Parent of a sweet baby with Psoriasis needing help

[Shana Hansen]

Hi, I can't beleive I have finally found a place that I can find out how other parents are coping with a child with psor. I have a daughter who is now 13 months old who came out of the delivery room with psor on her face and scalp. At 10wks she was diagnosed by biopsy. Since then it has caused havoc. She has it all over her body, especially bad in her diaper area (which has caused her to have 4 peri-rectal abcesses), her ear canals, her mouth and now her oesphagus. We have been in and out of Texas Childrens Hospital in Houston and they have now started her on Soriatane. It has only been a few days but we are hopeful this will be the answer. Has any other parent out there had any experience with this kind of thing? I would love to hear from you.
Shana

[mogleyboo]

Shana,
I guess this is where I come in. Hunter was "officially" diagnosed at 6 weeks. He is now seven and had it pretty much the whole time. He ranges in severity from about 5-10% during May-Oct and 90-95% the rest of the year. For the first 2 years of his life, nothing seemed to work quite right. Everything would help but never for long and never to the point that the dr and I wanted to see. I am not saying this to make you feel bad or anything, but that was how it was with Hunter. It was like his body was so confused about what was going on that it could quite figure out what to do to stop the psoriasis.

Anyway, fist some questions (so I can suggest things that you may not have tried already.) Diaper area: is the p plaque or gutatte? Also, for the outer body, what have you tried in the way of both prescription and non-prescription treatments?
Hunter never had it in his mouth but I know someone that did, I will ask her what they used to help her.

Now, this is my two cents about the soriatain. Get her off it ASAP. Use it for a little while to see what happens, but otherwise, it is not recommend for children and the side effects of worse in the long run that methotrexate in many cases. This is a quick fix that many drs like to use for serious cases but the truth of the matter is that your little one cannot be on it for her whole life. What happens when the side effects start to show up, what will they give her next? I know that they want to clear her up quickly especially in her mouth and esphagus area, and that is completely understandable, but in the long run they really aren't doing her any good. If the soriatian (sorry I can't spell today) works to clear it up in a few weeks...great, if not it probably won't anyway, so you might start thinking about other options. The truth of the matter is that their are so many drugs out there for psoriasis (Hunter's used most of them.) and the truth of the matter is that most drs just want it cleared up fast and don't really think about the long run and the big picture with side effects and such down the road.

If you want to talk, my email is psormommy@yahoo.com. Also, if you will answer my questions, I can probably suggest treatments that you haven't used or that will work in combination with other things you are doing now that might be able to help a little. Stay strong and remember to love her as much as you can. That will trully help get you through the tough times.
Laura

[Tephywashere]

Shana- Welcome to our little group.....I don't have too many words of advice as to what medical direction who should take, my Emily didn't develop P until she was 5yr old...Laura, little help here?!.....but this site is to also give you emotional support and trust me you will get a ton of that here.
Good luck and if you need anything(to vent, to cry, to ask advice) we are all here....right everyone?!?!
Stephanie (Emily's Mom)

[Shana Hansen]

Thank-you so much for your replies. Yes I am also very leary of them putting her on the soriatane but her mouth and oesphagus are getting worse causing her to not eat and that just scares me so much. She has been spitting up bright red blood on and off since June and if she vomits there is always a lot of bright red blood. When her GI Dr. scoped her to try and take biopsy's she was unable to in her oesphagus because it was so fragile but the mouth biopsy confirmed psor. They have talked about needing to put a feeding tube in to her stomach because they would not be able to put a tube down her throat so if the soriatane works we would avoid that. That is the main reason for the soriatane. On her body we have used many ointments, some of them are fluocinonide, desonide, tegrin, elocon, and protopic.The ones that seem to be helping now on her body is Triamcinalone and on her scalp Locoid solution. As far as home remedy we have tried many things and the soap we are using now that seems to work is Neem oil soap from Australia. My family lives there so my Mum sent it over. In her diaper area she has inverse and erythodermic psor., and on her body and scalp guttate psor. Thank-you for letting me know that there is times of the year that are worse for your son, I was wondering about if this was a good time of the year and if it would worsen during the fall and winter or if the treatment we were doing was just working that well. Some other questions for you: Did Hunter just start getting better when he was 2yrs or was that when you found a treatment that would work? also How are you all handling peoples comments??? Everywhere I go people are always commenting "Oh what did she get into?" or "Did she get eaten by mosquitoes?" and then when you tell them no she has psoriasis they have a million suggestions of what not to feed her or what to put in her bath water. I swear we could get the grocery shopping done in half the time if people weren't stopping to tell me what I need to be doing??? Anyway thank-you again for your replies, Take care Shana

