MY SON HAS URTICARIA PIGMENTOSA | STORYTIME
ฝัง
- เผยแพร่เมื่อ 12 ก.ย. 2024
- My son, Maverick, was diagnosed with Urticaria Pigmentosa at 7 months old and this is our story. If you have any questions, comments, or just want to share your story, please do!
Instagram: @thepankinses
Recourses:
www.mastokids.org
www.tmsforacure.org
Music:
Download for free on The Artist Union: theartistunion.com/tracks/1233c6
![[[OFFICIAL MV]] เอิ้นขวัญให้อ้าย- อ๊ะอาย สกุณาพร | ค่ายเพลงเป็นหนึ่ง](http://i.ytimg.com/vi/83x6L3X3qh0/mqdefault.jpg)
Hi my daughter was diagnosed with this soon after she was born. She is now 31 yrs old and living a happy and healthy life. It started to go away once she became a teenager which is what her specialist said would happen. During her child hood she had many flares ups which included large welts which would be irritated more if touched. The only big issues we had were from parents not wanting there kids to be around her thinking they would catch something from her. Parents would ask if she had chicken pox or is it contagious...like if we went swimming. I tried very hard to not make her feel self conscious but I was glad when it had ran its course. I am and come from a hay fever family. My boys have seasonal hay fever as well. I myself have recently been diagnosed with a similar skin disorder where I welt up and itch everyday day. My doctor has no exact reason for this except I produce too much histamine. So I take an allergy pill everyday and will continue to do so. Sorry for the long rant but I wanted you to know you’re not alone. Your handsome boy will be just fine and I believe he will grow out of it like my daughter did.
Charlene Ackimenko thank you so much! I’m so glad it went away for your daughter, what a relief! I think you’re totally right that our biggest obstacle will be other kids and their parents not understanding his condition. I’m thankful he’s a boy, since they don’t have the same pressure girls do to look a certain way. That must have been hard for your daughter.
Thanks so much for reaching out! I so appreciate it 😊
I have this- I’m 27 now and still have marks and flare up but I learnt to not scratch the itch very young and from then on it doesn’t bother me. The marks bothered me more than anything cause they make you stand out but I’ve come to peace with them now 😊
I’m in such situation with my son. I have been visiting doctors from months and no cure found. Some diagnosed him with scabies, others with mastosytosis. I’m done with the guessing and now I’m scheduling skin biopsy to confirm. We feel lost and alone with this. Thanks for sharing your experience.
I was diagnosed with this at 2 months old and am 25 now and still have very noticeable lesions all over my body. It does not affect any aspect of my daily life whatsoever and I am generally alot more active than most of my friends in the same age group. Diet is key to helping this condition there is alot i am learning about food and histamine recently that I wish I always knew but doctors dont really touch on that subject too much.
Dominic Paris YES THANK YOU! When my son was born I started doing a lot of research on food and how it effects our body. Do you have any tips on foods that are good/bad for someone with UP? I’ve tried to eliminate dairy from his diet but unfortunately he’s a very picky two year old who refuses to eat anything healthy.
@@lindsayparret9629 I am still learning myself but the one thing that you need to be very careful about is peanuts (most nuts actually). Peanuts and anything even touched by peanuts really messed me up when I was younger. Another thing I would watch out for is ALL artificial dye (especially red) fruit punch would send me into a state panic of what my parents would call "pink", when my hives would darken and raise and i would become dizzy and get a pounding headache. Food does not really do this to me anymore, only when I take a super serious blow to the head.
be prepared for this to be a lifetime thing, he may get bullied and harassed and life may kick him down sometimes just because of this stupid condition but i promise the man he will become will be empathetic to no end, and that's what the world really needs these days.
Dominic Paris I worry about him getting teased everyday. Thanks so much for the tips on the food. I appreciate it!
Dominic Paris hey Dominic what would you say the best foods are to help this condition?
The good thing about a child the age of yours having Urticaria Pigmentosa is that in many, many cases when people have it as children they grow completely out of it in circa 10 years or so. I have it as an adult and I have to face that it might only stay the same or get worse as I get older. I had no symptoms of it until I was 20.
Linkenski you are totally right. I’m so thankful he has it now, and has a chance to grow out of it. I’m sorry to hear you’re dealing with it as an adult. Hoping it’s manageable for you and doesn’t get any worse!
I am 13 and I also have Urticaria Pigmentosa and it still hasn't gone away.
MaKenna Logsdon I’m 12 turning 13 in one month and it hasn’t gone away for me either and I started puberty about a month ago
don’t worry. the spots will start to fade. once i started puberty the spots got noticeably lighter :)
homosexual hippo I’m having signs of puberty but no signs of fading in just gonna except my fate
MaKenna Logsdon hey I’m 27 and mine haven’t fade away but you learn to accept it and be positive- any questions just ask 🙌🏼
Is it still painful??? My daughter have same issue
I have it too! And it sucks that you can’t find a lot of people to relate to :( when my mom took my to the doctor when I was little they thought I was getting abused
You are so lucky with the spots my sister is 9months right now and she has so much spots that doesn’t compare to it poor babies
Anna Aguina I am 27 years old and have urticaria pigmentosa and it’s not the best thing to have but I deal with mine the best I can. I suffer with depression at times with it but as long as your sister has good family around her and positive attitude she’ll be fine
Any questions please ask!🙌🏼
My nephew had it and was diagnosed at 4 months. It went away when he was an early teenager just like his doctor predicted. Lots of warm oatmeal baths, Aveeno lotion, benadryl cream and child's Benadryl.
