Looking for info for my son

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New Member

Date Joined Dec 2007
Total Posts : 9
   Posted 12/4/2007 9:14 PM (GMT -6)   
I stumbled across this site while doing yet another search. Every time I plug in my son's current symptoms, I end up looking at pages of hits mentioning lupus.
Our background:  birth to 4.5 years:  severe multiple food allergies, gastro issues, significantly low IgG (175- 300), one mild ear infection, one serious illness requiring hospitalization (believed by the admitting doctor and attending staff to be parvovirus due to exposure and appropriate incubation time, but he doesn't have the antibodies), mild asthma, one episode with the flu--nothing else. We were told he *should* be sick all the time. He wasn't. He also nursed past four years old. Could be why he didn't get sick.
Eight months ago, at 4.75 years, he started having joint pain. It's rarely isolated in a single limb; it includes arms, legs, wrists or, rarely, ankles, or any combination thereof. The degree of pain and the length of the episodes vary.  The longest he's gone with no pain is almost two weeks, but usually it occurs a couple times a week.
In the last seven months, he's been sick at least 9 times, usually a day or two after we've gotten together with a homeschool group. It's usually follows a similar pattern:  headache, sore throat, pain in his arms and legs (in September, though, it was his hands. They hurt enough to lead to frequent tears.), low grade fever (100-100.7) for three days and a spike on the fourth day. His most recent illness, two following another virus, lasted only about three days, but his temp was higher. For several days after he felt better, he still had a fever in the evening. This past Saturday, he was up most of the night crying because the pain in the joint on his left arm was so bad.
Our ped. moved a little further away (it was already a 40 minute drive to her office--we just really liked her) so we've been trying to find someone closer but we're on our second ped, and I'm starting to feel like an over-rective mom, except that I do have two older children and therefore some perspective of "normal". One ped tried to dismiss the pain as growing pains. We've seen an immunologist at Children's in DC who isn't overly concerned because his IgG was 443 in August and 500 in September; we're supposed to do a tetanus vax, but I won't do it when he's sick and we had several other tests done in October and needed to get through those prior to the vax.
They've tested for sickle cell (negative) and they looked at his thyroid (normal). The ped. said they did a blood test for juvenile arthritis and it was negative, but I've recently read in every source I could find about juvenile arthritis that there is no reliable test for juvenile arthritis. It's dxed by exclusion, and should really only be done by a rheumotologist. So I'm thinking the ped was off somewhere...
His ANA is negative, but I wonder if an immuno-comprised child who doesn't produce other antobodies would necessarily produce those. I don't know. I'm just running out of places to look.
We're in the process of transferring all his records back to the original ped because, even though she's further away, she's good and she knows him and she won't dismiss my concerns.
Oh, lastly, he has horrible eczema when he is exposed to certain allergens. So, we notice changes in his skin. There have been several times lately that he has had a slightly raised reddish rash on both cheeks, across his nose and sometimes on his chin. It's not his normal eczema.
Thank you so much reading this if you got this far and for any insights you might have!

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 12/4/2007 11:33 PM (GMT -6)   
Glad you found us, welcome to the site. How old is your son?

I don't have children or experiance w/childhood lupus, but there are some members here who do have experiance and will be along shortly to help answer your questions. We also have some younger members who have been dx at young ages (I think 10yrs old was the lowest age I've seen). Several parents who have concerns about auto-immune diseases in their children post here.

You might want to ask your regular ped. if she thinks there might be benefit in checking in with a rheumy -- if there is almost always joint pain w/the illness it seems like a reasonable check to carry out if you can.

See the link on my signiture to the 4 of 11 symptoms list. Some rhuemys try to stick just w/blood work, but many of us have lupus but have never had positive ANA's -- it really is important to have a rhuemy who listens to all symptoms.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

New Member

Date Joined Dec 2007
Total Posts : 9
   Posted 12/5/2007 12:10 AM (GMT -6)   
He's only five. I know the majority of pediatric cases are kids over 10, but I've also read that way too often doctors overlook boys and younger children.
My concern is not only the pain he has *during* illness, but the pain that has been occurring between illnesses, when nothing else is going on.
I have found several ped. rheumatologists in the region, but they all require referrals, even though our insurance doesn't. So, I'm just waiting for the records to transfer back to the other ped, who won't just dismiss these pains as growing pains or my imagination.
He also has significant gastro issues, including damage to his stomach and intestinal irritation.

Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 12/5/2007 9:28 AM (GMT -6)   
I would push really hard for that referral to the ped. rheumatologist, lay on the steps of the pediatricians office if you have to. Your son has no one but you to advocate for him... and you are doing a phenomenal job! Years ago, my oldest stayed in childcare with a woman who was raising her grandaughter. The grandaughter had severe RA, I think she was around 7 at the time. She was always in her little bed that was set up in the living area. I remember talking with the grandmother about the frequent illnesses that she had, and how she hurt in her joints all over - all the time. You mentioned juvenile arthritis, but what about RA? Although rare, it does happen in children.
Mother of four, full time Systems Analyst
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
Meds:  Medrol injections; Plaquenil 400mg, Vicodin, Benadryl, Zyrtec

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 12/5/2007 11:47 AM (GMT -6)   
I agree, you're doing a phenominal job at researching and pushing doctors hard for answers, or at least a direction to take.  I also don't have children, or much experience with them.  However, what raised the red flag for me while reading your posting, was that your son has extremely bad eczema, and a slightly red rash on both cheeks that is not eczema.  Eczema is a classic sign that something autoimmune is going on.  Psorisis is another skin condition related to autoimmunity.  The raised reddness on his cheeks "could" be the lupus butterfly rash. 
I agree that seeing a rheumatologist is crucial at this point. Don't be surprised if you end up seeing many specialists along this road to a diagnosis.  I think I went through 5 or 6!  It's normal.  Don't get discouraged.  In the end, you'll have a plethora of information that will all help in getting a diagnosis of something, whether it's lupus or not.  All information is helpful.
Also, make sure you take pictures of your son's rashes.  Very important.  If you can, take them in natural lighting with no camera flash.  You'll get a much more precise record of what the rash looks like, its color, texture etc.  (I'm a photographer :-) )
Keep a daily diary of all his symptoms, how much he eats, sleeps, and mentions how often he hurts, and where the hurt is coming from.  Document as much as you can.
As a child, I had continuous problems with strep throat.  It was constant.  I had my tonsils removed at the age of 8 and I seemed to get better once those were gone.  But looking back, that might have been one of the triggers to my lupus.  I remember having extreme eczema at the age of 13-18.  And I had a lot of pain in my knees during those years too.  Along with jaw joint issues that required surgery. Your son's symptoms are not to be ignored at all by any doctors.  They're not growing pains.  Not when he has all these other issues happening.  If you don't like a doctor, lose them!  Going back to your old pediatritian is a good idea.  I'm glad you have someone who truly listens.
Please keep us posted on how everything is going.  Don't be afraid to ask ANY questions you have, okay!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

New Member

Date Joined Dec 2007
Total Posts : 9
   Posted 12/5/2007 12:25 PM (GMT -6)   
One of the pediatricians included ANA and Rheum. factor in his bloodwork and both were negative, so she said that ruled out RA and juvenile arthritis. But, from *everything* that I've read, there is no valid blood test to find arthritis in a child. Less than 10% of kids with RA actually have the Rhuem. factor. So, that was useless. And I've done a lot of reading on here, and it seems that the ANA fluctuates enough that that shouldn't be used as determining the absence of arthritis or lupus.
Our allergists are awesome and our ped. gastro is probably the best specialist we have ever seen. I'm supposed to call our original ped. back this afternoon to see if the records have gotten there yet, and I'm hoping to get in there on Friday.
I've been keeping a journal of his illness, his temps, the pains, and his reactions for the last several months. His appetite is usually excellent, occasionally dropping when he's sick. When he's not sick, his energy level is good, to the point that when a week or so goes by with no episodes, I had started relaxing, thinking that yeah, maybe it *was* my imagination, or maybe it was just a phase, and it's over now...but then he gets sick again, or starts crying and curls up because his legs hurt and I know that this is not normal and I do need to pursue it.
I like the idea of taking pics. Thank you! I've been wondering how to effectively communicate the rash if it's not there when we see a doctor.
I very much appreciate the responses here--thank you!

