Craniosynostosis (Long)

[MOSh513]

I wasn't sure which forum to post this in, but since I spend most of my "alone" time (what little there is of it) on these boards, I thought I'd share some trials we are currently going through in the hopes that maybe someone has been through it and can give words of encouragement.

Yesterday I took DS (age 5 months) to the pediatricians after noticing a ridge in his scalp that I hadn't felt before. It kind of felt like he had hit his head, (but he hadn't). At first when I called the peds office I felt silly and told the nurse that I was probably being an over-protective mother, but she said if it made to feel better to bring him in then to do so. (There is a whole other side story about our trip to the peds on Friday with poopy diaper in hand! At least that one ended funny.)

The doctor we saw first wasn't sure what it was, but he was sure it wasn't from getting his head bumped. He also couldn't find his soft spot, so he had a more experienced doc have a look. In the end they sent us for x-rays to rule out Craniosynostosis. This is when the skull fuses together prematurely and doesn't allow the brain to expand correctly.

The x-rays were postitive, so we have an appointment to see a neurosurgeon next Wednesday.

Please keep us in your prayers. And thank you to all of you who give me a little chuckle when I read these boards late at night when I can't sleep. :)

[Marisa6826]

Merrilyn-

I"m sorry to hear of Caden. Where do you live? Are you going to a Children's Hospital?

Please keep us updated. There are several docs here, along with a couple Peds, so if you need questions answered, I'm sure they will do their best.

hugs

-m

[jasabo]

Merrilyn, I'm so sorry. You must be so worried. I don't know anything about that condition, but I'll certainly keep your ds in my thoughts. I hope that the appt goes well. Please let us know.

Lisa - mom to 16 month old twin boys

[kthomp]

I'm sorry to hear that. Hopefully everything will turn out ok.

I second Marisa's recomendation to make sure you go to a children's hospital if at all possible.

My DD had a heart problem and had to have open heart surgery last year, so I know how scary this must be for you. Please feel free to PM me if you want to talk. Though I don't have any experience with this condition, I am more than happy to lend my ear!

[MOSh513]

Yes, we are going to see a Dr. Ham from Children's Hospital in Detroit.

[Marisa6826]

If you end up needing a second opinion, the Children's Hospital of Philadelphia is downright amazing (they've also been voted best in the country a couple years running for anesthesia).

Sophie had both her eyes operated there last October.

-m

[Judegirl]

Merrilyn, I'm so sorry.

I did some checking around online, and if your Dr. Ham is Dr. Steven Ham, he's the Chief of Pediatric Neurosurgery at Children's Hospital, which I found encouraging.

If you feel up to it, please let us know how the appointment goes. I'll be thinking of Caden.

Best,
Jude

[mudder17]

Oh, Merrilyn! I'm so sorry about your son! How scary! I'll keep you all in my prayers!

Eileen

Mother of Beautiful Kaya
http://www.babysfirstsite.org/newtickers/ticker/16994.birthday.png

http://www.gynosaur.com/assets/ribbons/ribbon_garnet_6m.gif Breastfed 7 months and counting

[new_mommy25]

I'm so Merrilyn. I'll be thinking of you. Best of luck and please keep us updated.

[smomom]

I'll keep you guys in my thoughts. It sounds like you will be in very good hands.

I wish you guys the best of luck.

[HGraceMom]

If you feel the need for a second opinion, my SIL went through a very similar experience last year - unlike your situation, their ped. didn't catch the signs until their DD was almost a year old - They live in northern MI & were sent to Mott's Children's Hospital in Ann Arbor at U-M. They had a great experience overall - we're fortunate to have two excellent facilities in such close proximity to each other.

Good Luck - You're in our prayers - R.

[hez]

Merrilyn, I'll be thinking about you and saying a prayer. Sending hugs!

[COElizabeth]

My cousin's son had it and had surgery to correct it at around that age (I can't remember exactly when). The surgeon kept emphasizing to my cousin that it was *bone* surgery, not brain surgery. The little boy is absolutely fine and perfectly normal. He has a wicked looking scar on his scalp, but it's long since been covered by his hair. I know it's awfully scary, though! Keep us posted. If you have any questions after you meet with the surgeon, let me know, and I can ask my cousin for you if you like.

