Lupus, Somatoform Disorder or Both??

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Regular Member

Date Joined Mar 2016
Total Posts : 49
   Posted 3/8/2016 1:35 PM (GMT -6)   
Good morning,
My story is a long one and it involves my 9-year-old daughter.
In September, 2015 she started complaining of pain in her joints, weakness and a stomach ache- after a couple of trips to her pediatrician over the next two months he had her blood work done and her ANA came back positive twice. It was 1:640 speckled.
He referred her to an adult rheumatologist but, before we got to see her, my daughter got strep throat in November and was placed on amoxicillin. After eight days on the amoxicillin she broke out into a rash on the back of her neck and behind her ears. The doctor said to stop the amoxicillin, give her Benadryl and send her to school.
After school the hives were raised, itchy, hot, and spreading (or transient). We took her to the ER and they prescribed two types of antihistamines. She continued to only get worse so we took her back to her pediatrician who prescribed prednisone. The rash/hives continued to spread and only get worse - she began having severe, debilitating, migratory joint pain so we took her to the ER of a children's hospital over the weekend. They suggested serum sickness and sent us home.
When your child is in horrible pain and unable to function you expect answers from your doctors so we took her back in to her pediatrician.
All of this was happening in the span of a week but it was not getting better and she had started having odd behaviors such as howling, singing in gibberish, laughing inappropriately, cackling, repeating high-pitched phrases and then speaking in a guttural voice.
Her pediatrician had stated that prednisone can cause hyperactivity but this was not hyperactivity! Either way, we took her off the prednisone after just three days on a small dose.
I called the rheumatologist to see if we could get her in sooner and she took her that day.
She was very concerned with all of her symptoms and her history so she had her admitted to the Children's Hospital. There they ran a bunch of tests – bloodwork, MRI, EKG, EEG, lumbar puncture. She was seen by the neurologist, psychiatrist, rheumatologist and general pediatrician. They ruled out PANDAS and rheumatic fever. She stayed five nights and we left with rheumatology telling us that she did not have a rheumatic problem, they did not give a diagnosis and told us to follow up with the pediatrician if the symptoms continued.
They did not follow up from neurology or psychiatry like they were supposed to and, although my daughter's symptoms seemed a little bit better, they continued.
She was having photosensitive rashes, itchy rashes, dermatographia, joint pain, fatigue, stomachache, high CRP, and her ANA had gone up to 1:1280.
She was released from the hospital on December 12 and we followed up with her pediatrician who disagreed with rheumatology and had her sent back to that initial adult rheumatologist for follow-up.
On December 22 this rheumatologist began treating her for lupus – like symptoms with mycophenolate. We continued to follow up with the Rheum who was reporting that the lab work was looking better and she diagnosed my daughter with lupus on January 11.
In February my daughter had protein in her urine and the doctor added hydroxychloroquine to her medication regimen.
The first week and a half on that drug she started having some of her behaviors again, but the doctor had said it was likely not the medicine and more likely neuropsychiatric symptoms of lupus.
In late February my daughter had multiple days in a row where she felt such excruciating pain when bearing weight on her legs that she avoided walking altogether. She had pain along her spine and one morning at breakfast she had also said her arms felt weak and she couldn't lift her utensils or her water bottle to her mouth.
This really worried me so I called her rheumatologist and she took her in early again and had her admitted once again to Children's Hospital.
Here's where the new diagnoses comes in. My daughter saw all of the same specialists again and they did more lab work and manual muscle testing, which all came back normal and did not indicate an "organic" cause for this issue.
The only thing that came back slightly elevated was a muscle enzyme so they did an MRI of her pelvis and femurs which also came back normal. She also tested negative for Lyme disease.
At this point, none of the doctors can explain what happened to her in December but said there was an obvious physical problem at that time but it should have not lasted this long.
The rheumatology department explained everything away from the high ANA tests to the protein in the urine to her pain and discomfort.
As a team they diagnosed her with somatoform disorder, which is when psychological conflict or trauma converts into physical pain (or other symptoms) that are very real to the patient.
The treatment is physical therapy and psychological counseling.
From day one they stopped all of her medications and said that she had been misdiagnosed.
By day six I had gotten her to bear weight on her feet and by day 7 she was walking. (I am a pediatric occupational therapist).
Now, to be honest, my husband and I have been having marital problems that are apparent to the children so I can understand that there could be some psychological conflict. Also, she was diagnosed with lupus and we put a lot of limitations on her due to that diagnosis so that could also be a form of conflict or psychological stress.
I do understand where the doctors are coming from because the testing did not show anything this time around and this episode of not walking was longer and more extreme than any of her other times that she complained of pain and fatigue. This time it did seem a little bit different but that does not discount for me all of the other issues and her history since September.
The adult rheumatologist she initially saw still has some doubt and she's very worried because my daughter is no longer on the medication and that is exactly my worry is well.
But the pediatric rheumatology team at the children's hospital seemed adamant that she did not have lupus and they did not even recommend following up with them for blood work just to make sure.
(Part of my concern is that she had been taking drugs for two months to decrease her immune response so wouldn't that influence her lab work?)
Since she started complaining of pain and fatigue in September I started taking notes because I work in a field in which documentation means everything so I have notes and pictures of the entire period, which the doctors appreciated and it really gave them information about something odd going on.
I am just very frustrated and I can't shake my worry at this time and I'm going to be making sure that every month she at least has blood work and a urinalysis done to make sure we're going in the right direction.
The only service she will be having is psychological counseling and it is my wish that this will work because who would want a diagnosis of lupus and a strong medication regimen for the rest of their life?!
But what if she has an underlying problem that the doctors are blaming on a psychological disorder when really the cause could be autoimmune and it starts attacking her aggressively?!
I have Hashimoto's thyroiditis and so do all of the females in my immediate family.
So, she got out of the hospital yesterday and she went to school today, March 8, 2016.
Walking down the hill she told me that her knees hurt and she felt like she wouldn't be able to run properly.
If anybody has experience with a somatoform disorder and/or lupus in a child please give me some feedback.
Thank you!!

