Looking for answers re. 6 year old son

General
1

Hi there,


I am hoping to tap into your great resources and wealth of experience....

We are currently waiting to see a pediatric Rheumy for my son.

His symptoms:

1. Rashes ( purpleish dots on roof of the mouth), sometimes sore joints in am, sometimes protein in urine, episodes where his nose will bleed 2-4x day for a cluster of a week and then not bleed for months, +ANA and sometimes low Lymphocytes...

He was negative in the other DNA specific tests they did...

My biggest question is re. the rash on roof of mouth... I know the Dr.'s were mentioning Lupus- however as far as I understand they are more ulcers in the Lupus diease?

I have attached 2 photos. I know you are not Dr's ;) But I was hoping to see if anyone else had similar symptoms/experiences...

Thank you in advance for any insight you may have

249-IMG_2919.JPG (1.54 MB) 250-IMG_2914.JPG (2.07 MB)
2

Hi Coco

I am keeping you in my prayers as well. I have not had rashes like that either, and I'm sure you'll get some good input from members here. My heart aches for your son, and I'm glad you are here with us searching for answers. I have learned so much here, and reading on my own than what my doctor's ever told me.

Hugs

3

Hi

My mouth sores were" blistery" You might want to see an ENT. Sorry you are going thru so much with "your little one."Keep searching for answers. If you don't like a DR find another one. I "fired" my ENT this week, won't go into details, and found a much better one. I wish I had great answers for you. It IS frustrating.

Stay positive.

Cindy

4

Cocoloco,

You don't mention if your son is on any medications. Did the doctors test him for bleeding disorders? I don't know what's causing your son's symptoms, but if you don't get answers, you may want to see a hematologist also. The nose bleeds could be related to the red areas on his upper palate. I have a clotting disorder and can bleed in strange places, and also in the joints. Just thought I would add this to ideas that could be investigated.

You said they did DNA specific testing. If you want to get a comprehensive genetic test done, there is a company that is doing them now for a reasonable price of $99. It will show any gene defect and health issue. It would be an excellent and affordable way to know what you may be dealing with, that regular testing may miss. I am currently being testing through this company.

23andme.com

Ally

5

I am so sorry that he has to go through so much at such a young age. I agree that he should see an ENT as the nose bleeds and roof of mouth are somehow related. It could be allergy related too. I would look at every possible angle.

You are a great mother for being so proactive. Keep us posted.

Welcome!

6

Hi!, when come down too ur kids , waiting is not what we want to do-especially when the child is this young!! Stay come when your child say mommy it hurts! Know that the big major emotion steps in when the child see you loose control!! Stay clam!! Have the rash to come in my mouth often , and really I don’t do anything about them -they will go away in a couple of days . And when they come they may look like puse is in them Don’t try to bust them! They well go away. Yes sometimes they do hurt but nothing Major-there’s is no meds that I could advise you to give to the child , only Benadryl …hope that your child feel better soon!..Beverly L.

7

LET ME SHARE SOMETHING WITH YOU ABOUT CHILDREN WITH LUPUS. I THINK I MENTIONED I HAVE SEEN THE YOUNGEST AT 3 DAYS OLD WITH DX OF SLE. REMEMBER, MANY HORMONE CHANGES CAUSE THE ONSET OF LUPUS, PUBITY, CHILD BEARING YEARS, AND MENOP.

MY COMPUTER IS NOT LISTENING TO ME. I JUST WANTED YOU TO KNOW. THE BEST CARE FOR LUPUS IS AT THE CHILDRENS HOSPITAL. ESPECIALLY IF YOU LIFE IN THE LA AREA. I HAVE SEEN A MALE TEEN WITH SLE, AND THEY KEPT HIS SPERM FROZEN. HE IS MARRIED NOW AND HAS 2 CHILDREN AND HE STAYS HOME AND HAS A VERY HAPPY LIFE.

BELIEVE ME, WHEN I TELL YOU THE MOST PROGRESSIVE TREATMENT WITH SAFETY IS AT CHILDRENS HOSPITAL. THE DR. IN LA IS DR. BERNSTEIN. HE IS THE BEST!!! I SUGGEST YOU CONTACT HIM AND MAYBE IF YOU ARE IN A DIFFERENT AREA OF THE US, HE CAN RECOMEND A DR. TELL HIM MICHELE AND JOHN FROM THE ONTARIO LUPUS CLUB REFERRED YOU. HE WILL HAVE NO DOUBTS ON HELPING YOU THAN.

MANY OF OUR CHILDREN OUT OF OVER 200 PEOPLE GO TO CHILDRENS HOSPITAL.

MANY BLESSINGS TO YOU AND YOUR SON.

LOVE MICHELE AND SERVICE DOG RUSH

8

IN REGARD TO THE SORES IN THE MOUTH NAYASTIN MOUTH WASH IS BANANA FLAVOR. IF IT IS FOR A CHILD THEY USUALLY SWOLLOW IT!! ADULTS DO NOT WANT TO BECAUSE IT IS FATTENING.

