New to this - getting scared/confused

[momof2]

Hi everyone - I am so glad I found this site. It seems to me like you all are a wonderful group of people and a fantastic support system. At 1 yr old my son Dalton's ped started getting concerned about his low weight and very slow weight gain. (He is now almost 18 months and just starting to walk and only hovering at 19lbs) He eats wonderfully (and almost anything you give him) but fails to gain. After numerous blood tests, urine tests and visits to a pediatric kidney specialist, they still didn't have a diagnosis. All his systems were fine and there was no reason for his low weight. We were then referred to a ped neurologist who said, yes he seems borderline developmentally delayed but is coming along fine and he should catch up ok. He ordered a skull xray to be sure there wasn't any premature fusing of the sutures. Well - tests came back, and there is. So we now have an appt set up with a neurosurgeon next Monday and will find out a lot more. His head is NOT deformed (that I can see) and he is such a happy happy kid. After all the research I have done on my own and everything I read - I am scared to death!!! Any advice would be so appreciated. Thanks!!!

[Jennifer]

:hugg's I'm gald you've found us. I hope we can help. Did it happen to say which suture was fused? Some are less apparent than others. If the neurosurgeon does say it is cranio, please remember that this is fixable. That doesn't make the process easy, but we can be thankful that it is fixable. These kids are so strong and most go on with no other effects afterwards. We have a section that lists 'questions to ask your NS'- that may help to take with you and give you some ideas of what to ask.......

Good luck on Monday! Please keep us posted. again- WELCOME!

[craniomommynbaby]

Howdy, neighbor! We live in Kissimmee, and my husband used to work in Sanford. Welcome to the boards! Who is your neurosurgeon? I am just curious if we have the same one. My son's surgery was done by Dr. Jogi Pattisapu (neurosurgeon) and Dr. Pat Ricalde (craniofacial surgeon) at Arnold Palmer Hospital for Children. Feel free to give me a call some time. I would be glad to chat and answer questions. Both my son and I have had surgery for cranio, and we are doing well. You can check out our story at the site in my siggy.

[momof2]

Thank you both for the quick response. I haven't gotten all the details yet so I don't know which suture(s) it is. One of the hard parts about this is that you would never know something is wrong with Dalton. He looks so perfect to me. We also have a 10yr old who is in perfect health so this is so disturbing to our family.

We are seing Dr. Pattisapu's partner, Dr. Gegg. What a coincidence that we have the same docs!!! I have lived in Central FL for 14 yrs and hear nothing but good things about Arnold Palmer Hospital so my husband and I KNOW we will be in good hands. Thanks for the encouragement - I'll keep ya'll posted!!

[craniomommynbaby]

Yes, we know Dr. Gegg as well. Dr. Olivarria (sp?) is one of the newer partners, and they all 3 rotate. Dr. Pattisapu did the surgery, but we have seen all of them during follow-ups. They are all very nice, but Dr. P. really stands out because of his awesome bedside manner.
I sent you a PM with my cell phone. Again, don't hesitate to call if you have any questions or need to chat.

[sarahanne]

Hi there

I'm sure you'll find all the support you need from the wonderful people on this board (I know I did). There's something about sharing your thoughts/feelings with others who have gone through the same experiences that seems to compliment the information received from the skilled professionals also.

I just wanted to say that I can understand your feelings about finding it hard ... our son was almost misdiagnosed because his condition was very "mild". I had no concerns about his appearance or his development and was completely unaware of this condition even exisiting. However, I was relieved that once he was diagnosed (and I'd gotten over the shock that there was something wrong) and that there were options available to do something about it.

All the best for your journey!

Sarah

[mom2mykidos3]

:welcome
I hope you find the information you need. What you are feeling right now is completely normal. We have all felt it too. These little ones are so strong, but it really doesn't make it any better for us until it is over. I wish you the best.
Keep us posted on the progress of the diagnoses.

[frankiesmom]

Welcome. Everyone has pretty much said it already. It is fixable and the children generally do better than the parents. This is the place fto let out all your questions and fears...

All the best

[Matthews Mommy]

:welcome I am sorry you are facing this it's hard but believe me and I think all the ladies (and gents) will agree it goes by so fast and when it's all done it's like an instant healing for us. I will keep you in my prayers.

[plukids]

Welcome to CK. We are here if you need us! I'll keep your little one in my thoughts and prayers.