Behcet's Syndrome Society
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Looking for tools to help my teen cope

Hi,

I'm new here. I'm looking for resources that could help my son cope with BD. He'll be 17 soon. He was diagnosed last year has been on & off of prednisone most of that time. He's become depressed & isolated himself more lately, which is a side-effect of the drug, but it seems that every time they take him off it, a flare up occurs.

A support group nearby would be ideal so that he can meet people with BD, but if online is all we have, we'll take it!

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Non teen here. I can’t fathom what your son is going through. I’ve struggled a lot since diagnosis, and I at least got to enjoy about 10 years of normal adult life. Your son has been robbed of that, and I think depression is pretty much inevitable as he mourns the loss of what could have been. I went to a therapist who specialised in chronic illness, and I imagine your son may benefit from something like that. After having so many people tell me “it’ll be okay” I found it extremely helpful for my therapist to tell me I was allowed to feel devastated, because loss of normalcy is devastating. She then said I had to learn to accept that while things wouldn’t be normal, they also wouldn’t necessarily be horrible .

Also, my mother has been my strongest support system through all of this. Don’t underestimate how much he needs you and, even if he’s not saying it, appreciates you. He’s lucky to have you!

Sorry I couldn’t be more help but definitely here if you need a sounding boatd. All the best xo

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Thank you. Yes, we've told him it's OK & normal to be upset, but it's learning to accept it that is difficult for him (or anyone I think). I'm sure it'll come one day, we just need to keep at it. Thanks for your reply.

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Hi QCbd,.

Sorry to hear about your son but how lucky he is to have a proactive parent who can see his issues and is ready to ask for help for them.

I am waiting for my first appointment to get a diagnosis after 11years , you can read my post if you like , I can't give you help about medication , but as a parent of two teenage girls who have had to cope with my illness , and knowledge of their friends with similar depression and isolation issues to your son I may have some advice.

Unfortunately, you have two separate issues here. First, the BD and the effects the drug could have. Second, as a teenager , your son is displaying the more typical reactions of depression and withdrawal from society that all teenagers display when they are hit with a problem that upsets them or gives them stress.

Could I ask you some more questions first?

How does the BD effect him, does he get skin ulcers that may be visible or has it increased his acne or does he have other ulcers that make him feel uncomfortable doing normal things?

What did he like to do before BD and does he have a close group of friends that you might know?

Where are you in the country?

It will probably be good to find a BD group near you , but I would not be surprised that the majority of its members are older than your son and although they could give him advice on coping with BD he may not really want to spend his time socialising with them when he already feels isolated.

Find the group and maybe go there first as a carer yourself , you may find there are alot of teens, but if not they may be able to give you more advice on how to help as a carer.

It might be good to see if there is a chatroom or Facebook site for teenage BD sufferers that he could get in contact with or just follow to get support, teens often feel more comfortable getting help that way and finding their own feet.

Do you do stuff as a family, like eating dinner together, going out occasionally?

If not pretending that you are getting old and want to be amused has worked for my friend whose daughter has isolation issues, they eat dinner now everyday giving the family quality time to chat, find out about each others day and sometimes the teen will give up info on how they feel , more often they just benefit from the conversation.

See if you can find any clubs or societies in your area that have something to do with what he is really interested in , let him know and ask which thing he fancies doing , and if he has any friends who would like to book in too, learning to get back into the world, seeing their friends won't be treating them with pity, and realising that they can still do all the cool stuff they wanted to with a disease is far more important to getting them back to a happy place .

Help groups are often great for adults but add to the feeling of stigma for newly diagnosed teens, they have the great , now I'm I'll and the only people I am allowed to be with is other sick people frame of mind , unfortunately.

Realise this is a long message but dealing with teens with depression issues is a serious thing , no matter what the cause, please do send me some more info , either in reply or a private message and I can give you some more strategies to help you help your son feel more like himself again.

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Oh,

Extra point.

I wouldn't begin at the therapist route yet.

Although , helpful in time if the depression is ongoing in a teenager with illness , the first reaction of teens is often to feel even more isolated and labelled by being told they need some therapy.

