Author Topic: My 5 year old son has just been diagnosed  (Read 3521 times)

Zeppelinsmum

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My 5 year old son has just been diagnosed
« on: February 21, 2011, 02:00:06 AM »
My 5 year old son was diagnosed 5 days ago. His only symptoms are recurrent parotid swelling. They tested him as my husband and i both have Autoimmune diseases (not Sjogren's).
Id really like to know anything about other children with this illness, how were they diagnoses, what age and what symptoms did they have while they were young?
Thanks xx

LizPetillo

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Re: My 5 year old son has just been diagnosed
« Reply #1 on: February 21, 2011, 03:34:09 AM »
I'm so sorry to hear this.  I don't know any children with this, but just letting you know that I'm thinking of you and your family ...

gurs

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Re: My 5 year old son has just been diagnosed
« Reply #2 on: February 21, 2011, 04:21:34 AM »
wow-that's the youngest that Ive heard. I was diagnosed at 13 years old..(Im 46 now).....they originally thought I had cancer because of the swelling of the parotid glands.
I remember that fruit juices used to aggravate them like crazy. I always had really low white blood count. My mom said I was pretty normal, EXCEPT..i was always
tired..went to bed very early everynight, but pushed myself and stayed very active outdoors so that helped. Other than that, I had no other symptoms like joint pain and the dryness
kicked in around 13 years old when my hormones started to change.

52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Cheryl

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Re: My 5 year old son has just been diagnosed
« Reply #3 on: February 21, 2011, 04:35:57 AM »
Mum,
I'm so sorry to hear of your son's diagnosis.   There are a few members here who have young children with Sjogren's.  I hope that they will see your post.  In the meantime, you will find information and support here.
Hugs
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Scottietottie

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Re: My 5 year old son has just been diagnosed
« Reply #4 on: February 21, 2011, 05:21:41 AM »
Hello Zeppelinsmum  :)

Welcome to Sjogren's world. I'm so sorry that your son has developed this at such a young age. He is not actually the youngest we have had in here. There is a four year old girl whose mother used to be a frequent vistor. I think she set up a Facebook Group and probably spends more time in there now.

We also have a young lady who started coming here when she was eight.

SjS is such an individual disease. It affects some a lot more than others. It seems to be completely unpredictable. Please don't panic about some of the stories you read in here. I have a theory that many with SjS probably don't need a support forum because they do not feel unwell enough to need it.

Take care - Scottie  :)

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lynnmarie219

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Re: My 5 year old son has just been diagnosed
« Reply #5 on: February 21, 2011, 07:47:06 AM »
Welcome Zeppelinsmum,

Sorry to hear of your young sons diagnosis. Please come here to read all you can for any information you need...and yes...there are other parents on here as well and I hope they see and respond to you post.

Just remember that sjogrens is a very individual process and affects each person so differently. One thing about your son being diagnosed so early is that hopefully they can work with him and treat his issues now so he can lead a fairly symptom free life!

seren

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Re: My 5 year old son has just been diagnosed
« Reply #6 on: February 21, 2011, 12:19:21 PM »

I am so sorry your son has this diagnosis at such a young age  :( 

I remember another member's daughter having Sjogren's and she was only 4 at the time, if memory serves correctly.

My daughter is 19 and although she has not had a diagnosis, she also has frequent parotid gland swelling.  I  am hoping she does not turn out to have this syndrome like I do.

At 5 years old, (bless his little heart) I would be very concerned like I am sure you are.  Please try and take one day at a time and research all you can as it helps to know what is what, at least it does for me anyway.. Remember also, this is a very individual condition and the symptoms and severity of them vary greatly.  So take heart and keep positive if you can!!  :)

Take Care
Paula x

Zeppelinsmum

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Re: My 5 year old son has just been diagnosed
« Reply #7 on: June 20, 2011, 06:53:07 PM »
Thanks everyone, its still so new for us. He is still getting parotitis and that is all he has been through so far (except all the testing!!) He had an ultrasound of his face and that just confirmed the disease even more. His recent blood test last week has shown that it is secondary SjS. We wont know what the other disease is until he has more symptoms. Lets hope he is older when that happens ???

Bucky

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Re: My 5 year old son has just been diagnosed
« Reply #8 on: June 20, 2011, 08:06:45 PM »
Hi mum - welcome!

Also, something to keep in mind for your young son is his dental health having Sjogren's.  If he has dry mouth issues, it can affect his teeth.  Make sure he gets regular dental check-ups, and let the dentist know that your son has Sjogren's.  It was my dentist that suggested I get tested for Sjogren's because his dental instruments were sticking to the side of my cheek during a check-up.

Especially, when your son starts losing his baby teeth and permanent teeth start coming in.  The lack of saliva can really do a number on your teeth because it can't wash away bacteria and therefore causes many cavities and other problems.

Here is a link from an older post from a lady that use to visit our website, she doesn't come here any more (unless it's as a guest) - you have replied to a few of her older threads since you've joined.  She's the one that her daughter was dx'd with Sjogren's at the age of four.  Not sure if any of the info in this post will help you, but you might find something helpful in it.  http://sjogrensworld.org/forums/index.php?topic=8635.0

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One and only

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Re: My 5 year old son has just been diagnosed
« Reply #9 on: June 21, 2011, 08:18:33 AM »
So sorry to hear this,, its bad enough the dam disease exist,, but it should never strike down a 5 year old,, make me rethink about that guy  who said He never gives us more then we can bear,, ya right

eyeamdry

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Re: My 5 year old son has just been diagnosed
« Reply #10 on: June 21, 2011, 04:14:23 PM »
Hi Zeppelinsmun-

Sorry your little guy is sick.  This forum is great for information although we don't have little ones very often.  Please remember though, that your attitude through his life will have more affect than you know.  Your husband too, of course.  Kids are not dumb and at 5 he has known sick kids, or seen them on tv.  The best you can keep positive in spite of what happens is important.  Just imagine if he was Juvenile diabetic, which happens when kids are just months old sometimes, he would need blood testing several times a day and insulin shots several times a day for the rest of his life.  A parent would have to take a positive attitude like "this is the way it is and we'll make it ok."

I just wanted to use another example of what can occur with children.  Certainly I am no example of how to take care of sick kids.  I hope he stays well in spite of what seems to be happening and I hope you and your hubby can keep your strength and stay positive.  Take care.  Lucy

susan

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Re: My 5 year old son has just been diagnosed
« Reply #11 on: June 21, 2011, 06:10:58 PM »
I am sorry to learn of your son's diagnosis! However, he has 2 parents who probably know a lot already about autoimmune issues and can empathize completely.
Wishing you all good luck with this.

sjogrens53

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Re: My 5 year old son has just been diagnosed
« Reply #12 on: June 21, 2011, 11:33:39 PM »
I wasn't diagnosed until my late 40's, but I'm almost positive I've had sjogren's as far back as I can remember.  Same pain, same symptoms then as now.  As a very young child I had severe body wide pain at times, especially in the shoulders.  I've always been sensitive to the sun, but when I was about 6 years old, a Dr. told my mother that I must be allergic to the sun (due to some kind of strange rash). Your son is lucky to have people in his life that will understand and also be up on treatments.

Jozee

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Re: My 5 year old son has just been diagnosed
« Reply #13 on: June 21, 2011, 11:49:05 PM »
i wasn't diagnosed until I was 40 however I had symptoms as early as 3 years old.