New from NY

[amommy22]

My name is Alison ... my son Trey was diagnosed with metopic cranio last week. The neurosurgeon said that since he is already 1 and he doesnt appear to be having any vision problems we are not going to operate at this time. He said we might have to get his ridge and lump bur'ed down if it gets much bigger. I was told by another neurosurgeon who saw pictures of Trey to get a second opinion because doenst feel that is the correct treatement plan for this case. I am so happy to find this site, and other people who are going through similiar experiences and who know the stress and worry.

[Jennifer]

:Welcome ! I am glad you have found us....This is a great place for support. Go with you gut! Don't ever doubt it. You are the one who knows him best..... If you still have concerns after meeting with the NS...get another opinion. Get 2 if you want. Does Trey complain of head pain at all? If he does, then I would not hesitate for a second to get another opinion. Let us know what you do!

Again- WELCOME!

[amommy22]

He is only 13 months, so he cant tell me "mommy i have pain in my head", but all his body language tells me he has intermitten pain exactly where his ridge on his forhead is. He cries, and rubs it, and when i give him tylenol he stops ... i dunno its all mothers intuition that tells me this. Others have also said to me that they think he has headaches, and this was before we knew anything about him having cranio. I am in contact with the doctor in NY the jorge posada foundation recommends so we will see ... I will keep you posted. Thank you for your support.

[Jennifer]

Let us know how the follow-up goes. Did the first NS give you any reason for the apparent headaches?

Again- welcome!

[amommy22]

No, he actually told me that my son doesnt have headaches. That is why i am skeptical of the whole visit ... how does he know from seeing my son for 10 minutes that he doesnt have headaches?! So with him telling me that no he doenst even have the headaches and then with the other doctor telling me to get a second opinion.... i am just at my wits end over here trying to figure out what to do and how swiftly.

[mayashekhina]

Always go with your gut and demand the very best for your son as quickly as possible its the only way to acheive anything medically I have found, next time- if you didnt already, go armed with a list of your concerns etc as this will give the NS a clearer vision of the whole situation.

[charliesmummy]

Hi Alison, ive just replied to you private e-mail but i just wanted to welcome you to craniokids. Like the others said, please go with your gut as your little one cant tell you if he's in pain. I would deffinately get a second opinion if i were you as ive never heard of anyone offering to file down a metopic suture that hasnt been operated on....how strange! I have heard they do that after surgery if there is extra bone growth but not before! x