Try some of the more proactive ideas to help him heal himself first that I have sent you ( I will send more ideas when you give me some more info, including a bit of research on stuff he might like to do) and if that does not help , then consider the therapy route.

Some of the best therapy is them getting to spend time with their friends , Is he still at school or college? I can also send you some tips on how to help him see his friends

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Hi. Thanks for all the info. We're near Ottawa. Someone had mentioned a BD group on FB, but I haven't found it. To answer your questions, his friends don't know about the illness. I personally don't know his friends because they don't live in the neighbourhood & never come around. I learned that teenage boys don't necessarily leave the house to hang out...they play video games online with each other instead! Apparently it's normal, but I'm having trouble adapting to this technological era! =)

Hi has ulcers in his mouth (almost always) & on his skin (mainly feet & southern regions). The prednisone gave him severe acne on chest & back. The ulcers are mainly hidden, except for a few recurrent ones on his face (but people think it's acne).

He used to love swimming, playing water polo & football. He can swim at our house in the summer, but can't go to public pools anymore.

He also had to quit football because he must avoid cuts & abrasions since they usually lead to flare-ups. The first real flare-up put him in the hospital on an IV for 4 days. It was confusing for us to see that a sore on his toe could result in almost losing a foot! Drs at the children's hospital worked for over 1yr to determine what he had. They shared his case with Drs around the world & were finally able to diagnose him. I can't imagine waiting 11yrs.

We tend to be outside a lot (playing street hockey, biking, etc) , so we force him to come outside at least once per wknd if it's nice out. He usually ends up having fun.

We also have supper as a family every night (we're old fashioned that way). So we force him to atleast be present (if not participating) in the family.

As you said, depression is a very serious issue for anyone, especially teens who lack in maturity & perhaps coping skill & tools. That's why we're working so hard (& probably annoying for him) to bring him back into society & help him deal with this life.

Thanks for taking the time to reply & for tips about groups & therapy. We'll see what we can find.

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Glad to hear from you,

I can completely understand your sons anger, frustration , bouts of depression and tendency to choose isolation based on what you have written about the severity of his condition.

I don't even put down experiencing these emotions to age , just think about how much you might want to go out, be seen by others or feel comfortable doing things or talking about your symptoms even with your best friends if you had the same conditions. As teenagers they feel even less comfortable talking about personal stuff with friends , in case it gets around and other people treat you badly because they are immature.

You certainly seem to be doing everything you can to keep him active and social , even if it is mainly within your family group. Is he still swimming without a reaction in your own pool?

It is a shame that you haven't found the FB page yet, but as my research seems to see, because BD is a rarer disease and also has far less young sufferers it may be hard to BD specific groups to join yourself, but finding a FB group or local group for carers who look after teens with different types of chronic , autoimmune or long term conditions will bring up some helpful tips and give you someone to talk to for support.

The friends thing is always an issue when they do alot of their interaction online or live further away. Did he have any team members that you know and he got on with , or does he have siblings or other young relatives that you could get over to do stuff, without making the offers specific to trying to help him with his condition.

One good thing you can do , although it is hard , is to sit down and honestly and openly ask him how he's feeling one on one , tell him you need to talk because just like him you are finding it hard and that you like him feel like you have no control over how to help , and then, ask him to let you know how he is really feeling , what he misses most, what is making him angry , and most importantly, what he feels like he wants to do and how he would like you to help him. Tell him you understand that he might find it hard to talk face to face on these things so ask him to sit and write it all down instead if he wants, it can be in two lists, how I am feeling and what I want to do or what might make me feel better. He only needs to give you the proactive list if he wants . This is probably the most important tip I can give you or anybody trying to get back control with a long term illness.

You could let him know that you have anonymously asked for advice for both of you from a health site too if you wish, and that a person on that site with similar issues has offered to give him their email ( me!) so that he can use me as an anonymous electronic brick wall to vent at , a wall that can also give advice back , he can write and it would be in confidence ( even from yourself , this might help) . Just getting the chance to vent like on this site can help lots but teens don't generally like to do it on open forums.

