I have had psoriasis since I was twenty years old and psoriatic arthritis for about five years. A few years after the psoriasis began, it got extremely bad, especailly on my hands, feet, and abdomen. It has spread to many other places, some of them being my scalp and ears just to name a few. I took all the steriods with little help. Once I got the arthritis and started having terrible pain, moslty in the spine, I started methotrexate. It did nothing for my arthritis, but helped the skin a lot. Now I just take Enbrel and have seen some improvments with the arthritis also (not pain free, but better).
About two months ago, to my horror my six year old daughter began itching behind her ears. Then she developed red rashes on her abdomen and then along her pubic bone area. Every rash or spot looks exactly like mine. She saw a prediatric dermotolgist today. She says they never officially diagnose the first time since excema can look similiar. However, she said due to family history and that excema rarely gets to the private area- she thinks it is psoriasis and we will treat as such.
Thankfully she has seen me be strong with the disease, I have educated her about it pretty well, but I know she feels scared because she thinks she might end up with arthritis, pain, etc. I have explained to her that is not the case.
Anyone else out there with this disease who also has a child with it. I would love to hear what you have to say, advice, recomendations, anything.
There are a few parents that pop in every now and then, but there are several members who have dealt with PsA since childhood. The comforting thing, in your daughter’s case, is that you know what to look for. Also, that treatment has come such a long way. It’s so much different than it used to be, even the psoriasis treatments are far superior.
I guess the most important things are honesty, education, openness, and ensuring that she still gets to be a child. Is there a need to worry right now? No, but you probably will anyway.
As many as a third of patients with psoriasis will develop PsA. The true number is said to be below 10%, but this still a highly debated topic. The longer the psoriasis goes uncontrolled, the greater the chances of PsA. If she doesn’t have the symptoms at this point, I wouldn’t worry about it at the moment.
I am the third generation in my family that has been formally diagnosed with PsA My grandmother had it ,my father had it and now I have been diagnosed. I have become quite the advocate because of this. I think the thing that scares me the most is watching my children (6) and grandchildren (8) almost all showing the psoriasis and the some the arthritis symptoms. When I first started to become very ill I had no idea it was my skin disease and RA causing the illness. How could something that we have always referred to as the family(crud) be something so very devastating?
I sympathize with you sooo much. To watch our children suffer is harder than the pain this crap causes for me. Just bear in mind. As young as she is it was probably triggered by a strep throat virus at school. There is nothing you can do to avoid this but as a former childcare provider I suggest she keep hand sanitizer with her all the time and stay home from school if possible when the yearly go round of the strep begins. Ask her pediatrician for a preventative dose of something she can tolerate to stave off the rash as much as possible as soon as possible if she does get ill.
My five year old granddaughter is doing the same thing. They have treated her four times for scabbies with obviously no improvement because she does not have that particular nasty crud. She always gets a rash on her knees when she is ill with a cold or has been exposed to something at daycare.This has been going on for three years. When I first found out I had Guttate psoriasis I gave my daughter all of the info she had so she could pass it to her daughters pediatrician. This has helped in little ones care. We placed the downloads for this from the Mayo in my infant(3wks) grandaughters med records and her ped. was ever so grateful, just in case. WE are preventive because we know this is a family issue.
All of my adult children have shown some sign of the disease, from tiny itchy spots(21yr old son) to to eye involvement(35 yr old son). We deal as best we can and it is difficult because they do not all believe that it can be devastating if not properly taken care of( see my blog on daughters).
I have found during my thirty years of teaching little guys, that honesty, total, complete and simple seems to be the best approach for dealing with the hardest life subjects. You, as a strong mom are doing more for her self esteem than anything any one else can ever teach her about herself! Continue to keep her in on the info you find. dumb it down to her level as much as possible and let her know what you know. Make it a special thing you do when you are feeling down or she is upset. Knowledge IS power. By doing this she will come to understand it is something you both have to live with, you can help yourselves be your best, and you can always love each other "no matter what". Tell her she is as beautiful as butterfly and just like a butterfly her skin sometimes changes. I try not to think of this as a disease but as a metamorphosis of sorts. Who knows we might be that Darwinian evolutionary change that is leading mankind into the future. Weird I know but it works well with the little guys. They are so science minded :)
So glad I could help..... hoping the both of you have a beautiful day. If there is one thing I know it's little girls ... I had four of them and now six grandgirls!! They are so very precious when they are not being precocious! :)
