Re: Sorry its been ages...update on Annie...sorry long one!

[Guest guest]

,

I know you all must be very frustrating to be still waiting for

testing, etc. to be complete regarding Annie's situation... It's

great they are investigating everything just to make sure

everything's okay for peace of mind, but I'm sorry it's taken so

long thus far! Would you post and let us know how her spinal tap

goes next week?

Will the neuros, etc. be recommending the helmet for Annie once all

this testing has concluded, or are they saying that growth will

round out her head? Would you remind me how old your daughter is?

Please keep us posted on Annie's situation, and take care,

Christie (Mom to Repo'd Remy)

> haven't posted for ages but my LO has just been seen once again

for

> cranio because of ridging . They have said that because her birth

> was really swift ( 1hr from 1st contraction to end) her skull

bones

> overlapped. The bones will reshape when the head starts to grow.

> Mmmmmmm! I think that I have read this before on this site....

>

> Annies asymetry (pls excuse the spelling) has gotten worse with

her

> head, ears and face being affected. We haven't got the helmet yet

as

> she is being seen by neurologists for lack of head growth. Annie

> also has thick hair but it is starting to follow the shape of the

> bumps on the top of her head and behind her ears. Taking her to

the

> hairdressers next week to try and style it. I will try and post

some

> up to date pictures.

>

> Its been a trying week with 3 hospitals in 4 days. Next week they

> want to do tests on her including a spinal tap to see what is

going

> on with her growth and make sure that everything inside her head

is

> ok...I am sure it is!

>

> Both my husband and me are very tired from the stress and would

like

> it all to end. I still think her asymetry is mild but because this

> neuro saw more than us I am wondering if it has gotten worse over

> time. They took picutres this time at the hospital so I can have

> another look in a few months. Maybe because we see her everyday we

> don't notice the changes...We thought it was the otherside of her

> face coming forward but the neuro said the right as it was

> compensating for the flat side on her left. He also said her head

> was flat at the back but starting to round out from the

bottom/neck.

> Does this sound familiar?

>

> Annie also has a spot at the back of her head that is always red

and

> looks sore. Her head is completely bald there and it seems to

> irritate her when lying flat, does this sound familiar? I know I

> should have asked these questions to the neuro but to be honest I

> feel like the family are on a merry go round of hospital appts

> especially as my son has been seen by the cranio eye surgeons this

> fornight to see if he has ICP.

>

> Still tomorrow is another day!!!!!

>

> We would appreciate any replie. I am gonna post some of Annies

pics.

>

> Thanks

>

> and family

> -----

[Guest guest]

Annie is 8 months old on Weds. I have mentioned a band or helmet but to be honest they looked like I was saying a four letter word. I don't think Annie is too bad at the moment but I don't know what the future holds. The second neuro said that Annie did have asymetry but not enough for surgical intervention....So where does that leave us. I have posted some pictures of annie on the board.

She has lots of hair so it is hard to see her head shape. I am more worried if her face and ears continue to grow in the direction they are growing at the moment.

.

Re: Sorry its been ages...update on Annie...sorry long one!

,I know you all must be very frustrating to be still waiting for testing, etc. to be complete regarding Annie's situation... It's great they are investigating everything just to make sure everything's okay for peace of mind, but I'm sorry it's taken so long thus far! Would you post and let us know how her spinal tap goes next week? Will the neuros, etc. be recommending the helmet for Annie once all this testing has concluded, or are they saying that growth will round out her head? Would you remind me how old your daughter is?Please keep us posted on Annie's situation, and take care,Christie (Mom to Repo'd Remy)> haven't posted for ages but my LO has just been seen once again for > cranio because of ridging . They have said that because her birth > was really swift ( 1hr from 1st contraction to end) her skull bones > overlapped. The bones will reshape when the head starts to grow. > Mmmmmmm! I think that I have read this before on this site....> > Annies asymetry (pls excuse the spelling) has gotten worse with her > head, ears and face being affected. We haven't got the helmet yet as > she is being seen by neurologists for lack of head growth. Annie > also has thick hair but it is starting to follow the shape of the > bumps on the top of her head and behind her ears. Taking her to the > hairdressers next week to try and style it. I will try and post some > up to date pictures.> > Its been a trying week with 3 hospitals in 4 days. Next week they > want to do tests on her including a spinal tap to see what is going > on with her growth and make sure that everything inside her head is > ok...I am sure it is!> > Both my husband and me are very tired from the stress and would like > it all to end. I still think her asymetry is mild but because this > neuro saw more than us I am wondering if it has gotten worse over > time. They took picutres this time at the hospital so I can have > another look in a few months. Maybe because we see her everyday we > don't notice the changes...We thought it was the otherside of her > face coming forward but the neuro said the right as it was > compensating for the flat side on her left. He also said her head > was flat at the back but starting to round out from the bottom/neck. > Does this sound familiar?> > Annie also has a spot at the back of her head that is always red and > looks sore. Her head is completely bald there and it seems to > irritate her when lying flat, does this sound familiar? I know I > should have asked these questions to the neuro but to be honest I > feel like the family are on a merry go round of hospital appts > especially as my son has been seen by the cranio eye surgeons this > fornight to see if he has ICP.> > Still tomorrow is another day!!!!!> > We would appreciate any replie. I am gonna post some of Annies pics.> > Thanks> > and family> -----For more plagio info

