Looking Back: Lyme Recovery Creates Many New Questions

It has been nearly a year and a half since my son’s recovery from several tick-borne illnesses.  We still encounter people who don’t believe he was ever ill.  As stunning and disheartening as that may be, we have learned to put our energy into moving forward, otherwise we will be stuck on a frustrating and debilitating path of other people’s apathy and ignorance.

As a parent of a seriously ill child, I had to stay focused in the present at all times.  If I let my thoughts wander in the direction of either the past or the future, it would be emotionally consuming, and I would be of no use to my son.  Now that he is healthy and the worst is behind us, I do take time to think about what signs were present that I may have missed long before his illness became a crisis.

For one, we never really found out how long the tick-borne illnesses were in his body.  We know that some had run their course, while others were very much present, but in the absence of a rash, classic symptoms, or even an actual tick, we were left with an ambiguous ‘late stage’ designation.

Since we know they were not new infections, why, then did they take so long to surface the way they did? Was there a trigger of some sort that brought everything to the surface in a perfect-storm-type situation.  I can see very clearly that there were many ambiguous, unexplained, short-lived illnesses that my son experienced since he was a toddler. He often spiked fevers for no apparent reason, he would have swollen glands with no other symptoms, he had recurring illnesses such as croup long after the expected age for such illnesses.  And yet, it wasn’t until he was in his early teens that the most dramatic symptoms took hold of him.

As I have written in the past, my son’s symptoms were nothing typical for Lyme related illnesses except for the fatigue and fevers.  Most of his symptoms were cognitive and emotional which led others to believe he was avoidant, defiant, suffering from mental illness, or just plain lying.  While I knew none of these were true, it was an uphill battle for years to prove otherwise.  Why did the diseases affect him this way? Why do they target different areas of the body in such a way that each case may be unique to the one before it?

I can’t answer that except to say the diseases seemed to target the areas of the body that were most susceptible to them.  He always had a moderate level of anxiety as a child, it was just magnified to a level that was extraordinary.  He was always a relatively shy child who preferred to be home rather than out around many strangers.  During his illness, he became agoraphobic.  Cognitively, he had an extremely fast processing ability that often conflicted with his difficulty with expressive language.  The disease impaired his ability to think, speak, and express himself in any way.  He could only look out from inside and feel ‘stuck’ – a terrifying feeling in which he could not tell us what was happening inside his mind and body.

I truly believe, as I look back over the progression of the diseases, that certain areas of my son’s body were more vulnerable to the infection, and thus were almost exploited in a way.  Other areas lead to this conclusion, as well.  For example, my son had very strange EKGs as a child, during the illnesses, we were sent to several cardiologists, because his EKGs were alarming.  He often had low level fevers that accompanied illnesses when he was little, during the Lyme, his fever regularly hovered between 101-104 degrees. Everything was exacerbated and amplified.  Every childhood illness looked like it had been magnified into an unnatural state while recurring in his teenage body.

I can only think that either he had these tick-borne diseases for his entire life, and a new infection or a traumatic trigger sparked the dormant diseases to come to life at once; or, he had lesser outbreaks of the diseases in the recent past until a significant stress on his body caused his immune system to be unable to suppress the full extent of the illness. I may never know, but my son began a downward spiral when he was finishing his final year at the only school he ever went to and was about to go to a new town, new school, new environment.  This confused the situation greatly, because it was perfectly reasonable that he would experience anxiety and depression in such circumstances.  The problem was, it was completely out of proportion and out of character the way it manifested in his body and mind. I was unable to stop the flow of accusations, suspicions, and judgment we encountered. My ignorance about the illnesses did not help me to dissuade others’ ignorance about my son.  We still fight that ignorance.

Lately, I hear more and more stories about children showing symptoms that resemble my son’s.  Although I am happy to see the children being treated and the symptoms recognized more readily, I am saddened to think that this is the only way to prove my son was truly suffering from an illness.  I fear for these children, and I worry that the strain placed on their families will be irreparable.  No one in the medical field has ever asked to learn more about my son’s case.  None of his non-Lyme doctors have fully acknowledged that his illness was tick-borne related diseases.  Everyone has breathed a sigh of relief, because they no longer have to worry about court hearings, inquisitions, and reputations being tarnished for treating a child with such symptoms from a tick-borne disease.

