Metopic Newbie From Ohio

[racinglady]

Hello all,

My son, Drake, is 7 months old and has been diagnosed with Metopic Synostosis.

We are awaiting a surgery date, though expect it to be fairly soon...Doc just has to tie up some loose ends etc.

I am interested in hearing from other cranio moms...particularly metopic.

A few oddities I have noticed about Drake and wonder if anyone else has experienced similar...in no particular order of significance.

1) He was much smaller than expected..only 5lbs 12oz, with a peculiar small head. Our other son has quite a noggin on him...so the small head size was/is shocking. It is not considered microcephalic b/c it grows on the curve, but the curve is something like the 10th percentile give or take. Wondering if the small head is common for Metopics?

2) My first pregnancy with my other son was one of chaos...preterm labor and lots of intervention. So, for this child, we took "preventative" measures. I had a cerclage (cervical stitch) placed at 13 weeks and had progesterone P-17 (?) shots weekly from 20-some-odd-weeks on. Anyone out there with similar pregnancy "complications" resulting in cranio?

3) On account of ultrasounds every 2 weeks, we knew he was head down from VERY EARLY on. He was also wedged over on the right side of my uterus...well, at least it felt like that. He never seemed to move on the left side of my uterus. Anyone else with similar experience?

4) He has had the sound of congestion (I call it "snurggles") from day one. Sort of a raspy rough breathing sound, with or without actual mucus. It is always present and no docs have given any definative reasoning...but, my very unprofessional and unqualified hypothesis is that on account of the midline suture closing...there is some kind of nasal obstruction that is not necessarily easy to be seen on films. Anyone else?

5) His hair pattern and texture is different where it covers the suture. Right front and center, his hair is much thicker than the rest of his head (where the suture is) and actually grows longer there...curling on the forehead in sort of a cupie doll type of "do". Wondering if anyone else noticed this phenomenon?

6) He grabs at his eyes and head...and has even as a very small baby. After testing to rule out eye issues and no obvious correlation to sleepiness etc., it is projected that this behavior is response to pain. However, that theory occasionally gets "dismissed" by some of the doctors he sees, as they say that babies don't respond that way to pain...they just cry. I believe it is DEFINITELY related to the cranio and wondered if anyone else had any insight?

7) He has always been a very peaceful baby for the most part and when we brought him home and for the months to follow...he was such a good sleeper and so mellow that we almost felt something was wrong. Well, now, though he is still good for sleeping a stretch at night from about 12:00am-5:00am....all other "naps" are very short. 20mins...if we are really lucky 30-35. It's as though his sleep is interrupted. Anyone else?

8) On examination for the cranio...the neurosurgeon felt a lump in the rear of Drake's head. The lump had been there and was growing, but I was told it was an "occipital lymph node". The neuro wasn't so sure, so ordered an MRI. The MRI showed really nothing...so it was just called a "fat mass" or something of that nature and the pediatrician still believes it is a lymph node. All of that being said...the lymph (or mass) has been there ALWAYS...anyone else with odd masses or enlarged nodes with cranio kids?

9) When the CT and MRI scans came back, the doc saw an issue with Drake's ear. He wasn't sure what it was...believed it might be "chronic inflamation/infection" ...the bones weren't very clear and the cavity "blurry"...so said he wasn't sure and referred me to ENT (willl be 2 months before he can see me!) Anyway...the baby has no signs of infection or irritation...some wax drainage out of both ears, but absolutely nothing that would indicate an infection etc. He'd had his ears looked in a million times by millions of doctors and no one EVER saw anything abnormal. Even now, the ped says that all he can really see with the "ear thingy scope"...is some additional swelling in that ear, but couldnt' see much more. Sooo...since the two ears are VERY different on CT scan yet it is not obvious from basic exam, I was simply wondering if anyone else had experienced something similar with their cranio kids?

10) And finally...at least for now, because I have lots of observations/questions....

Drake is only 7 months and shows an extreme left side dominance. He has been to a neurologist etc. and they don't see any physical reason for it nor do they suspect any "dystrophies" or "sclerosis" at this time. However, all agree that such an extreme preference for his left hand, left foot etc. is rare at such a young age. Anyone else with cranio kids who seemed dominated by one side earlier than the norm?

I'm glad I found this site and look forward to hearing from y'all.

Lauren

[Jennifer]

Welcome to the site! I'm glad you've found us. I don't have answers to all of your questions, but I'll comment on some...Also, I have a coronal baby, not metopic...but I'll comment anyways

3) Emily was also down pretty early. She seemed to stay to one side--my right. That being said, my first daughter also was wedged down- no cranio.