[Guest guest]

Annie is 8 months old on Weds. I have mentioned a band or helmet but to be honest they looked like I was saying a four letter word. I don't think Annie is too bad at the moment but I don't know what the future holds. The second neuro said that Annie did have asymetry but not enough for surgical intervention....So where does that leave us. I have posted some pictures of annie on the board.

She has lots of hair so it is hard to see her head shape. I am more worried if her face and ears continue to grow in the direction they are growing at the moment.

.

Re: Sorry its been ages...update on Annie...sorry long one!

,I know you all must be very frustrating to be still waiting for testing, etc. to be complete regarding Annie's situation... It's great they are investigating everything just to make sure everything's okay for peace of mind, but I'm sorry it's taken so long thus far! Would you post and let us know how her spinal tap goes next week? Will the neuros, etc. be recommending the helmet for Annie once all this testing has concluded, or are they saying that growth will round out her head? Would you remind me how old your daughter is?Please keep us posted on Annie's situation, and take care,Christie (Mom to Repo'd Remy)> haven't posted for ages but my LO has just been seen once again for > cranio because of ridging . They have said that because her birth > was really swift ( 1hr from 1st contraction to end) her skull bones > overlapped. The bones will reshape when the head starts to grow. > Mmmmmmm! I think that I have read this before on this site....> > Annies asymetry (pls excuse the spelling) has gotten worse with her > head, ears and face being affected. We haven't got the helmet yet as > she is being seen by neurologists for lack of head growth. Annie > also has thick hair but it is starting to follow the shape of the > bumps on the top of her head and behind her ears. Taking her to the > hairdressers next week to try and style it. I will try and post some > up to date pictures.> > Its been a trying week with 3 hospitals in 4 days. Next week they > want to do tests on her including a spinal tap to see what is going > on with her growth and make sure that everything inside her head is > ok...I am sure it is!> > Both my husband and me are very tired from the stress and would like > it all to end. I still think her asymetry is mild but because this > neuro saw more than us I am wondering if it has gotten worse over > time. They took picutres this time at the hospital so I can have > another look in a few months. Maybe because we see her everyday we > don't notice the changes...We thought it was the otherside of her > face coming forward but the neuro said the right as it was > compensating for the flat side on her left. He also said her head > was flat at the back but starting to round out from the bottom/neck. > Does this sound familiar?> > Annie also has a spot at the back of her head that is always red and > looks sore. Her head is completely bald there and it seems to > irritate her when lying flat, does this sound familiar? I know I > should have asked these questions to the neuro but to be honest I > feel like the family are on a merry go round of hospital appts > especially as my son has been seen by the cranio eye surgeons this > fornight to see if he has ICP.> > Still tomorrow is another day!!!!!> > We would appreciate any replie. I am gonna post some of Annies pics.> > Thanks> > and family> -----For more plagio info

[Guest guest]

Annie is 8 months old on Weds. I have mentioned a band or helmet but to be honest they looked like I was saying a four letter word. I don't think Annie is too bad at the moment but I don't know what the future holds. The second neuro said that Annie did have asymetry but not enough for surgical intervention....So where does that leave us. I have posted some pictures of annie on the board.

She has lots of hair so it is hard to see her head shape. I am more worried if her face and ears continue to grow in the direction they are growing at the moment.

.

Re: Sorry its been ages...update on Annie...sorry long one!

