Jake Update/Helmet update

[Bean]

We have been having such a hard time with Jake's helmet. He did not adjust to it well in the beginning (I know I posted he was doing just great day 1, but then he was miserable). He finally was doing ok last Wednesday ... Thursday he had an appt to get fitted - it went ok. Our helmet guy says Jake looks great - keep up the good work. Then Jake was turning his head right out of the helmet so we had to take it off - all day Friday we were at BCH getting his helmet fixed, and by that point he had a small blister on the back of his head so he couldn't wear it again until Sat. So, Sat. he was doing well with it, but we had to do frequent head/skin checks t make sure the adjustments were okay. Today was the first day we were back on track since last Wed and he was miserable all over again.

Is this what it is going to be like? Is this normal for the first couple of weeks of helmet, because I am out of my mind!?! This is so not what I expected. I feel very unprepared and confused and very very worried. How long before his suture begins to close again? I feel as if Jake's head looked better directly after surgery than 2.5 weeks out ... Here are some pictures through the last few weeks - they are all different angles, though, so it can be hard to tell ... but ... from now on I am doing sunday bath pics: front, back, top, side.

Please be honest with what you see! I feel as if, when I look at him, I see such a difference ...however, when I put these pictures up, I realized maybe I am just seeing the difference in him in general.

Any advice, input, stories very much welcome

24 hours before surgery
http://i281.photobucket.com/albums/kk223/CTBean4/SI850184.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850185.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850188.jpg

24 hours post surgery
http://i281.photobucket.com/albums/kk223/CTBean4/SI850210.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850213.jpg

Helmet Time!
http://i281.photobucket.com/albums/kk223/CTBean4/SI850261.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850272.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850278.jpg

1.5 weeks after surgery
http://i281.photobucket.com/albums/kk223/CTBean4/SI850274.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850275.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850277.jpg

Today - 2.5 weeks after surgery
http://i281.photobucket.com/albums/kk223/CTBean4/SI850335.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850336.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850337.jpghttp://i281.photobucket.com/albums/kk223/CTBean4/SI850338.jpg

[mattricia]

Christine, i'm SO sorry about all the helmet troubles you're having. I'm sorry i can't advise you on that...

I do see the scaphocephaly still present, but isn't that to be expected with endoscopic, hence the need for the helmet? How long have they projected that he will need to wear it?

Have you spoken to Kristen from Australia? Her twins didn't wear helmets, but she might have some thoughts on this, as it sounds like they had endoscopic as well...

I just have to say it again, b/c i think it every time i see him: Jake is SUCH a darling little bambini! I wish i could hold him and love him up!

[AuburnLocks]

I'm sorry you're having such a rough time. I wonder how Leina is doing since she is the only one here with the same style helmet I think. We didn't have any issues with fit except for one week when he had a huge growth spurt and it got very tight so I'm sorry I can't offer any advice.

I hope it gets figured out soon so he gets more comfortable. Did the surgeon have any advice? Hopefully he can reassure you about your fears of the sutures closing again. It doesn't sound likely but if you're afraid of it you should definitely call and ask.

Hang in there!

[Tawnia]

It does seem to be lengthening again (from the pics) but as others have said that is what the helmet is for. Don't worry :)

[Amy K]

I think the top view of his head 2.5 wks post-op looks good. Like the others are saying, that's where the helmet comes in. Just hang in there with it and I bet you'll see good results. I totally understand your frusteration and concern though. My kid is 6 months post-op for sagittal and his head is pretty long in the forehead area (he had a posterior cvr)...you can see his noggin in my profile album.

By the way, I love his "sports" helmet! He's a cutie!!

[Bean]

Another quick update - Jake just woke up screaming because he had popped his hemet askew again. It's so sad - he looks so confused and uncomfortable, not to mention there is no easy way to fix the problem ... my husband and I are going to bring up getting him the tradtional helmet because this is crazy ... I mean, how long is long enough? What is "normal"? It doesn't seem like anyone else has had these problems with the helmet, right?

Sigh ... I feel like I'm losing my mind because I was SO prepared for the surgery and recovery but this? No. I was not prepared for this. This sucks.

[Wyatt's Mom]

Aww, poor guy! I'm so sorry you are having all these troubles. I hope they can work something out for you where he is more comfortable and the helmet stays on. Good luck and keep us posted!

[LovingLeina]

Christine, I'm so, so, so, sorry that you guys are having such a rough time. Is Jake a stomach sleeper? That's the only reason I can think that would enable him to get his helmet askew? Leina sleeps on her side or back and hasn't had any issues with that. She did have a week or so adjusting to the helmet. She was pretty upset about it during that time period.

She still has moments, particularly when it's hot (we have no air conditioning) and she's sweating under it, that she bats at it and clearly isn't happy with having it on. She also has a tough time with it at bedtime if she's overtired. Otherwise she's doing really well.

We haven't had any fit problems yet, except a small red spot on her cheek for a couple days, which we were able to adjust on our own. We have been giving her frequent breaks...probably more than she "should" be getting, since it's so warm here. I figure in the end, the time spent in it for months will make up for a few extra minutes or hours here or there.

