Somatoform Disorder, Lupus, or Both?

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 I don't want her to have a diagnosis of lupus and have to take intensive, scary drugs and worry about organ failure for the rest of her 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.
I have posted this in the lupus section as well.
Thank you!!
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Like Rocckyd, I had a confounding presentation of symptoms as a child that perplexed physicians.

Always an "unsettled" stomach, digestive unease, always queasy with nausea; diffuse muscle and joint pain; hypersensitivity to lights and sounds, even the texture of clothing; et. al.

My brother was quite ill with uncontrolled grand mal seizures/epilepsy which kept my parents pre-occupied with his needs.

My ANA was elevated but also waxed and waned; highs and then would lower.

Without a diagnosis that would fit into a easy-to-define box of known diagnoses, physicians began to place "blame" on me. That I just needed to try harder to be well/feel better, that it was all in my head.

It was all placed on the back-burner. Life marched on.

I struggled with my health on several fronts for years. All manner of vague diagnoses. Premature ovary failure; fibromyalgia; irritable bowel disorder; psoarthric arthritis.

It wasn't until early adulthood that the pieces of the puzzle fell into play.

I had a pituitary adenoma. Just so that you can breath, know that 99.9% of pituitary adenomas are benign.

Small pituitary adenomas can have a whallop of an affect on an individual's physical and psychological well-being. They often are hormone secreting. The high hormone levels have profound effects of the body and mind. The body produces hundreds of hormones, which serve as chemical messengers - hormones serve as communication that directs how the body works, how the body's organs and organ systems work.

My endocrinologist feels strongly that anyone who presents with a psychological/psychiatric diagnosis needs a full pituitary work-up to rule in or out a pituitary adenoma.

Look at the Pituitary Network Association for more information on pituitary disorders and their presentation. Google "Pituitary Network Association" I believe the web site is www.pituitary.org

Yes, my physical distress was "all in my head." But "all in my head" was not a psychological cause of my physical symptoms. "All in my head" was an ailing pituitary gland.

You would need/want:
1. Lab blood chemistry of all of the primary pituitary hormones: ACTH; FSH; LH and FSH; Growth Hormone; Vasopressin; Prolactin.
2. Secondary lab blood chemistry for the following: cortisol; free T4 and free T3; aldosterone; estradinol; progesterone; testosterone
3. MRI scan specific to the pituitary gland (NOT a full brain MRI). You an MRI scan that is a detailed scan of the pituitary gland. A full brain MRI will not be focused enough to discern small micro adenomas. You may need to go to a hospital with appropriate MRI imaging. A Tesla 4 magnet is required (one of the newer generation MRI magnets).

Best wishes in moving forward,
- karen -

Be aware that small pituitary adenomas (99.9% are benign) will not show on a whole brain/full brain MRI - which is what your daughter had.

An MRI specific to the pituitary is necessary to discern small pituitary adenomas (called pituitary micro adenomas). IV contrast is given, gallium contrast.

Make no mistake, pituitary micro adenomas can have a wallop of an effect. Functioning pituitary micro adenomas (those that are hormone producing) can have a more significant effect that large non-functioning adenomas. Size does not equal effect. The smaller micro adenomas can be far more problematic.

My endocrine "issues" began when I was around 12 - similar to your daughter. It makes sense as this is when the pituitary is most stressed, leading into adolescence and hormonal changes slated with puberty.

It would be interesting to have a basic panel of the pituitary hormones. That is, have a blood draw and laboratory testing of the basic pituitary hormones. Looking for low or high levels.

I cannot stress enough how the MDs involved in my care missed the obvious diagnosis . . . that my pituitary was failing. My pituitary was calling for help. And no one listened. The life effects have been significant and unfortunate. I write this additional post because I would not want my life trajectory for anyone else, your daughter included.

The basic pituitary hormones to be tested would include:
ACTH (adrenocorticosteroid acting hormone)
TSH (thyroid stimulating hormone)
LH (lutinizing hormone)
FSH (follicle stimulating hormone)
Prolactin
Vasopressin

Adding for good measure, complimentary lab values
Cortisol (relates to ACTH)
Aldosterone (relates to ACTH)
Free T3 and Free T4 (relates to TSH)
Estrogen and progesterone
Testosterone

The pituitary gland is the master gland. It regulates the endocrine glands throughout the body. The endocrine system regulates the function of the body's many organs and body systems, how the body works. It has a wide effect on an individual's well-being or lack of.

For all that you are doing with rheumatology, my sense is that shifting gears and getting an endocrinology consult would be well worth the effort. The specialization of medicine, with each MD only looking through a narrow lens related to their field of study, can make it difficult when trying to find a diagnosis. No one really looks at the total patient and the symptom profile.
- Karen -