How soon should my son see a dermatologist?

[MUM25]

Hi. My son (now 12) was diagnosed with Gorlin Syndrome 3 years ago and has been having Jaw cysts regularly removed ever since. So far, no-one has mentioned seeing a dermatologist, but everything I read suggests that he should be seeing one. I am starting to worry that this could cause problems for him. What are other people's experiences please? We have had so little information and feel very unsure what to expect.

[PTCH1ARLIE]

Hi,

I remember when I was his age, I had the same problem - Doctors give very little information regarding this syndrome. With that in mind and how things were for me, I would say he should see a dermatologist every so often just for check ups......more often if there seems to be changes to his skin at all including moles or cysts. To this day my main problem was finding a decent orthodontist who knows alot of gorlins syndrome, because Iv had more jaw cysts than anything else. My dermatologist was always very good and kept me in check paired with the advice that my parent or myself to keep an eye on anything new at home. And the old stuff about keeping out of the sun and using factor 50+ sunscreen also helps.

Hope this helps.

Charlie.

[MUM25]

Hi Charlie,

Thanks, yes that is very helpful. We are lucky in that we seem to have a good orthodontist who is part of the Cleft Lip team that my son was already under from birth. We are about to get a new Consultant as the previous one is retiring, which is a shame as we had grown to trust him. But hopefully, it will give us a chance to ask lots of questions and bring up the subject of a dermatologist. Hope everything is okay with you at the moment and thanks again for replying. It is just so useful to be in contact with other people who have experience of the condition!

[PTCH1ARLIE]

Aw no problem at all......anytime! Where abouts are you?

My current problem is ovarian fibromas (another symptom of this syndrome).

I hope your son is otherwise well, bless him. It seems to me that its around adolesence when this syndrome is quite bad.

Charlie

[roberson]

My daughter (11yrs old) has Gorlin we just found out in Feb. this yr..she had 4 cyst removed in April. We had appt. to see Oral Surgeon, Dermatologist, Eye Dr., Orthopedic dr & heart Dr. Because Gorlin effects all these areas. I think you may want to check & see a good Geneticist, that is where we have found the best help & Doctors that know about Gorlin.

Our Dermatologist did say that skin cancer usually doesn't start until after puberty.

It is very important for them to wear sunscreen at all times..I can send you a list of the ones the Dermatologist recommended.

Take Care Beth

[gragra62]

HiMum25.

As soon as Gorlins as been diagnosed. It is essential to set up a support team. Yes a dermatologist is a vital part of that team and should be seen as soon as possible,by asking your G.P for a referral, at the same time a referral to a genetics clinic is also important part of your supportive team. I am seen by my dermatologist every three months, my plastic surgeon every six and the genetics clinic when ever I need to have any concerns into my Gorlins condition.

I have a lot of recurring rodent ulcers, which are treated with Cryo therapy, or other treatments determined neccersary by my dermatologist,which if not kept under control can turn cancerous.

Another thing besides sun blockers is a good oil or paraffin based moisturizer cream. I use Epiderm or Quantilim for dry skin areas as a washing agent or after washing. I don't go for cosmetic moisturizers as they contain to much rubbish which do not help the condition.

I am one of six in my family afflicted with the Gorlins Syndrome, of varying degrees and we all have the supportive agents in place

Hope I have been helpful[ and can always be here in a supportive role if your need arises and I hope everything works out for you.

Graham .

[MUM25]

Hi and thanks to everyone for commenting! So useful to hear what you have to say! Much appreciated!

Charlie, we are in Gravesend in Kent. How about you?

Lesley

[Hidden]

Hello all

It is important that individuals with Gorlin Syndrome are offered regular screening, ideally with one clinician or a genetic department monitoring and co-ordinating care.

In childhood annual dental screening should commence from about eight years of age for the detection and treatment of jaw cysts. There is also a need for at least annual surveillance from the healthcare professional (ideally a Dermatologist) taking responsibility for treatment of the skin.

Adults should inspect their skin regularly. Again surveillance of the skin by a Dermatologist and dental screening should continue into adult life.

Margaret