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Left arm bigger than right- anyone have any experience of this

(15 Posts)
whitestwhites Fri 13-Aug-10 21:01:59

My 6 week old DS has one arm (Left) bigger than the right. I noticed this about week ago and at first thought he may have gotten it caught in the Baby Bjorn but the swelling persisted and I took him to the Paediatrician yesterday.
She said she thought the whole arm was bigger ( ie not just swollen, bones longer and bigger) She has scheduled him for a chest X Ray and arm x rays next Monday. She admitted she hadn't a clue what might be causing the problem.

The left arm is maybe 50% larger than the right, sometimes it is (mildly) mottled especially if he's been crying or distressed.

Other than that he is perfect. There is no sign that he's ever in pain or anything

Has anyone any experience of this? Anyone have any idea what might be going on.
I'm really worried.
Thanks

ragged Sat 14-Aug-10 08:15:44

Bodily asymetry is more common than you might think. This story might interest you.

whitestwhites Sat 14-Aug-10 13:16:22

Thanks Ragged,
interesting story, but I'm not sure that that's what my DS has.
DSs arm is not noticably bigger ( maybe 50% is an overestimation) to anyone else but us at the moment anyhow. He seems to be moving it normally.
We are in the US with good health insurance so if there is an unusual problem hopefully we won't have a problem getting a second opinion in one of those big centres.
So upset though, had a difficult pregnancy and devastated my DS isn't "perfect" ( although he is to me)

whitestwhites Mon 16-Aug-10 02:21:31

bumping

MamaChris Mon 16-Aug-10 05:36:22

I have one leg and foot longer than the other. It does cause me some hip/pelvis pain when pregnant, and I've never been the best athlete on land (good with swimming/cycling though). Otherwise doesn't bother me at all. I don't think asymmetry is particularly uncommon, and if your DS's arm is not noticeably bigger to anyone else 50% probably is an over-estimation!

I have no idea what else it could be, but if it's simple asymmetry, try not to worry. It doesn't make your DS any less perfect, just more unique wink

whitestwhites Tue 17-Aug-10 18:12:32

MamaChris
Thanks for replying. He had x rays yesterday and his left arm is 10-15% larger than the right.
His paediatrician thinks he may have Beckwith-Wiedeman Syndrome.
books.google.com/books?id=tTz4-MmNwzkC&dq=oxford+desk+reference+clinical+genetics&printsec=frontcove r&source=bn&hl=en&ei=bcBqTODDCcP88Abb59zyAg&sa=X&oi=book_result&ct=result&resnum=4&ved=0CDUQ6AEwAw#v =onepage&q&f=false

We are going to see a geneticist next week to check if he has any other abnormalities. He has an umbilical hernia too ( small ) which is why they are thinking this is a genetic syndrome (ie two things from the list)

I haven't noticed any other abnormalities and so far he seems developmentally normal and is thriving.
I'm trying not to worry - as you say these may just be things that are unique to him.

Will have to wait and see I suppose

cagb Wed 18-Aug-10 17:02:03

Hi whitestwhites
Amazed to come across someone in the same position as me! I only have a minute to reply now, but will be back on with more detail later.
I have a 5 yr old son born with his left forearm and hand larger than his right. I'm not sure how much i will be able to help as i have little real info myself, but sometimes just knowing someone is in the same situation as you can help i think.
You say he seems well in himself, does he have any other symptoms / unusual features of note - was he a larger than average baby , does he have any birthmarks etc? Are you managing to find out much from the doctors? We have really struggled to find anyone with much knowledge which really doesn't help!
Congratulations on his birth - i know well the worry you will be going through but do try and put that to one side and enjoy him.
Be back with more later - have a hungry family to feed!

whitestwhites Wed 18-Aug-10 20:51:21

Hi Cagb
So happy you replied.
I only have a minute to reply too but in brief, he was born at 37 weeks - induced due to a separate issue.
7lb 10oz at birth, on the higher side of normal for 37 weeks but not unusual at all.
He has an umbilical hernia ( small) and a small reddish birthmark on his side.