How would you do the oatmeal baths? And would you apply the Benadryl daily?
My little sister has the same thing and I feel bad because when we go out people are always looking
It’s me Rosa hey I have urticaria pigmentosa and people stare and look at me but I’m 27 now and you grow to have a fuck You attitude. Any questions please ask 🙌🏼
i also have urticaria pigmentosa too
Lovely Video clip! Apologies for the intrusion, I would appreciate your opinion. Have you thought about - Pefincoln Illustrious Precedence (Have a quick look on google can't remember the place now)? It is a good one off product for erasing your hives once and for all without the headache. Ive heard some amazing things about it and my friend Sam finally got astronomical success with it.
I would like to know any update on your son mine in 1 yrs old and was diagnosed with this rare disease at 2 months old he takes certerizine and Famotidine morning and hydroxzine and Famotidine at night and a compound cromolyn cream on the boils clear ones and itching spots and munipocorin on the open ones that break, has an EpiPen.He is triggered mainly by heat I think products and new foods since he just started eating solids. If he flares up I'll give the med that is next up for the time it is and it goes away in 2min tops.and use vaniply for the parts of skin that doesn't have the spots.which is only his front of legs and arms and cheeks.his trunk of body is completely covered
www.inspire.com helps so much the nurses help answer questions.
The doctors here in tx have not be helpful.
My son has it. he got it when he was 3 months. Then it starts to spread until later in his first year. Now he is 16months, the marks pretty much stayed the same except flare ups from time to time. When there is a chemical release some random spots gets bigger and bumpped，and he gets very itchy too. Our dermatologist said the same thing that this will fade and disappear in their late childhood and anti allergy medicines can help with chemical releases, stay cool helps to reduce chemical releases.
Joy Wu thanks so much for the comment! I’ve also noticed extreme temperatures cause flare ups in my son as well. I haven’t noticed him trying to scratch any of his spots but that’s something I’ve always been curious about. I hope it goes away for your son and he lives a happy healthy life!
My son also have like this. What does your doctor tells you? Will he soon outgrow and overcome it?
Ayessa Ramos I’m so sorry, I somehow didn’t see your comment until today. The doctor tells me he will outgrow it by the time he’s a teen, but from the research I’ve done it seems to be different for everyone!
Does it have any treatment
Would love an update. My so. Was just diagnosed today.
You know I probably should do an update as there is so little information out there! You can also reach out to me on my Instagram @lindsayparret if you have any questions or need someone to talk to. I remember the first couple months after the diagnosis were really scary.
I literally just got diagnosed with it while having it since little little
Lovely Video clip! Apologies for chiming in, I would love your thoughts. Have you considered - Parlandealey Reducing Fat Process (Have a quick look on google cant remember the place now)? It is a smashing one off product for revealing the secret to eradicate your urticaria minus the normal expense. Ive heard some unbelievable things about it and my m8 at very last got astronomical results with it.
@@adriananava5378 wdym?
I was diagnosed with it my mom thought I had a eye tumor but I don’t
Well I'm glad it wasn't an eye tumor! How old are you if you don't mind me asking?
My son was diagnosed with this. Does he have stomach problems from it?
Jess Probst he had tummy issues when he was a newborn, I don’t think the two were related though. What kind of issues does your son have?
When he sits down and tries to eat a meal, he gets really bad tummy aches, which lead to his tummy sticking out and it gets harder, then he gets major diarrhea. Then he's ok. I think sometimes he scared to sit and eat because he knows it could cause him pains, and i can't get him to potty train at 4yo and i think part of it is because it hurts his belly.
Jess Probst Poor thing! Does his pediatrician think the stomach issues are related to the UP? Does he eat a lot of dairy? Maybe it’s something specific that’s triggering the tummy probs.
Lindsay Pankins his skin doctor who diagnosed him thinks the tummy issues may be related to up
Jess Probst well I hope you find some sort of relief for him soon! I can’t imagine how helpless it feels to watch your son in pain and not know how to help him.
Hi, I have a few questions about Urticaria pigmentosa on babies. My partner and I think our Baby boy has this. Please let us know if we can reach you on here or through instagram or Facebook.
Thank you
Hi Angel! What questions do you have?
@@lindsayparret9629 Our baby boy’s pediatrician thinks he has Urticaria Pigmentosa. If you don’t mind us asking have the spots gotten better or gone away?
So my son developed more and more spots over the next few years. He’s 6 now and I don’t think he’s getting anymore. They do bother him from time to time but for the most part he has had a normal life.
@@lindsayparret9629 Was your baby prescribed any topical ointment or Zyrtec for itchiness?
No prescriptions. We use some anti itch cream from time to time but that’s about it.
Plise subtitle INDONESIA. My girl same UP
Mbak...anak sy juga kena.apakah anak mbak udh sembuh
@@gunturgultom718 hallo mas guntur.. anak saya masi umur 5 tahun blm sembuh