Why are physically sick children labeled as mentally ill?
by Jessie Bedrinana
My daughter was nine when symptoms started after a long summer of hiking and camping in Southern and Central California. She was previously an outdoorsy, active, happy child who loved school. Her symptoms started with fatigue, weakness and knee pain (after a brief flu-like illness) and then the pain migrated.
She complained of stomach aches, headaches, shooting/stinging pains around her body, periodic congestion and a dry cough. A few months in, she got strep and the symptoms worsened. She had a horrible reaction to amoxicillin (swollen, debilitating painful joints, red, itchy rash and hives, fatigue) that would not quit.
Her ANA levels were high with the original onset of symptoms, then soared up to 1:1280 at the height of her illness and beyond. We went to her pediatrician, two ERs and a rheumatologist, who was concerned enough to have her admitted to a children’s hospital.
‘Acting almost possessed’
At this point, neuropsychiatric symptoms had also begun. She was acting almost possessed, she had rage and emotional lability and was making different noises that she seemed unable to control.
Her eyes had red circles around them and they looked sunken into her head and she said that her head felt heavy (yet her pediatrician since birth was ready to send her right back to school).
This was the beginning of December and doctors asked questions like “did you recently go hiking?” “Was she bitten by an insect?” “Did you travel out of town?”
Looking back, these were the wrong questions, indicating a lack of knowledge and awareness of how Lyme behaves. Yet, based on that conversation, the doctors ruled out Lyme immediately. They never even tested her for it.
She stayed five nights in the hospital that time and nobody knew what was wrong. They sent us home after some of her physical symptoms improved with time and meds.
One doctor had brought up the diagnosis of PANDAS, but the team could not agree on that one so that was not pursued either. She was diagnosed with lupus and put on very strong immunosuppressants.
All of her physical and neuropsychiatric symptoms continued, plus dizziness and dermatographia (where even light scratching of the skin can cause deep red welts that last 30 minutes or longer). She also developed severe pain in her feet and legs, making it impossible to walk.
She had mood swings, low frustration tolerance, rage, separation anxiety and a fear of going to school. She was enrolled in our school district’s home study program.
By February, she was hospitalized again for seven nights, this time with a diagnosis of somatoform disorder. This is a psychological diagnosis which assumes that mental conflict is turned into physical pain. They blamed her history of physical illness and the misdiagnosis of lupus as being traumatic and causing a mental illness.
They told us to ignore her physical complaints and take her to a psychiatrist. My daughter sobbed and told me she was so worried that we would not believe her anymore because the doctors didn’t believe her.
Immunosuppressants and Lyme
One pediatrician tested her for Lyme disease again, but she had been on immunosuppressants for over two months and the ELISA was negative.
I asked every doctor whether or not the immunosuppressives would affect the results of that test and nobody gave me a straight answer. (Editor’s note: yes, immunosuppressives can affect the outcome of a Lyme antibody test.)
Eventually, on my own, I learned more about Lyme disease and PANS/PANDAS. I found a Lyme-literate medical doctor who is an expert in both diseases, and had my daughter tested for a great many things.
She was CDC positive for Lyme, and positive for active Babesia, Bartonella, Erlichia, and Mycoplasma. She was also positive for PANS/PANDAS on the Cunningham panel, which measures autoimmune antibodies associated with neuropsychiatric disorders. She finally started treatment for all this, more than a year after her problems had started.
After following a comprehensive treatment protocol for many months now, she is doing much better. She went back to school in January and completed the semester with all As and Bs. She is now 11 years old.
Mentally ill?
How can an adult look at a child like this and say she has a mental illness? I think I know the answer to that one – blame the parents!
Why did I, as her mother, have to research and fight to get her treatment? Why do we have to pay out of pocket for doctor visits, testing, and some treatments? Why do some of her doctors still question whether or not her diagnoses actually exist?
Her pediatrician and cardiologist have known her since birth and have known me that whole time. I only take my kids to the doctor for their regular checkups and in severe instances of illness or injury. I am a completely reasonable, rational person with a master’s degree from a reputable university, and I have practiced pediatric occupational therapy for 13 years.
I can only imagine what would’ve happened had we followed the doctors’ advice from the children’s hospital. I know there are lots of other children out there going through the same thing for even longer periods.
