Log In Sign Up

Scared.


Forum: Children with Special Needs

Notices

Welcome to the JustMommies Message Boards.

We pride ourselves on having the friendliest and most welcoming forums for moms and moms to be! Please take a moment and register for free so you can be a part of our growing community of mothers. If you have any problems registering please drop an email to boards@justmommies.com.

Our community is moderated by our moderation team so you won't see spam or offensive messages posted on our forums. Each of our message boards is hosted by JustMommies hosts, whose names are listed at the top each board. We hope you find our message boards friendly, helpful, and fun to be on!

Reply Post New Topic
  Subscribe To Children with Special Needs LinkBack Topic Tools Search this Topic Display Modes
  #1  
May 19th, 2009, 08:07 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
Aiden had an appointment with a specialist yesterday to see about getting a helmet to help with his plagiocephaly (flattening of the head) due to his torticollis (a muscle in his neck isn't long enough). His head was bad enough to qualify him for a helmet so we were just waiting to hear if insurance would cover it or not. In the mean time, the specialist wanted to get an xray to rule out another condition Craniosynostosis, it's where the bones in the head fuse prematurily.
He had an appointment with his regular doc today, and she did the xray. Well about 4:30 I got a call saying that he did have Craniosynostosis but the xray tech thought it was mild and they wanted to get an ct scan to make sure. So we now have an appointment for the scan on Friday. I am so scared, the only way to correct Craniosynostosis is surgery, where they take some of the bones in the head out to make sure there is enough room for the brain to grow.
I know many of you have been through multiple surgeries with your children, but I have not. My older two children have autism and FAE and have never been through surgery or anything like that. Alex has never been hospitalized and Katie was only hospitalized once for a allergic reaction.
Has anyone been through this before that could give me some pointers, and let me know what to expect?
__________________

check out my My Etsy Shop See My Blinkie Gallery & My Siggie Gallery & My BLOG
Reply With Quote
  #2  
May 19th, 2009, 08:19 PM
Platinum Supermommy
Join Date: Mar 2005
Posts: 8,671
I've never been through this exact surgery, but we have all been through at least one surgery. I know how scary it is, but i dont want you to get ahead of yourself. Take things one day at a time. I know all of this is a lot, and your first thought is to research it as much as you can, but be cautious of that until you have an actual diagnosis from a DOC, not a tech. There is a reason they go to school longer. Get your CT and see what it says and take it one day at a time.

This is not my attempt to tell you that everything is okay, i know we all hate that. This is just me trying to make sure you take it one step at a time. KUP on the other testing. Keep your head up Mama, you're doing great
__________________





My Blog
http://howdyinc.com/mrshowdy/
Reply With Quote
  #3  
May 19th, 2009, 09:55 PM
kittycat's Avatar Platinum Supermommy
Join Date: Jul 2004
Location: Chicago, IL (W Burbs)
Posts: 12,488
We haven't had that surgery, but Kyle has had about a dozen to date, with more coming down the road (associated with a chest/cartilage malformation). Surgeries are always tough, it's your child - you know?

I think everyone has to find a way to deal with preparing for it, the recovery time - and the long term aspect (if any). For me and my DH, once we have a diagnosis - we research. Maybe we go too far, but I want to know - I don't like surprises, and I'd rather know everything from best case to worst case, so I'm prepared. And I like to know and see it in my head, when the drs are telling me something. Otherwise, I don't think I could handle it emotionally - all that well.

It also helps if you have a good support system, whether it's friends, family - your spouse, whatever. You need an outlet. A lot of women like to blog, because writing is sharing - and it helps to get it out.
__________________
DH (37) ~~ Ian 2/22/07 37wks ~~ Kyle 12/30/03 23.6wks ~~ Konner (Twin Angel) 12/26/03, 23.3 wks


Reply With Quote
  #4  
May 20th, 2009, 04:26 AM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
Send a message via Yahoo to Ditzzy
I agree with the PP, please don't worry and stress until they give you reason to. I know it's hard. ((Hugs)) That's great that he's getting a helmet, which will help so much! I know how hard it is to stay calm with all these diagnoses being thrown at you. You're in my T&P! Please KUP

Ironically we're being told the exact opposite. Her plates aren't fusing. This is probably require a helmet too. Let me know how he does with his!!
__________________




Thank you, tasha_mae, for my siggy!
Reply With Quote
  #5  
May 20th, 2009, 06:00 AM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
Send a message via MSN to quietsong
Hugs and good luck, hon!! Try not to think and worry about surgery until they tell you it's inevitable. Things can change, you know?

If and when they do say he needs surgery, never be afraid to after his doctor every question you have. Knowledge is power! I researched like crazy and asked lots of questions, just to make myself feel a little better. Also, I don't know how long a surgery that one is, but see if your doctor is willing to have someone send you word now and then. That was a huge help to me during Danny's surgery; it was a 6-7 hour ordeal, but they checked in with me occasionally, just to let me know he was doing fine.
__________________



Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
Reply With Quote
  #6  
May 20th, 2009, 07:14 AM
Tara0906's Avatar Mega Super Mommy
Join Date: Apr 2007
Posts: 4,459
I am sorry. Justin had a flat spot that was BAD when he was an infant. Unfortunately he didn't have a very proactice dr. and never sent us for x-rays or recommended a helmet..so he still has a flat spot. Ugh.. I hate that dr. Anyways.. He went for x-rays once he was seen by a different dr. who had me believing he would need the surgery. Thankfully he didn't. I read up on it and it had be very scared too.

