My Daughter's Symptoms

[cclnikki]

Hi everyone,I am glad to find this place. It looks like a great place. I am having some problems with my 2 yr old daughter. She was diagnosed with Celiac Disease in July of this year. And about 1 month ago I noticed she had a malar rash on her cheeks and over the bridge of her nose. It gets brighter in the sun and even natural light. Let me just list symptoms and you decide:
1. Malar rash
2. sometimes sensative to the light
3. Consatant temp of 100
4. mouth ulcers
5. fatigue
6. rashes
7. hair loss
8. weight loss
9. borderline anemic
10. inflammation of joints
11. frequent fevers

She has an appt scheduled for this monday at a childrens hospital with a rheumatologist.
Thank You

[zara]

Lupus is difficult to diagnose, but she definitely has enough going on to warrant being seen by a rheumy to have blood work done.

[Joandublin]

Hi again Nikki!

I am so glad that you have the appointment coming up soon.. I hope that some other members might be able to offer you support. We have a few members here who are parents of younger children with SLE. If they are online over the weekend, I have no doubt they will respond....

Best of luck on Monday and be persistant.....

Luv
Joan:rose:

[tiffsmum]

Hi Nikki
All I can say is when you see the rhuematologist...If there is anything you want to know... ask!!!!
when my daughter was diagnosed at 13yo i knew nothing about lupus (SLE) didnt have a computer to access information...
first few visits left me blank as he didnt really tell me much...i soon learned that if i wanted to know anything, i had to ask....It wasnt long before he started telling me everything off his own back...over the 7 years we built up a good relationship and even this last time in hospital when she was seriously ill and under 4 different teams of doctors...they all included me in discussions...which helped a lot
Good luck with your appointment

[helloos]

Hi Nikki

Good luck with your appointment and do make a list of her symptoms to bring with you and also all of your questions.

[cclnikki]

sorry,forgot to mention my daughter name is nikki.
I am very anxious for monday. I think she may be starting a virus or something, Or maybe not alot of times she has been getting a viral looking type rash sometimes with or without fever. But when with a fever she gets very sick and lethargic. She is sick every month or so. And the dr's usually just say a virus,probably becuase they dont know. One time she got a fever her WBC was norm it was I think at 5. So I think that meant no infection. Maybe from the celiac but who knows.
I just don't want the dr to say these symptoms are from the celiac. Because alot of the symptoms came after the celiac diagnosis and on the diet.
Thanks I will let you know how monday goes.
celina &Nikki

[cclnikki]

Let me also ask what made you and the dr think of lupus?
Thanks again

[Joandublin]

Hi Celina:)

I am sure you are very anxious about Monday but make sure you tell the doctor that a lot of her symptoms (list them) have only come on after the diagnosis of Celiac and being on the diet. It is very possible for autoimmune diseases to overlap so Nikki needs to be checked thoroughly for any and all possibilities at this stage. She also needs to be monitored very regularly I would say.

As for what made my doctor think Lupus - he didnt! Basically for me it was a combination of many 'seemingly unrelated' symptoms and eventually one mornings online research that pretty much convinced me there was something autoimmune going on in my body. I printed out what I had found and made an appointment with my GP and sat down and told him my concerns. He then sent off some blood tests and this process led me to the start of a Lupus diagnosis. I had no idea what Lupus was before this.

So you can see how important it is for us to be our own advocates....:)

Best of luck on Monday and keep checking your post as other members may have something else to add.

Take care
Luv n stuff to you and Nikki
Joan:rose:

[cclnikki]

Hi again. Thanks I have the list in my bag and making sure to tell them most of them started after the celiac. And she has been on the diet for just over a month. It is not for 3 more hrs. But I will post when we get back.
Thanks
I just don't want him to say that all these symptoms are celiac. Because they are not.

[cclnikki]

Let me just ask how long after seeing you dr were you diagnosed. I just dont want her to keep suffering if this is lupus.
I am not sure if it is in the family or not,my family and my husbands keeps thing covered up pretty well. Just like the celiac we don't know where that came from.
Thanks Again

[cclnikki]

Were back the rheumatologist is very nice and she ordered some more Blood work I think an ANA and sed rate and liver tests and bun. I can't remember what else but we should know in a week or so.
She said she could also have arthritis.

[Joandublin]

Welcome back...!

Thats great that the rheumy is ordering those tests. Sounds like it was a good appointment. Fingers and toes crossed for Nikki. I hope she picks up soon.....

Let us know how you get on.

