MY 6 YEAR OLD SON HAS SLE

[mumofthree]

Hello my name is Melanie. I have a son of 6 who has systemic lupus. He was diagnosed when he was 3. I have finally got to the point of needing to find someone else out there who is in a similar position. All I ever get is oh that's unusual for a boy to get lupus and also he is so young. I won't go on about his condition too much, except to say that the last couple of weeks have been awful. His skin on his face has flared up really badly, got infected and is about to go to hosptial again, third time in a week to see what they can do. Every sun block they have given him so far seems to react with his skin and make his life a misery.

He is now starting to feel the mental effects of suffering from lupus. He is getting younger children at school saying things to him and they constantly are asking him what is up with his face.

The main reason I have joined tonight is to find some other parents who have young children suffering with lupus. I know that there are people out there, but I can't find them. I even asked my local lupus support groups but they have never heard of a child as young as my son with lupus. Although I know there are children younger.

Please let me know that I am not the only mother going through it all.

Thanks.

[halfpintfl]

;) :wave: Hi mum, welcome to this site, you are not alone. There is a section on this board for Family and Friends of lupus patients. Also , keep looking here,
as some others might also answer.

Keep posting :nurse: ;)

[goats]

I have sle but not my children
I just wanted to welcome you to the site
there are parents that come here, I am sure someone will come along to meet you
parents don't usually have alot of time to post, have patients
try looking under the "" under twenty section""
perhaps someone here will have better information for you
best wishes for you ,son and family

[Anisah]

Hi Melanie,

:welcome:

I am so glad you found this site! There are some mothers on here with young children, and even some young adults who were diagnosed as young children, both of whom might be able to help you.

I'm sorry I can't help you with regards to having a young child with Lupus. So far my daughter is fine (she is eight) but she has shown signs of arthritis which is distressing. I can only imagine how difficult this is for you and your family, and especially that precious little boy.

I really just want to give you a cyberhug and send you well wishes. :hugbetter:

hugs,
Anisah
:flowers:

[Clare.T]

Welcome to the forum !

My heart goes out to you, your child and family. We all feel so much for the
youngsters with this cruel disease.

At the moment our youngest lupus sufferer is 10, and we have only had a couple of parents of younger children. Even though the generals apply to kids as well as adults it would be wonderful for you to get in touch with parents of very young children.

There are some links at the top of the Paediatric Section that might prove helpful,
in particular the paediatric lupus centre at the hospital for special surgery headed by Dr Lehman.
It may be that the LFA could help in some way. I mentioned the need for paediatric lupus support to them a while back, advising them that we had started up on this forum and a great need for support.

We will help you and your family as much as we can - the parents need the emotional support too !

I suggest you talk with the school about coping with difference and disability, "otherness" also some lupus awareness and your son is old enough to learn to deal with it.

I have been asked by very small children what's the matter with my skin - they have been happy with the reply that it isn't working properly, sore places, and the reassurance if need be that it is just me and they can't get it from me - my granddaughter was concerned because her only experience of 'funny' skin was chickenpox. I also compared it with her mum's eczema.

Bye for now - do keep posting - one never knows who is reading, just waiting for another parent in a closely similar situation and of course the parents of older children will understand the special issues and have ideas how to cope with them.

All the best

Clare

[Pat2]

Hi Melanie,

I don't have any advice, just wanted to say sorry that your child has to deal with this. It is hard for adults to cope with problems, so it really breaks my heart to hear of a child going through it. My thoughts are with you. Lots of gentle hugs to your child.

Pat

[Nell]

Hi Melanie,

First like everyone else I want to say how sorry I am that your son and yourself are having to go through this. As the LFA literature states SLE in a young person is one of the most difficult things a family can face. My daughter is also six and I belive her symptoms are indicative of SLE but as of yet her blood work has been pretty much normal, aside from a SED rate of 45 during what I belive was a flare but was decided to be a virus. We just had an appointment at a Rhematology Clinic yesterday and were told that her symptoms are "normal for her", although she did not have any of them prior to getting Fifth's Disease when she was four :blink:.

My daughter also gets very bad rashes from pretty much all sunscreens and the more we use them the worse they become. The ONE that has been working for us is: Kinesys spray-on. The cream version made her face swell and turn bright red--the spray-on is our godsend. Type Kinesys into a search engine and you can find out what retailers in your area are selling it. The texture is excellent as well so she's not hot and sticky while wearing it. I'll be keeping my fingers crossed for you. There is a little girl in our neighborhood who has discoid lupus and her mother gets a sunscreen sent to her from a sister who lives in Japan. They say it's amazing. If you'd like me to get the name feel free to e-mail me. I know I'm pretty much panicked if I can't put sunscreen on my daughter.

