Lily has to have a CAT scan. **UPDATE PG3**

[embo216]

Hi Girls,

Just looking for some support really. At my 20 week scan they found something wrong with Lily, she was diagnosed with something called C-Cam, there was a good chance we would lose her but she pulled through, shes such a fighter. Its basically cysts growing on her lungs, the problem was if it was growing to grow so much itd put pressure on her heart and cause cardiac arrest. Now shes born she has a greater risk of infections and problems with her lungs.

Well we had to fight for an appointment for when she was born, bloody NHS, and have just been up to addenbrooks in cambridge. She has to go for a Cat scan in 2 weeks, which means they have to put her on athestic, which terrifys me, but I know its got to be done so they can see whats going on in there. Just the thought of her being so helpless and lifeless scares me silly. If they find its still there she has to have an operation to remove it. Just seems to bloody unfair!

Fingers crossed for her

 

[Deise]

I hope she's ok!!

 

[Vickie]

Hope the scan goes well. My great niece (who is now 2) was diagnosed with a form of cancer when she was 9 months old (a tumor had grown along her spine) and she's had to be scanned every 3 months (for the first year--now it's every 4 months) and every time they put her under an anethestic. Always a scary thing, especially with a child that young

 

[Linzi]

Hope everything goes ok hun

xxx

 

[coz]

i really hope all goes well hun, must be horrible for you xxxxx

 

[welshcakes79]

fingers crossed for lily, hope everything turns out ok, xxx

 

[Lyns]

Oh hunny, what a scary time for you.

My daughter had her first CT scan at 6 weeks old...although she actually managed this with just 'feed and wrap'. Is your daughter quite easily settled after a feed? They may consider this if she is. Its worth asking. If she isn't under GA you may well be able to stay with her the whole time....we did with Morgandie. I just fed her to sleep, setteld her down with a blanket round her body, but her arms above her head and she slept through the lot.

She also spent a while day under a Gamma camera at 8 weeks old....and needed to lie completely still for half and hour at a time....I never believed it possible but she did great and the doctors were confident she'd manage OK.

However she also had her first general anaesthetic at 7 weeks old....and has had several since for both MRI scans and major surgery, and I promise you, you will be amazed at how resilient our LO's are. She comes round each time sounding very groggy and is completely outraged at what she's gone through, but is back to her usual smiley self within minutes....I promise! I breastfeed her as soon as she's awake, and it really seems to help bring her round more!

Morgandie has gone to sleep in my arms every time, although the very second she starts to drift, she is taken away from me and we are ushered out of the room. All our treatment has been at Gt Ormond St...and Addenbrooks are just s good with children, I know.

Please don't worry.....she will be fine. Thats silly , I know, you're a Mum...of course....we all worry, but I promise she will be fine. She's already proved what a fighter she is!

 

[Mamafy]

I really hope the scan goes well..xoxox

 

[embo216]

Oh hunny, what a scary time for you.

My daughter had her first CT scan at 6 weeks old...although she actually managed this with just 'feed and wrap'. Is your daughter quite easily settled after a feed? They may consider this if she is. Its worth asking. If she isn't under GA you may well be able to stay with her the whole time....we did with Morgandie. I just fed her to sleep, setteld her down with a blanket round her body, but her arms above her head and she slept through the lot.

She also spent a while day under a Gamma camera at 8 weeks old....and needed to lie completely still for half and hour at a time....I never believed it possible but she did great and the doctors were confident she'd manage OK.

However she also had her first general anaesthetic at 7 weeks old....and has had several since for both MRI scans and major surgery, and I promise you, you will be amazed at how resilient our LO's are. She comes round each time sounding very groggy and is completely outraged at what she's gone through, but is back to her usual smiley self within minutes....I promise! I breastfeed her as soon as she's awake, and it really seems to help bring her round more!

Morgandie has gone to sleep in my arms every time, although the very second she starts to drift, she is taken away from me and we are ushered out of the room. All our treatment has been at Gt Ormond St...and Addenbrooks are just s good with children, I know.

Please don't worry.....she will be fine. Thats silly , I know, you're a Mum...of course....we all worry, but I promise she will be fine. She's already proved what a fighter she is!

You dont know how helpful you have been! They never mentioned about the feed and wrap, that sounds promising I might give them a ring, lily usually goes for a lovely deep nap for 3 hours at about 10am so maybe they could work around that? But if it does come to having to put her to sleep at least I know now she should come round ok as you;ve said, I was so worried because when my OH went under it really affected him and he had a dodgy leg for ages! Your little girl by the way is so beautiful! What a lovely head of hair!

 

[xarlenex]

I hope the results are great! Lyns is right, we dont realise just how strong those tiny little babies can be xx

 

[Lyns]

Thanks....I think she's gorgeous, but then I'm her Mum!

