View Full Version : Newbie from England
10-01-2007, 03:41 AM
Hi all. I found you through a link on Wikipidia.
I'm Mandy, I live in the UK and I have 3 daughters. Emma Robyn, aged 18, Sarah Louise, 17 months and Lily Rae, 13 weeks.
Lily was 5 weeks prem and from the start, I noticed something was not right with her head. I mentioned it to a health visitor and was told it was fine, don't worry about it so I told another one who told me to tell my doctor when Lily had her 8 week post natal check. In the meantime, the health visitor refered us to a physiotherapist.
When I told the doctor, he asked a few questions about lilys development and refered us on to a neurosurgeon.
Whilst we were waiting for our appointment, we were seen by the physio who told me Lilys head was the shape it is because of positioning in the womb. She was breech but I still wasn't convinced. She gave us exercises to do.
In the past few weeks, Lily has become very unsettled, crying alot.
Anyway, on Friday, we finally had our appointment with the neuro surgeon. Although I have known all along there was something wrong, it still came as a shock to me when he told me that some of the plates in Lilys head had fused too soon. He didn't actually tell me its called craniosynostosis, I found that out by googling 'fused skull'
We were sent for xrays and photographs
Anyway, he told me he was going to have to speak to a consultant at a hospital on the other side of England as our hospital doesn't deal with it and he also told me it could be the cause of Lily being so unsettled. He also mentioned that she could be brain damaged as a result as she doesn't yet smile and she very rarely makes eye contact. We now have to wait to see what this specialist has to say as Lily may need an operation. I can't see she wont as if her brain is still growing and her head isn't, wont this cause more problems?
I'm still in shock and very scared. My husband went mad at me because I looked on the net and scared myself more. A little knowledge can be a dangerous thing. I know that as I used to be a healthcare professional myself.
Anyway, I'm glad I've found you all. I know most of you are from across the pond but I thought maybe you could give me some advice and reassurance. Do you have any members from England?
I'm really sorry this is so long and possibly rambling, My head is still mush at the moment and I can't really think straight so thankyou for taking the time to read.
10-01-2007, 05:39 AM
Oooooh, welcome to the group Mandy, I can only imagine what a terrible shock it has been for you but seriously have a look around the site at some of the posts about surgery and post surgery results it is all really encouraging.
As far as not smiling or making eye contact at 13 weeks it is a bit concerning but there is a small chance the fused plates could be affecting her vision which does have a chance of rectifying itself post surgery once things have a chance of repositioning itself. Make sure when you get your appointment that this issue gets discussed, because even if this proves not to be the case there are plenty of supports and helps in place to assist you and little Lily Rae, dont worry too much yet until you get to speak with the 'experts' as they will give you a much better picture of what is actually going on than what your current neurosurgeon has done.
For the cranio side of things I highly recommend you staying with this site as it is so supportive and informative there are some great families here more than willing to share their experiences with you, I found I suffered information overload and ended up just going around in circles by searching all over the internet.
Im an aussie girl but there are a few lovely local families to you on here.
10-01-2007, 05:41 AM
Hiya Mandy, Im from Northamptonshire England.
Im really sorry to hear your going through this but you have found a fantastic site with the most wonderful people.
My son Charlie had his op for Metopic synostosis 3 weeks ago and Oxfords John Radcliffe Hospital. There are 4 main supra hospitals that specialise in cranio, Birmingham, Oxford, Great Ormond street & i think another in Liverpool. You really need to get your doctor to refer you to one of these hospitals as they are the best. Have you heard of Headlines? If not try and get in contact with them as Gil will give you all the information you need to get your referal.
The best thing for Lily is to have a 3D CT scan which will show exactly what's happening to her scull. I know it's easy said that done but try not to worry too much as Craniosynostosis is a fixable condition. Im going away for 1 week so wont be on here but hopefully Annmarie will see your post and give you all the details for Headlines, if not send her a message, her signature is Jacksmum if you search in the members list. Take care and Welcome to Cranio Kids xxx
10-01-2007, 09:18 AM
Hi Mandy this is Annmarie here. I am sorry to hear what you have been through and I hope we can reasure you and answer any questions you may have.