He's otherwise perfect ( he's perfect to me anyhow)

I had multiple scans and tests done during the pg due to previous mc and also an unusual blood antibody. Nothing abnormal at all bar the antibody. I also had a CVS and he had a normal karyotype.

I'm in the US with access to a major medical centre so luckily will get quicker referral than we would in the UK ( I am assuming that's where you are). I don't really want him to have any invasive tests if it's not neccessary though.

We are seeing a geneticist next week so that might give us some answers ( but with a normal karyotype maybe not)
His pediatrician admits that she has no idea what this could be, she just googled and came up with the Beckwith Wiedemann Syndrome but since he only has 2 features is not sure ( at least she's honest)

How is your son doing? Has it caused him any problems? What if any tests has he had.
Looking forward to hearing from you.

cagb Thu 19-Aug-10 12:32:14

Hi whitest

Sorry i didn't get the chance to get back to you last night. I'm not really sure where to start with our story, as it is quite lengthy i may leave it until another time. Beckwith Wiedemann syndrome has never been mentioned as a possibility for our son, so i don't have any knowledge of that, but i may be able to give you a 'laymans' view on some of the other possibilities once you have seen your geneticist. What i do know however is that all of the syndromes relating to overgrowth of a limb are very rare. I guess there is some comfort in this, as your sons larger arm may well turn out to be just 'one of those things', something that makes him unique as another poster said. I also know that the rareness of the conditions means that many medics have little knowledge of them which can lead to some frustrations! We have seen doctors that have been unable to tell us anything, and like you i appreciate their honesty, but we have also had doctors wade in with a diagnosis when they know less about the conditions than we do! I am sure your geneticist will be the best first stop for information.

But to answer your questions (as this is already turning into a huge post!, our son is fit and well, and the problem with his arm has not stopped him doing anything. He is a joy, and a normal cheeky 5 year old! He has had some testing, but like you i was not keen to do too much, certainly in the early days. He has had xrays, ultrasound, various blood tests (not really sure what for!). He also has an operation on his hand when he was 2 yrs old to remove some excess tissue, and some genetic testing was done on the tissue, but with no significant results.
We are hoping we may get some reliable answers quite soon as we now have a referral to see a team at Great Ormond Street hospital in London which we have found specialises in overgrowth conditions.

I know what the worry is like and found it all very difficult to cope with, particularly in the early days. So please do try to enjoy these precious first few weeks, they really are over too soon!

I would be happy to talk more in private, off board, if you would like to. Please let me know if there is anything else you owuld like to know, and tell me more about your son when you have a chance.

I do hope your geneticist appointment goes well and you get some answers - let me know how you get on.

whitestwhites Thu 19-Aug-10 13:31:11

Thanks cagb.
I'll PM you when I get a chance ( take note have 7 week old in the house so might take me a while grin)

whitestwhites Thu 19-Aug-10 13:32:29

Oh, cagb, could you revise your email options so I can send you a PM?

Bacofoil Thu 19-Aug-10 13:36:39

There was a mner recently whose baby dd's arm would change colour when she cried - turned out to be a pinched blood vessel I think. but I don't think the arm was a different size to the ohter.

whitestwhites Thu 19-Aug-10 14:18:13

Bacofoil,
Thanks, I have been following that thread too. My DS's arm doesn't change colour.. although it has been slightly mottled a few times but nothing out of the ordinary.
I had been wondering about a pinched or underdeveloped blood vessel but since the bones are bigger I suppose that rules that out.
Could be wrong though.

cagb Thu 19-Aug-10 14:23:04

Hi whitest
Having few problems doing this! Have changed enail preferences and paid the fee, so hopefully ok now! If not let me know and i will try again.

Parkernat Tue 09-Aug-11 22:28:17

My daughter has beckwith-wiedemann syndrome, did either of you find out if this was the cause?

Natasha

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