Elizabeth, Mom to James, 9-20-02
EDD #2, 10-30-04

[Jeanne]

Oh I'm so sorry you're going through this. Hang in there. I'll be thinking of you and hoping it goes well.

[nitaghei]

I hope everything turns out fine. Just wanted to say that DH had the surgery almost 40 years ago - when it was still experimental. It is bone surgery, not brain. And it's pretty routine these days. DH turned out perfectly fine (even got his Ph.D.),BTW; just has a scar under his hair, so it isn't even visible. But I know how scary anethesia is - DS has needed it twice already.

GL

Nita
mom to Neel, January 2003
dog mom to a cocker and a PWD

[missym]

I'm sorry to hear you and your little guy are going through this! I know the worry you feel, as we had similar concerns when our DD was a little older.

A great resource for information and support is this web site:
http://www.cappskids.org
The parents there all have kids with Craniosynostosis or Positional Plagiocephaly, and they know exactly what you're going through. They are great about recommending doctors, etc.

In our case, it turned out that DD's front suture had just fused with a slight ridge, but not too early, so no surgery was required. Let us know what you find out at the neurosurgeon... you'll be in my thoughts.

Missy, mom to Gwen 03/03

[candybomiller]

You'll be in our prayers. Please keep us posted about how things are going.

[alkagift]

Poor Caden, and poor mommy! I'm so sorry that you both are going through this. I am pleased that people on this board have experience (even obliquely) with this and that the children that they know turned out great. I will send you all my good thoughts and prayers.


Allison
Mommy to Matthew Clayton, 5/19/03

[ktdid74]

Sending positive thoughts your way! My DS was evaluated for this when he was 10m old. Scary even though it turned out ok for us. Keep us posted and take care--

[Mommie2MadLyn]

I'm so sorry to hear this news. You must be feeling very scared right now, I wish you and your family the best!

[cara1]

Sorry to hear your news. It may not seem like it, but it is mainly considered a cosmetic issue rather than a neurological one. He should be just fine.

[californiamom]

I am sorry you're going through this... I will keep you in my thoughts and prayers.

I got an October issue of Hour Detroit magazine through work and they had a list of Detroit's top doctors. One of the doctors that received special mention in this issue was Dr. Holly Gilmer-Hill, a pediatric neurosurgeon from Children's hospital... Maybe is would be good to make an appointment with her for a second opinion?

Here's some links I found about her on the net...

http://www.harperhospital.org/harper/neurosurgery/doctors/gilmerhill.html
http://www.med.wayne.edu/neurosurgery/department/gilmerhill.htm
http://www.pediatricneurosurgerygroup.net/staff.htm#gilmerhill

HTH.

Ana

[calebsmama03]

Hugs to you and Caden. Please do keep us posted.
Lynne
Mommy to Caleb 3/3/03
http://www.gynosaur.com/assets/ribbons/ribbon_emerald_18m.gif[/img][/url]
Oh my!! #2 5/05

[tippy]

How scary for you! You will be in my thoughts and prayers. Please keep us posted.

[MOSh513]

Thank you all for your words of kindness. We have an appointment tomorrow morning with Dr. Ham, the Chief of Neurosurgery at Children's Hospital of Michigan. I am so relieved he is listed as a carrier of our HMO. Hopefully I will know more tomorrow afternoon.

Thanks for all the great links. The cappskids link has been especially helpful!

[stella]

THIS is what she needs to hear!! thank you for sharing it!

It is amazing to me the number of common experiences we (and our extended networks) have!

I am sure that this comment will be a source of enormous comfort to Merrilyn - I know I was glad to read it!!

[mudder17]

We'll keep you in our prayers tomorrow. Please let us know how it goes.

Eileen

Mother of Beautiful Kaya
http://www.babysfirstsite.org/newtickers/ticker/16994.birthday.png

http://www.gynosaur.com/assets/ribbons/ribbon_garnet_6m.gif Breastfed 7 months and counting

[starrynight]

I'm sorry you have to deal with this but glad you caught it! Good luck with the neuro {{{hugs}} you and Caden are in my prayers!