Regarding support. The Lupus Around the World site through mito (I think) looked like it had been a wonderful site for parents. Unfortunately it was ruined by porno spamming--unreal. I can't locate it anymore... There were some wonderful and very generous parents there and I think some of them drop by here now again so hold on! A great woman I e-mailed with wrote that her daughter bennifited from going to a counsellor who specializes in treating kids with chronic illness. Apparently when she began to miss a lot of school the counselor went to school with her to talk to the class about Lupus and the kids treated her with more kindness and understanding afterward. I also contacted a LFA chapter out of Shoreline WA and recieved some info. including a book written by a young boy with SLE and his family to help schoolmates (and others) understand SLE. It addressed the physical changes from prednisone and the rashes and showed pics. of the boy when these things were and were not occurring. The website for the chapter is WWW.LupusNW.org. I spoke with Kathy and she was fabulous.

I was thinking I'd try to do an introduction post within the next day or so about the issues with my daughter's health that have brought me here. I think it's a truly wonderful site and you will recieve lots of heartfelt support. I hope you will quickly connect with some other parents of young kids with SLE.

[StevieM]

Hi Melanie,

My name is Stephanie and my daughter is the 10yr old mentioned by Clare.

I would have replied earlier to your post but we have spent the last 4 days in hospital whilst she has had her appendix removed, sometimes life really sucks :(

She has been diagnosed with SLE and Lupus Nephritis and poss Hughes syndrome, this all happened just 2 months ago. Previously it was believed that she had Juvenille Arthritis, and she was diagnosed with that at aged 8yrs. She has however had problems since about 11 months of age....all becomes clear now we know what is actually wrong with her.

We found that information is the best thing that you can give to the school, teachers and children alike, the more they understand the easier things will get. We gave our daughter some of the lupus wrist bands to give to her friends, it has made a huge difference as the children and their parents have found out more about what is wrong with her and they now understand how she feels ( at least a little better) :) It has allowed the children to talk about lupus and they are now very supportive and even quite protective of her.

If you would like to chat anytime PM or email me,

You are not the only mother going through this, although I understand that thought totally
:hugbetter:

Love and Hugs to you and your family,

Stephanie

[Karen_L]

Hi Melanie, Oh what you must be going through.

My daughter is 15 she was diagnosed February 05, I still remember how I felt to first receive the news, you must be devastated and confused especially with you baby (she is still my baby) being so young and having to deal with this.

My heart goes out to you.

Stephanie has given you some good advice, especially about making awareness in school. My daughter became very lonely as she was never able to meet up with friends because of illness and then they stopped asking her. As these were all teenagers I felt our best action (suggested by a member of this site, sorry I can't remember who) was to have a night where we invited all her friends around, I turned it into a sleep over (13 teenage girls!!!) Vikki explained to them the basics of Lupus, what it meant to her etc and that no one could get it off her, she then gave them a chance to ask her questions. This had great results, if she is ill and missing school they visit to see how she is, if she forgets her sunscreen, two of them have small bottles of spares for her and remind her to use it etc. When she has needed to go to school in her wheelchair two of them have met her in the car park and taken her into school and always make sure that someone will meet her to take her to her next class. As Stephanie has said, they do become protective once they understand.

Maybe if you can explain to the children at school and maybe make a couple of them sunscreen monitors (just where they remind him to have it put on,just an idea) the kids will except what is wrong with your little one.

I do hope this will be of some help, sometimes a mix of ideas can help you to choose what is best for you.

Take care

Love Karen xx

[susan01]

Hello Melanie: I just happened to pull up this thread. I as so tired I didn't read it all. I will come back later. I posted a thread under symptoms about my daughter's heart. I am sorry to hear about your son. I am exhausted and know how alone one can feel. My daughter is being followed by a ped rheum but has not been diagnosed as of now. I'd say more, but I have not recovered from my ER trip. Check in later. Susan

[kdmr]

My 12yr. old daughter was diagnosed at age 10. It's been 2 1/2 yrs. and the important suggestion I would have is to get a Pediatric Rheumatologist. She is on adult meds. and thanks for the Children's Hospital we are no longer questioned about the perscriptions when we pick them up due to her being younger. We live in CA and drive about 200 miles for the appt. but it is well worth each month. Hope this helps you some. She doesn't have the rash, she has organ damage.