Beck with wiedemann syndrome

[Ar01yan]

I got a baby boy on 14/11/15.

He born with ompholocele minor(only small intestine was outside in a SAC). Baby went through an surgery for this on 27th Nov'15.During his surgery he was having Positive CRP .

Immediately after the surgery he went on oxygen and after that on ventilator for almost 4-5 days. Doctor told bcz of infection baby is having breathing problem. They started giving him the double dose of antibiotics.

They gave following medicine -

Inj Mero 250mg

Syp lizomed

Syp levipil

He got recovered and was okay for another 10days.

Then by mid of December.He started with a unique problem. He usually use to hold his breath once or twice in a day.

During this episode, his tongue colour use to change in blue colour and hold his breath for 5 minutes or sometime close to 10 minutes also. After this he himself use to get recover.

Again we consulted the paderitic doctor for this problem on 27th December 2015.

They admitted him and kept him under observation. EEG , CT scan and other reports were normal.

They concluded that he is having macroglossia problem.

During this time they thought of GER problem and when they conducted barium sallow test .the report was also normal.

Now, on 23rd Jan 2016. We admitted him to better hospital.

They saying that this is life threatening disease. Here doctors are saying that no surgery is required and we can't do anything.

Please help on this.

I am writing this detail with lot of hopes.

Thanks in advance.

[Amh22]

Hi, where are you? Usa? Uk?

What is the diagnostic on the second hospital?

Please enter to facebook.com/groups/7835762...

This is the best group for BWS, it is in Facebook. It is a closed group. You should send a request. You can post any question. There are a lot of parents, and people with BW (around the world). People with experience will recommend you the best hospitals, the best Doctors. That group is the best!!!

Please contact me if you have any questions.

Best regards.

[Songbird63 Administrator BWS Support]

Why is the hospital saying it is life threatening disease? BWS in itself is not life threatening. If the hospital feels the macroglossia is responsible for his breathing difficulties then they should operate on him. He needs to be assessed by a peadiatric craniofacial team and ENT/respiratory team with a sleep study to assess his apnoea.

If you say where you are from some members may be able to advise you where to seek advice. In the UK children with BWS macroglossia are assessed at Great Ormond Street Hospital in London.

[Ar01yan]

Hi,

Thanks alot for the positive response.

I m from India.

Right now , we are not going for surgery.

Paderitic surgeon want to do surgery with the help of plastic surgeon for the baby tongue.

After that they have plan to put tube in his neck for breathing and one tube in his stomach for food intake.

This complete process will take 20 days.

Please guide me if you want to know anything more.