Here some suggested organisations that offer expert advice on SN.

Russell silver syndrome

(3 Posts)
mouseymummy Wed 04-May-16 21:41:13

Does anyone else have a child with rss??

I'm off to see the paed for the first time since diagnosis and have a few questions for him already but wondering if any thing else needs to be added to my list?

shes on the waiting list for an endocrinologist appointment and I think we need a referral for diet support as she seems to be showing a few signs of hypoglycaemia at the moment.

I'm going to ask for a blood sugar monitor and also for a way to check her ketones and see if there's anything I can give her overnight to stop her blood sugars drifting as she sleeps.

Is there anything else you would add to the list?!?

flutterby77 Fri 06-May-16 22:27:29

Hi, my son was recently diagnosed with RSS. He's 20 months and has had hypoglycaemia issues. He sees a dietician regularly - once a month at the moment. He is fed by an Ng tube overnight to prevent overnight fasting hypoglycaemia but also to help with weight gain as he has difficulty chewing and also aspirates thin fluid. The metabolic doctors I saw recommended a corn starch solution given before bed as it releases slowly. I have a blood sugar monitor which I bought myself - I only test him in situations when I think he might have low blood sugar - so if he is sick and refusing food or if he pulls the tube out in the night.

There are a number of Facebook groups bringing together parents from all over the world to support each other, as you know it is rare and it is likely you will know more than your paediatrician.

Have you joined the magic foundation in the US? They have a russell silver syndrome handbook which you get if you are a member and apparently it is the bible for RSS parents.

There is also the child growth foundation you can join which is uk based.

Good luck, I am new to this myself although my sons issues have been going on since birth. We are seeing endocrinology in a few weeks for the first time. I'm in Australia (although I'm British) so things are a bit different here.

mouseymummy Sat 07-May-16 15:59:22

Hi!!

I've joined the magic fb group and I'm joining on Monday, when I get paid.

We're seeing endocrinology on the 2nd of June, my daughters paed said to ask for a blood sugar kit then.

I'll also speak to them regarding sleeping and the fasting then, she's showing some signs of being low first thing in the morning, I now know those signs. I've not known them before, she was only diagnosed in Feb and no one had any idea previous to that.

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