Take care
Luv n stuff
Joan:rose:

[cclnikki]

Just got the bad news that my older daughter tested positive for celiac also and now we have to schedule an appt and an endoscopy. How awful is this?
Celina & Nikki

[Joandublin]

Oh Celina:sad:

What awful rotten luck:sad: . I am very sorry to hear that. How old is your other daughter?

Sending you hugs and support :hugbetter: :hugbetter:

Luv
Joan:rose:

[cclnikki]

She will be 7 in October. Her GI visit with the dr is scheduled for Oct 19th then from there we schedule an endoscopy. But what is stranger is I got a copy of her blood work and tell me if this is strange.
She was not sick either:

WBC- 4.4 L Norm: 4.5-13.5
RBC- 3.96 L Norm: 4.00-5.20
Hemoglobin- 11.0 L Norm: 11.5-15.5
Hematocrit- 33.1 L Norm: 35.0-45.0

Lymphocyte % 62.0 H Norm: 25.0-55.0
Neutrophil # (ANC) 1.0 L Norm: 1.9-7.5



Iron 29 Norm: 28-170

Thanks if you any of this

[cath]

Hi Celine,

You probably know more about celiacs than me, but from my understanding iron deficiency anaemia is pretty common and is caused by the impaired absorption.

The blood results from your older daughter show that she is just slightly anaemic and that her iron reserves are on the low side. So this probably makes sense in light of the recent diagnosis. The labs are only slightly 'off' and sometimes when anaemia developd slowly we just get used to it without feeking too unwell.

Good luck with the endoscopy for her and her new diet (or does your whole family eat the same?)

Hope you get some good news soon....

X C X

[cclnikki]

Trust me It would be easier if we all ate the same. But it is just too expensive, So I just have to watch everything. But she still has to eat normally until after the endoscopy.
Her iron levels being low started when she was very young around 2 her iron would bounce between 9-11 and normal was 12. Nicole my younger daughter is borderline anemic. I emailed the dr and asked if there is something to give them,to help it out.
Thanks for the great words

celina

[cclnikki]

I emailed the rheumotologist and she said she has some tests back and they are fine. But still waiting on a few more reguarding the fevers. I don't know which those would be. This was only 2 days after the blood was drawn. So I am not sure how long it takes to get the others back. Hopefully We will know soon.
I'll update ya.

[cath]

All the best with waiting and worrying over the results. I'll keep a look out for your updates....

X C X

[charlett]

My daughter was 4 and diagnosed with Juevinile Rheumatoid arthritis, now Lupus at 15. She went into remission at 7. Flared again about 13. Celiacs is often associated with diabetes type1. But she would have high sugars. She may have systemic Juevinile reumatoid arthritis. Theree is also a disorder called mixed connective tissue disorder. There are some infectiuos things they will look for too. Juts keep praying and believing it will be OK. You will get through this-it is hard. Let us know what they have to say. I wish you well Charlett:p

[charlett]

When my daughter was four she ahd a swillen knee. I took her to the dr, they sent us to a rheumatologist and tole me my daughter had JRA(juevinile rheumatoid arthritis). She went into remission at 7. She flared at 13 and after about two years the came up with mixed connective tissure disorder/ Lupus. Theses kids also get systemic JRA, presents with fevers usually at night. They will check for infectious diseases also. They should check for lymes too.Celiacs is often associated with type1 diabetes nad Cystic fibrosis?(I think). I hope all goes well with the pediatric rehemy, they are eally wonderful at what they do. I know thay give my daughter excellant care. Keep us posted. wishing you well . This is a hard time, but you can do it. My thoughts and prayers are with you. My daughter is doing well. BAsically lives a nornal teenage life. :) Charlett

[cclnikki]

Soory I havn't replied the boards wouldn't let me in for some reason. But all her tests were fine she said. She still gets the rash and all the other things still. But about the sugars it is weird that you mention that because i tested her a while back for a while and she did have some occassional high readings even when she did not eat. But then I would bring her to the dr and they would be fine. But on her recent BW her reading was 67 and she was not fasting either. So far no more fevers yet. We don't see the rheumy again until Dec. but she sees an opthanologist next month for the light sensativity. Lets cross our fingers that is fine too.
Thanks for the responses

[trapped]

im prob a bit late but i just wanted to offer my support. im thinking of you n i hope you get some answers soon. i would make sure u and ur partner get tested too for it as its meant to be genetic - it runs in my family.

i dont know whether this will help but my mum(i dont have contact with her otherwise i could b more helpful with advice) had it as a child apparently quite severe but then had fourty years respite from it where she was able to eat normally.

Im so sorry to hear nikki has it n ur 7 year ld might, that must be hard on both of you. keep ur chin up and dont give up hope.

tak care
sam