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 12/5/2007 1:47 PM (GMT -6)   
Hi C-Mom.  My daughter is 22 years old and I still remember all the childhood illnesses.  Your son's illness certainly isn't typical.  My opinion is that because of the recurring sore throat, along with the fevers and joint pain, your ped might want to consult an Infectious Disease doc.  Because of his low IgG he may have contracted something unusual.  I also agree that you should take him to a pediatric rheumatologist.  I hope you get a diagnosis for the little guy soon.  Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 12/5/2007 4:38 PM (GMT -6)   
Butterflake, you mentioned something very good.  I agree that an infectious disease specialist be consulted.  They are VERY knowledgeable people!  That is how I got my diagnosis.  My ID doc was a bull dog.  She rocked.  Without her, I wouldn't have seen a rheumatologist.  My pcp wouldn't give the referal! Isn't that awful.  So yes, those specialists are a good idea.
You are right caffeinatedmom, the ANA and rheumatoid factors will fluctuate wildly.  Especially if your son is experiencing weeks of good health, and then weeks of bad health.  Going back and forth, back and forth.  Many people are now getting the lupus diagnosis with a negative ANA. 
If you can get a rheumatologist and an infectious disease specialist to work together on this, along with your pediatrician.  you're on your way!
Good luck!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 12/6/2007 11:43 AM (GMT -6)   
Hello and welcome. I just wanted to tell you that I can really really relate to what you are going through. My son is now 10, but got sick when he was 7 after he had a case of mono. He just never seemed to get better and had a lot of joint pain and fatigue and seemed to have no defenses against illness. He frequently got strep throat, pneumonia and bronchitis along with stomach flu and missed lots and lots of school. We have an amazing pediatrician who has been the most helpful in all of this. However, docs are still trying to determine exactly what my son has. One pediatric rheumy thinks it is juvenile arthritis, an infectious disease doc thinks it is a chronic case of reactive arthritis due to high levels of strep in my son's body and the pediatrician thinks it is most likely arthritis or a connective tissue disease like what I have.

A few things that I think are really important for you to know are that there isn't a blood test that will tell you if your son has arthritis. Most kids with JRA do NOT have a positive rheumatoid factor and many do not have a positive ANA. My son has had a positive ANA on and off and his ESR is always elevated. Also it is so important that you continue to trust your instincts about what is going on with your son. You are his parent and know him better than anyone else. Luckily our great pediatrician completely trusts what we say about our son and has done a lot of the groundwork in getting help for him. We travel about 65 miles to see her and it is worth it. There are very few pediatric rheumatologists around, so you will probably have to travel for that. It's not as good to see an adult rheumy. We saw one early on who just told us that some kids get tired and have a little bit of pain and sent us on our way.

There is a really good book I want to recommend too. It's a book by Dr. Lehman called "It's Not Just Growing Pains". It's the best book I've read and it is also very easy to read and will help you sort through your son's symptoms. I e-mailed Dr. Lehman about a month ago and he graciously e-mailed me back with names of some pediatric rheumies that he thought very highly of. He would be a good resource for you to find a good pediatric rheumy somewhere around you.

Please feel free to e-mail me. There is so much more I could share with you, but I don't want to make this post too long. You can click on the picture of the envelope below my username and e-mail me. I'd be happy to share more of what I have learned in the last several years. It's also nice just to have another parent to talk to who can relate to what you are going through.

