Our Journey with Brachycephaly.

[Babybump87]

Was going to post this in the journal section but thought here might be more useful for other members and given DS is now 12 months old

Since about 5 months old DS has had a pretty flat back of the head, having DDs we know this can happen and given time it will round out . This was not the case for DS . At 8 months old it was still flat , we got reassurances from the Health Visitor and GP that it will round out . The older he got the more I worried it wasn’t rounding out .

So fast forward to now he’s 12 months old , and we decided to book in with a specialist.( thanks again to HLx for all your help with this!)

At the first appointment I was pretty upset and felt guilty that I went against my gut feeling, but now I am more focused on getting him the best to help. I am sure I will feel up and down about it until we are used to the helmet and have him settled , I am not too sure how he is going to react to it !

 

[Bevziibubble]

Hoping all goes well

 

[HLx]

Following! Im so glad you trusted your instinct hun, and it will be over with before you know it! Yesterday was the worst day for helmet wearers, it was way to hot! Good luck to you! How long did you say he has to wear it for?

 

[Babybump87]

Oh gosh this heat isn’t helping and the fact he’s cutting his top teeth ! He was sweating in it when we took it off for his half hour but just keeping him cool .

He’s not bothered by it at all thankfully !

Around 6 months she said . We go back on Saturday for a proper fitting.

How’s Enzo x

 

[HLx]

Oh gosh this heat isn’t helping and the fact he’s cutting his top teeth ! He was sweating in it when we took it off for his half hour but just keeping him cool .

He’s not bothered by it at all thankfully !

Around 6 months she said . We go back on Saturday for a proper fitting.

How’s Enzo x

I know hun last Wednesday and Thursday Enzo didn't sleep in his helmet over night, it was way too hot! I didnt want him to lose out on 2 nights, but it is what it is, atleast its cool now!

How is your little one doing full time in the helmet now?

I cant believe we've had ours for over a month already, the times flying! We've got our second measuring on the 9th July, I cant wait to see how much weve channelled, weve had some good growth spurts recently! X

 

[Babybump87]

I know it was ridiculous ! We had a fan on him and the rest of him was cool . He’s been in it full time since Thursday . We just went straight into it given he wasn’t bothered and we got the go ahead to do so. Hes been fine actually cries when we take it off hahaha !!

Wow a month already that’s crazy ! Fingers crossed for him. Look forward to the update on your thread !

I do miss seeing his hair and touching / kissing his head ! Didn’t realise how much I actually did it until now haha .

 

[HLx]

We had a fan on too but it did nothing! Im kind of glad its cooled down a bit now! Hahaha awww Enzo is the same! He cries and gets so restless when it's off

When do you have your next check up and measurment hun x

 

[Babybump87]

Haha it’s crazy how well they have adjusted !

We have an appointment on Saturday for our official fitting . We did one over a video call but we obvs need to make sure it’s fitted correctly . Not sure if she will do any kind of measurements then . He would have been wearing it for 10 days by then .

 

[Babybump87]

So today was our official helmet fitting appointment .

His cranial index has reduced by 2% . I am overjoyed that we are seeing results already !. The specialist said she could see and feel a difference too ! She thinks in those 10 days he had a growth spurt !

We are going to take pictures every two weeks starting today! We have another appointment on 28 July .

 

[HLx]

Thats amazing news! We think Enzo had a growth spurt in his first two weeks of treatment, he channelled 7mm! Not sure if theres been any more significant improvement since though but we find out next thursday! Im so glad the helmet is helping for you x

 

[Bevziibubble]

That's great news!

 

[Babybump87]

Thanks ladies !! feel a sense of relief in a way that it’s working. hoping when we next go in 2 weeks there will be more improvement. I can’t lie I will be disappointed if no improvement, but also I know these things take time! So it’s like a tug of war haha , I’m just happy we can notice a difference now!

Since he’s just started walking the helmet has stopped a few bumps from happening !!

Fingers crossed for Enzo’s appointment ! Hopefully there will be more change, have you notice anything ?.

 

[Bevziibubble]

Good luck for your next appointment

 

[HLx]

Its so nice to see it working isn't it! Enzo done so well on his first measurement that ill feel kinda sad if the next measurements are not great, but as you said, its the way is goes sadly

I've not noticed a huge difference this month, but the back does seem to be popping out now and his ears are pretty much aligned, but we will soon find out how great its been next week haha. We are a month down now so technically only 6 months to go, however Enzo turns 1 in 4 months, so im hoping and praying its off by then!

 

[Babybump87]

Haha So true ! Just hope it does a good enough job that they can carry on themselves as they grow into big boys !

Ohhh that’s re assuring then if his ears are more aligned ! I hope you get a nice surprise at his next appointment ! How quick has that month gone ! Aww I hope it’s off for his birthday!

I fully expect DS to have his until at least December/January !! Any earlier would be a bonus !

 

[Babybump87]

We have our 2 week check up tomorrow ! I feel nervous to see if there’s any further improvement ! I just can’t tell because his hair has gone so long too !

Fingers crossed

 

[Bevziibubble]

Good luck

 

[Babybump87]

Thanks Bev !

 

[HLx]

Look forward to the update hun!

 

[Babybump87]

So in 3 weeks he’s gone from 97 to 94. Made some good progress in a short time !

He is still in the severe category but we are so close to being in the moderate

Fingers crossed for moderate in 4 weeks time at our next check up !