I have no advice about surgeries.. I am going through the samething with my son Justin (needing kidney surgery) I just wanted to tell you I hope things turn out good and he can just get the helmet for correction.
__________________

Reply With Quote
  #7  
May 20th, 2009, 08:34 AM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
I can only hope that they are wrong and the helmet will help. If he does have Craniosynostosis than the helmet won't help at all because the bones in his head need to be flexible for the helmet to work.
__________________

check out my My Etsy Shop See My Blinkie Gallery & My Siggie Gallery & My BLOG
Reply With Quote
  #8  
May 20th, 2009, 08:55 AM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
Send a message via Yahoo to Ditzzy
I'm thinking of you hon. Please let us know what happens!!
__________________




Thank you, tasha_mae, for my siggy!
Reply With Quote
  #9  
May 21st, 2009, 07:42 PM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
Send a message via AIM to iamkc
I'm so sorry! When do you expect to have an answer? I'm sorry that I don't remember and can't seem to find it-how old is Aiden? I hope that he doesn't need surgery. Surgery can be so scary!

Milo has plagiocephaly, but he was born that way. It's also not a flattening for him, but like the right half of his skull slipped forward. No amount of positioning is helping. We're sort of waiting to get through everything else before doing more about this. Surgery was mentioned, but our appointment isn't for another month. The thought of head/brain surgery freaks me out.

I'm sincerely hoping that this isn't what's going on and that you ARE able to use the helmet for Aiden!!! The helmets are a pain, but preferred, I know! Many hugs-KUP!
Reply With Quote
  #10  
May 21st, 2009, 09:41 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
Aiden goes in for his CT scan tomorrow morning. He is 4 months old. I am still trying to hold out hope that it is just plagiocephaly. Him wearing a helmet doesn't bother me at all, it's alot better than surgery. But I will do what needs to be done. The more I read the more scared I get. All the pics I have seen of the craniosynostosis look exactly like Aiden's head but I am trying to remain positive, though it is hard. Hopefully I will get the results back tomorrow and won't have to wait until next week. I have never been through a CT scan so am not quit sure what to expect. Do they usually tell you right away or do you have to wait to hear from your doc?
__________________

check out my My Etsy Shop See My Blinkie Gallery & My Siggie Gallery & My BLOG
Reply With Quote
  #11  
May 22nd, 2009, 04:44 AM
Tara0906's Avatar Mega Super Mommy
Join Date: Apr 2007
Posts: 4,459
I am keeping you in my thoughts!!!
__________________

Reply With Quote
  #12  
May 22nd, 2009, 05:51 AM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
Send a message via MSN to quietsong
Thinking of you this morning!
__________________



Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
Reply With Quote
  #13  
May 22nd, 2009, 07:32 AM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
Send a message via AIM to iamkc
Also thinking of you this morning!
Reply With Quote
  #14  
May 22nd, 2009, 11:57 AM
Platinum Supermommy
Join Date: Mar 2005
Posts: 8,671
they CAN give you results in as little as 20 minutes, but I dont know that they will there. But if they dont, you can always call the ped right away to check on things
__________________





My Blog
http://howdyinc.com/mrshowdy/
Reply With Quote
  #15  
May 22nd, 2009, 06:12 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
Aiden did really well with his CT scan, he stayed still so he didn't need to be sedated. A couple of hours later I got a call from his doc saying it was not craniosynostosis. I am so relieved. Now we just have to wait to see if insurance will cover the helmet. I should get an answer by next week.
__________________

check out my My Etsy Shop See My Blinkie Gallery & My Siggie Gallery & My BLOG
Reply With Quote
  #16  
May 22nd, 2009, 07:13 PM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
Send a message via AIM to iamkc
HOORAY! I am SO happy for you guys! You must be celebrating tonight!

Hehe-I just started crying for you. Good, not bad, I promise! YAY!!!!

I hope that insurance covers the helmet-they should, right?
Reply With Quote
  #17  
May 22nd, 2009, 07:20 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
I was told that his insurance usually pays for helmets but who knows. I can just hope so because if not the helmets can cost around $2500 - $3000 from what I have heard.
__________________

check out my My Etsy Shop See My Blinkie Gallery & My Siggie Gallery & My BLOG
Reply With Quote
  #18  
May 22nd, 2009, 08:09 PM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
Send a message via AIM to iamkc
I think that most insurances do. And if it's Medicaid, I've been told that they're even easier to deal with than other companies!

Good luck! I'm just so happy that a helmet alone will help!
Reply With Quote
  #19  
May 22nd, 2009, 08:48 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
That's wonderful news!

I am a researcher too. I always want to know all possibilities/scenarios.
__________________



Thanks Yvonne (Jaidynsmum) for my beautiful siggy!














Reply With Quote
  #20  
May 22nd, 2009, 09:32 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
I am so glad the helmet will help, even if the insurance denies you, fight them and get Aiden the helmet. Hugs mama!
__________________




Reply With Quote
Reply

Topic Tools Search this Topic
Search this Topic:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off



All times are GMT -7. The time now is 02:16 AM.



Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2014, vBulletin Solutions, Inc.
Search Engine Optimization by vBSEO 3.6.0