I know the strength of my son.  I know his courage and his grace.  I admire and respect him for not only what he endured, but how he handled himself throughout the ordeal.  I cannot express the relief I feel that he is healthy. And yet, a sadness remains for those suffering without support, without the humanity and compassion that they deserve, without resources they need to get better.  I hear daily that this will be the worst Lyme season to date.  I wonder how many more children have to suffer from this atrocious disease before someone with the power to change the outcome actually takes a stand. The disease may be invisible, but those who suffer from it should never be.

Bartonella, Babesia, and Lyme- Oh My!

After months of negative test results, my son’s most recent blood tests revealed the elusive diseases burrowing within the cells of his body.  He clearly has Babesia and Lyme, has a clinical diagnosis of Bartonella, and even showed past infections of Ehrlichia and Anaplasmosis.  Which leaves me in a state of bewilderment when I encounter individuals who doubt his illness.

My question is always the same: Why? Why do others feel the need to question what doctors have diagnosed in my son?  Is it because it is too uncomfortable for others to have to admit that these diseases not only exist, but thrive in their own back yards? Or do people just need to blame parents for any illness they find to be unusual in a child?

I would have to think it comes down to fear.  Fear of disrupting their tidy lives and the predictability that they cherish.  Fear of admitting that something so common as an insect found throughout our area could cause a debilitating illness in their own child.  Maybe, it’s the reinforcement of our divided medical community.  Why believe the worst case scenario when there is a physician ready to tell you it’s something with a more harmless outcome or maybe a self-inflicted illness causing the symptoms?

My son is currently taking four antibiotics twice daily.  He is not yet making many strides in his recovery, but he isn’t getting any worse.  Every day, I struggle with knowing how much to expect from him in terms of feeling better.  After a year of an illness we didn’t know was there, has he developed habits that were, to him, allowing him to cope with the symptoms of this unknown disease?

My son has been taking high school classes online; meanwhile, we still battle in truancy court. Our next appearance is in a few weeks where the judge will look at my son’s progress of school ordered counseling and coursework.  What won’t be taken into account is his Lyme, Babesia, and Bartonella.  Despite the doctor’s notes and psychologist’s recommendations, the school has not acknowledged my son’s disease.  Which leaves me to wonder: How do we fight a battle when our hands are tied and our voices are muted?  Every month, I have to sit next to my son and listen to a series of infuriating lies presented by the school regarding my son’s case.  The school has, so far, accused my son of purposely avoiding a visit from the school psychologist, not doing his school work as outlined by the school, and they have testified that he is perfectly healthy and capable of attending school, he just chooses not to.

Which brings me back to my original question: Why?  What is so offensive to the school district about my son having Lyme disease?  Why would they rather spend all their time, energy, money, and resources on fighting us, rather than trying to help a child? This year, the school has done more damage to my son’s recovery, mental health, and self-esteem than the illnesses, themselves.  All we asked for was understanding and temporary support while he recovered.  But, it is not to be.  Each day is more stress on our schedules in trying to meet the demands of the school, more anxiety for my son who knows that he is going to be expected to do more than he is capable of, and more strain on our family’s finances as I meet with lawyers trying to protect my son, in addition to protecting myself from the accusations and ever-looming custody battle.

I am trying to stay positive and patient for my son’s sake.  I’m frustrated by the family members who show compassion and understanding until my son’s illness inconveniences them.  One thing we have come to accept is that this is not a convenient disease; it has no boundaries and no prejudices.  It comes and goes at whim, there is no predictability other than the need for extra rest after periods of stress or exertion.  What’s more, the roller coaster of symptoms tend to disappear long enough to give me hope, then reappear with a vengeance, leaving me worried about his future.

This trio of illnesses is nothing short of hell for my son, and hell-by-proxy for the rest of the family.  It has strengthened some relationships and strained and broken others.  Most of all, it has taken our tidy, predictable lives and turned everything into a constant state of chaos, worry, and a reality I wish I never knew existed.

My Son’s Battle: Diagnosing, Treating, and Recovering from Lyme Disease, Bartonella, and Babeisiosis.

This time last year, life in our home was moving along an uneventful path.  The normal stresses of balancing work, school, sports, and all things teenager could be overwhelming at times, but little did I know just how overwhelming life was about to become.  There are days when I look back and don’t even recognize the life we had before Lyme disease and it’s co-infections invaded our family’s very soul.