Do pediatricians seriously believe that all these school-aged children have mental illnesses? Our daughter was prescribed Zoloft after meeting the psychiatrist just once. I chose to keep looking. But I think that some parents have a blind faith in the medical community or they just don’t know what else to do.
Click here for a photo slideshow about Jessie’s daughter.
Jessie Bedrinana is a mother of two and a pediatric occupational therapist in California. She and her twin sister recently ran a marathon to raise money to help families pay for Lyme treatment. She also blogs about her experiences here.
My daughter had the exact same thing happen to her at the age of 18…
That’s horrible. Is she doing better now? I have read so many similar stories and it has always been helpful to me to know that we are not alone (plus they helped me to pursue the correct diagnosis).
So very sorry you have been through so much it saddens me to think doctors can be so evil. It is evil as doctors should know better no excuse!
Fantastic mother! Best wishes to this brave little girl!
Thank you! She has been so brave!
OMG, what a nightmare. YOU did everything right, even though at times you must have felt like you were failing her. I hope your daughter continues to do well and you can finally unclench, knowing your persistence was the key to her recovery. Bless you both.
Thank you for saying that. I don’t think people on the outside really understand how hard it has been. I was second-guessing myself so much because the medical community was telling me one thing and I felt like an outsider or a “crazy person” if I questioned them…but I knew there had to be something wrong. Yet nobody could help us. Once we found our specialist (who is just so matter-of-fact and empathetic about all of this), I have finally relaxed a little. Before that, I felt like I had to prove myself so others would believe me and help my daughter. That was so stressful. It took a toll on my own health. I feel now that I can finally start working on my own health as well as my daughter’s and we are on a path to recovery. =)
This entire debacle is Hell on Earth for me as adult. Severe, absolutely debilitating pain and brain damage.
The PTSD from the belittling, the smirks, the raising of both arms without looking at me saying.. There is nothing I can do, messes with my head 24/7. The fight with family… NO ONE UNDERSTANDS this extreme torture and the fight for life in every breath.
I feel for the children who can not even begin their lives, that grow up knowing pain, rejection and fighting for their lives all alone.
For their parents that feel hopeless beyond measure when the medical community ignores obvious signs and brushes your child off as crazy.
Unbelievable this is America.
God help us.
I”m so sorry to hear about your pain and your struggles. Having people not believe you or give up on you is part of what makes this disease even worse. People would always say “she looks good,” and I would think , “yeah she LOOKS okay,” but I knew she was not even close to better because of the way she acted or because of what she told me in privacy. It is very hard to get a child to describe how she is feeling when the symptoms are so hard to explain and when the symptoms wax and wane. I think it can be harder for adults sometimes because children have their parents to fight for them while adults are often all alone. I can understand how difficult that must be. I sincerely hope that you can find relief and peace. There are lots of groups for lyme on Facebook and Healing Well and it has been really helpful for me to be part of a few of those because all of those people get it and it feels like a community. If you are not part of any groups I would highly recommend it.
My heart hurts when I meet and read stories like your daughter’s. We had many in our support group, including children, that all had similar stories. God Bless you for searching and never giving up! HUGSS! The Lyme disease epidemic/pandemic, my humble opinion, continues to amaze me.
I’m so glad that your daughter is on the road to recovery and it’s a shame how ignorant some physicians can be. My daughter has been suffering since she was 15. Florida Health Dept laughed at me and told me, “Florida doesn’t have Lyme Disease.” It took 6 yrs before being diagnosed by then she was a basket case where the bacteria went into her brain. She then went into remission but 3 wks ago is battling the Neuro effects of this bacteria again, when her WBC became elevated.
I know exactly the day and time when this horrible bacteria again attacked my daughter’s brain. She looked at me with a blank stare and told me, “Something is wrong, I don’t feel good.” Mentally she was having short term memory loss, her hand started twitching, hullicinations, laughing etc including headaches, knees swelling, fatigue etc.
She has been suffering for the last year with abdominal problems especially in her lower left side, when a catscan was done they saw a surgical clip that had been left and it was in the lower left side of her abdomen.
The only surgery she had was gallbladder surgery and that took place on her upper right side of her abdomen?
