Metopic w/small head size-anyone else experienced this?

[amyewine]

Hi,

I found this forum a few weeks ago after my daughter's physician told me that he suspected she had cranio. Fast forward to this week: we've seen an NS and CFS (Dr. Kahn at Lucile Packard Children's Hospital). They said that her metopic suture has definitely fused but that it is mild enough that they don't recommend surgery. However, she also has a very small head (1%). Neither seemed concerned about this but my family dr. seems concerned enough that he has been asking if we want a 2nd opinion or would like to see a neurologist. Just wondering if any one else had a mild metopic baby that also had a smaller than normal head?

As a side note, I have a pretty small head for my height. I'm in the 3rd percentile and I've never had any issues developmentally.

I thought we had gotten a positive diagnosis but now I'm worried all over again!

[AJ's Mommy]

Hi! I don't have any advice for you I just wanted to say hello. Follow your mommy instincts though. :)

[Mindy]

I have a mild metopic child that has remained in the 30% for size. I don't think its the overall size (small or large) that matters, but rather whether she stays on the same curve. You wouldn't want to see her consistently declining in percentiles.

[owen's momma]

Hi! I took a peek at the pics in your album. Lily is a cutie! The last pic (birds-eye) showed what looks like a nice, broad forehead, so she may not need any treatment. It may not matter that her head is small percentile-wise, since your head is too. But you should probably keep an eye on her head growth, and it never hurts to get another opinion if you aren't satisfied with the first one.

[amyewine]

Unfortunately, Lily has dropped in percentiles as her head has grown. She was in the 25th percentile at birth and at almost 6 months is down to 1%. The metopic is mild and from what I've read, doesn't usually cause this much of a drop in head growth. I'm beginning to think the cranio may just be a symptom of another underlying cause. We go in Tuesday for a blood work up (checking for CMV and several other infections that could cause microcephaly) and am waiting to get in with a neurologist. Sigh. I just really want some kind of explanation.

So far she has no developmental delays, but I'd like to know if she has a condition that could cause her to start having delays. At least if we know, we can try to help her in every way that we can.

[G2sMama]

I can't stress this enough: follow your Mama-instincts! If something doesn't sit well with you, press onward until it does. I can tell you love her dearly and want to do the best for her. Follow that through. Get the answers you both need. Part of it may very well be hereditary (if your head is in the lower percentiles as well), and you can get that verified. Can I ask how her height/weight have changed percentile-wise?

She is absolutely adorable!! I :adore babies with chubby cheeks and arm-rolls.

[amyewine]

Thanks Dawn! And thanks to everyone for the support. One minute I feel like everything is fine, and the next I feel like we absolutely need to do more testing. It has been quite a roller coaster! But I think we'll at least get a second opinion and see a neurologist just to cover our bases.

[Jess33]

I completely understand the rollar coaster. I am always going back and forth. my son has mild cranio.. and I will look at him one day and think that his head looks better.. then it looks worse.. then he will start doing something strange.. (currently it's rocking, before that head banging) and wonder if it has to do with cranio.

I have the oppisite problem. His head was in the 45% now it's in the 94%.. the ped wants to remeasure him at his 15 month appt. if he is again off the curve, we go back to the neuro. it's nerve racking worrying! The best advice i can give you is follow you instincts and try and remain positive.

It's great that there are so many awesome people here that understand what we are going through to help keep things grounded:heartbeat




Thanks Dawn! And thanks to everyone for the support. One minute I feel like everything is fine, and the next I feel like we absolutely need to do more testing. It has been quite a roller coaster! But I think we'll at least get a second opinion and see a neurologist just to cover our bases.

[BellasMom]

Like several other have said, go or a 2nd or 3rd opinion. There is Dr. Gupta at UCSF and Dr. Sun at Children's Hospital Oakland. When we made a decision we saw several doctors before chosing the one we went to.

Good luck - it is nervewracking - you are not alone!

[Jill]

Hi! I'm brand new to this, just signed up today and haven't even written my introduction. My daughter was just diagnosed today with metopic. We had ourselves convinced it would be mild and wouldn't need surgery. But the doctor said he sees slight narrowing of her forehead and slight widening of the back of her head. He ordered a CT scan but said he is almost positive she will need surgery.

I was surprised, shocked, and scared but DH and I think we would rather do something now instead of running into potential problems in the future. Claire is 8 months old this week. She has not shown any developmental delays and has met all her milestones. Her head was 3% at birth and then climbed, something like 5%, 10%, 15%, 30%, but then this last time was back at 3%. So that concerns me too. If I were you, especially at 1%, I would get another opinion. Our doctor told us the metopic and small head go hand in hand. My biggest concern for Claire is that there will always be room for her brain to grow properly.

[JIC0930]

My daughter has mild-moderate metopic and her head has always been small too but it has stayed in the 9th-12th percentile her whole life so I was told not to be concerned. Also I have a small head, I cant wear adult hats, so I figure she just takes after me.

[JoesMami]

Jill... Im new here too.. My son was just diagnesed with Mild Metopic a few days ago as well. We are just waiting to get into see the Neurosurgeon and get our CT scans. But my son, JOsef, has ridging on his forhead and his softspot is almost completely closed as since he is only 4 months and it was almost gone at 3 months we know that this is NOT normal. He has slight pinching at his temples and asymetry of his head.. wider at the back narrow at the forhead and uneven on the sides.. Its not super obvious to other people i have really started noticing it in the last month. Not that I want surgery but i think it is going to be the best thing for him... or i will be constantly worring about his brain growth! He has a small head as well... His height and weight are in the 75-90th percentile and his head is only in the 25th.. have you had the CT scan done yet???

[Lori999]

amyewine - Our daughter has a very small head (2 years old and it is only 43 cm and that grew 1 cm in a year), so that puts her under the chart. She is in the 10-15% for weight and length. She had a CT in December 2011 which was normal and another one June 2012 which revelaed her sagittal suture is fully fused and her coronal one is almost fused. We are also seeking genetic testing for the same thing you are. It is very frustrating. She is mildly delayed and she receives Speech and OT. We just were seen by a NS and he did not recommend surgery since her case is so mild. But we are seeking a second opinion to be sure. If it is closed how can the brain grow, right? Good luck with your tests. I hope you find the answers you are looking for. BTW your daughter is beautiful!