5) My middle daughter had hair like you described. She had a ton in one 'line'-- long and much thicker- where the rest was much thinner and shorter. (no cranio)

6) I didn't experience the head/eye grabbing, but have heard of other cranio kids that have. I would totally believe that it was a pain thing that he is reacting too. Pain was an interesting discussion before our surgery. Most seemed to think she wasn't really in pain, just a fussy baby, but after surgery- she was no longer fussy---I assume it was the cranio.


I know that wasn't all your questions, but those are the only ones I had 'experience' with. Again- I'm glad you found us and I hope we'll help!

[Janet]

Welcome to cranio kids lauren,

My daughter Fiona is metopic, she has a moderate case. She's had a CT scan and an eye test..there is no ICP so far. She was born by c-section because she was breeched, the OB said that she had a funny shapped head but it would become normal in a couple of weeks...little did we know!!!
She was an extreemly fussy baby, she was colic. When we met the N/S they asked if she was fussy, if she snored or if she vomited (more then the regular spit up) all signs of ICP. FIona did snore for a while but she grew out of it.
We recently found out after her CT scan that she has a cyst over her ear on her skull which they are going to remove at the same time as the surgery.
As for sleeping...I don't remember what that is!!! Fiona has 2 naps a day for 45 minutes but she wakes up every 3-4 hours for a bottle still...she's 9 months old!!! It drives me nuts!!!
She has met every milestone, she crawled at 6-1/2 months, she'll be walking by next month, she'll stand not holding onto anything for 20 seconds at a time, she's already started to climb anything she can...she's very active (way more then my son who doesn't have craino at the same age) she is also bigger then my son at this age too. I think all cranio babies are different.
BTW she never grabs her head or her eyes, her hair is normal. Here is a picture of her head from above:



Keep us updated...Hope I helped a bit.

[amanda0502]

My daughter amanda has metopic cranio and is having surgery september 24th at chop. The one major thing that i notice that she does is pull her hair and hold her head like she is in pain. When she is doing this she is also screaming. She is also low weight as you were saying. She is small in height and her head is also small. She is on the curve but the bottom of it like the 3 % tile. She was born with very low platelets and required three tranfusions with ten days. she also had bad reflux up until recently. I dont know if any of this has to do with cranio but this is my mandi. I also have a question what is icp does that have to do with pressure??

[Jennifer]

ICP = Inter Cranial Pressure (or something to that effect).

[amommy22]

Hey ladies!! My Trey has been diagnosed with metopic and his NS doesnt feel we should operate since he doesnt have any ICP (intercranial pressure), his eyes are not close enough together that is should cause a problem in the future and he is already 15 months. Lauren .. in regards to number 1: Trey was considered big (6 lbs 2 oz) since he was born at 34 wks. Number 4: He did have some congestion sounds now that you mention it ... but he was in the NICU with respiratory problems after birth so the doctors chalk it up to that. Number 6, about the eye/head grabbing. My Trey did that for a while ... i gave him tylenol when he would because it seemed to me like he was in pain and that seemed to sooth him a little. Fortunately, he rarely does it now, and the NS has assured me he isnt in pain (no pressure) based on the x-ray. (However, i must add that i dont agree with them that since you cant see pressure there is DEFINATLY no pain... All these cases are fixed so early in life our children cant tell us they are in pain, so just because it doesnt show up on a test doesnt mean it doesnt exist, maybe its some discomfort that is not measurable by current medical procedures, but that is just my feeling on it, no medical backing behind it.) Sorry i couldnt be of more help ... unfortunatly none of us have the exact same experience nor will our doctors all tell us all the same thing, thus making this journey so much harder!

Welcome to the group!!

[jenniferh]

My daughter, Addie, just recently had surgery for sagittal cranio, but I found it interesting and wanted to comment on a few of your points.

3. Addie seemed to ALWAYS be on the right side. I would feel her move often, but not like I have heard other mother's talk about. I rarely, if ever, felt her on my left side. (I thought this was interesting that other cranio moms have experienced this, but then again, I'm sure non-cranio moms have too. Who knows?)

6. Addie always grabs at her head/face/ears. I'm not sure if it's pain related, as she still does it now post-surgery, but her hands seem to always make their way towards her face.

Anywho, welcome Amanda. I wish you all the best in getting the answers to all your questions. You are at a great place for it. I can't help but ask where you are from as I read the "ya'll" since I'm from the south.

[marisajo]

Hi Lauren...I'm Marisa - a metopic "old-timer" from Ohio. Zack had surgery @ Cincinnati Children's in June of 2004. Where will Drake have his surgery? Seems like there are lots of us in OH, especially metopic, for whatever reason. I'll do my best to answer your questions.