She has a massive infection in her abdomen.
We are now fighting to get her back into remission.
The Lyme tribe should join forces with the Autism tribe because their situation is very similar especially given many have Lyme and that was the last straw for them or they have congenital Lyme and that pushed them into the Spectrum. And while you are joining forces with the vaccine injured Autism set don’t forget the teenage girls with Anti NMDA receptor encephalitis they got from the HPV vaccine. Talk about being labeled mentally ill. That one takes the cake.
The only test you can do with someone on immune suppressing drugs is the PCR DNA test but it has a 70% false negative rate. Nano tube detection is not commercially available yet.
I am very upset with myself for allowing my daughter to receive the HPV vaccine. One more thing to worry about. She is positive for Lyme. I don’t know symptoms of encephalitis but will look into it.
Thanks for sharing.
My son is going through the same things. Can you share what the treatment protocol is that you’ve used? Thank you!
My daughter had the same experience at 15, catching Lyme and Babesia. We were lucky that her Lyme was diagnosed within 4 months, after all the misdiagnoses, including mental illness, but it still took 3 years of high dose antibiotics and finally the Babesia treatment for her to get well. Then several years to regain her strength. She relapsed twice, but 3 months of Doxycycline reversed the symptoms. She has been symptom free now for over 10 years. I hate to hear of children going through such horrible pain and parents suffering along with them, but good for you for persisting until you got her the help she needed. She will get better.
Best wishes for your courageous daughter. Thank God she has you.
This is happening to both my daughters as I was diagnosed after the birth of my 2nd daughter!! it is miserable!! very complex, very hard to get diagnosed and very hard to find doctors that will help!! it is awful and both my daughters had several co infections and pandas as well!! glad she is getting better, we are still in the treatment process!!
appreciate prayers!
Most medical doctors are not scientists. When these doctors can’t discover a causes for illnesses they have several explanations to keep themselves covered. Psychosomatic, other mental problems, autoimmune reaction, vestigial organs, etc. To tell someone that they have an autoimmune problem makes little sense. If an immune system is fighting the cells of its own body, that person should go into anaphylactic shock and quickly die. Why would the immune system only fight its own cells in restricted parts of the body? The immune system is actually fighting pathogens in those regions of the body. They might be bacteria or virus. Most people with arthritis are fighting localized bacterial infections. This is an example of pride or ignorance or both in the medical profession.
When I came down with weird symptoms, my friend who was a PhD zoologist and I came to the conclusion that I had Borellia miyamotoi from looking through the internet. I had tested highly positive for spirochete bacteria, but when I tested negative for Borellia bergdorferi they told me that I had a virus and the infectious diseases doctor dismissed the highly positive blood test and she told us that Lyme’s disease does not occur in California. This despite scientists finding in 7 different spirochete bacteria in Alameda Co alone. This information was on the internet at that time. A year later Stanford biologist found that miyamotoi was in 11% of the ticks that they looked at while bergdorferi was found in 10% on the Stanford campus. After they did blood tests, I was told not to take any aspirin etc because both my kidneys and liver were not functioning. Luckily I had a great young internist who listened to me and gave me the treatment – 20 days of doxicycline – that I recommended. This created the problem of Jaricsh/ Herxheimer reaction which almost killed me. It caused a whole body inflammation reaction including my eyes. My feet and legs more than doubled in girth. I had pain in all joints. At times it felt like knives were piercing my wrists. I had to use a walker for weeks after. Full recovery took about 3 years.
By the way, false positive test are rare while false negatives are more common.
The article brought back memories of the suffering I experienced from Lyme disease and co-infections. Then Parkinson’s disease showed its ugly face. Luckily I had an
awesome LLMD in Jackson, NJ, a two hour drive for me. I am so glad this mother was persistent. No one can convince me that Lyme disease did not bring on PD.
Need help! After 6 years we are still in the middle of the storm! My now 24 year old son, black belt in karate, Eagle Scout started with mononucleosis 6 years ago and hasn’t been the same since! He had a catatonic episode 3 years ago. The Dr’s said that they know there are underlying medical causes but, the mental must be addressed first. Last month he was tested for Lymes at my insistence but Western Blot came back negative. He was bitten by 7 ticks that he knows of several years ago. No one will listen (including my husband)! They are content with that there is nothing we can do!
