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Abnormailities on MRI scan

(12 Posts)
dietstartstmoz Wed 24-Aug-11 11:55:31

We have taken DS2 to see the paed again this morning, and she went through the results of his MRI scan he had back in April. There are abnormalities showing up and she is referring us to a specialist. He already has a dx of ASD and now they will test for genetic and metabolic abnormailities, although it could be nothing. He has a large head which is why he had the scan.
I have had to come home, i'm completely stunned and devastated. I can barely walk or type this. We're devastated.

coff33pot Wed 24-Aug-11 12:27:06

awwww diet hugs sad

I am so sorry you got upsetting news. What does she think is going on with your lovely DS? How long have you got to wait to see specialist?

Try not to worry diet I know its easier said than done. We are here for you x

dietstartstmoz Wed 24-Aug-11 12:38:40

She didn't give any indications at all, she said there were some abnormal areas showing up, and these required further investigation. Referring us to specialists and will request genetics and metabolic specialists. She said nothing may come back but I can't help but be panic stricken. He has ASD and when she diagnosed him he she measure his head and said it was large, he has a prominant forehead. She said it may take 4 weeks for us to get a letter, but appt should be 6 weeks or so, so we're thinking it will hopefully be in October. I'm so devastated, Ds is so gorgeous and such a lovely little boy. i can't bear to think he has something else. It's non-stop worry isn't it. We have been so happy for the past few days as Ds got his statement, and now this.

coff33pot Wed 24-Aug-11 12:54:52

Allow yourself time to be upset as it must be like a bombshell has been dropped in your lap and I really do feel for you.

Yes it is non stop worry but try and look at it this way to help you with the 6 weeks of waitng. You have had the past few days happy as he has got his statement so things are still on the up.

DS is the same DS he was yesterday. Still gorgeous and still lovely and is going to do great at school with his new statement smile This is just another hic cup yes but it isnt changing DS and whatever it is he has been dealing with it already along with the ASD so it isnt knew to him.

I am not saying this lightheartedly by anymeans as I know how I would feel in your shoes today. Focus on the good you have and I hope you get that letter quick xxx

madwomanintheattic Wed 24-Aug-11 19:34:21

hey diet. i have a friend with a 12yo with asd who was later discovered to have some brain abnormalities on mri. (his bro has also been found to have similar so they are looking into genetics etc too). so difficult to be given something new to fret about when you are just coming to terms with an initial something or other... but coff33 is right - he's exactly the same boy. it's good that they are investigating. unexpected and a shock, but at least you know they are looking for a cause and will have a better idea how to help/ put you in touch with other parents.

did they give you the actual mri results? there are a few mners around who might be able to help you translate/ make sense of stuff? i know i posted on skinuk when we had dd2's mri results as they were incomprehensible.

deep breath. cup of tea. fingers crossed for speedy referral. look after yourself x

dietstartstmoz Wed 24-Aug-11 20:12:31

Hi madwoman- no we didn't get the actual results. The paed (who is great) tried to explain but she is not an expert and didn't make any real sense of it. Hopefully our appointment will be quick but in reality I think it could be the end of oct/beginning of nov. I guess this is 'quick' but not quick enough for me.
Just feel a bit numb really, and it has really took shook me up. We are still very much coming to terms with his ASD dx which was only 5 months ago, he will start school in less than 2 weeks, and so worried about this and now this new thing today. I feel like I can't think straight. Thanks for the kind words, and yes, it is good that they are investigating.

dolfrog Wed 24-Aug-11 22:27:32

dietstartstmoz

MRI scans and interpreting the results with regard to ASD are still in the early stages of research, and practical use as part of the diagnostic process, and some of the scientific terminology is not always patient friendly.
From what i have managed to find, MRI was first used in ASD research back in 2001 Unusual brain growth patterns in early life in patients with autistic disorder An MRI study and for various reasons MRI research regarding ASD threw up a number of technical issues concerning the complexities of ASD, which are only now beginning to be resolved.
MRI Study of Minor Physical Anomaly in Childhood Autism Implicates Aberrant Neurodevelopment in Infancy
Your DS2 diagnosis of ASD was based on observed behavioral criteria , what is now being investigated is the underlying issues which can contribute to or cause ASD, which is a very new line of investigation and research, and will eventually become part of new approach of diagnosing what we currently know as ASD.
Researchers use MRI to compare various types of brain activity and measure volumes of grey matter. The comparisons are made between those who have ASD and controls who do not have ASD. And the the differences that may occur in the ASD groups tend to be referred to as abnormalities, when compared to the control groups results.

There has been a great deal of research trying to identify the candidate genes which can be responsible for ASD Genetics of autistic disorders: review and clinical implications which should be come part of Genetic Counselling. It is all very new, especially in the UK.

I hope this helps

BakeliteBelle Wed 24-Aug-11 23:15:47

When DS had his MRI aged 2, the local hospital interpreted the results and came up with a whole catalogue of abnormalities. On the basis of the scan, we were told DS would never walk, talk and would be profoundly disabled. The results were then interpreted by a the neuro-paeds at Guys and, lo and behold, the MRI was completely normal. DS, however, is anything but normal. He can walk and talk but he is severely disabled. A normal MRI does not mean a normal brain.

That was several years ago, so perhaps they can pick up more on the scans now. The waiting game is horrible, I feel for you. I hope it proves helpful in the long run though. There are lots of minor abnormalities as well as major ones.

StarlightMcKenzie Wed 24-Aug-11 23:28:07

Diet, I have had the misfortune to have had a lot of experience of brain scans, their interpretations and a number of meetings with brain consultants.

The general consensus is that loads of us have abnormalities in our brains, some which affect our functioning. However the brain is very clever and can. Often find ways to compensate for the problems. Only when the patient presents with social or observed difficulties outside the norm would those abnormalities be further investigated. The good news though for you is that this scan could offer you hope. You may not get another problem but instead a cause and possibly treatment.

Try really hard to take things as they come. I can't reassure you that you will have a positive outcome, but I can reassure you that it is possible.

crazycatlady Thu 25-Aug-11 23:00:46

Diet I don't know if it will help, but there's a thread running for a number of us who have DCs currently going through genetic and metabolic tests. I'm finding it very supportive as we're facing this with 5 month old DS. It can be a long, slow process.

The MRI results must have been a huge shock.

DS is having his first brain scan next Thursday. I am dreading it... don't have much more to add on this front than what's already been said, but echo that the results don't immediately point to a specific problem. DS's physio said today she has seen children with clear scan results who really struggle developmentally and others with terrible looking results who are pretty much NT.

crazycatlady Thu 25-Aug-11 23:02:20

p.s. DS has a large head too. No idea what it means yet.

madwomanintheattic Fri 26-Aug-11 14:42:25

from dd2's mri, she shouldn't be walking or talking. she does both (although wobbly lol) and has an iq of 142. grin the neuro was visibly shocked when dd2 walked into the room and had a conversation with her. she'd only seen pictures of the inside of her head before. the brain's a funny thing.

good luck for next week catlady x

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