[Jace]

Good Morning,
My name is Dar and I have a son Jace who has been sick for about 2 1/2 years. He was really tired, went to the doctor. We were told it was Mono. Tiredness never went away, went from 135 lbs to 120 lb. Red rash across his cheeks and nose, white blood count low, temp is low, not high. Tha fatique is the worse problem according to Jace. Ana is negative. The rummy said we could try medicine but she wanted him to go to Mayo Clinic first. We went, they found nothing wrong but put hom on Prozac. Tha doctor here took him off Prozac and said we would keep searching. Jace is a very polite and sweet boy but his mood has turned to aggression. I want the sweet kid back and for him to enjoy his teenage years. This weekend he acted so depressed, I haven't seen that before. I'm worried, what do I do as a Mom??

Thanks for letting me vent.

Dar

 

[Katharine]

Hello again Dar,

Thanks for the intro post. I'm so sorry that Jace is having to go through all this. It's difficult enough being that age without all this going on.

His symptoms certainly warrant investigation and it seems that your rheumy was on track there. It is unfortunate that the Mayo visit went as it did. I believe there are some very good docs there.

ANA can remain negative for quite some time - I'm still waiting for mine to go positive, maybe it never will.

I'm wondering here if your rheumy might not be willing to try a referral to a dermatologist and ask for a skin biospy to be done? It is not a "sure" method for diagnosis but has helped some people here, myself included. The only "rashes" I really had were the malar and a travelling itchy rash that never stayed long enough for a doc to see. My biopsy was done on an area of "unaffected, unexposed" skin (my stomach). Thankfully, after years of negative ANA tests, the test came back a very strong positive and that combined with symptoms and family history meant a diagnosis for me.
Of course, tests, including biopsies, can come back nagative in patients that do have lupus but it might be worth trying.

Other than that I think the essential is not to give up. It's sometimes a case of pester pester pester until you get someone to really listen.

It doesn't sound as if you are the sort of person who would give up,

all the best,
Katharine

 

[debatat]

Hi Dar

I am sorry that your son is ill. It is hard enough being the mother of a teenager without adding in the stress of an undiagnosed illness. Also as Katherine said it is hard enough being a teenager without being unwell. I would advise you to keep trying with the doctors, as mothers we 'know' when something is not right with our children.

I hope that you get some answers and proper treatment soon.

Deb

 

[onetay]

Dar,
Welcome and I am sorry to hear that you and your son (Jace) are having to deal with an illness like this at a time in his life when he should be having fun. Have you called the doctor about the depression, if you haven't you should. There are medicines that can help with that part of his illness. Anytime someone gets ill for a long time it can take a toll on their emotional state of mind (even for the best natured person). It is important that he be as normal as he can be for himself. I know right now the fatigue is bad maybe planned extra little naps would help in the long run for a little more energy. Be glad that you have a doctor that will keep search for an answer for you as most just say there is nothing wrong and start making you feel crazy when in fact you are not. Dar all you can do is be there for him and support him when he needs it the most and if he is a teenager, that is a difficult time without adding an illness also. We are here if you need to chat, there is usually someone on the site and they will chat with you anytime. Good Luck hon and my prayers are with you to find an answer for both of you real soon.

 

[Jace]

Thank You guys so much for the information. I did call Jace's doctor yesterday and they are seeing him today. The last couple weeks have been hard on him, but he always stands up and thinks of the postive. That is why being depressed scared me so much. Can they treat it as Lupus even if the ANA comes back negitive? There is so much to learn!!!

Have a great day,

Dar

 

[Lily]

Hi Dar,

I'm sorry you son is so ill with no answers as yet. It's a good idea to go back to the Rheumy with him and have him reassessed. Provided that Rheumy is going to give thorough assessment and run a full gammut of blood tests not just the ANA and will also run a urinalysis to check for kidney problems which are often silent until well advanced. If you don't feel the Rheumy will do this then it's best to either post here or ring your local lupus chapter and see which docs near you are best at diagnosing and treating Lupus.

A good Rheumy who deals mainly with Lupus and other connective tissue diseases would medicate if there was overwhelming evidence of Lupus even if the ANA is negative. Only a small proportion of Lupies are ANA negative, something like 3% but it can happen. Still the doc has to be sure there is not something else going on that could explain the symptoms.

Another (or additional) option is to see a Dermatologist and have any rashes biopsied, some people with a negative ANA have been diagnosed that way. It's a good idea to take pics of any rashes as often they disappear the day of our appointments, at least that way the doc can see what you are talking about.

Sometimes people are positive on a anti Ro test and not on an ANA test.

love
Lily

 

[Jace]

Pediatric Rheumatoligist

Hello Katharine, Deb, Tammy and Lily,

We are waiting to hear when the appointment with the pediatric Rheumatologist is. I will let you all know is said there. Jace does have Raynards. In addition to his white blood count being down , the neutrophils are also low. Not sure what that means, but I know all will come together eventually. The doctor also said Jace has asthma, is this common? Jace says he does not have any trouble breathing, but he always fails the breathing test. Could this be from being so weak and tired?

Hope all has a great day !!

Dar:worried:

 

[debatat]

Hi Dar

Sorry to hear that your son has been diagnosed with asthma. It is fairly common. Both my boys and myself have asthma. My youngest son especially suffers. For him it is the asthma that makes him weak and tired, when it isnt under control. The consultant that he is under has been brilliant and thanks to his educating me and new drug treatments my son is able to lead a 'normal' life. This includes playing for a footie team!!!! Something that just wouldnt have been possible a few years ago.

What meds has the doc given your son for the asthma? I hope they help him to feel better.

Deb