,I know you all must be very frustrating to be still waiting for testing, etc. to be complete regarding Annie's situation... It's great they are investigating everything just to make sure everything's okay for peace of mind, but I'm sorry it's taken so long thus far! Would you post and let us know how her spinal tap goes next week? Will the neuros, etc. be recommending the helmet for Annie once all this testing has concluded, or are they saying that growth will round out her head? Would you remind me how old your daughter is?Please keep us posted on Annie's situation, and take care,Christie (Mom to Repo'd Remy)> haven't posted for ages but my LO has just been seen once again for > cranio because of ridging . They have said that because her birth > was really swift ( 1hr from 1st contraction to end) her skull bones > overlapped. The bones will reshape when the head starts to grow. > Mmmmmmm! I think that I have read this before on this site....> > Annies asymetry (pls excuse the spelling) has gotten worse with her > head, ears and face being affected. We haven't got the helmet yet as > she is being seen by neurologists for lack of head growth. Annie > also has thick hair but it is starting to follow the shape of the > bumps on the top of her head and behind her ears. Taking her to the > hairdressers next week to try and style it. I will try and post some > up to date pictures.> > Its been a trying week with 3 hospitals in 4 days. Next week they > want to do tests on her including a spinal tap to see what is going > on with her growth and make sure that everything inside her head is > ok...I am sure it is!> > Both my husband and me are very tired from the stress and would like > it all to end. I still think her asymetry is mild but because this > neuro saw more than us I am wondering if it has gotten worse over > time. They took picutres this time at the hospital so I can have > another look in a few months. Maybe because we see her everyday we > don't notice the changes...We thought it was the otherside of her > face coming forward but the neuro said the right as it was > compensating for the flat side on her left. He also said her head > was flat at the back but starting to round out from the bottom/neck. > Does this sound familiar?> > Annie also has a spot at the back of her head that is always red and > looks sore. Her head is completely bald there and it seems to > irritate her when lying flat, does this sound familiar? I know I > should have asked these questions to the neuro but to be honest I > feel like the family are on a merry go round of hospital appts > especially as my son has been seen by the cranio eye surgeons this > fornight to see if he has ICP.> > Still tomorrow is another day!!!!!> > We would appreciate any replie. I am gonna post some of Annies pics.> > Thanks> > and family> -----For more plagio info

[Guest guest]

Hello

I'm so sorry you are having to go through all of this. It is sooo

scarey when something is wrong with our kids, or they are testing to

find something. Please let us know how the spinal tap goes. Is

your husband going with you?

Hang in there. I will include Annie and your family in my prayers.

Sandy Willow's Mom

Germany

> haven't posted for ages but my LO has just been seen once again

for

> cranio because of ridging . They have said that because her birth

> was really swift ( 1hr from 1st contraction to end) her skull

bones

> overlapped. The bones will reshape when the head starts to grow.

> Mmmmmmm! I think that I have read this before on this site....

>

> Annies asymetry (pls excuse the spelling) has gotten worse with

her

> head, ears and face being affected. We haven't got the helmet yet

as

> she is being seen by neurologists for lack of head growth. Annie

> also has thick hair but it is starting to follow the shape of the

> bumps on the top of her head and behind her ears. Taking her to

the

> hairdressers next week to try and style it. I will try and post

some

> up to date pictures.

>

> Its been a trying week with 3 hospitals in 4 days. Next week they

> want to do tests on her including a spinal tap to see what is

going

> on with her growth and make sure that everything inside her head

is

> ok...I am sure it is!

>

> Both my husband and me are very tired from the stress and would

like

> it all to end. I still think her asymetry is mild but because this

> neuro saw more than us I am wondering if it has gotten worse over

> time. They took picutres this time at the hospital so I can have

> another look in a few months. Maybe because we see her everyday we

> don't notice the changes...We thought it was the otherside of her

> face coming forward but the neuro said the right as it was

> compensating for the flat side on her left. He also said her head

> was flat at the back but starting to round out from the

bottom/neck.

> Does this sound familiar?

>

> Annie also has a spot at the back of her head that is always red

and

> looks sore. Her head is completely bald there and it seems to

> irritate her when lying flat, does this sound familiar? I know I

> should have asked these questions to the neuro but to be honest I

> feel like the family are on a merry go round of hospital appts

> especially as my son has been seen by the cranio eye surgeons this

> fornight to see if he has ICP.

>

> Still tomorrow is another day!!!!!

>

> We would appreciate any replie. I am gonna post some of Annies

pics.

>

> Thanks

>

> and family

> -----