Hope everything works out for you.....please feel free to get in touch if you want to chat more. More often than not, I found just chatting to other Mums who had been through similar, helped me cope tremendously

 

[natorgator]

I am a worried mom of a 2 year old and stumbled on to this site. My son had 2 CT scans of his abdomen, 1 with contrast and 1 without. Everything turned out to be normal. At the time, I wasn't even focused on radiation risk. Now I get on the internet and read all of this scary info on CT scans and possible link to cancer. Did any of your doctors discuss this with you? I am wondering if they might have given you some insight on the actual risks. I am so worried now that he had the CT scan, I would really appreciate anyone's response.

 

[embo216]

I am a worried mom of a 2 year old and stumbled on to this site. My son had 2 CT scans of his abdomen, 1 with contrast and 1 without. Everything turned out to be normal. At the time, I wasn't even focused on radiation risk. Now I get on the internet and read all of this scary info on CT scans and possible link to cancer. Did any of your doctors discuss this with you? I am wondering if they might have given you some insight on the actual risks. I am so worried now that he had the CT scan, I would really appreciate anyone's response.

Hi,

Lily had her CT scan the friday just gone (15th) this was her 2nd attempt, no doctors spoke to me about the risk but I knew she would be exposed to some radiation, they asked us to wear lead vests, and I know shes so small so there must have been a risk. But her condition could potentially be life threatening so we had no choice, she had to have it done. We find out the results next month, so fingers crossed it goes ok.

Im so glad your little boy got the all clear, its a catch 22 I think, we have to put them to some level of risk to protect them from something else. If it was too dangerous though I don't think they'd let us put our little ones through it. Lily had to go under general antestic too, that was horrible to watch

 

[Newt]

I hope everything goes well, thinking of you x

 

[Lyns]

I did ask about any risk and was told that although there was increased exposure to levels of radiation, that the benefits far outweighed the risk. As my baby daughter actually had cancer and we needed to get her scanned and treated immediately, it was a no brainer for us.

The doctors also compared it to other risk factors and told us she was more likely to be knocked down crossing the road than have problems resuting from the CT or MRI scan.....that put it in perspective for us.

I think everything you do nowadays seems to be a cancer risk and its just impossible to avoid. The chemotherapy that my daughter subsequently went through, to kill and shrink her tumour, puts her at increased risk of Leukaemia. Not by much, but believe me it felt awful having to sign consent for that to be the case, but it was her best chance....and thankfully one that so far has paid off.

Hope Lily's scan went better this time, Emily!

 

[Munchkin]

Embo, So sorry for what you and the family are going through. I don't have any advice to offer - the other mums who have been through it have done it.

Just wanted to offer some moral support. Hope you guys are hanging in there. Thinking of you and praying for good results.

 

[embo216]

I did ask about any risk and was told that although there was increased exposure to levels of radiation, that the benefits far outweighed the risk. As my baby daughter actually had cancer and we needed to get her scanned and treated immediately, it was a no brainer for us.

The doctors also compared it to other risk factors and told us she was more likely to be knocked down crossing the road than have problems resuting from the CT or MRI scan.....that put it in perspective for us.

I think everything you do nowadays seems to be a cancer risk and its just impossible to avoid. The chemotherapy that my daughter subsequently went through, to kill and shrink her tumour, puts her at increased risk of Leukaemia. Not by much, but believe me it felt awful having to sign consent for that to be the case, but it was her best chance....and thankfully one that so far has paid off.

Hope Lily's scan went better this time, Emily!

She was brilliant up until the scan, she didnt cry for her milk bless her, I told them I wanted to be there when she woke up from the anesthic, but they wouldnt let me, next thing I knew she was screaming in the next room, I just paniced and ran to her. Her poor throat was so sore, I could hear it in her cry. I asked if they could use gel on her eyes, they said they would, but they didnt, soo angry, Her eyes were sore, I think they put tape on her ears too because they were all grazed too.

She took a good 2 hours to calm down, think she was just mega confused and upset, she managed to take some milk and sleep but she hasnt been the same since, really off her milk, going to take her to docs tomorrow, just in case.

Just so glad its over, please let the results be clear, please! x

 

[embo216]

Embo, So sorry for what you and the family are going through. I don't have any advice to offer - the other mums who have been through it have done it.

Just wanted to offer some moral support. Hope you guys are hanging in there. Thinking of you and praying for good results.

Aww thank you so much, we have to be strong for lily, we were an absolute wreck when we found out, and I still am when we have to have things like the scan done, just counting down the days till we find out if shes a healthy baby at last! x

 

[Lyns]

Well honey, she certainly looks healthy enough in your avatar! She looks gorgeous!

Fingers crossed and you are all still in my prayers xxxx

 

[MummytoOscar]

hey, I left you a message a couple of days ago.

I really hope that all is ok

Me, Adam & Oscar are thinking of you x