Next month, my son turns sixteen years old.  He has, essentially, lost his entire fifteenth year. And, as devastating as the multiple tick-borne illnesses have been to my son’s life, I won’t allow myself to think where we might otherwise be had we not been referred to Lyme literate doctors who have, undoubtedly ,saved my son’s life.

Before the diagnoses, however, we were searching in the dark for answers to my son’s multitude of non-descript symptoms.  In addition, we were addressing each symptom individually, not knowing they were at all related.  This is a scary realization.  It is the reason my son ended up admitted to an adolescent psychiatric hospital, and was referred to more specialists than I can count.

What I think is important to mention, is the fact that most of my son’s symptoms were psychological and emotional.  This was never a red flag for Lyme or other tick borne diseases, mostly because we were looking for the classic joint pain, headache, rash, etc, that never appeared.

To this day, my son has never had any joint pain.  He has not had any flu-like symptoms, nor has he developed the bulls-eye rash so often associated with Lyme.

What he did develop was anxiety.  And even though he always had some degree of anxiety throughout his childhood, this was off-the-chart, uncharacteristic, inexplicable panic when trying to do normal every day things he had done his entire life.

He couldn’t go to school.  He couldn’t go to the store.  He couldn’t go to his dad’s house (which would become a huge legal battle).  He started to have such severe panic attacks, that he would dissociate.  He would be unable to talk or move during the panic.  My fifteen year old son, former athlete, honor student, and social teenage boy was reduced to cowering in his room under the covers with the blinds closed and lights off.  His emotions seemed exaggerated and didn’t fit the situations at times, and he also had moments of rage- which was completely uncharacteristic of this child.

Something else he developed was fatigue. He was so tired that he could barely sit up in a chair long enough to eat dinner.  He looked like someone was giving him sleeping pills all the time.  His anxiety was another internal battle that was exhausting, as well, so any time he had to do anything stressful, he would inevitably get a fever or complain of a sore throat, headache or stomach ache.  All symptoms that were associated with either an anxious child trying to avoid an activity, or an enabling mother trying to keep her son in this constant state of illness.

His blood work didn’t show any Lyme for months, but it did mimic other things such as: leukemia, diabetes, urinary tract infection, infection of unknown origin, as well as some false positives for things like syphilis, which was one of the more absurd possibilities.

As a result of some symptoms, we saw a pediatric hematologist, for others, a cardiologist.  I was prevented from bringing my son to a neurologist, but we have seen plenty of psychiatrists and psychologists.

It was actually the open-minded observations and careful attention of one particular psychologist who suggested I take my son to a Lyme specialist. I replied that my son was tested for Lyme previously, but this doctor insisted we see someone who was well versed in tick-borne diseases.  Thus began our path that led us to the beloved Dr. Charles Ray Jones.

Eight months after my son’s symptoms began- after numerous tests, specialists, hospitals, diagnoses, and DCF investigations- we walked into a doctor’s office who took all the symptoms my son was experiencing and put them into a complete picture alongside his history, blood work, tests, rashes, and his physical evaluation.

For the first time, we sat across from someone who could account for everything my son was experiencing, and what’s more amazing, he was telling us it was all fixable.  I was both elated and skeptical when I listened to everything Dr. Jones explained, but I sensed a competency in him that I had yet encountered on this hellacious journey; so, for the first time in a very long time, he restored something in us that I didn’t think we’d ever get back: Hope.

Two weeks later, my son’s blood work came back positive for Lyme, as well as Babesiosis.  He was already being treated for Bartonella, due to his telltale stretch mark rash and classic symptoms. His test also indicated a past infection of Ehrlichia and Anaplasmosis.

I’m going to take a moment here to reiterate we don’t recall seeing a tick on my son in the past few years, and my son never had any of the well-known Lyme rashes that most people expect to see (or even require for diagnosis).  He also never had any joint or muscle pain- another classic Lyme symptom.  He typically did not have any type of pain anywhere.  So, just to recap: no rash, no tick bite that we knew of, no pain or swelling in his joints.

And yet: positive test for Lyme, positive test for Babesiosis, positive past infection for Ehrlichia and Anaplasmosis.  Negative test for Bartonella, but the classic rash for this tick-borne disease has been present for over nine months.

I understand that it may be difficult for some people to accept that Lyme and its co-infections could cause a perfectly healthy teenager’s life to come crashing to a halt.  And, I can see that it is much easier for their own peace of mind to think it is just a teenager being defiant or a crazy mother making things up.  But, that will only provide comfort for them as long as no one they love is infected with one of these diseases.  Yes, it is easier to turn the other way when it’s happening to someone else, but then, they shouldn’t be surprised, I suppose, when they are desperately trying to find support in vain.