Hang in there and don't give up.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Dec 2007
Total Posts : 9
   Posted 12/6/2007 1:39 PM (GMT -6)   
Thank you!
I've heard Dr. Lehman's book and am thinking at this point that it could be worth ordering. It's really nice to know that he responds to emails. There's a ped. immunologist at CHOP that does, too, and he at least confirmed that I'm not over-reacting.
I'm learning that, particularly with younger children, bloodwork isn't always the most accurate measure.
It's so easy, on days like today, when he's playing with his brother and sister in the snow, to dismiss what's been happening as my imagination.
Oh, I guess it's also worth mentioning that my mother was dxed with Raynaud's Disease several years ago; I think they originally thought it was primary, but she was hospitalized several times last year with an as yet undxed auto-immune disorder. Her ANA was positive, but they never isolated exactly what was happening. She was on prednisone for a good while, and she sees several specialists, including a rheumatologist, but her symptoms are now under control, so they haven't pursued it.
At the time, all we knew about our son's immune system (beyond the extensive allergies) was that he probably had a Primary Immune Deficiency (IgG was below 300), but he wasn't getting sick yet.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 12/6/2007 10:51 PM (GMT -6)   
Hi C-mom,
   I'm sorry to hear your son is so sick. The others had some great advice for you. I'm very thankful to have 2 healthy grown children. I think the first symptoms for alot of us here were throat infection/strep and flu-like symptoms, just as you described in your son.
  You are doing a wonderful job reading, researching and asking questions to find the answers for your child. I know you won't stop till you get the answers and right treatment for your son.
  I wish you and your son all the best. I just can't imagine what your going through. Please keep us updated and take care of yourself in the process. I'm sure you are stressed to the limit...((hugs)). You both will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Regular Member

Date Joined Oct 2006
Total Posts : 193
   Posted 12/7/2007 7:20 AM (GMT -6)   
Have you had your son tested for celiac? Celiac can cause a lot of the symptoms you are seeing. Also, an elimination diet may be helpful in figuring out any foods he may have allergies to. It seems that these days, more children have food allergies than ever before.

New Member

Date Joined Dec 2007
Total Posts : 9
   Posted 12/7/2007 12:58 PM (GMT -6)   
Sterling's been scoped for celiac twice; we also did the genetic testing for it and he has both genes necessary, but his diet, even though the scopes were negative, is gluten-free anyway because he reacts to gluten (as we discovered after giving it to him for one of the scopes) because of an allergy. So, even though he has the genes and may well develop it one day, we may never actually know because gluten is eliminated now anyway.
He has over 20 significant food allergies; we spent his first couple years dealing with that. Which is why his very low IgG didn't get much attention from doctors at first--everyone was really focused on figuring out the allergies and getting him beyond that. He nursed for over four years, while I was on his diet. His first ped., the one we're going back to now, is thinking that's why he wasn't getting sick before--he had my immunities.
I'm pretty anal about reading labels; we eat very, very little processed food now, and I'm now an expert at tracking down the source of an ingredient (he reacts to medical-grade corn, which leads to a lot of interesting discussions with pharmacists).
We have two allergists, one local and one at Hopkins, as well as an excellent ped. gastro--this is definitely different than his allergies.

Regular Member

Date Joined Oct 2007
Total Posts : 33
   Posted 12/7/2007 2:11 PM (GMT -6)   

Everyone had great ideas.  I just want to add I have had a negative ANA and a positive ANA.  I have more than one autoammune diseases.  My daughter 17 has had many bldwk. done ( she did have a positive ANA)with nothing really showing so the Doctors thought she was depressed, Fybro, chronic fatigue etc it was so frustrating.  The teaching hospital sent her to a psyc, and she was in tears thinking nobody beleived her.  It was her psyc that was alarmed then she got Rheum. to come up and see her strait away.  She was having little hallucinations and I didn't even know, she never told anyone.  Long story short she went on in July this year to have many seizures, brain clott,difficulty talking and walking,and small stroke.  I know maybe this story isn't that comforting.  She is on chemo right now to shut down her ammune system as steroids weren't working.  She is doing well, but still has days when she so tired, memory problems but is 85 percent better than last summer.

The moral of this story, you are his Mother you know better than any Doctor who your son is and that he is not well.  I knew my daughter had lupus for about 1 prior and milder symptoms in grade school and it took along time to finally get her diagnosis.  And I never would have imagined that our lives would have been through so much hell last summer.  Stick to your instinct and don't give up!



Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke

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