From pictures you have seen of the conditions could you have a guess as to what suture/sutures are fused as this will help lots or send a pic to me and I may know although I am not a doctor I feel I can tell just by looking. Frontal view, side and top would be good.
Headlines website ad is www.headlines.org.uk (http://www.headlines.org.uk) there is lots of info of the hospitals to choose from. If you get in contact with Gil she can give you some info and some magazines too.
Where abouts in England are you from? I am in North Devon and Jack had his surgery in Oxford.
Goodluck with everything and if you what to email me do so at email@example.com xx
10-01-2007, 09:56 AM
Welcome Mandy, I'm glad you found us! As you've already discovered, we have members from all around the world here, so you should be able to find plenty of support. :hugg
I'm glad to hear that the neurosurgeon got the ball rolling, but I know how difficult the wait is. I remember Dillon being very, very fussy pre-op, and he had some delays, but the good news is that surgery can correct a lot of that.
I agree with Racheal that the lack of eye contact could possibly simply be an eye muscle concern vs. a developmental concern. Eye muscle problems can be somewhat common with cranio, and can make a child appear to be looking elswhere. Does she seem to like to tilt her head to one side? If possible, you may want to ask about seieng an optholmologist at your next visit. Dillon just had his eye muscle problem (4th nerve palsy) corrected last week and he's doing great!
I know how scared you are, we've all felt that same fear and it's awful. If you take a look around at all our stories though, you will see that these kids are incredible and do wonderful!
Once again, welcome! You've found a great group of supportive people here :hugg
10-01-2007, 10:40 AM
Welcome to the group!
My son was born with the soft spot that runs from the front of his head to the back of his head (sagittal) all ready fused except for a small part in the middle. We were given a surgery date for when he was 6 months old. I was so worried, especially at the fact that he was a preemie (born a little over 7 weeks early). I didn't think he would be big enough for the surgery. But he was. His metopic suture (forehead soft spot) was getting wider but a few weeks before his surgery, it felt like it was almost closed. By the time his surgery date arrived, both coronal sutures (soft spots on the front sides of his head) were fused half way up.
Our craniofacial team said that even though the soft spot has recently closed, it is still an expandable area. Which was a good thing.
I hope your little one's doctors get her seen very soon.
We are here for you, we understand your fears and your concerns.
Best wishes to you, Dawn
10-01-2007, 12:12 PM
I am a UK member - but live across the sea in Northern Ireland. My little man is two and half years old and just been diagnosed with metopic synostosis. I, like you, scared myself half silly looking up craniosynostosis on the net but thankfully (like me) you found this site. In the one week that I have known about Cranio Kids I have learned so much and more than anything I don't feel like I am alone. Thanks to all these great ladies taking the time to share their stories. I don't have a date for surgery yet but I know that when the time comes there will be a cushion of kind words and helpful advice to carry me through.
Good luck with Lily Rae (gorgeous name, I have a newborn neice called Emily Rae)
Welcome to the site from another newbie - Sam (we are in great hands!!!!)
Welcome Mandy & Lily there are ots of nice people and a lot of warm hearts and support, I am a cranio adult and a newbie hee as well. But I promise you will have all the support we can give.
10-01-2007, 04:03 PM
I'm glad you've found us! We're here to help. I wanted to address the 'doesn't make eye contact' comment. My Emily had the same thing.....I just never felt she looked at me-- it was almost as if she was looking through me- I noticed it at a very young age. The doctors checked her eyes and everything came back fine---but she just never looked at me. My husband noticed it too. Less than 1 week post op and she just looked at me--really really looked at me. It was the best feeling. I'm assuming it had something to do with the pressure and w/ the release of pressure, everything went back to 'normal'.
