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Original poster

Lump in abdomen (pic attached)

35 replies

PurpleThistles84 · 31/07/2023 17:41

My 4 year old DS has an ultrasound on Friday after I noticed a large lump in his abdomen and took him to the doctor. For context, my son has an incredibly rare genetic disorder and can't walk yet. I wondered if anyone else's child has had a lump like my sons and if so, what it was? I'm driving myself crazy with waiting and google.

OP posts:
Boatshoes · 31/07/2023 20:53

No advice but hoping all is OK. Is the lump soft or hard? Hoping all goes well on Friday x

Kaiken · 31/07/2023 20:55

Does he have NF1?

PineappleMint · 31/07/2023 21:02

i totally understand why you would be freaking out but more often than not it’s something totally ok, or totally fixable. It could be a straightforward lipoma, it could be impacted poo, even if he seems to be going to the loo normally. I know it’s going to be a really long wait until Friday, it might help to have as many distractions and as much company as you can and try to avoid googling, you’ll always find the disaster stories that way. It’s also worth letting the ultrasound tech know out of your child’s earshot that you are beside yourself over what this might be and ask if they can give you some indication of what they see, or if not what the timescales are for hearing the results - they are often really kind especially when it involves your little one. I really hope it’s good news and you get some speedy reassurance.

Original poster
PurpleThistles84 · 31/07/2023 21:27

Thanks for the replies, I know I shouldn't google, it's so hard not to sometimes. He doesn't have NF1, he has KBG syndrome and the lump is solid. There is a second lump higher up too, above his belly button and to the right, but it is smaller so not visible.

OP posts:
MissHoollie · 31/07/2023 21:28

My first thought is a hernia
Hope he's ok.

Queenfreak · 31/07/2023 21:31

My first thought is a hernia. Is it painful at all?
Agree with the advice from PP, distraction may help this week.

frolp · 31/07/2023 21:42

I would email his geneticist to let them know what is going on. They would be best places to know if there is anything related to his syndrome that needs looking out for.

Original poster
PurpleThistles84 · 01/08/2023 02:58

It does not hurt him. There are no other symptoms, just the lumps. The geneticist is not involved anymore now he has the diagnosis and honestly, there isn't much they know about KBG. I am in a group for KBG and asked in there. It doesn't seem to be a KBG thing. The KBG is 1 in 38 million chance (supposedly) and so there is not a great deal of research available, in fact I have had to take part in quite a few surveys etc about my son for research purposes. I appreciate all the replies, thank you. I'm just very afraid it could be something like neuroblastoma but I'm trying not to dwell on that

OP posts:
PutYourBackIntoit · 01/08/2023 08:33

It must be so hard to wait until Friday, i really feel for you.
Have you got any plans for today, Wed or Thursday? I find it helps to have something on each day, no matter how simple.

Original poster
PurpleThistles84 · 01/08/2023 11:42

Thank you, I don't really have plans but I am keeping myself fairly busy. I know there is nothing to be done until Friday, it's hard feeling so helpless though. I know I am extremely protective of my DS, he had a very rough start and then all the health things he has dealt with. Sometimes it seems he just never gets a break.

OP posts:
Robotik · 01/08/2023 18:57

Hi, could it be a hernia? I’m sorry you’ve to wait til Friday it must be awful.

nocoolnamesleft · 01/08/2023 20:21

Very hard to tell anything from a photo, so glad to hear you have an USS soon. The two relatively innocent things that come to mind are is he passing good volume wees? A really distended bladder can feel pretty firm. Is he pooing well? Lumps of poo can appear in the strangest places. Wishing you a non worrying result.

Boatshoes · 04/08/2023 08:24

Best of luck today, @PurpleThistles84 - hope all goes well with the USS and it’s not worrying news x

Original poster
PurpleThistles84 · 04/08/2023 10:21

Thank you. I'm feeling really nervous. My DS is passing urine normally and has consistently dirty nappies. He is happy in himself and is eating and drinking fine. The ultrasound is at 4.30pm.

OP posts:
Boatshoes · 04/08/2023 10:47

Will be thinking of you, hope all goes well x

Original poster
PurpleThistles84 · 04/08/2023 17:19

No answers yet. The radiographer said he doesn't know what it is. It is a lump, it is behind his bladder and pushing his bladder to the right. It has some calcification and I saw him writing the word lesion. He is being referred for an MRI. He said it isn't constipation or a hernia. I think its a tumour. Whether it is cancerous or not, is really the question. I am terrified for my son.

OP posts:
Muckysmucky · 04/08/2023 17:22

That’s a very large slim abdomen for a 4 year old

SM4713 · 04/08/2023 17:24

I have no advice OP, but sending you a hug x

Original poster
PurpleThistles84 · 04/08/2023 17:29

He has KBG syndrome. Weight issues is a feature of it. He also has his arms reached up above his head.

OP posts:
PineappleMint · 04/08/2023 18:05

I’m so sorry today’s scan wasn’t more reassuring, Thistles. I totally understand you’re terrified and thinking the worst, it’s a horrible position to be in. There is still plenty of benign things it could be, but in your position (my DC was referred for an urgent MRI based on some worrying symptoms) I was an absolute basket case. It was much easier when I actually had a tumour diagnosed for me than fearing that my DC might have. Have you any idea when the MRI scan might happen? I hope you aren’t waiting too long. It might also be worth having a chat to your GP if you think you might need help during the wait, they can sometimes offer options for help with anxiety or sleep on a short term basis.

Boatshoes · 04/08/2023 19:12

Sending you lots of love, OP. Hope you get an answer soon x

Louoby · 04/08/2023 19:20

Thinking of you. I hope you get some good news with your MRI results. Try to stay positive for now. Keep us updated x

Emmamoo89 · 04/08/2023 19:22

Thinking of you. Sending you love ❤️

SportyMumOf2 · 04/08/2023 22:54

I hope you have results soon! Thinking of you x

thaegumathteth · 04/08/2023 23:00

Hope you get positive news soon