BEST WISHES FOR THOSE WHO HAVE THE SORES IN THEIR MOUTH!!

always mickey and service dog rush

michele and rush

Beverly L. said:

Hi!, when come down too ur kids , waiting is not what we want to do-especially when the child is this young!! Stay come when your child say mommy it hurts! Know that the big major emotion steps in when the child see you loose control!! Stay clam!! Have the rash to come in my mouth often , and really I don't do anything about them -they will go away in a couple of days . And when they come they may look like puse is in them Don't try to bust them! They well go away. Yes sometimes they do hurt but nothing Major-there's is no meds that I could advise you to give to the child , only Benadryl ...hope that your child feel better soon!....Beverly L.
9

Wow- thank you all SO SO Very much for your words of wisdom, suggestions, personal stories and encouragement!! I was truly blown away!!!

I myself have Psoriatic Arthritis and am on 8 different medications to try to control it. Unfortunately Auto Immune diseases are quite "common"... yes you are right- it is DEVASTATING to think our children have to walk a journey of pain and suffering when we understand what that might look like.

However we know that God is faithful and promises to walk with us each day. Some days are so very hard- as you ALL know living with disease. It is not only hard on those that are sick, but the family as well. I am so thankful for your prayers and do PROMISE to drop back in on this feed and let you know what they say on October 23rd.

Thanks again for your info. and suggestions and for filling my bucket! I will move forward in hope and faith!!!

10

hi my son had spots like this and still gets them when he has strep throat.

11

Interesting Vito- they did swabs several time and nothing showed for him... amazing how the body works hey?

12

With the mouth rash, I would also consider allergies. Not necesarily instead of lupus, but perhaps as well.

Perhaps something he is eating or drinking or brushing his teeth with.

The most common food allergies are

peanuts

tree nuts

fish

shellfish

eggs

dairy

soy

gluten

I cut out shellfish a long time ago becuase I get an immediate reaction (hives).

I later cut out aspartame (nutrasweet) because it gives me migraines and diahrrea (I used to drink diet soda ALL day!).

Finally I cut out gluten, then dairy, and I am on NO lupus drugs right now.

I still have some fibro pain and a bit of inflammation but no joint pain, no headaches, no kidney, lung or anemia problems (which I had before), and I have more energy and can do much more.

The diet can be cahllenging for me, esp. in social situations, but it is worth it.

I know it's harder with kids.

I found out my allergies by getting a blood test for delayed allergies (things you react to 24-72 hours after eating it, as opposed to right away (within 24 hours). in general, it's the foods you can't imagine living without that you're allergic to, and usually you have those for breakfast. So you could skip the blood test and just eliminate the 1-2 foods he eats constantly, for a week. Then on day 8, let him have the foods in a normal quantity and see if he reacts to them. This is Dr Mark Hyman's approach.

Removing "offending" foods has been the most powerful thing i've done for my health, and believe me I've done it all, when it comes to alternative medicine.

http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html

13

wow I'm a former diet coke addict. I totally get that. And I can't have "just a little." that stuff is like crack to me. get me started and i can't stop. Amazing how people will pressure us, knowing how sick we have been in the past. And how strong we have to be to stand up for ourselves, living in a culture that is swimming in junk food. It's tricky to do that without making a scene, esp. if people won't let up about it. Eating and drinking junk is the norm. Ugh. And I like junk! But I don't like being sick. I bring my own food to a lot of family/ friend events. People I know don't bat an eye now, but it was weird at first.

Ann A. said:

My lupus is currently in remission and I know that dietary changes have played an important role. I am currently dealing with ulcers. This is partially the result of me "playing nice" on a vacation with my family. Then last week my grandson asked me to taste some manufactured food like substance from a bag. Two days later I was in immediate care because I had experienced such severe acid reflux that my lungs were impacted. Now I am fighting to keep it from becoming a lupus flare. I am also working on a long term plan to heal my tummy and esophagus.

I must also do a better job of educating my family. This summer my daughter in law was very proud of putting us up in a residential hotel that sold Coca Cola products. I am a grateful recovering Coca Cola addict. I have not had one in more than three years! And then I need to be more assertive when asked "to just taste a little." Sometimes "just a little" is way too much for us autoimmune people.

I hope your son's dx is something much simpler. But if he has an autoimmune issue, food allergies and sensitivities will be so very important. About 70% of our immune system is in our digestive system.

Imma keep praying for you and your boy.

14

just looked at the pix. chances are, his whole digestive tract is that irritated, because of where it is- back in his throat. I'm betting food/ drink is doing it.

15

Thanks for the recent comments- he is gluten free and does not have any processed sugar etc. But I will look into getting him allergy tested for other things that are not on our radar...

Great suggestions guys! Thanks again :)