What is this?: Hello everyone. My son is 9 months old... - LSN

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What is this?

slavka profile image
18 Replies

Hello everyone. My son is 9 months old and has LE on his left leg (toes to hips), left hand and sometimes on the left side of his face. 2 days ago I've noticed tiny red spots on all his limbs. Its on his both calfs and both arms. Should I worry about it?

It doesn' look like a rash more like little spots just under the skin.

He recently started crawling, could that be a reason?

Please any advice would be great, I'm getting crazy here :(

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slavka profile image
slavka
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18 Replies
Lynora profile image
Lynora

Where are you based slavka?

Is he irritated by the spots? Do you notice him scratching? If they persist over more than 3 days, get the doctor to have a look.

slavka profile image
slavka in reply to Lynora

Thank you Lynora for your reply. We live in London. Regarding red dots my son doesn't seem to be bothered by it. No temp or any other symptoms. I just dont know why he got those dots. Looks more like tiny tiny dots of red ink under his skin.

Lynora profile image
Lynora in reply to slavka

Is your boy being looked after by the team at St Georges? Professor Mortimer and Dr Kristiana Gordon? If yes, you can always send them a copy of the picture and ask for their opinion.

slavka profile image
slavka in reply to Lynora

Dear Lynora

You are absolutely right! I will do it straight away unfortunately we have long weekend now due to Easter Holiday so I cannot expect any reply until Tuesday. I thought maybe someone here have seen something like that before and can tell me what is happening.

Thank you Lynora for finding time to reply, it means alot for me

Lynora profile image
Lynora

Hi slavka- as it is a holiday weekend, and to save you worrying, give NHS 24 a call, tell them about his history and the recent appearance of the rash, and ask if he should be seen at Gt Ormond Street.

Bev-1966 profile image
Bev-1966

Art bless him, hope you find out soon what it is.

ssc123 profile image
ssc123

Hi Slavka, I think the advice that Lenora has given you is great. I would always get rashes checked by someone who understands lymphoedema. From my experience the usual childhood rashes/ spots etc always seem more concentrated and more severe on the lymphoedema effected limbs. As a precaution make sure you keep his skin moisturised with a recommend moisturiser- we use double base cream but there are lots available from your gp/ lymphoedema nurse. Hope you find some answers soon so you don’t spend the weekend worrying. Xx

Hi Slavka,

Has your little boy's rash changed since you posted the photograph ?

I hope he's well.

Wendy

slavka profile image
slavka

Thank you everyone for all your replies.

Dear Wendy, it has not changed at all. It's exactly the same since day one. I really don't know what to think. The good news is that Anthony will be seen at St George's this Friday - I will update this post after our appointment.

Once again thank you all for such a fantastic support :)

Lynora profile image
Lynora

Did they come up with a solution Slavka?

slavka profile image
slavka

Hello again.

Right, so we have been seen by Dr Gordon and Anthony's therapist. Dr Gordon took a very close look at Anthony and it looks like there's nothing to worry about. We didn't get a clear explanation of what that really is. It could be caused by dry skin. We started using double base from today and will see if that helps.

Lynora profile image
Lynora in reply to slavka

Good advice.

Have you been shown how to do SLD for him?

slavka profile image
slavka

A little bit. I do my best but it's not so easy. Every time I start he runs away :))

Lynora profile image
Lynora in reply to slavka

Good time to do it is when he’s chilling & ready for bed.

slavka profile image
slavka in reply to Lynora

Thank you Lynora for all your replies, you are a real star here!

My son is at that age when even changing a nappy is a great challange. He just won't stay still, needs to explore everything and lying in bed it or on the floor is a wasted time in his opinion :)

I was shown how to do night time bandaging and I have to say it's fantastic. Is it normal that we get better results than by wearing garments during the day?

Lynora profile image
Lynora in reply to slavka

Yes, totally normal - all related to gravity - the fact that he's lying horizontal (unless he's part bat ( :) ), the bandaging is helping to move the lymph towards his abdomen - and as he is still so young, he will be breathing using his abdomen, so drainage is encouraged into the large collecting vessel (cisterna chyli).

talk with your dr and find a LE therapist for infants etc to guide you and help with you formula to restrict excessive sugars salts etc. best wishes....if crawling maybe a light PJ or clothing so less rubbing on flooring going nuts does not help... relax breathe

do the research ... handle the challenge and love your baby ....

slavka profile image
slavka

The rash is gone. Since we use double base we have no more skin problems however I still have no idea what it was.

Thank you everyone for taking time to reply to me

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