Dr. Jones recited some very poignant quotes during our visit, and the one that stuck with me the most is one I have repeated often, as it is the most fitting to our situation and those we have encountered during this experience.  I don’t remember the author of the quote, but it went something like this:

The eyes cannot see what the mind doesn’t know;

The eyes will never see what the mind doesn’t want to know.

I believe there is enough information available today that those who should know better cannot hide behind the ‘ignorance is bliss’ mentality.  As for those who don’t want to know, I will never understand why anyone would risk the health and well being of a child, or anyone for that matter, just to protect their own ego.

My son is taking four separate antibiotics, as well as some supplements.  I have seen more improvement in a few short weeks than I have in all the months prior to the treatment.  Actually, my son’s symptoms were steadily worsening prior to the antibiotic treatment, so it is a miracle to be moving in the direction of healing.

My son and I still face scrutiny, disbelief, accusation, truancy court, and custody issues on a daily basis.  But, on this Mother’s Day, my greatest gift was watching my sons play baseball in the yard with their cousins, smiling and laughing in the sunshine.  A year ago, I might have taken such an unremarkable event for granted. This year, it brought tears to my eyes.  It was far from unremarkable; to me, it was extraordinary.  I am forever grateful to the brave and compassionate people who dedicate their lives to healing our children while fighting their own battles against a disbelieving and blind-by-choice majority.

I know our journey is far from over.  I know we will have many more battles, and cycles of ups and downs.  I also know healing will not happen quickly.  But, it will happen.  My son will get better.

This experience has revealed the true character of so many people I thought I knew well.  The most remarkable of which belongs to my son.  At fifteen, he has shown more courage and integrity during this ordeal than most adults, and I’m honored to be his mom.

 

My child doesn’t have an illness that you can’t see, he has an illness that you don’t want to see.

I dread every doctor appointment.  I cringe when I open my email and see how many new messages I have.  I hold my breath every time the phone rings.  It’s a vicious cycle of expectations exceeding reality, and me being the one who has to play a constant shell game with schools, doctors, and psychologists.

Since my son began experiencing debilitating anxiety last year, I relied on the medical world to tell me what to do in order to help my son.  It became clear immediately that psychological disorders in children are inevitably linked to parental influence.  Within weeks, my son was shuffled on and off medications, therapy treatments, and tests without any satisfactory results.  At this point, instead of further investigation, I was deemed the root cause of the problem, and he was labeled as defiant.

Defiant.  My fifteen year old son, who has never caused anyone a moment of stress, was labeled as defiant.  That still amazes me.  Looking back, I can recount so many contradictions in people’s logic about my son that it makes me dizzy.  The truth is, it didn’t matter what my son did or didn’t do, someone would find fault with the situation.  I was criticized for not giving him enough responsibility.  When I mentioned the things he already did in the home, I was told to create new chores, as in fabricate situations that would require him to do things that weren’t really needed.  He did everything, and without complaint.  Then I was accused of having a controlling relationship to the point of abusive, because he didn’t argue with me or give me a difficult time as most teenagers would.  So, essentially, he is too non-defiant?  And I’m a bad parent because I raised a respectful teen?  I’m still confused over that one.

These days, my son is not much farther along in his recovery than when we started.  Not for lack of trying, that’s for certain, but none of the treatments worked in a way that he has been able to overcome the anxiety.  Now, we are treating his newly diagnosed Babesia, Bartonella and Lyme disease. So, we have moved from a mental health stigma to a mental health and controversial medical diagnosis stigma.  This is not making things any easier on us, and more importantly, my son is not getting any better.

Inevitably, the doctors will be asking how my son is feeling.  Then they will ask what he has been doing all day.  This really annoys me; what do they think he does all day? He’s trying to get better, he’s resting, he’s taking his medicine, he’s bored out of his mind, and he’s worried that he will never get better.  But, in true teenage fashion, he will usually answer with a shrug and a “not much”, which leaves the person asking to create a mental picture a wayward teenager sitting home playing video games, eating junk food, and laughing about getting one over on the system.

