Help me PS Moms!! PLEASE!

[miraclesrule]

We are undergoing evaluation to rule out craniosynostosis and trigonocephaly. I know this sounds like a crazy request, but can you pu-leeze take a picture of your child's head from the top...like this one...so I can get an idea of whether or not Miss I's head is "not normal", bearing in mind that every kid had a slightly different head shape. Google images is not helping me much. If your child is close to 1-yr old give or take a few months, I would be ever so grateful if I had some real life comparisons. Here's Miss I's head shot.

 

[FrekeChild]

I can try later Miracles. But the problem is that A's head is not terribly well shaped because of her plagiocephaly, so I'm afraid it won't be much help. Plus she squirms a lot....

 

[miraclesrule]

I hear ya Freke. I'm sure my daughter was standing over Miss I while she was in the highchair in order to get this shot. It gives a whole new meaning to "head shot".

Thanks for the response. Now hurry up and get your booty to Cali. Bring your sunglasses. I can't remember if that was on your list.

 

[FrekeChild]

Not a good pic, but it's the best I could do right now...

 

[miraclesrule]

She has a bee-u-tee-ful head!! I can't wait until I get to play with her and get her belly laughing.
Thank you so much for taking the time to do this for me. I puffy heart you!

 

[Krissie]

Twin A has torticollis and right-sided plagio, and is in a Starband corrective helmet. Pics wouldn't help, but he did go through a neuro consult to rule out cranio. Let me know if you have any questions.

 

[miraclesrule]

Aww Krissie, I hope Twin A is on his way to a speedy recovery. Miss I has a metopic ridge. Her CT is scheduled for Tuesday. Then the neuro. I think she is going to be a non-surgical mild case, but I really don't have enough pictures to judge a normal noggin from a birds eye view. All the pictures we have seen are those severe, very obvious cases that were apparent at birth and/or within the first few months of birth. That isn't the situation with us. We detected the palpable ridge and took her to the pediatrician at 12 months. I am the most impatient person I know...so it's difficult for me to play the waiting game without doing a boatload of research. This is my attempt to restrain myself from walking around in public trying to check out every kids head and looking like a psycho chick.

 

[Skippy123]

let me see if I can take a picture for you. I will try this weekend

 

[miraclesrule]

Thank you Skippy!! ::::insert gigantic squishy hug emoticon here:::::

I am leaving the office now to go see them. We are going to a birthday party for a 3-yr old...lord help those kids. Me and my daughter will be feeling every toddler's noggin tonight.

 

[Skippy123]

Miracles, here is Miles; I will see if I can get one of Evan soon. hugs and prayers

 

[dreamer_dachsie]

Ryder is 13 mo, I'll take a photo tomorrow

But I can tell you right now his head, and my other son's head, looked a lot like your grand daughter's head. Both my sons have massive craniums and really big bulgy foreheads. Its all the brains

 

[packrat]

Mine are quite a bit older so wouldn't be much help. I had quite a time trying to sound those words out in my head tho, boy..and now I'm nosy and have to google what they are!

 

[miraclesrule]

Miles has a gorgeous cranium, Skippy!! Thanks for taking the time.

Dreamer, I can't wait to see Ryder's noggin! Braniacs, that's what these kids are going to be!

PackRat, trust me, it's a no bueno dx if it requires surgery. I think it's clear from most other craniums that Miss I's is more egg shaped. However, although I haven't been verified and able to post pictures on the CranioKids forum yet in order to get feedback, I was able to post on two of their FB groups. I received feedback from one gal this morning who coincidentally lives in our city offering her opinion that Miss I was likely mild and couldn't imagine a specialist recommending surgery especially since it wasn't more obvious as an infant. Even as I type this I saw another message pop up from another "Metopic Mom" who agrees that Miss I is most likely mild and non surgical.

I'll take that reassurance anyday. I am already a little more relaxed and with this news, I just know that my daughter will be too. She is still worried about sedating for the CT scan on Tuesday, but fingers crossed and lots of dust that the specialist opines mild case, no need to cut her skull into pieces and put it back together with dissolvable screws and plates.

 

[Blenheim]

Miracles, I really hope that everything's okay with your granddaughter. How stressful.

Here's another high chair picture, of the top of Mr Edward's head. He's 10.5 months now. (Where has the time gone?)

Thinking of you guys.

 

[miraclesrule]

Thank you Blenheim!! Mr Edward has the most beautiful slightly egg shaped head too!! Dude! Look at his thick head of hair!! Only ten months old with all that hair. He's perfect!!