[RonnieNSN]

Hi Shana(and others),
I know how you feel having found a place where people know what you mean or at least you feel like they do. I felt the same sort of relief when I became a member. Have you checked to see if there is a local support group in your area? As comforting as this site is, the responses are understandably delayed at times. I am the mother of an 8 year old daughter who also has psoriasis, her father and I have no clue where it came from. Neither of us have it nor does anyone in our family that we are aware of anyway. She was oficially diagnosed when she was 5 but I think she's had it since she was 3 and it was misdiagnosed as ring worm because it was only a small spot. She also has the inverse type in her groin area and under her arms and the guttate on her torso, arms(mostly elbows) and legs (mostly knees) as well as under her finger nails. I'm not sure but I think she has the plaque variety on her scalp. She's just getting to the age where she notices that she looks different than other children her age. I think that when kids are young, 3 to 6 years of age, they are friends of convenience with each other. If one friend can't play then someone else will do, I don't think they have true favorite friends. But as they age they tend to be friends with children who are more like they are and I fear that the older she gets the more likely she'll be to experience rejection because of her p. I try to reassure her as best as I can but never having dealt with it before it's hard. It breaks my heart as I'm sure it does the other parents here. It's comforting to come here and express how I feel and have someone respond who seems to know just the right thing to say. I hope you experience the same type of feeling. Take care!
Ronnie

[elliesinger]

Dear Shana,

Welcome! Wow, did you ever come to the right place! Laura, Hunter's mom, is a phenomenal resource for all of us, and I know she'll be especially helpful to you.

I can't help with some of the infant issues -- my Ellie was diagnosed at age 6 and is 8 now -- but I sure can respond to the input from strangers issue. For one thing, EVERYONE wants to give advice to new mothers. People said the most bizarre -- and inappropriate -- things to me when my kids were tiny. I mean, I do believe in the whole "it takes a village" thing, but unsolicited advice from strangers (who are FAR too willing to touch babies, which also made me absolutely crazy) is not acceptable.

I've always taken a page from Ann Landers' book when it comes to peoples' comments. I smile sweetly, say something that dismisses them ("thank you for your concern, but she's fine") and turn my back. A great way to turn people off is with icy politeness. "No ma'm, she was not [stung by bees]."

We were once on line in an airport when Ellie was pretty sick. I had her in a wheelchair, because she had a staph infection in her skin and couldn't walk. She looked like hell. It was the day before Thanksgiving (the only reason I was travelling -- family has a strong pull!) and there were zillion people there. This one elderly lady kept peppering me with questions, which I politely refused to answer. I just kept saying "no ma'am" and turning my back. Finally, a guy a further back in the line said, "lady, just leave them alone" and the entire line -- all cajillion of them -- applauded.

Best of luck, and keep writing! We all care about you and your beautiful daughter.

Jennifer

[Tephywashere]

Yeah seen that.......Done that! Been there!
First thing Shana, you have to become thick skinned and lose all self-consciousness and most of all not take it personal....Jennifer is right, most people are just trying to pass on all the wisdom they THINK they have and don't really mean any harm.....I have learned in the grocery store to be polite and acknowledge that I heard and keep moving.....I personnally am less bothered by the people who actually ask or say something than the people who just stare and get that look on their faces....atleast with the people who say something you can figure out what is on their minds........

I have also figured out that I am more bothered by it all then Emily is.....So far she just goes on her bold way....people stare at her because she is the most beautiful little girl in the world just ask her.....I made sure that she can answer any question someone asks her about Psoriasis and I have found with the kids at her school that the answer 'I have Psoriasis!' is good enough for them eventhough they have no idea what that means.....

Until you feel comfortable with the state of things....and I am not going to lie and say you ever do....try this philosophy: FAKE IT UNTIL YOU MAKE IT!!!!!-works for me!