1) Zack was big - 9lbs 5 oz at 38 weeks. His head was also predicted to be very big by ultrasound...I can't even tell you how many I had because they were worried about head size. Finally they decided it was a fluke because of his position they couldn't get a good measurement. They told me I was going to give birth to Anthony Munoz. I don't remember actual percentiles...he started out fairly normal and then just kept dropping until they did the surgery and he did a huge jump. Now we're back to fairly normal.

2) My pregnancy with Zack was complicated. I had a miscarriage before him, then infertility, followed by Clomid, then progesterone for the first trimester. Pre-term labor around 26 weeks led to a Terbutalene shot and then pills for the next month. I finally went on to deliver him @ 38 weeks.

3) Zack was breech from at least 20 weeks on...every ultrasound, every appt. His head was stuck under my ribs, which led to a more stressful c-section than usual. I was glad my O.B. had just run the Iron Man triathalon...he needed strength to get that kid out!

4) Zack had a fair amount of congestion and random vomiting pre-op. The congestion was typically with an illness, though. The vomiting was totally random. All seemed better post-op.

5) No funky hair on Zack pre-op...almost no hair at all.

6) No head-grabbing here. Just this funky double-fisted nose rubbing that I swear is genetic beacuse my brother STILL does it.

7) Zack has always been mellow, but has also always been a HORRIBLE sleeper. (As a matter of fact, I found him on the couch AGAIN this morning when I headed for work...uugh!)

8) No experience here.

9) Zack's ears have been fine. Two months seems like a long time for the ENT. My ped called for us when we were having issues with my youngest's hearing and we got in the following week. I wonder if the ns's office would put in a call for you?

10) My youngest displayed a very early preference for left hand too. We've been predicting for a long time that he'll be a southpaw. I never noticed with the other two, who seem to now be right-handed. I wonder if we just notice it more because it's different.

Hope that helps! Let me know if I can do anything to get you in touch with other metopic moms in OH. I think I know someone who had surgery at all the major hospitals if you want to hear about their experiences at a specific facility. We even had a fabulous get-together in Columbus last summer...I'm still bummed that hectic schedules kept us from putting one together this year! Sending best wishes to you and Drake!

[racinglady]

Hey gals...

Thanks for the replies!

Obviously, I'm smart enough to know that all of my "observations" likely have nothing to do with the Cranio, but I am always interested in exploring possibilities.

If I came off as neurotic, I didn't mean to...

Drake will have surgery at Dayton Childrens Medical Center. I had considered using Cincinnati (that is where I am from and grew up...and I bet we are the only people who know who Anthony Munoz is....we must be close in age!), but will likely just use Dayton as it is closer to us (Greenville is NW of Dayton by about an hour or so).

I will, however, say that if the NS doesn't get off his bottom and at least call me and tell me what is going on....I will be looking elsewhere. The problem is that tick tick tick...the clock is ticking and starting this process over would seemingly make Drake like 17 years old before we could get this done.

I would be glad to hear of any stories of Moms you may know from Dayton area.....

To the poster who mentioned the cyst....I find that interesting. Makes me wonder...

In regards to the left side dominance, I agree that there is a possibility that it might just be because it is "different"...BUT this is quite profound. He would literally reach accross his body and get all contorted just to use his left hand. Then, his mean ol' mama held his left hand a whole whole lot, forcing him to use his right...so now it is just dominant...not exclusive.

Thanks again for the replies. I'm glad to hear from everyone. I am sort of hyper by nature so I try to get as much info as humanely possible on everything...much less something as important as this.

L

[marisajo]

LOL...You're in the right crowd. This whole process makes us all borderline neurotic at times. In the beginning there are sooo many questions and seemingly very few answers.

Unfortunately, I don't know anyone that used Dayton. Most I know used either Cincinnati or Rainbow Babies in Cleveland. Some used Columbus, but one of the ns there doesn't use a plastic surgeon, so that was a turn-off for many of the metopic/coronal moms where the ps typically plays a crucial role in the facial reconstruction. I believe there is a ns there now who does use a plastic surgeon...it just seems like most teams do for the frontal sutures.

Cincinnati has a good team. I know a couple people got Dr. Crone's email from the website (cincinnatichildrens.org) and got in right away. Just a thought if you're thinking a second opinion would be good. Wondering too if you've seen an opthamologist? I doubt any of the "left side" issues have to do with vision, but that is one complication that plagues many of our cranio kiddos.

Uughh..gotta get back to work. I'm sure we'll chat more!