You , too , are welcome to contact me via private chat to get my email for the same support, please do get in touch and perhaps we can get emotional side of recovering on the way together.

Hope to hear from you soon

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Oh, being English , I am not sure which form of football you are talking about, American or soccer?

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American football. =) But really, any sport that can cause skin to open is to be avoided.

Thankfully he can swim in our pool (only 3mths of the year because of the weather!), but he needs to make sure to dry off completely before getting dressed. Humidity tens to cause flare-ups as well.

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Great, please keep me posted , hope the other advice helps and I am happily ready and waiting for your call, email if you want to continue to vent.

Are you in a very cold, snowy area, is it possible to make your pool all weather useable ?

Does he take part in the street hockey and swimming or biking without difficulty? Maybe these are some new sports clubs he could get into , just give the team managers the info confidentially on his BD needs.

Does he keep out of public pools because he doesn't feel comfortable being undressed in public or because of risk of flare ups from pool conditions ?

Do you know if he has issues with fresh or salt water ?

Would he be interested in taking a new approach with his team, not in play, I assume his school or college know of his condition, perhaps he could get involved in being part of the coaching side of the team instead, as a coaching assistant, you could talk it through with his old coach.

What non sport related stuff does he love that he could get into on a more social or group level, gaming, art, film , programming , music , outdoor stuff?

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Hi & I feel you. I have a soon to be 15yr old with BD. Was diagnosed a year ago. We have not found a teen, mens, woman's, adult or anything support group in our area of Northern California. We live in a rural area so we're not too surprised. Where are you from? How long has your teen been suffering and what are some symptoms?

I too am looking for some kind of peer to peer support group. Parent support group. Whatever we can get.

Keep in touch please! You're the FIRST teen parent I've met anywhere on the web! BD is that rare 😯

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Hi ,

How is your son coping, did you read my message above?

Are there any things that you are doing to help keep your son positive or show him life can go on and be fun despite BD that might help our new friend and other people with teens with BD?

Do you know if there is a Facebook or web community for teens with BD or carers of teens with BD?

If not, perhaps you and QCbd could keep in touch with each other to give each other support and advice when the teens inevitably go through stuff.

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Hi! How's your teen coping with it? Did it take a while before they realized what it meant?? I think mine just recently started reacting to the diagnosis (although it's been more than a yr).

We're in Quebec (at the ON boarder).

I had never even heard of BD until he was diagnosed. It's really a horrific situation for a teen to deal with & maybe one day try to explain it to friends (or a potential partner one day)!

Thankfully his ulcers aren't visible, but they occur often & are painful.

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Hi QCbd,

My son copes on a day to day basis. When he's feeling well and has minimal or no blisters/stmptoms life is great of course. As soon as he feels the onset of fatuige, a headache or joint pain his world falls apart. He's sad and feels like he's missing out on life. He has the "why me" questions when symptoms are overwhelming.

He already knew what BD was because I have a very severe case of Neuro BD. He knows what is to come if he doesn't take care of himself and do what the Drs tell him to.

He has kept the BD diagnosis from his friends and says "He's sick". His friends have come to me for answers. They understand that his immune system is not cooperating and he can get exaughsted quickly and needs to stay out of the direct sun, but that's the extent of the info given. They are supportive.

As time goes on these boys will learn to adapt to the sudden onset of flares. Its getting them thru the "this is real and this is your life now" acceptance that is going to be difficult. I still struggle with this reality still!

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You have definitely hit the nail on the head on the balance of information that is required to give their friends so that they are understanding without making your son feel uncomfortable about giving too much information.

When they get used to just saying, I've got a thing, or I'm I'll with something, no one can catch , but it is a pain in the butt, and it makes me really tired and there's some stuff I can't do so often and some stuff I have had to give up, sometimes I'll have to be off school, it's a pain but I just wanted you to know , I'm cool really but I just wanted you to know , that's when things get better with their social life and in their own heads too.

Having BD yourself, you know, that it's not just teens whose feelings fall through the fall in a Why Me!! way when a flare up happens , especially if things have been quiet for a while , us adults go through it too.

