Rash under helmet and now a weird bump!

[Henry'sMomGina]

Henry's helmet was meeting his eyelashes. That is how low it sat the first week. Then it was trimmed. But it still falls onto his eyes like it isn't tight in the back or something.

Then he developed a giant circle of a rash on his forehead. More holes were drilled into the helmet to help with the sweating. I was told to stop cleaning it with alcohol and to use Tea Tree Oil because it will be more gentle.

The helmet keeps moving down onto his eyes although it was trimmed. Is this normal?

The rash is clearing up but I think it is from the friction of the helmet because it moves so much. I just hate how it goes down to his eyes.

Also, I just noticed he has a bump on the left side of his head, I don't know what it is or why. It is on the incision line but it feels like a bone.

Any advice?

We do go to the orthotist Monday and the neurologist follow-up Tuesday.

Thanks!!!

[Wyatt's Mom]

Hmm, I haven't done helmet therapy so I can't really help with this. I just wanted to say I'll be thinking about you and I'm so glad his follow-up appointments are so soon.

Please keep us posted!

[LovingLeina]

Originally Posted by Henry'sMomGina

The helmet keeps moving down onto his eyes although it was trimmed. Is this normal?

The rash is clearing up but I think it is from the friction of the helmet because it moves so much. I just hate how it goes down to his eyes.

Hi, ok...first about the helmet coming down to the eyes and being loose. Leina's helmet came down closer to her eyes when she first got it, as she's grown into it, it has risen higher to just above her eyebrows.

As for being loose and moving, also pretty normal at the beginning. One thing you could try, is to cut a piece of soft cotton (t-shirt) material the shape of the helmet and fit it in under the helmet. We did this for the first couple weeks and it cut down on the sweat rolling out from under the helmet and the movement. Just an idea.

Originally Posted by Henry'sMomGina

Also, I just noticed he has a bump on the left side of his head, I don't know what it is or why. It is on the incision line but it feels like a bone.

Leina had this or something similar happen several times. The bump(s) were small, about the size of a pencil eraser and about that thick. They were very hard, sometimes a bit pink (not enough to signal infection). They always went away on their own within a few days. If you're worried, by all means call the neuro surgeon and check it out. I'm assuming they were scar tissue kind of building up and then receding???

Hope you guys get things worked out soon!

Carrie & Leina

[jumpingjacksmom]

I don't know Gina, sounds like everyone's experiences are a bit different with helmet fit, but Jack's doesn't really move around at all... it pretty much only touches the back of his head and his forehead and then his ear pieces touch his cheeks.. the rest is open and his head will grow into it, but the forehead and back were it touches hold it in place pretty snugly (maybe a slight shift every now and then).

i would think that if it moves too much it's not very effective?? i've heard it can take weeks to get a really good fit for some though? jack hasn't needed much adjusting at all.

the front of his comes to right at his eyebrows, but not down to his eyes.

he gets a little bit of a rash on the back of his neck from rubbing and sweat, but it's not bad at all. the cranial center told us to put cortizone on any rashes that occur... it's helped the little we've used it.

let us know how the visits go.

[Jenny]

We were told that helmets are not supposed to move. If they move then they are not putting effective pressure on the right places. The helmet should also only come down as far as the browbone. Sounds like it doesnt have the "perfect" fit yet. It took us a good 6 weeks to 2 months to finally get a good fit, but that's another story.