Friday, August 13, 2010

His Wonky Head

Bubbaboo CT scan results came back and all is fine, there is no fusion. Basically this specialist is saying just to leave it and his head should take shape, however it will never be perfect. His flat head is quite severe even the specialist said it was the worst case he had seen all year. I am not really happy with that. He didn't suggest any physio or any other options. I am concerned that Bubbaboo is going to have to deal with the stigma of a "wonky head" for the rest of his life.
I hadn't been too concerned before but something happened recently which made me think it could be worse. Bubbaboo is going to have enough things to deal with when he gets older, he doesn't need to be given a hard time because of the strange shape of his head.

We were at the park a couple of weeks ago playing on the play equipment and I was taking photos of him playing. There were two little girls about 8 or 9 hanging out on the equipment they were watching me take pics. Then one went off to play and the other continued to watch us. On the return of the friend the girl that had continued to watch said to the other." I know what's wrong with him he has a wonky head" Of course I pretended I didn't hear but I just wanted to cry. My poor little boy, that will be what he will have to deal with. People are already commenting and I am sure there are those that think there is something wrong with him but don't actually say anything. And I know kids can be really cruel. I remember being called Fatso or Big boobs at school and it scarred me, my confidence level was zero. I struggled with my self esteem right into my young adult life. I don't want that for him if I can avoid it.

So at this stage I am thinking of getting another opinion. I want to be able to tell Bubbaboo when he gets older that I did everything  possible and know in my heart that I made the right decision and had all the possible options layed out in front of me, even if there are no options. I don't want him to come to me and say Mum why didn't you do this or that or whatever and hate me for it.
 

Bubble Bath

10 comments:

Miss Ruby said...

Oh people! *fume* They can be so mean Vee! I hate that people find it fine to judge and pass comments on other people....

I agree that you should get a second opinion.

xx

loribeth said...

I agree too. I know of a few parents, online & IRL, who had this issue. Their kids had to wear a special helmet, which was not entirely fun, but in the grand scheme of things, it was only for awhile & it helped alleviate the problem. Good luck!

Bea said...

There is never any harm in a second opinion, and it will give you confidence that you are making good decisions. I am all for second opinions.

Glad there is no fusion and that things should improve.

I wonder if it will also be less noticeable once his hair grows? I think Rachel of Fertility Stories had a child with the same thing whose head never quite got to normal shape, and as I recall no stigma or future problems (she is now in final year of high school). In case that reassures you. But at the same time, if you can get an even better result by going for a second opinion, why not?

Bea

DaisyGal said...

oh he'll never hate you Vee, he'll know (he knows now) that you do everything for him, the best things, the good things.

However, as a mom, I understand, you want to exhaust all the options, have all the info and do something about it, so that his life is better becuase of it, that's why you are BEYOND amazing to me.

I'm sorry about those children and thier comments, I hate the judging and ridicule even from the smallest places. Your son is PERFECT in every way my friend. EVERY WAY.

Hugs

S said...

I'm sorry that people are so mean. I would get the second opinion. My youngest had a consult over plagio (flat spot on her head). Once her head grew, the spot sort of grew out, it you will. Several children in the office had helmets and their parents raved with good reviews. Hugs.

Nearlydawn said...

1st, let me tell you to go talk with/email Stacie at "Here Storkey, Storkey" - one of her sons did the helmet thing - his head is GREAT, and she lived through it! :)

My kid had a pretty bad flat spot, and his did get quite a bit better without a helmet, but his head is still not quite right. Also, one of his ears is a bit off.

We did do phyiscal therapy, for about 6 wks I think, and then I took over doing them at home. It made a BIG difference (quickly too). You might ask the 2nd opinion Dr. about that... It isn't any harder than having special play-time with your boo doing some stretches and specific movements.

I guess if crew-cuts don't come back into style for men Jim will be OK, but trust me, I don't like that I didn't do more.


When I wash Jim's hair is when I notice the remaining deformity most. However, there are other things, important things, like bike helmets - they don't fit him right. He's 2, and we had to by a young-adult helmet to span his odd-shaped head. This means it is too big, and isn't doing the job fully. Sunglasses don't fit right because of how is head bulges on the side more than normal. He physically CAN'T wear sunglasses on top of his head... they just will not span the distance. He also can't wear most child-sized glasses. Hats... OMG, Hats. Again, since his head bulges a bit at the top he CAN'T wear toddler-sized hats. It is hard to find Thomas the Train hats in adult sizes. Eventually this might work out OK, but I'm not convinced he'll ever find hats/helmets/glasses easy to wear.

ALL of this is to say that no, it isn't OK for them to brush you off if he has a significant flat spot. Yes, it might get better, but it might not get near enough to normal, even if it looks OK. There is more to it than whether people give him a hard time.

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maytey said...

You are a wonderful caring mum Vee. No harm in getting that 2nd opinion. He is definitely gorgeous.xx

MrsSpock said...

Flat spots are usually pretty aggressively treated here with helmets. My MIL has a pretty obvious flat spot from back in the day, as it wasn't really treated in the 40s, and wears her hair to hide it.

A second opinion maybe?

Anonymous said...

Definately get a second opinion. One of the mums from my mothers group had a smiliar issue with her son and after finding the right specialist and with treatment his head is all fine now. I can definately relate to comments. My daughter has a dry skin condition and I'm always getting comments about her skin. It's disheartening I know but hang in there you are doing the best you can and are a wonderful mother.

L