I thought his head was a little funny but he didnt have the ridge and still had a small soft spot on top. But she explanined to me what craniosynotosis was and said we should do a CT scan which was for 2 days later. And it came back positive. Then 2 years later I had Jakob and in the hospital I told the nurses his head looks like he has craniosynotosis. My midwife agreed so she told the ped on call to do an xray. So they did and the radilogist said no he doesnt have it. Meanwhile within the next week we seen about 3 different peds because he had jaundice and I told them all his head wasnt right and they told me I was probabley just paranoid because my older son has it. So when Jakob was 2 weeks old I made a B/S appt. with our regular ped I think I said his belly button cord smelled just because I wnated her to see him because she diagnosed tyler so I knew she knew about cranio. Well I was wrong she said that his head looked like tylers did because they both came out sunnyside up. And she pressed on the back of his head and could feel the plates move. I guess maybe she was going by the xray. So I figured I would push to much because ty's didnt get diagnosed till 2m's and they did surgery at 6ms so i didnt push it. till his 2 month check up and we went in and I told her his head still wasnt right and so she said thats to a CT Scan just to make sure.And sure enough he had it. sorry this had gotten so long but my point of this is Ped's can be fraustrating and uneduacted Also dont settle for an Xray you need a CT Scan.

[EmmaLacey]

Absolutely, an XRay doesn't always show it as in the case with Emma, she had one at 4 weeks and it didn't show up.

[EtMom]

Perhaps one of the weirest updates...we went in for a cold to the pedatrician today. She feels her head, and says oh I can feel a small soft spot, and keeps checking, says yup so we don't need to do anything, I can also feel the back one.
Hmmmm
That seems a little weird, I am happy if that is true. I don't understand how she couldnt feel them before but they would show up again.
I wonder if this means CT Children's Medical Center will call and cancel or if I should cancel it.

[xl1200c]

I think that you've come so far, you might just as well see it through by getting the opinion of experts who deal with this all the time. I surely hope that the news is just as good from them, and hearing it confirmed would be even better. That's just my two cents...

[Elizabeth]

I'm with Cathy...I'd make sure to get all the info and opinions possible. I wouldn't settle for, "oh, nevermind, we were wrong. Everything's ok after all."

I'd go with your gut, though. Do YOU think everything is ok??

[EtMom]

We went to CCMC for our visit w/Dr Kanev...and everything is okay!! :)

I am so glad we went and I feel better equipped to ask questions and push for referals now. CCMC and Dr. Kanev were wonderful.

It was pretty quick. We got there and filled out the paperwork. Then we went into the office and meet with the DR. He was very nice. He asked us a few quick questions about her development (when did she sit, crawl) and if she was on any medicine. He asked if we had any xrays done and when the ped. noticed it. (@6 months) He measured and felt her head. and gave her something to hold and shined a light in her eyes and moved her arm.
He then told us he didn't think we had anything to worry about. Her head was growing, and she showed no signs of delay. So, even though he too could not feel the soft spot, he did think we need xrays at all. He said they can close early but it is not impacting other things and the "slight metopic ridging" will start to clear up as she grows up and even then as she gets more hair it will cover it. After meeting him I feel like if there was something wrong I would be glad he was the Dr. because he was very geunine and kind.
They did take some (regular camera) pictures for her records and then we were on our way.

Good news :) Thank you all for your support with this it is so much appreciated!

[melsch]

That's great news! Congratulations! I'm glad you went and got all the answers and most of all that you are in the 'clear'!

[EmmaLacey]

Joy, that is so great!! What peace of mind you must feel now. I'm glad you had a good experience. Aren't they just so nice there?

[Wyatt's Mom]

YAY! That is awesome news. I bet you are so happy. I'm glad the doctor was good to you and everything worked out. :o)