[jackimosmama]

Hi. I am Jack's mom!
My son has been having problems since last summer. We didn't really notice anything odd the previous summer but we were also in a transition period with housing and spent a lot more time indoors. I can begin to pinpoint his problems as of last summer. I thought he was doing better but since it's Spring and he is outside more often I have noticed everything happening again.

Last year was aweful. It started in June - the 5th - we were on our way to the circus and i noticed he had a massive lump on the side of his head. It turned out to be a severely swollen lymph node. We went toi a few doctors and denied surgery because they had no idea what it was or what it was caused by. Our logic: Was it the cause of his sickness or a symptom? Until we knew - no one was cutting into him. They still don't know. The same node
(it is the worst, the others don't get as bad) swells predominantly during the warmth of the year, accompanied by fever, appetite loss, butterfly rash, rash on arms, lethargy, sensitivity to light and complaints of hurting all over - his hands and feet tend to be the worst. He was tested for everything under the sun (mono, etc) but they never mentioned anything about lupus.

It wasn't until a friend of mine in my CNA class was talking about her symptoms with lupus that I started to realize the similarities in their problems. So please don't think I just searched all over the internet until something fit- because believe me I did my searching but it was based on the one lymph node- and I never found anything. I am ok with admitting that even I was looking at it from the wrong direction.

We went fishing the other day, it was warm but not hot- it's northern MN... within a half hour he was sleeping on the floor of the boat, he woke up about a half hour later puking and his face was just red... despite the 50spf we use on him. He's been sick since.

I don't want it to get as bad as it did last year- there were times he cried all day about being in pain for no apparent reason. He would get such high fevers that I couldn't break them with ibu or tyl and at one point he blistered and ended up in the urgent care unit screaming about how everything hurt and he was borderline dillusional. He tends to have these bouts soon after an outdoor event or anything stressfull- like when we moved. All other mentioned symptoms also tend to coexist at the same time.

Anyway I know I am babbling a lot but I just want to know if I am nuts for thinking it could be lupus. I want to talk to the doctor about it but want to know what to ask. They don't really want to even see me anymore- they just keep telling me he is fine, but I know he isn't!

Can anyone give me advice on how to attack this? I already have lists with symptoms, whens and wheres and whatevers... I would like to compile a list of questions and recommended tests.

HELP ANYONE?

THANK YOU!

 

[keebler]

Hi Jacks mom,

Welcome to the lupus site, it is nice to meet you.
I am sorry though what brings you here. We as mothers only want the best for our children.

Here is a link that is posted in the top of the paediatric form. This will give you a good start.

http://www.thelupussite.com/forum/showthread.php?t=74085

Have you taken pictures of his rash and swollen glands? That way you can show the doctors what you are talking about. They will probably want to keep the pictures for his records.

What doctors have you seen? I would recommend going to a rhuematologist who specializes with lupus. A peds rhuemy would be a good start. Most GP's dont know to much about lupus.

It sounds like your little one is very sun sensitive. The sun makes lupus symptoms worse and causes a great deal of pain. Staying out of the sun when it is its strongest during the day is a good idea.
Florescent lights can make us sick too. (uva) Or even catching the sun while in the house.

Maybe you could gently steer the doctor towards the topic of lupus.
My heart goes out to you and your son and family. If there is anymore that we can do for you, don't hesitate in asking questions. We are not doctors here but we share our experiences that we have going threw having lupus.

I know people up in Northern Minnesota.
Take care you will be in my thoughts.:hug:

Love,
Lyn

 

[Simetras]

I'm sorry to hear your son is having these issues. I feel for you both!

My opinion is that you should simply keep an accurate list of symptoms (when, where, after what activity, pictures if applicable, etc.) until the next appointment with his regular physician. When you get there, simply describe in detail the symptoms. It's okay to ask if you should be concerned about lupus-- the symptoms do seem to fit (I am not a diagnostician!). I think it's more about asking their opinion than going in with an attitude as if it's the only possibility. Remember-- they have been trained to diagnose. But, as the other poster mentioned, some don't know much about childhood (or adult for that matter) lupus. It's okay to suggest.

You need to have an open communication with your (his) doctor. I think if you go in without being 'set' on one particular diagnosis, even if you are leaning towards one......it's okay. In my experience, the doctors only react poorly if I try to self-diagnose and tell them how to do their job. As long as I list my symptoms-- sometimes asking if specific tests like an ANA might be indicated-- my doctors have always been helpful. If they don't think I need the test I have suggested, they explain to me clearly why. Sometimes I insist on a particular test and that's okay too, after the other way is tried first. Catch more bee's with honey, right? I think it's the asking rather than telling that works.

I think if your doctor suspects any auto-immune, they will refer you to a Rheumatologist. If they are not inclined to do so, you have every right to ask their rational for the decision. You need to understand why they are treating your son the way they are, so asking questions is good. Just come in with a list-- I always tend to forget my questions as soon as I set foot in the office!

Best to you and your son. I hope it goes well for you both at the next appointment.

 

[Joandublin]

Hi there and welcome to the Forum

There is definitely something not right with your little boy and I would not be fobbed off with doctors telling you 'he is fine' No three year old should be that fatigued and sick and sore Its completely abnormal in my opinion.

I think you are doing the right thing in noting all his symptoms and what he was doing at the time, etc.

As for how you should approach his doctor... I would say that you are worried that he has something systemic going on as his symptoms come and go and appear differently and on different parts of his body (rash, sore joints, swollen nodes, light sensitivity, etc). That being the case ask your primary physician to run an Anti Nuclear Antibody test. This is a screening test for autoimmune problems and if this his positive it should get him a referral to a Rheumatologist who can specialise in autoimmune disorders (or connective tissue disorders as they are also known). Lupus is one such disorder but there are others as well.

Your own doctor would usually not be in a position to order the more specialised tests (certainly not in my country at least) but they can do the ANA as its considered a sort of screening test. Also bring along a sample of urine and ask for it to be tested as well. A lot can be gleaned from a urine sample.

I hope you can get some answers soon and that your little boy can get whatever treatment is needed to make him feel better. You must be out of your mind with worry :worried:

Let us know how you get on and if we can be of any more help

Take care for now
Joan:rose:

 

[Maia]

You've been given excellent advice already, I would just add to be sure that he has been tested for Lyme disease and other tick borne illnesses given the time of year he was first affected, his symptoms, and where you live.

It is so sad you are being told he is fine when there are some very clear physical signs that something is definitely wrong. My recommended approach for talking to a doctor about this is as follows: tell them that a friend talked to you about her autoimmune disorder after telling her about your son, and ask if the doctors have considered this as a possibility for your son. You can restate all the symptoms and timeline, and request an ANA test be done. Even if they have already run this test before, since his symptoms are ongoing, it is still important to test him again.

You may want to get copies of his bloodtests since this started as well so you know what has and hasn't already been done for him.