Stephanie

[Shana Hansen]

Thank-you all some good pointers there. Like your daughter, Stephanie, Lillian just thinks the extra attention is because she is soooo cute. She gives them a big old smile and waves. Good news as far as her healing up. The Soriatane seems to be making a big improvement on her throat. She is starting to eat!!! We won't know for sure until they do the next scope but for now her eating is a good sign.
Take care, Shana

[rlwelch]

My 4 1/2 year old daughter has had erythrodermic psoriasis since two and we have had a couple of bad flares and we too put her on Soriatane. We live in Austin but also went to Texas Children's and worked with Dr. Moise Levy. He is the best pediatric dermatologist I could ask for. He really cares about my daughter because I can see it from the way he talks to her. He put my daughter on Soriatane and monitored her with monthly visits and blood tests as well as bone scans. His intention from the start was to get control of the flare and wean her off the Soriatane which we have done. If you are not seeing Dr. Levy I would recommend you do. I feel for your situation and we all try to get a handle on the questions on why our children look the way they do. I know one thing. My wife and I made several trips to Texas Children's and each time we felt lucky that our little girl "only" had psoriasis. Its difficult to explain but my daughter can read, run, jump, and swim. Lots of kids there can't get out of their wheelchairs or feed themselves. I know helping my daughter with her psoriasis and emotional health is the most important thing I will do for her. She is everything to me just as your daughter is to you. My e-mail is rustylwelch@aol.com.

[Tephywashere]

Good to hear that Lillian is eating! and I'm glad that we all could be of some help.... Don't forget that we are here for each other and no question, feeling or thought is too small or out of bounds....because actually you will probably find that atleast one other person here has felt or thought the same way.....Good luck and keep letting us know how that sweet little baby of yours is doing!
Stephanie

[saylan]

i am not a parent, but an adult that had infant psor. i am 43 and it has been with me everyday of my life. i however, never experienced the severity of your childs'infliction. my heart goes out to you. i am going to contact my mom, that i hope can assist you. rest assured, that i found it easier to deal with this problem because i was young, and always accepted it. the psoriasis has never hindered my sucess,friends, or life.i am no martyr, it is very uncomfortable, but i am secure in my "skin". my lesions cover 75% of my body now. there have been times when i should have been hospitalized, but i fight it. i am not a freak, and understand societies cruelness and lack of education. it is easy for me to speak about it when people stare at me. i am immune to all medicines now. the only thing that can work for me is uvb, unfortunately i have no insurance and have to live with it. you are blessed because medicine is so far advanced than when i was a baby. god bless, linda

[bdiamond]

I am not sure if the following information will prove helpful, but it has dramatically improved my quality of life so I feel I should offer it. Throughout my childhood I had psoriasis, and all doctors would do was subscribe more steroids. As I grew older the psoriasis cleared up but in my mid to late 20's I developed extremely painful outbursts of cysts on my face, and as I grew into my late 20's they became much more severe, and hugely painful. My girlfriend suggested that I might be allergic to something since the symptons seemed to come out after meals or in the morning.

I finally decided to go to an allergist. I was quickly diagnosed with being allergic to many types of molds (yeast in particular) as well as a few other things. The main thing I did was stop eating bread and all other products that have yeast. Since then I have not had any other symptons, everything has completely cleared up. I feel great, a huge improvement to my quality of life. I should also note that when I was young I must of had a box of twinkies a day. No wonder then, that as I ate all of this enriched flour full of yeast that I would have psoriasis outbreaks.

Basically, psoriasis is an auto immune disorder, so it would make sense that if I stuff myself with bread, wine, cookies and beer, and if I was allergic to yeast, my body would react. Since the skin is the "third kidney" my body is attempting to rid itself of toxins through these outbreaks.

I only wish that all of the skin doctors I visited over the years had suggested that I go to an allergist. My advise to people with psoriasis, or parents or loved ones of people with psoriasis, it may not cure all of the symptons, but visit an qualified allergist, find out what it is in particular that causes the outbreaks. Really think hard about when the outbreaks occur and then try to cut certain things out of your diet, or even get special sheets on the bed that minimize dust mites or anything that her body might be allergic to. It may not be a cure for everything, but it may help reduce the severity of the attacks.

The above doesn't need to interfere with any of the existing or ongoing treatment you are seeking, but can be done at the same time. It might not help, but at least determine if your baby is allergic. It definately helped me, and I really wish I had done it 15 years ago.

Bill

[IBARRA01]

I just want to say that I want to cry reading about your baby, just because I have a little baby, and it is too hard to see them suffer. I am 22 and was diagnosed with psoriarsis about 5 months ago and it is HARD. I have a 5 year old and a baby that turns one this month (JAN) niether one of them have it so far, but who knows about the future. Really, as hard as it is, I guess you should be thatnkful that it isn't something worse than psoriasis, but having young kids, it is very hard to think that way- I mean after all, they are your angels and health is one of the things you hope for the most. Just say your prayers, Keep your Faith and Good Luck to you and God Bless.