Next, they will turn to look at me and ask what I have done to try to get him in school.  They will ask what progress has been made, and everyone will ignore the fact that he has been diagnosed with an illness that many adults spend years trying to recover from.  I will dance around the questions hoping that they will not see me as the ‘helicopter parent’ I have been portrayed to be; at the same time, I will try to honor my child and his illness enough to advocate for him as best I can.  It doesn’t matter that the charges were unsubstantiated, once a parent has been accused of Munchausen-by-proxy and it’s human nature that the next person will keep that in the back of their mind while interacting with the parent.  It’s like telling a jury to ignore what they heard, it isn’t possible.

I may be an overprotective parent, but that is a result of what we have experienced, not the cause of the situation.  I’m sure if I didn’t try to help my child, someone would claim I was negligent and site me for that.  It’s a no-win situation as a parent with a child suffering from mental health issues and/or tick borne illnesses.  I don’t want to be the audience for every practitioner that feels compelled to climb their soap box when I come in to the office, I just want my son to get his life back.

I’m tired of being scared to voice my concerns, or give my input, or ask too many questions.  No parent should feel like a criminal for trying to help their child be healthy.  No child should be labeled as difficult for having an illness.  I guess it’s ok to be sick as long as you don’t complain about it, stand out in any way, inconvenience anyone, or ask for help.  I wonder how we are supposed to raise caring, compassionate, successful children when this is the example being set for them to follow.

 

Learning About Lyme Disease and Wishing I Didn’t Have To

Today, as we sat outside the courtroom waiting to be called in front of the judge, I wondered how many children had passed through these doors before us ready to fight an apathetic school department while their bodies fought an unrelenting illness of its own.  It was suggested that the process of truancy court “benefits everyone”; I could barely contain my disgust when I replied that I did not believe the process benefitted anyone at all.

I knew the school would judge with their eyes, rather than any facts presented, so I saved myself the frustration of trying to reason with the administrators to cancel the court appearance based on an illness they could not see- and therefore do not believe to exist.

At first, I was very angry about the attitude that has confronted us, but that has since been replaced with sadness and concern.  We live in an area with such a high prevalence of tick borne illnesses, that I literally do not know of one household unaffected by Lyme or a co-infection.  The town that gave the disease its name is less than an hour away, so how there can be any disbelief is beyond me.

Having said that, I can say that there is little in the way of information about the symptoms associated with tick borne illnesses beyond what I consider the “classic symptoms”: flu-like symptoms, joint pain, fever, muscle aches, bull’s-eye rash.

The other problem is, we call everything “Lyme”; we just qualify it as with or without the rash.  I recently dug out my own medical records from when I had Lyme disease (without the rash), and I discovered that I actually had Erlichia (now called Anaplasmosis).  I never knew that’s what I had.  The doctors just made it sound like I had Lyme, and not everyone gets a rash.  I’ve since looked up Erlichia, and it’s quite different from Lyme disease and does not cause a bull’s-eye rash at all.

My son has Bartonella, which garners many confused looks and an occasional step back from people we are talking to.  He may have Lyme as well, but his Bartonella symptoms are very distinct, so I wanted to share what Bartonella looks like in my fifteen year-old son.  Below, I am going to list his symptoms and his treatment with some links to resources I have found to be helpful.

Psychiatric Symptoms- new to him this past year:

Anxiety that progressively grew worse over the course of the last year.  He always had anxiety, but it became a perpetual state of fight-or-flight for him.

Agoraphobia

Depression

Brain fog, confusion, difficulty concentrating above and beyond the ADD symptoms he takes medication for.  It’s as if he isn’t taking any medication for ADD., and we had him tested for a possible learning disability, that’s how difficult school became for him.

Crying spells

Occasional fits of anger- never directed at anyone, but a rage that is almost spontaneous and brief

Irritability

Obsessive thoughts- not about anything specific, but again, thoughts that never stop- much like ADD, but worse for him than normal

Anxiety Disorder/Panic Disorder- not controlled by medication.  He tried several situational meds like Xanax, Propanolol, then Prozac and Celexa- nothing helped, they just made him more tired or confused.

Isolation

Dissociation- during his worst anxiety, he felt disconnected from his body.  He would try to tell himself to move, but couldn’t.  He also couldn’t express any of that to anyone near him; almost like being trapped inside his brain.