The England moms have already stepped in-- getting your appointments and whatnot- they'll help you best. But we're all here to help and offer support. Again- WELCOME
10-01-2007, 04:09 PM
Hi Mandy, welcome to the site. I'm so glad that you found your way here. It's such an informative and very supportive place.
My husband and I have a similar story. When my Andrew was born his head was very narrow and elongated. When we asked why we were told that it was because he was breech in the womb. This continued to be the answer that we got until I did my own research on the internet. He had surgery to correct this (sagittal cranio) in July.
I hope that you will soon get the answers that you need from the doctors. We all know how scary it is to be waiting to find out what is going on with our little ones.
10-02-2007, 07:10 AM
Wow!! What a welcome, thankyou everyone.
I've not confessed to my husband that I've found you, he has already told me to stop looking on the net but I really can't help it, its hard not knowing.
If she needs an op, she will be going to Alderhey in Liverpool. Its the other side of the country but I've heard fantastic stories on how lovely they are.
I took Lily to the clinic this morning and there is a mum there whos daughter underwent a similar op not so long ago there. She said they were absolutley brilliant. Her daughters is genetic, she inherited it from her mum.
She has given me her phone number so if I need to talk to someone, I can call her.
I'm feeling a bit better about things at the moment as I have also been talking to another mum on a different forum who son has craniosynostosis but they told her his wasn't bad enough to warrant an operation so I'm really hoping Lily wont need to.
As to showing you photos, I looked through all the ones we have of Lily to date and I can't find any that really show it but her head is quite flat behind her right ear with a prominence over her right eye. she always favours laying on the right side, too, if thats any help. I can't really take photos as hubby would want to know why but this is Lily about a week ago with big sister Sarah. Not sure if its very clear though
Once again, thank you all for your big welcome.
10-02-2007, 09:23 AM
Welcome to cranio kids...sorry I missed you when you first joined. Glad you found us!!
just tell him they are beautiful girls and you want Lots and lots of pictures because they grow up so fast.luv Tamzie
10-02-2007, 09:33 PM
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10-03-2007, 09:44 AM
Welcome Mandy. I'm glad you found Craniokids. It's a great support. Your girls are beautiful!
10-04-2007, 12:18 AM
Welcome Mandy! I'm sorry to hear your hubby is upset about your research. Yes, it is true you can scare yourself with some of the info you find, and you have to use your judgement on what information is going to be useful to you. Maybe you should bring him to this site and show him around. I think it will be extremely helpful for both of you. I have to confess though, my hubby handled this much differently than I did. I needed to talk about it, and find out as much information as I possibly could. He had to keep himself busy, and basically never thought about it until surgery day came. Let me tell you though...that bit him in the bum when they took our daughter back in for surgery, because he held all of those worries and emotions in, but...men are men. I hope you don't have to hide us from him...we don't bite!!!!! Welcome again!
P.S. Do you know what type of Cranio Miss Lily has? It sounds to me like coronal and possibly lambdoid?
10-04-2007, 06:29 AM
P.S. Do you know what type of Cranio Miss Lily has? It sounds to me like coronal and possibly lambdoid? We're still none the wiser as to what type Liy has. We still haven't heard from the hospital yet and our doctors haven't heard anything, either. I think its going to be a while now as we are just starting a round of postal strikes. I just hope its not too long. I hate not knowing anything
10-04-2007, 12:53 PM
They are adorable! Based on your description I was guessing coronal- the pic is hard to tell- one eye does appear smaller than the other- but that could always be how she is sitting to!
I totally get the husband thing- my husband was 'annoyed' (for lack of a better word) when he would find me on here-- I was on constantly- but I needed to talk about it, learn about it, see pictures, etc... He didn't really care to talk about it. Once a surgery date was deterimined I did have him look at the pictures though....and he's glad he did.
I suppose we're all different in how we handle things.......
10-04-2007, 04:26 PM
welcome to the site glad you're here!
