Looking for info for my son

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!

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.

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!

 

Ginny

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

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.

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.

                                                               Babs

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.