The hair gene(ie) doesn't live in my DNA. Fortunately my son-in-law has great hair genes so my 1st granddaughter has thick hair, but Miss I looks like she is going take after me and her Momma.

It has been a stressful and scary week, but ever since I discovered more and more information from the parents who have been down this road and have received a lot of feedback from different photos taken at different angles...I feel that we are in the clear from a surgical standpoint. Of course, we can't be certain until the specialist examines her, but I am a lot more optimistic today.

 

[dreamer_dachsie]

Here you go Miracles. I wet his hair and oriented it like your picture. As you can see his head is egg-ish shaped. But I feel no ridge on his forehead and my other son has the same shape head so I think this is just normal for our family. I can see that Miss I's forhead might be a teensy bit narrower? But not much. I read up on this stuff after you posted because I noticed how similar our kids' heads looked, and though I don't know much, I can't imagine Miss I needing surgery based on how mildly different her head looks from my kids' heads. Finger's crossed.

 

[miraclesrule]

Dreamer, that is one beautiful head!!

I am feeling more and more relieved by the minute. At the same time, I am a little disturbed at the fact that the pediatrician has put the cart before the horse by ordering a CT scan prior to a consult. Every cranio parent said that is backwards, and after having looked at several photos of Ivy they suggest we see the specialist first as they are convinced she will be non surgical and no CT will be necessary. My daughter is leaning toward postponing the CT scan until after the specialist consult. I tell ya, the Internet is a beautiful thing, and special communities are the diamond in the rough! I will cut the pediatrician some slack because it is a rare condition, and I don't want any of our resident PS pediatricians to flame me.

It is been one helluva week. Ugh. Fingers crossed!!

 

[dreamer_dachsie]

I would definitely not put my kid through a CT scan -- doesn't it involve anesthesia? -- without a consult from an expert doctor!

 

[pancake]

I'm one of the "resident PS pediatricians" I can understand why you feel it's overkill or out of order to do the CT now, but I think it's not entirely unreasonable, although not all clinicians would do it that way (including me). I assume the rationale is that because CT is the definitive investigation to exclude craniosynostosis, the ped thinks that it may as well be done in advance so that the neurosurgeon will have complete information at hand at the first appointment, thus potentially saving time if they would have otherwise only then requested the scan (and then you would have had to have another follow-up appointment, thus longer wait, more anxiety).

A CT is pretty quick (about 5 minutes for a head CT) so most of the time an anaesthetic isn't required if the centre is used to doing CTs on small children, and if it's timed well.

Good luck for your grand-daughter, miraclesrule - I agree it is unlikely to be a problem, but good to get it checked out sooner rather than later. It will put everyone's mind at rest too, hopefully

 

[Skippy123]

Miracles Evan has a ridge on his forehead; they monitored it and said it closed? I will feels his tomorrow and take a picture. I will keep you all in my thoughts and prayers all is okay; I am sorry Miss I has to be sedated but I hope it will all be okay. hugs

 

[ponder]

Miracles,

I think egg-ish is normal, and Ms. I does look a teensy bit narrower than the pics everyone has posted but everyone mainly has boys and aren't boys a little broader in the forehead to begin with? I just looked at DS (6 months) and he is definitely oval, not so eggish, but I think DD#1 (3 yrs) looks alot like Ms. I. I'm not so sure about my DD#2 (22 months) because my general impression is that her face and head are much more round. I'll check for sure in the AM.

 

[miraclesrule]

Dreamer: Yes, it involves sedation, even though our Children's Hospital has a very new and special CT machine that can scan the head in less than three minutes. A family can attempt to put the child to sleep, but the minute they lay the child on the table, they usually wake up. This is because they have to lay them on their back, mobilize their head in a contraption that requires a huge Velcro strap, put weighted sand bags on the child's limb so they don't move, wrap them all up in x-ray protective blankets, etc...REALLY, what kid isn't going to wake up during that process? Husbands may sleep through that process, but not a kid. Hence, the need for sedation. My daughter is breastfeeding and the fact that she can't feed the baby in the event she may need sedation, means that it will be a struggle for both of them to get to "sleep". I can get her to sleep in less than five minutes, but I won't be able to get to the hospital until two hours after my daughter has to arrive for her to attempt the sleep process.