[marinkitty]

Merrilyn:

I'm so sorry to hear your news. Mia had positional plagio and we had a CT scan done to rule out to, among other things, rule out craniosynostosis. She didn't end up having it, and only needed to wear a DOC band for 4 months to correct her head shape, but we did learn quite a bit about the procedure while waiting for the definitive results. There is also a little boy in our peds. practice who had the surgery and except for the scar he is totally fine and his head looks perfect now. The doctors we spoke to assured us that the surgery itself is not considered high risk as it is only on the skull, but I cannot imagine how scary it would be nonetheless. It sounds like you are seeing very qualified people - I hope it all goes very smoothly and please feel free to email me if you want to chat offline.

Holly
Mom to Mia (3.17.03)
Another March baby EDD (3.22.05)

http://lilypie.com/days/050322/0/0/1/-6/.png

[pixelprincess]

I am sorry you are going through this! My DS was thought to have Craniosynstosis based on an X-ray of his skull. Turns out one can have a false positive with an x-ray, which happened with my DS, and I hope it also does with your DS. It seems that the best way to rule out Cranio is through a CT scan. The neuro surgeon we saw took a quick look at the scan and was able to rule out Cranio. He did have positional plagiocephaly which was treated with a helmet from 6-12 months.

I got tons of help from various support groups on the net.
http://www.cranialtech.com/
http://health.groups.yahoo.com/group/Plagiocephaly/
http://groups.yahoo.com/group/CAPPSKidandAdultSupport/
http://health.groups.yahoo.com/group/CranioandParentsSupport/

HTH

[jubilee]

Hugs to both you and your son! Hope good news is on it's way to you :)

[ainwonderland]

Hi,

I completely empathize what are feeling and going through right now and wanted to send out big (((hugs))). My daughter was born with two cephelahematomas on her head--which is fairly common in newborns. Everyone told us they would go away, that it would just take time. Macey's were verrry large though and eventually the bone around them began to calcify and harden into skull--which isn't common. She had a bumpy head that sort of looked either like Dracula or Mickey Mouse ears (as the pediatrician put it).

Our pediatrician referred us out to U of Michigan neurosurgery to have them look at it. They did the cat scan and found that they were calcifying and would remain that way for life -- in addtion the bottom layer of bone was then weakened and thus left her at risk from head injury in the future. We had to make the difficult decision about what to do. We opted to have them removed--which involved an incision from ear to ear and then them drilling off the outer portions of her skull that had the bumps on it and then restructuring and reinforcing the skull she had underneath it. Because there is alot of vasculature in the skull she ended up losing alot of blood and then ended up needing a blood transfusion a day post surgery.

She had the surgery ~9months (and two days after my husbands surgery to repair his broken wrist--a whole nother story) and we were at UM for 3 days. Her roommate had surgery for cranio and we saw what they went through as well--there is alot more post surgery swelling with that surgery than our daughters since the whole upper cap of skull is removed versus large rear sections for our daughters. While it is difficult I would suggest you try and find as much info as you can and look at as many pictures you can to mentally prepare what you will see and what is "normal". Better to be prepared than to be even more scared if the first time you see it is on your precious baby.

Please if there is anything I can do to help you through this (send pics of my daughter pre-surgery, post surgery, and now at her adorable 2 year old self :-) or any tips, let me know.

My thoughts are with you...

[MOSh513]

We have some great news concerning Caden. The neurosurgeon has doubts that Caden actually has craniosynostosis! He wants to see him again in three months to check his progress and make sure that the ridge in his skull and his prominent forehead are not worsening. Personally, I would have felt better if he had ordered a CAT scan, but I will be discussing this with my pediatrician. After spending lots of time researching this online, I am confident that even if Caden does have this disorder, waiting a few months will not cause him any harm.
Thank you for your words of encouragement and your prayers. Once again, God shows He is a loving protector who answers our prayers.

[MamaKath]

(((((Merrilyn)))))) I am so happy to hear that the neurosurgeon felt positive about this and Caden's outcome! You guys continue in our prayers, He is truly the healer, and prayers do make a world of difference!!!

[Misha412]

I'm so happy to hear this news. I read this thread a few weeks back and felt so awful for what you were going through.

What a relief -- blessings to you and your little one!


Michele
Mommy to Gavin, 12/4/03