Thanks for sharing your daughter’s story Jessie – it’s powerful stories like this that offer hope and solutions for so many. I do hope she is doing much better!
It’s very sad that so many go down the medication route only to find out it’s nutritional and/or biochemical or something like Lyme/PANDAs
I hear you and agree….”Why did I, as her mother, have to research and fight to get her treatment? Why do we have to pay out of pocket for doctor visits, testing, and some treatments? Why do some of her doctors still question whether or not her diagnoses actually exist?”
Good for you for questioning and searching for answers. It’s something we all have to do!
I’d like to add one aspect you haven’t addressed: specific nutritional support for the anxiety, fear, emotional symptoms and rage that are triggered by something like Lyme and other co-infections.
These bacteria are known to disrupt serotonin and GABA production and lower zinc and by boosting these while addressing the underlying infection offers immediate relief. One example is using the amino acid GABA to for the physical anxiety – here is a blog where a mom shares how this helped her daughter https://www.everywomanover29.com/blog/gaba-helps-with-lyme-anxiety/ Unfortunately very few of the amazing functional medicine practitioners who recognize and treat Lyme and PANDAS address this aspect.
We lived like that for 15 years before my daughter herself asked about a Lyme test. From our very first encounter with a social worker (whose job, I later realized, was to screen us for being abusive) through psychiatrists, psychologists, neurologists, her pediatrician as well as every teacher and the director of her schools to the last, it was assumed she was nuts and her family was the cause. The thousands of dollars we spent (and continue to spend) on care that is not covered for a diagnosis that is not considered valid is a travesty. We live very frugally in order to save money for her uncertain future. And, it will never be enough.
I was vilified by schools; we given terrible advice (to punish her for bad grades by denying her any extra curricular activities — she already had none!); I was asked what I thought was the “payoff” she was getting for not going to school; we were disbelieved continuously. Doctors, after hearing one too many symptoms in one too many body systems either dismissed them, or glazed over and shooed us out of the office. In the face of suffering – in a child! – they weren’t even curious.
I will never get over it, and there are people I will never forgive.
If I have one bit of advice for parents it is this: believe your child. I did, and I am not sorry. The second bit of advice is this: a child can learn to clean her room at any age, but she can’t delay social/emotional development. My kid had limited energy and cognitive glitches. Unlike other kids, did not have to clean her room before going to the sleepover. I am not sorry about that, either.
She is now 25 and still unwell, still at home. But I am glad to tell you that even with the scars of disappointment and failure and lost friends and lost years, she is a lovely young adult with a fine sense of responsibility, a good conscience; is interesting and interested; and people her age and otherwise like her. I don’t know how she managed to hold onto her basic self, but she did. I don’t know how it’s going to end up, but she’s durable and persevering and as long as I’m able to be helpful, I will be. But she is not crazy and neither am I.
Thank you. My 16 yo son has been battling this mightmare for 3 years. Hell is the only way to describe it.
Thank you for your very candid blog. It is well-written and very clear. I hope you will consider sending this (or something close to it) in to a newspaper for PANDAS awareness day October 9. Best wishes.
I have been highly suspicious of Lyme disease in my 15 year old daughter for at least 2 years. At 13 years old she was hospitalized with anxiety and depression, still battling those symptoms, she has intermittent pain in various joints, hip, wrists. Negative for ELISA. I asked pediatrician for Western Blot and was referred to an infectious disease specialist who refused to see us! All I was asking for was an order for the blood test. She didn’t have to see us, just order the test. I know that she refused as she has no knowledge of Lyme disease. My husband and his family felt I was filling her head and helping to cause her symptoms. After finally finding a doctor who is familiar with Lyme. She was put on herbs to draw out the infection which hides in your blood cells, she was positive for Western Blot and iGeneX
She just began heavy duty antibiotics which are so hard on her stomach that she throws up if not taken with food. Also on herbs and pro biotics. Because she is a teenager, she is not compliant with meds. It is a constant battle to make sure that she has taken meds. She has many other mental/neurological symptoms. I am hopeful that she will have a successful recovery. Parents must advocate for their children. My daughter and I were glad to hear that she was positive for Lyme, as now we can treat and stop being considered lunatics by husband/dad and extended family. My daughter was thrilled to tell her dad she was positive. We both felt vindicated! Uphill battle.