Pancake: I totally respect your professional opinion and understand the thought process behind each approach. However, I respectfully disagree that a CT scan is the definitive test for determining whether cranio exists. In this particular condition, almost all diagnoses are made by the specialist on physical exam. In the cases where the specialist believes surgery is warranted, that is when they typically order a CT scan. I have worked in medical management for my entire 30-yr career, but not with infants. Actually, at present, I manage the medical for advanced age individuals, so I can appreciate your assessment that having definitive studies in hand prior to a specialist consult can be extremely proactive and desirable. However, in my research with this condition, it is clear that a CT scan is not necessary unless surgery is being considered. Therefore, I don't feel it is prudent to assume the risks of sedation if the specialist will say "Nope, she is fine. No surgery required". My personal test is this "if an adverse reaction occurred as a result of the sedation/CT, and then I discovered that I didn't even need it, could I live with myself"? If the answer is no, and the situation is not life threatening, I can live with a little anxiety until I can get in to see the specialist. In fact, I have discovered that the country's leading expert in this condition and surgery will respond to any email or inquiry and assess photos and reassure and/or confirm almost immediately. Therefore, after careful consideration of all available information, it is my opinion that we can safely postpone the CT scan until we have an expert opinion on physical exam. I do value and appreciate your input. It's great to have so many wonderful resources in the PS community.

Skippy, that is very interesting about Evan. Apparently it is somewhat common that infants display a metopic ridge, but mild ones often resolve on their own as the child ages. On the other hand, severe ridge with diagnosed cranio and trig doesn't Just resolve on it's own without surgical intervention...and many times, subsequent revisions. I predict my daughter will postpone the CT, but I guess we will find out by 10:30 a.m. on Tuesday.

Skippy

 

[ponder]

Miracles, both my DD's look like Ms. I, eggish, more narrow in the front, but no descernable ridge. They both have too much hair to make a pic helpful, but I will see what it looks like in the tub tonight. Looking more closely DS has a ridge extending from his soft spot about an inch down to his hair line. Cant really see it, but I can feel it. Its very similar to the ridges he had at birth that extended bilaterally down to his ears. Those have already smoothed out.

Good luck this week. I'm sure everything will be fine. Lot's of PS dust coming your way for little Ms. I!

 

[miraclesrule]

Ponder: that little ridge you feel from the soft spot down to just below the hairline is what started this whole flurry of activity. We are discovering that it is very common, and if there are no other signs of trig....pronounced distortion of the shape of the head with pinching at the temples, then it's usually simply a case of a ridge and a narrow forehead wherein the ridge corrects itself over time.

Thank you so much for taking the time to respond. Your thoughts and dust are much appreciated. Time for me to get up out of this bed because I get babysit both my GD's all day today..with the help of a friend, because I am still nursing a severe ankle sprain.

 

[packrat]

Sending some good head dust for Miss I, and also want to mention that all these babies heads are making my fingers twitch-I want to stroke some soft baby heads and nuzzle them.

 

[Puppmom]

Miracles, that looks like one perfect head to me! I never would have thought to mention that to the pedi. Here's a shot of DS's head at about 7 months. It looks so square compared to the other kids' heads!

 

[Skippy123]

Here is Evan's

 

[Munchkin]

As one of the "resident pedis" and a mom, I would prefer to see neuro prior to CT. The anesthesia is actually less of a concern to me (as a mom whose son was sedated twice for procedures by 12 months) than the significant amount of radiation introduced during a CT. Seriously, I avoid ordering CTs on my little patients unless I feel it is the only diagnostic option. The hands of a neuro surgeon well-versed in craniosynostosis are invaluable diagnostic tools. If s/he suggests CT for further eval, I would do it.

 

[miraclesrule]

puppmom: Your DS's head is perfect!! Thank you for sharing his photo.

Skippy: Dang Evan has a boatlaod of hair too!! Takes after his Mama. I'm just like packrat, these pictures are making me want to nonnomnom on their necks.

Munchkin: Thank you for your input. That is exactly what we are doing. In fact, we received an email back from the specialist after he reviewed seven photos of Ivy and read our history and he said, and I quote "I think she could see Dr O'Holleran and myself and Dr Meltzer first. These kids usually need monitoring by opthalmology. Ct may not be needed."

So yayayaya, that took a flurry of non-stop research and activity this past week and all day on Saturday I was in my Miss Determination mode in order to obtain this professional opinion in time to avoid the CT that was set for tomorrow. I agree with you, the sedation is always risky, but the amount of radiation on their developing brains is a HUGE concern of mine.

I told my daughter that if the email route through a contact with his office didn't work by Sunday evening (which it had) I was going to find out where he parks his car and be waiting there when he got off work, with my granddaughter in one hand, while the other one was waiving $200. The thing is...I would totally do that. I'm sort of crazy that way. Muahahahahahaha....

So thank you everyone for being there as part of our crazy week while we rode through the rollercoaster of emotion and learned so much about this condition and the amazing parents and children who have championed through the unimaginable. We owe them so much.