No surgery and surprisingly disappointed

[evergreenmom]

Mama-

You know what is best for your boy... if no surgery isn't sitting right with you then you should definitely contact Dr F or Dr S or both! Monkey is a cutie pie but I look at his pic and can understand your concern...not only cosmetically but the trigon aspect even if it is mild does seem concerning to me- that coupled with his speech delay would make me uneasy as a mom.

My son Xander had surgery for lambdoid a year and a half ago... prior to surgery he had no language skills- he hadn't even babbled as of ten months of age. Several months post op he finally began to babble and his first words came slowly starting around 18 mos. He is currently in speech therapy and speaking more and better all the time but it has been a long road and we have a good deal still to overcome. Just wanted to say that Monkey may really benefit from Speech therapy. I know the doctors don't believe that surgery corrects delay but in my mom opinion I just think there is something to say for he fact that Xander's speech is just about ten months behind where it should be... kwim?

[Etinker]

I thought I'd just put another thought out there. I wonder if when you felt he needed surgery you then spent a lot of time convincing yourself that surgery was the right thing and it was the best thing for him. You made yourself feel positive about surgery and not positive about not having surgery. I know I had to do that when Maya needed her surgery. I had to convince myself it was the right thing to do. Now you are being asked to reverse these feelings. That is really tough.
I am not saying that this should effect what you do (Seeking more opinions or surgery) just perhaps help you feel more comfortable with what you are feeling.
-Beth

[Tawnia]

Mama - Looking at his pics I am surprised that they have taken surgery off the table. I have seen much milder kids have surgery on here... the ridge can be burred down but as far as my Dr said the trigon will stay the same or get worse over time - it won't get better. If you are still not sure I would email Dr. Fearon or Staffenburg and get another opinion.

[Monkey'sMommy]

The team said that they saw some improvement from his 12 month picture and then seeing him in person at 14 months. Is that enough reason to think it might get even better over time? That is the one thing really hanging me up right now.

Is the purpose of emailing Drs. F and S just to get another opinion, or would it be to consider them to perform the surgery if they recommended it? Because we couldn't afford to travel, time wise or money wise, for surgery. I feel funny emailing them to get another opinion. Like trying on wedding gowns at an upscale boutique knowing full well you're just going to order it online. I feel like I would be taking up their precious time.

[QueenB]

I'm speaking for myself when I contacted Dr.Fearon. I contacted him twice. Both times without telling and or knowing what our local Dr's were recommending. For me it was a confirmation, second (third really) opinion so we could be comfortable with our decision. It worked out perfect for us in that at first (3 mo old) he stated to watch him as he grew with no surgery at this time ( same as local dr) and then when he started to progress he recommended a surgical correction and even compared his first pics to the new ones I sent. He kept all his info/pics which I found very impressive. I had never planned on having him as our doc and he never suggested that we use him. I really felt like it was another opinion/confirmation of what we should do. So when both of our local do now said surgery. We were comfortable with that. So, I suppose what I am saying is that you can use him for another point of view and then use that opinion however you choose. It may make you comfortable with your no surgery approach or give you more information to seek yet another opinion. Ultimately, you want to be 100% comfortable with your decision and I'm not sure you are there yet.? My personal opinion is that I don't think it will hurt to contact him and no he doesn't expect you to use him.

[Nezzy]

Dr. Fearon would never expect you to use him just for asking his opinion. Even after an hour long phone consultation with him, Dr. Fearon made it very clear to my husband and I that he would not mind if we chose to go someplace else. Like Beth said, it is simply getting another opinion.

[navyjen]

I would email Dr Fearon. Only after seeing him in person did it put my mind at ease. And there are even days I look at my daughter's head and wonder if no surgery is the right thing for her. The stroller angle kills me every time.

[evergreenmom]

Dr Fearon is extremely generous with his time and seems happy to help anyone who asks for advice regarding their child's diagnosis and treatment. I have heard stories of him calling people who've emailed him while on vacation with his family... that takes dedication!

When I emailed him just wanting a second opinion since lamdoid is so rare- he was happy to give it- he called me the next day (late on a Friday afternoon no less) and after he answered my questions we chatted a bit more (he and I went to the same school- I knew from reading his background online). Anyway, he confirmed Seattle Children's was a good cranio center but if we weren't happy with them he suggested I consider going to Dr Staffenberg in NY since I have family there. What a nice guy! So unselfish, just a professional trying to help anyone who needs it!

[monty]

Ok I have hesitated up untill now to add to this part of the forum cos I am biased.

All I will say is I have spoken to people who so wished that their parents had made the decision to have surgery when they were children. It is something that is always on their mind.

I don't know the risks of surgery in your case or most appropriate age to have it. Perhaps you can monitor how the condition progresses and decide at a later date.

I get the feeling you are leaning towards wanting something done. That isn't vanity, that is pure logic in this world.

Best of luck

[Monkey'sMommy]

Monty, thank you. I have only just seen your reply. I appreciate your opinion greatly; the doctors and the parents have their own opinions, but I know we ALL wish we could look into the future and know what our kids would have wanted us to do. Having your perspective on this is wonderful.

My husband and I are leaning toward trying to convince Monkey's team to do the surgery. We can't know if his head shape would change over time, for the better or worse, and we know without a doubt we would rather him go through surgery now instead of when he is older and more cognizant of what is happening. On top of those reasons, Monkey also has a significant speech delay. And we just found out that he has sensory issues as well. So, that all points to doing the surgery now.

We will see what his NS thinks when he sees Monkey on the 31st. But we do very much appreciate your invaluable opinion. Thank you for chiming in!