[PJ Leary]

What is your current situation?

PJ Leary

[mrice]

I can relate to almost every post here in some way; I have P and, I also have a 13yr old son that has had p for about 3 yrs now. I was also about 10 when mine started. I can say that I agree very strongly about keeping a strong face and making sure that YOU are comfortable will make your baby feel more comfortable. Some day you will have to deal with the emotional aspects in a way that makes her feel good about herself! I find that I have to educate others every chance I get in order to make my Jesse feel comfortable and accepted by others. I keep a chin up always and then I let loose with people in the support groups where my pain is understood! I have had people say "Be thankful that is all it is" When they don't even know how much anguish this disease has caused my family!
education rids ignorance! Hang in there and keep coming to the boards; we are here for you!

Marcie

[jules7565]

Hi Shana,

My name is Julie and I am so sorry that your baby has Ps.
I am 37 yrs. old I have had Ps since I was born also. My parents went through hell when I was growing up. I was in hosp for 1st 3 months of life, been to all kinds of treatment centers through the years and had all kinds of meds. It hasnt been fun.
I can say I have led a fairly normal life with lots of friends who understand , I played sports, had boyfriends etc. I just ignored the comments and the funny looks I got from people who where just to afraid to ask, although it wasnt easy sometimes. Growing up with Ps was not easy and living with it today has been worse ( It turned into a very rare form of Pustular when i was pregnant)

Hopefully they will find a cure for this awful disease so your child and the thousands of others will not have to suffer another day.

Julie

[jules7565]

Hi Linda,

I feel the same way about being easier to deal with PS having grown up with it. I was born with PS 37 yrs ago. I always had lots of friends, played sports, etc. was a normal kid except for my "yucky skin" and the sometimes twice daily trips to Derm.
Matter of fact I named my daughter after the nurse who did my treatments !!!
Unfortunately mine has gotten worse over the years and been hospitalized many many times ( no ins either) I am also resistant to a lot of meds. been on just about everything throughout the years. boy do I fight my flares too , but they always win.
My mom still cries every time I flare. She feels sooooooo guilty and thinks if only she did something differnt or took me to one more Derm maybe I my PS would be so severe.
Overall, I think its made me a stronger person. I don't let things bother me nor do I hide my PS. The comments and the stares hurt sometimes but I feel If someone won't come near me that's their loss !!!!


Julie

[tropigal4sun@aol.com]

Hi Linda, I just read that you have had P since you were an infant. I am brand new to this site and wish there had been a forum for P sufferers years ago. I am 43 also. I was 13 when I got psoriasis. I have been through it all. But, what worries me is that you said you are immune to all meds/therapies. Can that happen? I moved to FL from MN 7 yrs ago for the sun. I can't get out as much as I'd like. The sun has both helped and been bad for me so I'm not so sure it is the best, but it does feel good in small doses when I have the time. I'm on cyclosporine and it works for me. As far as accepting the disease, I am all for telling people exactly what it is when they have the audacity to stare and ask. Afterall, educate them, right? But I had a Very humiliating experience on the beach 2 mos. ago. I thought I was strong and could handle it,( and I HAVE TRIED). I'm not getting any younger and hate the thought of not enjoying my time here on earth because of people staring at me. Anyway,I live on Clearwater beach and there is nothing more relaxing than going to the water,laying out and swimming. To make a long story short, I thought I'd go OFF the drug and get some good sun and swim and play in the water. I was laying on my stomach,(farther north away from the crowd),content and relaxing, when I heard a womans voice say, "excuse me....are you ok? It startled me and I looked at her and said, "yes". She continued to say, "you are red all over!" "I have psoriasis". She profusely appologized and went on her way. I know she thought I was laying there dead and burning! I havn't been back since an went back on cyclo. How do you ever get used to it? I thought I was stong enough after all these years. It was humiliating all over again. By the way, cyclo works for me and I suppose I could get out on the beach now without someone asking me any questions, but I know they will still stare. So I stay away from probably one of the best therapies in my own back yard! Wouldn't it be nice to have a beach just for us? Well, I just wanted to share that with someone who understands. I really am pretty stong tho. you can write me at TROPIGAL4SUN@AOL.COM THANKS FOR READING