Excessive fear

Physical symptoms– prior to this, he played on two sports teams each year and was very active:

Extreme fatigue

Malaise

Intermittent fevers without any symptoms

Swollen glands without pain

Vertigo- dizziness

Unable to participate in extended periods of exercise

Headaches

Stomach aches

Legs feel heavy

Stretch-mark rash on his back

Non-descript rash on the top of his chest

Blotchy rash on arms after heat exposure- such as the shower

It’s difficult to know exactly what he is experiencing, because he has never been the type of child who complains about how he feels.  I honestly don’t think he can differentiate many of the symptoms as symptoms, but the list above describes changes we have seen in him, and some of his own descriptions, throughout the year.  We have also learned that he is homozygous for the MTHFR gene C677T, so he does not metabolize folate.

He is now taking Rifampin, Japanese Knotweed in the form of Resveratrol, Acetyl-L-Carnitine, 6(S)-5-methyltetrahydrofolic acid, Multivitamin, and Fish oil, as well as Epsom salt baths.

The cheapest place I have found Resveratrol (the recommended version of Japanese Knotweed) and the Acetyl-L-Carnitine is vitacost.com

http://www.vitacost.com/productResults.aspx?ntk=products&ss=1&NttSR=1&Ntt=resveratrol%20250%20mg 

I found the methyl folate formula at a local pharmacy.  It is made by NuMedica and has the 5-MTHF right on the label, which is helpful when looking for the right version of folate for this genetic anomaly.

On the NuMedica site, you can put in your info to find a doctor or pharmacy that sells this brand.  It was about the same price as ordering it online, but you can also get it from Dr. Lynch’s site at:

http://www.seekinghealth.com/best-supplements/l-methylfolate-calcium-supplements.html 

Information about symptoms of Lyme, Bartonella and other tick borne illnesses in children:

http://www.drjoneskids.com

http://www.mybrainhealth.org/files/Lyme_check_list_06_01_12.pdf

http://www.lyme-symptoms.com/CoInfectionsBartonellas.html#Chronic

http://www.lymedisease.org

http://buhnerhealinglyme.com

Hopefully, this will prove helpful to someone whose child is struggling with symptoms that don’t seem to ‘fit’ what the doctors are saying.  We were lucky to be referred to a LLMD who knew immediately what the rash was on my son’s back and how his symptoms fit together.

Lyme Disease Sends My Son to Truancy Court

Apparently, the high school my son attends equates being out of school due to Lyme disease with knocking off liquor stores for drug money.  This morning, we were summoned to appear in family court for my son’s truancy charge.  The court date is tomorrow morning.  This has been an on-going threat and bully tactic used by the school since October.  Despite our extensive documentation of my son’s Anxiety Disorder, and his brief stay in the hospital this year, the school has opted to ignore the relevant information that may benefit the child in favor of blind indifference.

Once my son was diagnosed with Lyme disease and co-infections, including Bartonella, it was no longer an option to take truancy off the table.  For whatever reason, the same team that finally qualified my son for an IEP after five months, is too impatient to wait for a doctor’s advice, or to see how my son reacts to his treatment.

What strikes me as particularly cowardly is the way in which the school plays the elusive game of ‘pass the buck’.  It seems that everyone I speak to ‘doesn’t know anything about’ what ever it is I’m asking; they all have their own individual protocol.  Yet, they were communicating enough to count the days my son was absent and send it to the family court.

I was also told, “This isn’t school, this is court, your son has to attend.”  That stuck me as odd considering the reason we are going to court, according to this same individual, is because my son has to attend school- regardless of mental or physical health issues.  Why is it that I have to fight with everything I have in order to get my son what the school claims they provide for every child.  The quote on the district site says the following:

“…a place where learning has no limits and academic excellence is measured one child at a time.”

If that’s the case, I would say they are in severe academic failure.  Not only has my child been bullied by the administration and discriminated against for an illness, he is being criminalized for being ill.

I’ll admit, my stomach knotted and I was filed with anxiety when the officer brought the court summons to my home this morning.  I think it’s a natural reaction to feel nervous when being asked to go in front of a judge, especially as a parent.  But now, I’m a lot more curious than anxious.  What are they going to say?  What is the school hoping will happen? I have documented every step of the way with my son’s illness, even prior to the Lyme, and although that may not be a recognized illness for some, his symptoms can’t be ignored.  How can they say he did not have a fever while at the doctor’s office.  How can they ignore his blood work and EKG?  It seems to me that this is a frustratingly irresponsible waste of time and resources in order for the school to get out of giving my son the time and resources we are asking for.