Bizarrely, despite having it happen time and again , it still seems to give you a bit of a shock each time a flare up starts again, no matter what immune disease you have. Your experience and the fact that you continue with the disease will help him keep positive though, and the strategies that you use to keep your brain positive are equally useful for him at the age he is now.

Good luck to you both

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Hi my son is 22 and has had really tough time since September. He has had to have his large colon removed, has had pancreatitis, ulcers, abscesses, erythema nodosum, damaged nerves due to inflammation, folliculitis so has depression. He is starting azathioprine on Monday which I hope will see the end of steroids for him. Where are you from? We are in the midlands, UK (near Alton towers). Is he on FB? Xx

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That's alot for anyone to go through, especially one so young.

Good luck to you and your son.

I wrote a longer post to QCBD above, with some advice about my own experience of dealing with teens who have dealt with other illnesses that cause them depression or isolation and some first tips.

I also mentioned that often it is adults and carers of young people that benefit most from the help and support of getting together with other sufferers at clubs , perhaps you could get together on Facebook to help each other and others who are parents of BD sufferers with support when your son's have dark days.

Does your son take part in any new sports or activities that cause him less or no flare ups that you could suggest to others to recommend to their own kids , seeing you can still have a fun life doing ordinary stuff is a huge boost to the state of mind of young people with a long term illness and brings them back out of isolation

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Oh my, I'm sorry to hear what your son is going through! Has he been ill a long time?

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Helo QCbd,

I’m sorry to hear about your son’s troubles. I can tell you from experience that prednisone is externally difficult as it effects mood and caused me a lot of anxiety. Prednisone is only made worse because even though it works, it puts us into a non stop rebounding effect which causes all symptoms to return with a vengeance once we get down to a small dose or come off.

For me breaking this rebound effect was the most difficult thing which took a few years but it finally allowed for some sort of regularity.

The only way I was able to stop it was to stop the ulcers as they are starting. After years of trying I finally found out that treating them with clobestasol propionate “ointment” for the skin and clobestasol proponate “gel” for the mouth was just what I needed. The only issue is that clobetasol propionate gel is not necessarily approved for oral use so I had to have a pharmacist contact the manufacture to determine whether it was toxic for oral use and it turned out that it wasn’t particularly dangerous. Just not approved for oral use cause it hasn’t gone through testing. I continue to use this instant treatment to get rid of ulcers within a few days and can stop ulcers from fully developing within a day or 2 when I feel something that may start.

Using this method along with my standard non steroidal medications (imuran) was the only way to get away from the horrific prednisone rebound.

Wishing him the best of luck

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Thank u will look into getting him that. He has decided to go cold turkey and has stopped steroids! Started immunotherapy today so fingers crossed! Xx

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Good luck. Keep me posted. Wishing him the best

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Thanks for the info! I'll see what he's using (too many big names for me to remember).

Yes, prednisone was great in the beginning, but as they reduce the dosage, it wreaks havoc. The flare-ups are inevitable as the dose is reduced! he has a mouthwash, but it doesn't seem to work. He also has a topical ointment that seems to cure anything (on healthy people), but it doesn't work as quickly on his ulcers.

Thank you for taking the time to reply.

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JulienF,

That's brilliant!

I have not read about that medication on anyone elses posts , perhaps you have found something that could really help alot of sufferers of BD ulcers .

Would you be willing to write a post under the title, Medication I have found successful for my BD Ulcers, so everyone gets to read about it and considerate on the BSS group, not just the people who are reading this thread.

Good luck, and thank you for your advice to me on my post too.

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Absolutely. I will do it right away.

Its been about a year I have been meaning to write about what has worked for me in order to help those who are going through what I had such a hard time with.

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Excellent, look forward to seeing it.

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Goodness! Thank you all for your replies! I'll try to answer each of you individually.

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Get a referral to a Dermatologist. My four kids as teens had good response to Roaccutane treatment. Some needed two courses of treatment.

As for back lesions I had surprise good response to eliminating coffee! Did not discover this allergy until into my 30s when Immunologist put me on an elimination diet. The response was dramatic.

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