I'm sure that your helmet people that you've seen are good, but I would HIGHLY suggest that you see if you can have Mike take a look at it. He was AMAZING with Leina and fitting her helmet. He took probably at least an hour just tweaking a little here and a little there. He's a total perfectionist and does such a good job. He was the one that designed this helmet, so he might have more suggestions for making it work for Jake???

I'm just so sorry that it's been a hard time. It's enough to have to go through the months of waiting and then the surgery...but to have these issues on top of all that is just so frustrating.

I'll be praying for your guys that the fit improves and that Jake gets more comfortable with it....or that you find a solution that will work for you.

Good luck! And if you have ANY questions, comments, venting that needs to be heard, encouragement that you need to hear...etc. PLEASE feel free to e-mail, PM or call me!

[Abby'sMom]

I'm so sorry he isn't adjusting well to the helmet. Abby never seemed to really mind her's but she had a different kind so I don't know if that makes a difference...she was also a bit younger than Jake so that might be a factor. She did develop contact dermatitis from an early helmet "rub" (hence the invention of the cotton cap) and we kept her out of her helmet for 3 days until it healed. I don't think you need to worry about the suture closing. Abby is nearly 7 months post-op and her suture line is still open which Dr. Proctor said is a good thing. I would call Dr. Proctor first thing on Monday to let him know what's going on...I'm pretty sure he will tell you the helmet doesn't "keep" the suture open. The strip removed begins to fill in and heal in the natural course of time and having the helmet off shouldn't speed up that process. I think the biggest problem with keeping the helmet off for any extended length of time is that the "fit" will change and of course it delays the "molding" process. I think Abby was in the helmet with continuous wear for 4- 6 weeks before we noticed how much rounder her head was. Looking at Jake's pictures I think he looks good and I wouldn't expect to see a significant change just yet especially since he had to spend time out of the helmet.

I will be praying it gets better soon and he adjusts quickly from this point on but still be sure to keep Dr. Proctor (not just the orthotist) in the loop...this is after all a new helmet design and if there are problems that can't be worked out quickly then it's important that he know about them right away. I wonder how Leina is doing in her helmet? You may want to send Carrie a PM if she doesn't post here soon.

I hope there is a New England meet up so that I'll get a chance to meet you and Jake and talk in person. Hang in there...
:hugg

PS- I just noticed your updated post before I posted this...That does not sound normal! Abby's helmet was a little loose in the beginning but not like you describe. If it is really bothering him I would take it off for the night and get on the horn first thing in the morning...I am so, so sorry you are dealing with this!

Here's another hug!!! :hugg

[Abby'sMom]

We must have been writing at the same time! :giggle

[LovingLeina]

We must have been writing at the same time! :giggle

Yep! It's nice to "see" you!

[Holly]

We never had any major problems with either one of my boys helmets except a blister here and there when it was time for an ajustment. They both had more traditional helmets. I would diffently ask about getting a more traditional one.

[Bean]

I emailed Dr. Proctor the story, my concerns and the pictures - we are going in to see him tomorrow afternoon.:yipee Hopefully he wants to take a different avenue i.e. at least a new helmet, if not the "taditional" style.:pray

I ended up taking Jake's helmet off last night. He wore it most of the morning, and then started twisting it again??? I got so upset, I took it off and threw it in the car and said "f*#K this!!!":finger He wore it just fine for the evening, but kept screaming and screaming at bedtime (does he know I will take it off??? or maybe he knows it hurts when it turns on him?:shrug) so after an hour, I did take it off and he's been fine since. Sigh. Something is wrong. Obviously.

Between this and my daughters excema ( it has been SO SO bad lately - probably because I have been so focused with Jake:ugh) I feel like I am losing my mind :hammer. It is all I can do to keep my shit together during the day, and I lose it every night. I am going to call my PCP on Wendesday and see if she can help me out before:react. I feel useless and confused and overwelhmed ... which isn't helping the situation at all because I'm The Mom, you know? I'm The One who is supposed to know it all and keep the peace and fix the problems ...:no that is not the case these days.

Smilies rule.

Thanks for being here, everyone. I can't imagine not having a place to go to right now.

[xl1200c]

Christine,

I am SO glad you called Dr. Proctor, he certainly wants the best for you - and hopefully he can help you get right to the bottom of this tomorrow. Hang in there.

[spoongirl10]

I really hope Jake can get it together! It sounds like a rough time :( My son has the traditional helmet and so far so good. He was grumpy for about a week. I hope you can get that helmet and it works out better. Just make sure you have them drill some holes in it so his head can breathe. My son is just now getting the heavier helmet with all foam on the inside but, his 1st helmet lasted almost 3 months post op! I can definitely tell a big difference in Jake's forehead with the surgery. I couldn't really tell with my son's surgery because I saw him everyday. The only way i could really tell was when i went for the laser scans and i saw his 3-D before and after. Good Luck!!!!

[AuburnLocks]

So glad you are figuring it out. Poor little guy.

New and improved can be good...but it sucks when it's your kid they are working out all the kinks on.