Many people have asked me why I don’t homeschool my son.  There are several reasons.  First, my son does not want to be homeschooled.  He went to school from Kindergarten through ninth grade, and enjoyed being with his friends in the school community.  Secondly, I don’t think it would be a good long term solution for him or for me.  I don’t particularly want to homeschool him, nor do I want to argue with my ex-husband in court about it.  Also, I believe it is the responsibility of our school district to help educate my son. Why should my son be penalized for being sick?  He’s a very good student with no history of disciplinary problems; in fact, the one constant in every situation this year has been the comments about my son’s kind and polite demeanor.

In my opinion, if anyone deserves to react to others with anger, annoyance, and frustration, it’s my son.  But, he has maintained a level of respect for others that they have not shown to him in return.  I am dismayed by the apathy, rudeness, and ignorance shown by many of the adults we have encountered, but it has given me a chance to see what an extraordinary young man my son is.  I have nothing but pity for those who have judged him; if they took the time to get to know him, they could certainly learn a thing or two about empathy and acceptance of others-two things they are severely lacking at the moment.

Bartonella, Babesia, Lyme and My Son’s Battle With Anxiety Disorder

As I sorted through the laundry, I lifted my son’s favorite ‘hoodie’ shirt out of the basket and was about to throw it into the dryer, when I froze.  Just for a moment, it was like everything around me stood still, but I saw the drawstrings from the shirt swinging like a pendulum.  These are the moments when I feel like my heart is going to stop beating; these are the moments when I am overcome with sadness for all my son has endured because we didn’t know any better; these are the moments when I realize what a devastating disease Bartonella really is.

Several months ago, I admitted my son to an adolescent psychiatric hospital for his panic disorder.  He was able to take his own clothing, which mostly consisted of the beloved hoodies, but all strings, chords, and ties had to be cut out of the clothing.  Just the reminder, as I stood holding the new shirt in which the chord was still attached, brought tears to my eyes.

My son has always had anxiety, but this past year, his symptoms took on a life of their own.  His anxiety became excessive fear complete with panic attacks.  He has experienced school phobia to the point where he has only attended one full day this year.  His energy level is practically nonexistent; when he does get a spurt of energy, he needs a full day to recuperate.  His thoughts have been difficult to organize and express, and his concentration, well, let’s just say he struggles to concentrate.

All year, I have been trying to trust my instincts about my son’s illness, and before the Bartonella diagnosis this month, I was seen as the overprotective, enabling mother.  I was even investigated for allegations of abuse.  But still, I felt my son could not be pushed as much as everyone was suggesting.  That’s not to say I didn’t lose it every so often, and I did think his illness was mental health related enough to put him in the hospital, the problem was, he wasn’t getting any better.  If anything, he was getting worse.

His anti anxiety medications did nothing, his antidepressants made him more disconnected.  He had one type of therapy, then another, until finally, no one really knew what technique to use.

At that point, some in the education world were suggesting my son should be readmitted to the psychiatric hospital, others are sending us to truancy court, and the rest just wish we would disappear.  But here we are, and now we have a diagnosis, and a treatment, and a …plan?

Well, I will admit that I nearly cried with relief when the doctor informed us of the Babesia and Bartonella.  I naively believed that this would put an end to the need to advocate for my son and educate others.  I was exhausted from the battle I just endured in the mental health arena.  I was looking forward to some understanding, and support, and dare I say, compassion.

Turns out, the world of Lyme disease and it’s not-so-friendly companions, is more of a nightmare than the mental health misunderstandings, disbeliefs, and accusatory stares.  Even though Lyme disease, et al, are found in every single state, as well as around the world.  Even though the symptoms that my son is experiencing are classic for the Bartonella virus, as is his tell-tale rash.  Even though a year of treatment in the mental health field proved unsuccessful, which to me, is just more proof that the anxiety disorder was secondary to the Tick-borne illnesses.

And what about the fact that this is a very bright, engaging child who hasn’t been able to complete one homework assignment…or leave the house much?  He’s isolated in a prison of an illness that has taken his energy, his cognitive ability, his easy going personality, and replaced it with a constant state of fight or flight, exhaustion, confusion, and a sadness that he can’t even express.

I can see from his expression that he is worried, sad, annoyed, and feels as though everyone is upset with him.  He has essentially lost his 15th year.  I’m stunned at what this disease is capable of doing in such a short amount of time, but I’m even more scared about what it will do in the future if it is not treated for what it is- the root cause of the other problems.  I don’t understand why we treat all the secondary illnesses as separate, unique disorders.  Does he really have medication-resistent anxiety, medication-resistent depression, therapy-resistant panic disorder, sleep-induced fatigue, and so forth?  That makes no sense to me.