10-05-2007, 03:28 AM
This is about the best photo we had on the camera which shows the way Lilys head is more prominent on one side
10-14-2007, 05:10 PM
Glad you found the site. Great group of people we have here. My husband was also of the kind that didn't want to think/talk about it and he was the one bawling when we took her in for surgery because of it. I felt better having more info and actually showed him little Fiona's pics which made him feel much better! Both of your daughters are gorgeous!
10-14-2007, 10:11 PM
It sounds like you have beautiful girls and a loving family. Im proud of you for being strong and doing everything in your power not only to educate yourself but to seek comfort. I have three children my newborn which is now 3mnths was diagnosed when he was born because of the obviousness of the appearance of his forehead. I am new to craniokids as well but Since the diagnosis of my baby. I have never felt so much comfort and support as I have here just by joining. I will be with you as well as you go through this. I may be just a step ahead, and can comfort you and tell you how things go as other wonderful people on this site have done for me. We can go through this together even though it may feel like we are worlds away!
10-17-2007, 09:39 PM
Hello Mandy! Welcome to the site. My son has Lambdoid synotosis. We found out through an ultra sound at 25 weeks. After a 3D CT scan confirmed it when he was 1 month old, surgery is schedule for this Monday. (I am sooo nervous) Anyways, the suture in the back on the right side had fused causing him to have a very flat side on the right side, his forehead is bulging out more on the right and his right ear is a little off from the other. This left side is starting to have a cone shape due not having room to expand on the right. The weight of his head is so heavy on the left side that he has been dx with torticollis (tilt of the head). He is currently in physical therapy and has improved alot but is still having trouble holding his head up at 5 1/2 months.
I hope you are able to find out more answers soon. I know it can be scary but this is a great support group.
01-10-2008, 02:20 PM
Hi again, all.
i just wanted to update you all as I feel like a bit of a fraud. I've not been on for so long.
Anyway, we finally got to see the specialist in November who told us that Lily doesn't have craniosynostosis, she has plagiocephally caused by her position in the womb but he told us they don't recommend the starbands as they have to be used for months and months with no guarantee (sp?) or proof that they work. They did, however recommend using a 'sleepcurve' mattress but they are only useful while the baby is sleeping in one position and not moving about and Lily had already reached that stage.
He also measured her head and she has what he said was quite a marked deformity. Her head was 2cm out then. We have to take her back to Liverpool in March to see the multidiscaplinary team. He also said she may still need an operation in the future, it all depends if it sorts itself out or not so I just wanted to say thank you all for listening when I needed someone to talk to and I'm sorry I wasted your time.
01-10-2008, 03:28 PM
I am glad to hear that she does not have cranio and I hope that she will not need any operations later. Hopefully her head shape will correct itself as she grows.
01-10-2008, 03:45 PM
Mandy....first of all you DID NOT waste anybody's time!!!! I'm glad she doesn't have cranio, keep in touch with us!!! :hugg
01-10-2008, 03:50 PM
Agreed! Please don't feel like a fraud. And nobody's time was wasted! Its nice to hear for once that someone's child DIDN'T have it. Hopefully, everything can be fixed without surgery.
01-10-2008, 08:35 PM
Congrats on your third darling little girl!
Glad she does not need surgery!
01-11-2008, 10:08 PM
Thank you so much for the update! I am so glad your little lady does not have cranio!! Please feel free to stick with us and keep us updated...you're one of us!!
01-12-2008, 12:16 PM
Wonderful update, that is so great she doesn't need to have surgery :) A big relief I am sure. Did the Dr's say after tests that they just couldn't be felt but they were still there..if you don't mind me asking? (I tried to search for ppl who had tests but came back negative and what the explaination was but can't seem to figure out how to do that)
Best wish you to you and your family! :) Joy
01-15-2008, 07:01 AM
They didn't actually do any tests. They went by the photos and the xrays the doctor at our hospital sent them. I think they wanted more photos but it was such a long journey and Lily was screaming by then that they said they would do it next time. All in all, it turned out to be a bit of a wasted journey!
We have to go back to our hospital in February then back to Liverpool in March so once again, I'll update you then.
And :thankyou for making me feel better
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