BWS & HI

[--PO--]

Hi, I'm a newbie here with my first post, I have a 1year and 20month old baby girl born with BWS and HI (Congenital Hyperinsulinism). At the moment she has the usual BWS large belly and left side hemi, with 2cm foot longer than other. She had her first tongue reduction 6months ago undertaken at GOSH which need x3 attempts as the stitches would hold in and her tounge would'nt heal due to her Octreotide and Sirolimus (HI) medication which makes her immune system very weak like chemotheraphy for cancer patients. Shes is always managed by GOSH in London so is there any BWS here from London?

Any BWS managed to claim disability living allowance successfully?

[BWS-Sh]

Hi

I live in London and have got a son almost same age as your daughter, 1 year and 22 months. Sorry no idea about the claim disability.

My son is suppose to go for a tongue reduction surgery in GOSH for now almost 7-8 months now. But every time his surgery date comes, either he gets sick, or the hospital cancels. It has happened 3 times.

Since last 3 months, the clinic has been closed. They keep promising that it will start soon, still nothing

I just wanted to know how was your experience ? My son doesn't seem to have any other condition other than very large tongue and left leg being 1.5 cm longer than other. They scan him every 6 months, and so far all seems fine. If you could share you experience, it would be really helpful.

Thanks

[--PO-- in reply to BWS-Sh]

Hiya, very sorry for the late reply, where about's in London are you from? Im in Kensington and Chelsea borough, maybe we can meet up and discuss and let our BWS babies bond together lol.

My daughter wasn't in too much pain when she had her surgery, even started to drink sips of water once woken up from surgery. Only frustrating issue was she needed x3 attempts of surgery as the stitches would not hold in and her tongue would'nt heal (split like a snake tongue) due to her Octreotide and Sirolimus (HI) medication which makes her immune system low (slowing healing process). She is the first one with this splitting stitches cases the Doctors have come across. Think we was discharged on the third day on each surgery as my daughter was able to drink milk from bottles even.

Although her tongue has nicely healed and is the probably the normal length but it is still very chunky so probably she might need another surgery in the future. The Speach and Language department from gosh is monitoring her progress as well.

My next concern for her is the left leg is little chunky and longer which makes her balance a bit unstable at times when walking or playing and cant really run just walks a little faster.

Feel free to email me if you have other questions I can email you photos of the tongue surgery if you like

[e-mail]

Regards

Po

[BWS-Sh in reply to --PO--]

Hi Po,

Don't know if you saw my email send to you @

[e-mail]

[ali-spud]

Hi. I'm sorry to hear all that you're going through. My son is 14 and things do get better with time. He has lots of BWS symptoms including enlarged tongue and hemi. We were never offered tongue reduction, I had no idea it was even possible until I joined a Facebook group and others were talking about tr. There are lots of familes and it's a closed group so I feel comfortable sharing in the group, lots of lovely people with lots of advice and all bws families are welcome to join. My son had leg lengthening surgery when he was 6 and will need further surgery as the difference has come back and increased. He also has special educational needs, issues with sleep, possible autism, behavioural issues to name but a few. I claim DLA for him and carers allowance. I would definitely recommend finding someone who's experienced in filling in DLA forms, my application was declined until I got help from an organisation called Menphys SOS. They are only in the Leicestershire area but they may be able to put you in touch with the right people in your area. Best of luck with everything x

[--PO-- in reply to ali-spud]

ali-spud, many thanks for your information on Menphys SOS, at what age was your son when you started claiming DLA?

Apart from leg lengthening did he need special shoes?

Po

[ali-spud in reply to --PO--]

He was about 18 - 24 months when I first applied successfully. I had to re apply when he was about 5 and I was told he was no longer eligible. I faught for a long time and he's was back on DLA by the time he was 8. He's always had a raise on his shoe apart from when the LLD was corrected with surgery. The difference has come back now and is increasing all the time so he'll need more surgery in the future. His raise has always been big and heavy which can make him trip or fall over. It gives him leg ache as it's heavy but when he doesn't wear it he still falls cos he's sounever and his back aches. IIt's important to mention all these sorts of things when filling in the forms. Even things like buying bigger clothes and buying them more frequently. It all makes a difference to the application. It tends to get me down when I fill in the forms, it all seems so negative but it really is worth it in the end

[BWS-Sh in reply to ali-spud]

Hi ali-spud,

I have similar experience. At age of 2, how much was the leg length difference for your son ?

Are there any other symptom I can see at age of 2 (he is 22 months old) ?

He has a very long tongue (really long) and 2cm difference of leg length.

Other than that I can't find any issue.

Please advice.