I have suspected my 16 year old daughters dandruff was really psoriasis. I now know without a doubt it is. She has red scaley patches ALL over her head. She has an appointment to see my dermatologist but that won't be until December. Her feet also have bothered her a lot. I took her to see a ortho doctor & told him of my concerns because I have PSA, he actually questioned whether I really have PsA!! I would love to take her to see my rheumy however he does not see anyone under 18.
I thought getting my diagnosis of PsA was bad enough but fearing it for my daughter is by far worse. Thanks for just letting me talk about it. :)
I know how you feel Liz. My son has an odd rash on his elbow that is never there when we visit the Derm. He also has pain in his feet and back. I have the guilt too. But I also realize I could have given him genes for something much worse. There are so many really horrible genetic diseases so I try to keep PsA in perspective. i fear ALS and Huntington's Chorea much more. I also try to remember he will not have the frustration to get a diagnosis and treatment that I have had nor the lack of treatment or deadly treatment our grand parents had. I am not trying to minimize your fears: I share them, but I do try to keep mine in perspective. I hope your daughter is fine but I think she is lucky to have such a smart mom to help her navigate the medical system to diagnosis and treatment. I will keep her in my thoughts and prayers.
At least you're right on top of things. What did the ortho say about her feet?
Finding it early can make all the difference. My 11 year old daughter has had joint / energy issues since she was 3, and we still don't have a diagnosis for her. When I got my PsA diagnosis, just a few years ago, I felt major guilt that I could be passing this on to any of my five kids, but I had to let it go, as guilt about something you cannot control only hurts you and those you love.
I'd suggest getting the dermatologist to confirm psoriasis and get a referral to a pediatric rheumatologist so she can be seen sooner rather than later.
I first started getting joint issues when I was in high school. I played football and that got blamed. When my xrays an MRI were clean I was called a quak. Fast foward to today and I have joint damage
I too am scared for my children.
My heart goes out to you. I can't even imagine as a parent what going through this experience must be like. My mother has PsA. Luckily she has been able to get it into remission, and has been mostly relapse free for 10+ years. She has been one of my strongest sources of support as my condition develops. Her understanding and perspective has helped give me strength. I can only imagine how grateful your daughter must feel to have someone that truly understands what she is going through. I also struggled with getting doctors to treat/diagnose my condition because of how young I was when my condition started presenting itself. I am looking forward to the day when more is understood about PsA and younger people can get the help that they need. I'm not sure where your daughter's feet hurt, but for me (I had plantar fasciitis) rolling a tennis ball or rubbing the arch of my foot into the corner of a coffee table really helped soothe my feet when I was younger. Hearing you advocate for your daughter's needs is inspiring and makes my heart happy to know she has a great person in her corner.
Well said Betuabu and such an important message about out children to hear. Thank you.
I know the guilt. It's odd, I knew there was psoriasis on my sons fathers side but had no indication that it was on my side of the family too. I had seen no evidence of it growing up. So, the likelihood my son will get psoriasis I would presume is greater.
I have scalp P and I have found the shampoo the neutragena makes is the only thing that helps me, I believe it's called Neutrogena t-gel. The cortisone meds the dermatologist gave me never worked. Who knows, your daughter may not end up with PsA. At least you'll know the signs if anything pops up.
I am so worried about my beautiful baby girl. She has psoriasis and she is 28 and a mother of the cutest twins ever! OK so I am a little biased! But she does have psoriasis and is starting to have some of the same problems that I have at her age. I probably also had them at that age but it took the doctors until I was 57 to finally diagnose it. I hope that with my history that they will diagnose her earlier and get her on the right meds so she won't have my problems, pain and frustrations.
Despite you having P. there is only a one in 6 chance of your child getting it. Even if they get P they still only have a One in thirty chance of getting PsA. ( estimares vary dependong on the model) Of course any parent is terrified from the first day they are prego to their last breath about what can or could happen. The real challenge in parenting is to prepare them to leave home, have a moral base, and a value in relationships strong enough and developed enough that they have a happy and fulfillong life.
One thing is for sure that unless there is a rapture, none of us are going to get out of here alive...... Every parent passes something awful to their kids. Cancer, heart disease, red hair, the list is endless. Mat has it right. IF our kids get this thing, they will get early aggresive treatment, we will see to it, and the impact will be minimal.
Yep, the absolutely amazing thing is that my little girl will know all about it, if it happens. And probably have some great meds. I will admit that I had a moment of guilt for those yet to come, but I very occasionally, for a split second, feel a much more intense survivors guilt - for those who went before, and had only toxic pred and NSAIDs.
I have the same fear with my 20 yr old son Liz. I was always worried he would get P when he was young like I did (at 8) I didn't want him to go through what I did growing up. Well, he made it through with just a tiny bit on his scalp, but now he has a little around his nose which he can control. I still feel terribly guilty and I pray it stays mild. He has no pain, so I am pleased about that so far. I talked to him about diet triggers such as red meat and dairy products (he loves both) and he cut back. He said he noticed that the little he had was less noticeable with the change in diet. Although diet helps, it's no panacea.
Thank you everyone for your support & in putting it in the RIGHT perspective.I think as parents we sometimes blame ourselves for everything. God decides who get what genes. When I was diagnosed I did not even know what psoriasis was. I just thought I had terrible "dry skin". Only when it showed up on my face did I see a dermatologist. The pains I felt was due to "getting older" & ignored for years. So my daughter does have a much earlier head start. As usual lamb, you are so right. Especially about the rapture! To everyone once again, I thank you for your support & understanding.
Unfortunately we will always feel guilty when our children suffer things…its the nature of being a loving parent. My youngest son has had P as a small boy and as his father has AS, I have P and PsA…My son was tested and found to be carrying the gene after suffering Sever’s disease from the age of 8 (treated by the same rheumatologist who treats me now) I just know if he does develop any symptoms I will be in a position to help him. I don’t tend to worry about it too much, but just keep my eye on him…although he’s nearly 21!
I know what you mean Louise. My baby is 19! But we still worry and feel guilt. I think the most important gift we can give our children is the knowledge of how to navigate the medical system. We really don't know which diseases they have been genetically linked to nor which ones will get triggered. I lost an eye to amblyopia and had my son tested repeatedly as I feared he might have inherited it. He didn't but my nephew did. I never thought to warn my sisters to have their children screened for it. My sisters are rather disenchanted with the medical community, I come from a long line of hippies! One has refused all screenings and immunizations. She was just diagnosed with stage 4 cervical cancer which is unheard of in women who get pap smears routinely. We can teach our children how to navigate an often confusing medical system and to believe in themselves; if something seems wrong to YOU it probably is. Continue to ask questions and seek a diagnosis and treatment. That will help them if they inherit the PsA gene or not.
Yep, well said Michael x
Thanks Louise. I missed your cheery voice when you were visiting quietly, friend. <3
Hi Liz,
You said you want your daughter to see a rheumy but your dr. doesn't see anyone under 18.
You can take your daughter to see a pediatric rheumatologist. That's who I saw for my PsA until I went to college.
Major cities / medical centers will usually have a pediatric rheumatologist.
Ah bless you Michael, I'm never far away just sometimes I feel a bit mute <3 michael in vermont said:
Thanks Louise. I missed your cheery voice when you were visiting quietly, friend. <3