Help-VERY Frustrated

[forgvn724]

I brought Kevin 400 miles away to go to a Children's Hospital for nothing. Without ever so much as looking at the CT Scan the neuro looked me in the face and told me that Kevin did not have cranio. Then he told me that even if he did he would not do anything about it because it woudl be merely cosmetic. Of course I immediately called the pediatrician at home. She agreed with me that we should get a second opinion. This neuro also said that Kevin should not have been put in a helmet because he thinks that helmets are bogus. It sounds like the ped wants us to go to Mayo Clinic in Minniapolis. Anyway, I am so frustrated. I know that something is wrong with my sons head and I feel that something should be done about it. (Even if it is "just the lambdoid and squamous sutures."

[Lauren]

Sorry you had such a negative experience. Definitely get a second opinion. Mommies know best. Our NS said that there is no such thing as "only cosmetic" when you are talking about a child's head. It may not be "medically necessary", but it is not "only cosmetic". That really helped us make our decision to do the surgery. I'm sorry you had to drive so far, but don't forget that just because a doctor is at a Children's Hospital doesn't mean that they are the final say. Trust your gut, it will take you far.

[Jennifer]

I'm so sorry! Not that you want your child diagnosed w/ cranio, but you want someone to take the time to look at things.....I would trust your instinct...meet w/ someone else and get another opinion....Good luck and keep us posted!

[mom2mykidos3]

I am sorry. I thought it was bad when I had to go an hour and get nothing accomplished. GET A SECOND OPINION!!! I hope things get better for you. We are here for you.

[forgvn724]

Right now I think that the ped's plan is to send us to Rochester, MN to the Mayo Clinic. It would simply be too much for us to drive there, we will have to fly. Also they do believe in the use of helmets, so at least I feel I have that on my side.

[snickers9246]

Paula, so sorry that you had to go through that... too bad we couldn't shove his big head in a helmet!!!

Second opinion is great, so glad your Pedi is behind you on that one! "just the lambdoid and squamous sutures." What an A**. It doesn't matter which ones it is,he needs to be looked after! Our NS said the same thing to us, he said "People may try to tell you that this is jsut a cosmetic surgery, but it's not, it's a necessary sugery"

Good luck and please keep us posted.

[ahope4us]

I'm so sorry you aren't getting the care you need. Why did he not look at the CT? Which Children's Hospital? Anyway, keep on 'em, I know we have had to just about harass our dr and affiliates to do what we wanted. This whole cosmetic thing...I saw an MRI pic on http://www.emedicine.com/plastic/topic534.htm#target17 (check out pic 18) it shows how the brain had not completely developed 'right' because of cranio. Why won't they drop the "it's just cosmetic"? Good luck in MN. I know CCAkids helps with financial assistance for travel away from home. www.ccakids.com/prg.asp If you give them a call they can e-mail the application to you so you get it ASAP.
Danielle

[Rhonda O]

Paula, I am so sorry that you had such a bad experience. I would def get a second opinion. We all have learned that our mommy instinct is usually right and to trust it. As for the "Cosmetic surgery", our doctors told us that there was a slight chance of Zachary having pressure on the brain. They also said it wasn't something that they were comfortable waiting and seeing how it went. We felt that a slight chance was still too big of a chance to take. I hope that you get some answers soon.

[forgvn724]

We went to Children't Hospital in Denver, CO. I am just frustrated because after all of the research I have done on my own it seems that something should be done. THe ped did decide to send us to Mayo Clinic in Rochester, MN. Unfortunately it is 620 miles away and my husband can not keep taking time off work. I will get the actual appt. date next week as the NS is out of the office this week.

[mom2mykidos3]

Just a question, How far are you from Northern Utah? Primary Childrens Medical Center is awesome. Something you might want to think about.

[mom2mykidos3]

OK now I am answering my own question. I mapquested it. You are the same distants to us as to the other hospital.
Our PS is great. He works under a very well known PS, Dr. Morales. I am sure you can find him on the internet. Also, you might want to look up Primary Childrens Medical Center. They are a very well know hospital. I don't know if you have heard about the conjoined twins, but they just did the surgery on them a couple of weeks ago. They were joined at the side.
Anyway, if you want to look into it you can. You know you would have a friend here. Also, Lilyray's daughter just had Dr. Morales do her surgery at the first of this month.
Dr. Morales's website is www.cranioutah.com
If you want to email me you can.
mom2mykidos3@msn.com

[Matthews Mommy]

You know what cranio can cause hydrocephalus, and raised intracranial pressure which in return can damage the brain. So they need to give up the Cosmetic thing! If medicaid paid 100% of my sons surgery for cranio then guess what it was not cosmetic. Definately get a second opinion and file a complaint about him and his attitude. Good Luck, lots of hugs!

[saraweise]

I am so sorry for having such a bad experience! This is so important!

When Dr. Carson gave us the low-down on our options he stated that we had three of them. 1) Address ASAP (risk of being so young through surgery) 2) delay surgery (longer surgery – possible reconstruction needed) 3) do nothing.

He was clearly against the do-nothing approach. He stated there is a risk of learning disabilities, brain damage and the untreated "malformation" could affect his self esteem as he ages (he mentioned that there is a higher rate of depression in young adults with untreated cranio).

I was like a deer in headlights as he ran through all of our options. I remember stating to him, "Sounds like we have 3 options and you are recommending number 1." He stated yes and the rest is history.

Go with your instinct. This Dr sounds like he has a strong personal conviction and it is not in sync with your own parental needs. My fingers and toes are crossed for you. This is hard…but you have a lot of support here!

Another post mentioned CCA kids (www.ccakids.com) …they do offer support if you need help with travel and lodging to get good care. Keep us updated!