Bechet's 9 years old son

[Willdrich]

Hi everyone we are new ..my son Willdrich is 9 and be diagnosed with Bechet's. He started his medicine last week.Monday he were so sick headache stomach pain and vomit 10 times. His got inflammation in his liver..Will he be sick like this for 1 day in the beginning..they say it is cause by sugar?

[billi]

Hi and sorry your young son is so unwell. You don't say which medication he is on as this seems a severe reaction. Also which symptoms of Behcets is does he have? We are not doctors, we are here to share experiences and discuss our symptoms and medicines. How long has he been suffering with BD? If you could give us a little more information it would help us to help you. Please post again and we will do our best to reassure you.

Billi

[Willdrich in reply to billi]

Thank You for reply.. Excuse my English I'm Afrikaans Specialist said she thinks long time it started with stomach pain fever then headache and last year he started vomit and the get the sources on his tongue and then it seems like he bites it open like half of his tongue look like it burst open.. first I thought it cold source.. but my house Doctor sent me to Dermatologist.. he did prognosis but from the I went to paediatric he did mri and eeg and from there he sent me to Paediatric Rheumatologist.. she diagnose Willdrich with BD

Medication

Chlorguine 200mg mon to friday

Predisone

Cholcicine

and the Lexamil but he was on Lexamil before BD

Melanie

[Willdrich in reply to Willdrich]

We must go back after 3 months

Then she said she need to test his eyes?

[billi]

Colchicine is one of the main medicines for BD but doesn't alway suit everybody, and prednesilone is a steroid. I've never heard of the others but it could be a generic name and also he has medicines for other problems. Behcets is a complex illness and usually a patient at the onset is seen by rheumatology, dermatology, opthamology and if necessary neurology but usually for most of us the main doctor is rheumatologists. So from what you have told me you are in good hands. I would question the three months wait. If your child is having severe side effects I think you should speak to the doctor again, we have people who just can't take Colchicine or many of the medications due to side effects, so in my opinion if your child is very poorly you should see the doctor to discuss the meds. Also from now on you should keep a diary on a daily basis of your sons symptoms, medicines and reactions and his own feelings and how u well he is or if he has a fever. Also you need to take photos of any ulcers, rashes etc wherever they are and take all this with you to any appointment..

I do hope this information is of help and believe me your English is 100% better than my afrikana😉😊

There are other people on this site who have children with Behcets so you are not alone and I'm sure they would help you too.

Take care

Billi

[Willdrich in reply to billi]

Thank You so much

I still need to deal wit it

I do the calander thing

I will be in touch again

Again thank you

One Q?

What do your guys eat and drink?

[billi]

Well I can only speak for myself and family. We eat porridge or eggs for breakfast, soup or sandwich or salad for lunch and the evening meal is mostly chicken or turkey with occasional red meat or pork with lots of vegetables. I don't drink alcohol and only one cup of tea and/or coffee a day. I drink lots of water but although this is a good diet I still have Behcets.

Where are you living and what is your diet like?

Billi

[rooser1]

I reacted badly to colchicine initially too. Joanne Zeis told me to start on half a dose a day(1 pill a day) - instead of full dose (2 pills a day). helped me a lot. it took me six month to get use to half dose. half a dose works for me and i only "double up" in a flare.

it's funny you mentioned sugar- i changed my diet completely when diagnosed. i eat sugarfree and carb free. Meat- fats- vegetables. This, along with probiotics was what turned my life around. Another lady on here changed her ten yr old sons diet to mine (she also excluded dairy) and she said within one month he was playing again and was ulcer free. other than that- make sure he rests as much as possible. not watch movies or play on phone but actual sleep.

good luck and keep us posted please

[Rosie70 in reply to rooser1]

How strange I was diagnosed with BD a long time ago and have taken medication ever since, now have Diabetes type 2 and have cut out sugar from my diet although I do allow my self the odd sweet treat and my what were constant mouth ulcers have gone to the point where I mentioned it to my GP. Probably not the same for everyone but I am sure this is a factor that has helped me..xx

[Veteran250 in reply to Rosie70]

Hi Rosie, I'm new to the group, I have type 2 diabetes and disabled

[Willdrich]

Hi There...Thank you so much for your part of information..We really try the sugar thing but its very difficult child will stay child...

The doctor told me it can go in remission but can come back

We are in the first phase

What can all happen to him? Like Monday will he just be ill and lay down

[UKADMIN Partner Behcet's Syndrome Society]

Hi there, we do hope your son is soon feeling much better. If he complains of any problems with his eyes at all, please don't wait for the next appointment. It would be important to see a doctor straight away to get his eyes checked and to avoid possible damage. This is our Factsheet on BD and Children: behcets.org.uk/wp-content/u...

wishing you and your family all the best.

[Willdrich]

Thank You so much...