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 3/8/2016 2:16 PM (GMT -6)   
Welcome to Healing Well. It sounds as though a lot has been going on and I certainly understand your worry!

Unfortunately I have no experience with either a somatoform disorder or a chil with Lupus. I'm assuming they checked her thoroughly for Hashimotos & related hormone disorders since that is a familial disease for you.

Do they think the diagnosis of somatoform disorder explains the ANA results? Do any of the blood markers for inflammation show anything?

I guess I would carry on with your plan to do some bloodwork every 4-6 weeks as long as she is complaining of symptoms. Meanwhile, I'd try to keep your home life as calm as possible, and make sure she is eating healthily, sleeping well, and getting regular exercise.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Oct 2014
Total Posts : 82
   Posted 3/11/2016 9:16 AM (GMT -6)   
Hello there! I am so sorry for all you are going through. It sounds very difficult. I don't have experience with the same exact thing, but my daughter has gone through a lot and maybe some of her story could help you. She never had any of the psychological issues, but here is what we went through. My daughter got really sick with a high fever and was sick for at least a week. Her symptoms started after that. She started to have body pain and over the next several months it got worse. She also had other weird symptoms, terrible stomach aches, bad headaches, itchy skin and others as well. But at this point, the body and joint pain was the worst. She got to the point where she was in really extreme pain and could barely go to school. We went to one rhuematologist who chalked it all up to back pain. She started to have a bad rash on her face and after many dermatologists she was diagnosed with discoid lupus. We found another rheumatologist and this one was amazing. He diagnosed her with something called Reflex Neurovascular Distrophy or RND. And older term for it is RSD. They are really just starting to understand it in the past 10 years or so. There is not a ton of info out there about it, but you can find some online. It is a pain disorder that is brain related. It's when the pain signals kind of go haywire and they keep being sent all over your body instead of easing away. It's sort of like if you stubbed your toe really hard it would hurt like the dickens, but then it would fade away. With RND the signal gets sent and never stops. It can start from an illness like a fever or something, or it can start from an injury. A cut, a sprained ankle, etc. Sometimes they don't know why it starts. Some kids have a very severe case of this especially if it is not diagnosed and gets worse and worse. It shows up in many different ways. My daughters was an all over body pain and especially in her joints. Where some kids may have one particular area like a hand or foot.

So, they put my daughter in a program of intense physical and occupational therapy and she saw a pshychiatrist to talk about dealing with the pain. What they are trying to do is retrain the brain by the occupational therapy and releasing of endorphins with the intense physical therapy. It was so hard in the beginning but it worked! She has some flare ups now and then, but we have the tools that we need so that we can do it at home to combat it. We loved our physical therapist, she was the best! We were lucky to have this program locally because there are not many in the country. If we didn't she would have had to stay at a place like CHOP hospital for her treatment. Dr. Sherry is the leader in the RND world. You can look him up. Also, as the RND symptoms got better the other symptoms she had got worse, and after a ton of research on my part and a lot of doctors appointments, I realized that I thought she had Celiac Disease. Turns out she does. And they think that Celiac and all of the gluten in her body probably triggered her lupus and RND and most recently Vitiligo. But, she has been gluten free for 3 months now and she is already doing so much better! Her body pain, headaches, stomach pain, etc.

So, all of this to tell you that both RND and Celiacs come with many different symptoms for different people, and it's worth looking into both. It is much more common than people realize. A lot of doctors don't know about RND and one doctor told me he didn't believe in it. But I know it was very real and I know that the program she went through worked amazingly. I wish you the best and I will pray for you little girl. We have been through so much over the past 3 years and I know how very difficult it is to see your child suffering so much.
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