After approximately 7 years of my 20’s ruined and in pain, agony, physical and emotional, my life finally turned around. Living in the Adirondacks and Champlain Valley, be it visually beautiful, has its extreme disadvantages. I had been in hospitals dozens of times and put on more serious medications and steroids than tolerable, it was found I had Lyme . Before the truth came out, I suffered from liver and heart problems, intense migraines and debilitating join and back pain, cholycesectomy, partial hysterectomy, suffered miscarriages and the loss of a my unborn son at 22 weeks, all because of LYME. Doctors diagnosed me with psychological problems, fibromyalgia, possible lupus, ulcerative colitis and the list goes on. My C-reactive protein level was a whopping 29 when it should be a max of 1. I was admitted over and over into the hospital and pumped full of IV steroids and antibiotics because I had a mysterious “infection” of some kind no one could figure out. I was down to 82 pounds and suffered more than most 20 year olds will ever in their lives. I missed my three young daughters Christmas pageants, school functions and bed ridden on the couch for their birthdas and holidays. Then one day my world changed after a close friend told me about a place which is the Stram Center for Intergrative Health and in short, they saved my life. Immediately suspected I had Lyme and low and behold I did. After 5 months of a PICC line and strong antibiotics and a strict bacteria killing diet, I had my life back. I will never ever understand how theres such a clear answer to this disease and our system flat out refuses to allow people to heal. Don’t give up and trust your intuition and listen to the angels that are trying to guide you. I spread the word and “saved” a child and his families future and possibly life because I recognized the symptoms. Help others and make a change before irreversible damage is done and time is lost.
I would like to string these bloody doctors up by their thumbs for the torture they put your child through and others. It is unforgivable to diagnose mental illness when it is obviously a real illness. Yet this is the modern brainwashing running through GPs and specialist. One thing for certain doctors are no longer doctors except for a few brave souls. They tend to do nothing but prescribe medication which is basically toxic pushed by the big pharm industry. I have lost total faith in doctors, they appear to have been dumbed down to near moronic levels of independent thought and many just want money, money, free holidays. Doctors do not listen, so many are simply stupid but this detracts from the good doctors who do listen.
That is horrible to go through as a child! But it sounds like something that even adults experience. It sounds vaguely like my story. I am in physical therapist with a masters degree and a 20 plus search for wellness even after a diagnosis of chronic TBD. They recently diagnosed me as bipolar II and wanted me on Zoloft among other things. I was told I needed to settle my brain before I looked to see if the TBD were back. My body screamed flair but even my Lyme literate doctor ignored it. It is so sad we have to fight for the answers. There must be a better way to get help and healing! I think functional medicine is the beginning of the answer!
Karen Balac, MPT
I am an LCSW in a TBI endemic region and see kids with TBIs diagnosed with mental illness on a regular basis . Mental illnesses and learning disabilities . It’s horrendous . I just chip away at each situation as it unfolds . It’s maddening . Some parents respond well to information regarding TBIs , and some stay the course of mental illness – it’s tragic for the kids who get written off.
The same thing happened to my son . I totally understand the pain and frustration you went through . My son was also put on psychiatric medication and the doctors knew he had Lyme disease twice ! But they discounted that . He is finally off all medication and doing well . I wish you and your daughter the best
Good for you for continuing to search for answers for your daughter. I was 12 when my symptoms began (in 1976)–shingles, Bell’s palsy, chronic headaches, stomachaches, joint and muscle pain, etc., etc. My mother knew something was wrong, but back then we didn’t have the resources to research on our own. She took me to every kind of specialist she could think of. They told her I was a hypochondriac even though she tried to convince them otherwise since she knew me better. They told her I needed more attention at home. I was 44 in 2008 when I finally found a LLMD who could properly diagnose me. I went to him because, like you, I had figured it out on my own. By that point I was nearly needing to quit working and go on disability. I was CDC positive, and he knew I had it before the bloodwork came back just from my symptom history. I hope your daughter is on the road to recovery. Thank you for telling her story!