United Brachial Plexus Network, Inc.

My 18 month old daughters pt has just recommended that she see a Dr because her head is an abnormal shape but has been trying not to tell me much. she just said my daughters scull bones may have fused together too soon. After going to this pt for over a year now she should know me better than to think she can give me half a story and i wont bend over backwards to research it. Research is how I found out about Bpi. So based on the info from the pt and the way my daughters head looks I suspect that she has metopic craniosynostosis' Of course I have to wiat for an appointment with the pediatrician before i can know for sure but in my experience those gits never tell me anything im on my 3rd pediatrician now. so i will be demanding that my daughter has a CT scan. Metopic craniosynostosis can cause pressure on the brain and the abnormal shape can get worse,but surgery can correct it. So here we go again 1 year post primary surgery my daughter is doing so well with her arm it looks like she wont need any more surgery on her arm then BINGO another problem instead, What has my poor little angel done to deserve this. Last Christmas was spent taking care of her after her surgery and my husband was so unsupportive all my friends and family live thousands of miles away so I was completely alone. and i dont want to have to go through this allover again by myself. I feel so useless just last night i was saying how i would like to beable to give birth naturally just to be able to do it right next time but didnt want to risk another bpi. craniosynostosis is hereditary so i feel like maybe i should just give up on the childbirth thing altogether.I really could use some friendship right now.

Hi sam,

I'm really sorry to hear about all of this and truly understand how upsetting this can all be. Do you have a counselor you can lean on now? or maybe a religious leader? sometimes communities have lay counselors, too... I think that this is a good time to create a support network for yourself (as you are doing on line) but in your local area too - so that you have someone to call and talk to when you feel like you've hit bottom. And maybe also come up with a concrete plan of things you can do for yourself to maintain some sort of balance - like getting a massage once a month or taking a hot bath every night with a candle lit - or something that's just for you.

There is a book I will recommend also - it's called When Bad Things Happen To Good People - it's by Harold Kushner. It might be a helpful read.

I hope that things find their way up soon and we will keep you guys in our prayers,
francine

Sam
Hi my name is Mindy and I am an adult with a TBPI but I tend to read all the boards looking for information that might help my injury. My second child went through a lot of medical problems as a baby... Thankfully he survived but barely... He had a very rare form of apnea that caused him to completely stop breathing and had to be resusitated on more than one occasion. I remember vividly going days with no sleep. My now ex husband never helped and neither did the doctors... I remember how they would freak me out with the next what if... Jaymes survived and so did I. My son's doctors told me any other children I had would have the same thing as their brother but I put it in God's hands. At the time it gave me great comfort. I literally wore out a bible with Jay in that year and a half of never knowing if he was going to make it through the night. He will always have apneas but he will be eight in a few short days. I went on to have two more children both of which tested out fine but it was countless tests and monitoring before the doctors said that. I spent both pregnancies praying that God would give me the strength to face whatever these childrens health handed me.
For me I live in a very rural area with no family or friends so I was like you... I am a very strong person but I remember all the feelings your going through if you would like someone to talk to please e-mail me.
Mindy

Sam,

I'm sorry to hear of the stresses you and your family are going through right now, and I hope you are able to get some good answers soon.

You are not alone, we are here for you.

Where do you live? Perhaps one of us is nearby and could meet with you?

Take care,
Bridget

Hi Sam, I could be totally wrong about what I am going to say, but did this just come up lately, or did you always notice an abnormal shape? I have a 3 month old whos head is shaped abnormally from always looking and sleeping towards the injured side. She has plagiocephaly and will need to wear a molding helmet to correct it. I know that the helmet works best when infants and I am not even sure if someone older could wear it. Our PT is the one who said her head was very flat on one back side of her head and I knew I noticed it too, but didnt think anything at first. If you want info on what you are talking about(metopic craniosynostosis) and need to talk to others, here is a good site...
http://www.plagiocephaly.org/
This isnt just plagio, it has other things and look towards bottom left for a discussion and support group for craniosynostosis)

Hi. Sam.
I'm sorry to hear about what you are going through.
Sometimes it does seem overwhelming at times, and added to that it seems no one is there to help. But there is help. We are here for you to vent to. You are doing a good job by checking everything out yourself. There is nothing wrong with asking your pediatrician to do certain test for your child. That is what moms do. I understand how having a unsupportive husband can be, I have beent there. Is there someway you can meet with a church minister, or just go to your clinic to talk to a therapist. Just being able to talk to someome person to person helps.
I would not give up on the childbirth thing yet. I would just put off deciding this until you find out how your daughter is doing. I find it easier to just focus on one thing at a time. You are doing something to actually help your daughter, and that is not useless. Are you a stay home mom? Are there any nice neighbors you can talk to, just to have another adult to talk to. Can you write to your friends, or email them?
I wish I was there to give you a big hug, and tell you we are here for you.
You are in my prayers.
Just know you are not alone.
Please keep in touch.
God bless You, and be with you.
Debbie

Hi Sam,

I have a friend whose daughter also has an abnormal shape to her head. It wasn't just flat on one side, her eye, ear and cheek were very different on one side. Almost like that side of her face wasn't growing at the same speed as the other. Does that make sense? Of course, she was (and is) a beautiful little girl, but it was quite noticeable. For some reason or another it wasn't diagnosed or treated until she was 12 months or so. Long story short..... they were able to use the helmet to help reshape some, and opted not to do the surgery. I'm sure my friend wouldn't mind sharing information if you're interested. Just let me know and I'll talk with her. I wish you and your daughter the best. Take care.

Patty

hi again Sam,
What I was saying in my post about plagiocephaly is exactly what Patty is talking about. If not treated in early months of life it could cause deformity of the face and make one side push out or back. If you notice that your daughters ears are different(one either higher or pushed to the front), eyes (one set back more), or sometimes even the lips and nose are different, maybe this is what your daughter has. If this is your daughters case in any way, it will not do any damage to her brain...it is a totally cosmetic issue. If I were you I would call a craniofacial clinic in a hospital near you and make an appointment for a consultation. From there they will tell you if they think it is severe enough to work on or maybe give you other alternatives. Best wishes to you and your daughter.
Krista

SAM,
MAY YOU FIND PEACE IN YOUR TIME OF STRESS. WHERE DO YOU LIVE? I KNOW THAT IN DENVER THERE IS A GREAT HOSPITAL THAT WE TOOK OUR OLDER SON TO DENVER CHILDREN'S HOSPITAL WITH DR MCLEARY OF COURSE THIS WAS 10 YRS AGO HE HAD TORTICOLIS AND NEEDED SURGERY. AND OF COURSE MY HUSBAND REFUSED TO LET THEM "CUT" OUR SON AND THANKS TO GOD HE GOT BETTER WITH PT. THEY WERE GOING TO CUT FROM THE BACK OF ONE EAR UP AND AROUND TO THE OTHER SIDE. OUCH. DON'T YOU JUST HATE THE CAT AND MOUSE GAMES THAT THE DOCS PLAY WITH US??

-------PAULA YESENIA