[iansmommy]

Boy is this the thread I need to be a part of! Shana knows Ian's story but I will share again. Ian is almost 15 months old. He was diagnosed at about 4 months old. I was not given a "type" but from pictures believe it is guttate. Thankfully, I guess, his case is not as bad as Lillian's. I am greatful to have found Shana and her sweet baby as she has been alot of help to me. Ian also has food allergies -- dairy and peanut and maybe soy. He also has asthma. We saw the derm today for a recheck and have not changed much about his meds. He is on Locoid for his face, Fluocinonide Drops for his scalp and Triamcinolone with Eurcerin for his body. The Triamcinolone (TMC) is the only change. He was on just plan TMC but our derm had me change it. Ian is having a real problem with his skin being over dry so we are doing whatever we can to moisturize. :) We have also been told to start using Dove Body Wash because it lathers well and to try Aquapor to see if it works better than Cetaphyl that we have been using.

We do know where Ian's P came from. I have eczema and my mom believes that her dad had either P or eczema. (She can't remember.)

[jeanell]

This is really interesting. *I am new to this site and the amount of knowledge here is just amazing! I am so sorry that your daughter has psoriasis.

I am wondering how you were able to find that your daughter had internal p.* Could you see it on a test?*

My friend believes she has internal p in her chest and her doctors aren't paying attention to her (She does have external p on different parts of her body as well). We are hoping to beable to take her to a hospital outside her area but, would love suggestions as to how they were able to diagnose this.* Tests that might show up.* My friend, and her family is truly at a loss while her doctors are writting her off to psch.*The medicines she is being giving long term are causing side effects that are horrible.* I just stumbled on this website and am doing investigative work behind the scene. Why the doctors do not know about this in her area is beyond me. Would love any suggestions that can point us in the right area.

I would love to see how you all were able to get the right people to listen and get pointed in the right direction.
Thank you so much! Jeanell

[ouchyk]

Hi,

It might help to know that the orig post was from 2001, and it appears that the mother of sweet Lillian is no longer an active poster.

On her second post to this thread, her daughter was dx as she was spitting up bright red blood and sent to a gastro dr, who did an endoscopy however could not get a biopsy due to fragility of tissue. Her mouth bioposy showed psoriasis.

You might encourage your friend or perhaps you could ask about a psoriasis expert in the area in which you reside to get more information about the possiblity of manifistation in the chest cavity.

Wishing your friend and you all the best.
Karen

[jeanell]

thank you. I am so sorry to hear this. We are going to hopefully find out if she can go to a different facility and that is a wonderful suggestion. I will pass this onto my friends parents. Why that never occured to us I am not sure.

thanks again. I am so sorry.

[ouchyk]

Sometimes its difficult when you have something and a dr cant figure it out, often times I read people post that their dr's thought pain was in their heads only to find out, it was in their joints!!! :eek:

And insurance ugh, some rule who we can and cannot see too..so this is always hard as well and can be a stumbling block!

If your friend ( and your a good friend for helping!! ) is interested there is a list of drs that can be found on the site too...

http://www.psoriasis.org/treatment/directory/

of if you'd like as I said if you could give a near-by geographical location someone might pipe up with their own dr who might be able to help. Sometimes you have to travel to find a really-really good dr who will listen and act on your issue.

my best,
Karen

[jeanell]

Thanks I didn't know that this link was available. I will gladly pass this onto my friend's parents.

She is in central California but, they are willing to travel to Northern or Southern California as well. We are hoping UCLA or UCSF will be somewhere she can get into. At these hospitals they will have good specialist to rule in or rule out conditions. Wow, if anyone has any names of doctors that are specialists in California that will be great. I do not even know how many that might be but, anything is greatly appreciated.

Thanks for your help! My gosh this is so new to me and there is so much to learn.

[MikeK]

Hi Jeanell,

Welcome to the board. :cool: Nice to meet you.

Thank you VERY much for being there for your friend. :) The world would be a much better place if there were more people like you. :)

I'm from New Jersey, but I have got a doctor for you. :) Some very good friends of mine live in the Bay Area. Some of them are patients a dermatologist at UCSF named John Koo. They all speak very highly of him. Even better, he's a psoriasis expert so it might be worth having your friend get a second opinion from him. Here's a link to his contact information: http://www.dermatology.ucsf.edu/faculty_staff/StaffBios/KooJohn.aspx.

I hope this helps.

Mike