But, not much about this whole year makes much sense.  I thought I had learned all there was to learn about anxiety disorders in teens, but, obviously, I didn’t learn all the causes for such disorders.  Now, I have so much to learn about my son’s illnesses that I am overwhelmed.

What will help my son is for me to connect with those who understand these diseases, are brave enough to share their experiences, and can help us find the people and resources he needs in order to recover.  What will help me is to share this journey as I go and hope someone who stumbles upon this page will find some answers for their own child.

I guess all I really have time for is a quick power-nap, as it seems these tick-borne diseases don’t want to sit around and wait to be officially recognized before wreaking havoc in my son’s body.

Patience

One of the frustrating features of my son’s anxiety is the ‘shut down’ mode.

Once he has begun to over process whatever it is that has him worried, he becomes incommunicative. As a parent, this is when I want to get him to talk about it and figure out what is causing his anxiety.

But, the reality is, until he is able to learn better coping skills, he is not going to be able to have a rational conversation.

This is something that requires patience…from me. He is working on gaining those skills, it is not up to me, or anyone else, what that timeline should look like in terms of how long it takes him to acquire the skills he needs to be healthy.

The other frustration is the regression during the anxiety attack. My very rational, intelligent teenager becomes a scared, irrational six year old.

Some of this is what happens during PTSD, as well, the sufferer is actually taken back to the emotion felt at the time of the trauma. If my son experienced a trauma to cause a phobia when he was younger, that’s how he appears during the panic attack.

It’s not only frustrating, but it’s a little unsettling. I feel helpless and concerned, and at the same time, I want to shake him and tell him to act like a fifteen year old, not a six year old.

Of course, that is absolutely NOT the way to react, it’s just the initial reaction that I feel like doing. But, I have learned from experience that talking to the anxious six year-old brain like it’s a rational fifteen year-old brain ends in further withdrawal, greater anxiety, and lots of remorse for both of us afterwards.

Patience.

That’s the only thing I can say is the one constant needed to deal with anxiety. You can’t have patience without understanding and trust. You can, however, have understanding and trust without patience, and I think that’s where many of us run into difficulty as parents, some times.

Patience doesn’t mean letting the anxiety get it’s way all the time, though. That’s the very tricky balance.

We have to figure out when to push and when not to. When to be stern and when to give space. For me, it’s like learning new dance steps that probably look ridiculous to anyone watching.

I am constantly starting, stopping, faltering, trying again…

I never was very coordinated to begin with, but it’s kind of humbling to not know how to do something I thought I was pretty good at until now, which is probably exactly how my son feels at the moment, too.

Patience.

My Child is Not The One Being Difficult

Lately, whenever someone asks about our new puppy, I like to respond by saying, “We just adopted her for our son.  In our family, when you become truant, we buy you a puppy.”

I don’t usually follow up with anything other than an innocent smile, and, not surprisingly, people typically react with a nervous laugh or puzzled look.  And why shouldn’t they, it’s an absurd statement, but it is not any more absurd than some of the statements I have heard over the past two months while my son has been home from school with panic disorder.

My favorite absurd statement is that which claims my son is being difficult.  Difficult?  This amazes me.  It’s as if it is unacceptable that a teenager not only have anxiety that is debilitating, but that he actually talks to his parent about it.  I suppose if he was going to school every day, struggling to keep up with classes, and eventually finding ways to self-medicate and ease the internal angst, then he would be a ‘normal’ teenager.  Or, at least, he wouldn’t be showing up on their radar as a ‘problem’ for missing school.  How sad that we would rather our teenagers find dangerous and illicit resources on their own, rather than try to help them in a loving, supportive, nurturing environment.

Of course, after he started down the dreaded path of alcohol and drug use, petty crime, and vagrancy, everyone would say, “We don’t understand; he was always such a bright, respectful boy, so sweet and caring.”  They would no doubt tell me he needed help then.  I would probably get tons of sympathy and concern, along with a plethora of resources for the troubled teen.  He still wouldn’t be their concern, so they would be more than eager to suggest resources.

But instead, I have a child that is struggling on the inside and brave enough to ask for help, and what we have received so far has been nothing short of disturbing.  There hasn’t been any support, no resources to speak of, and definitely no sympathy in this scenario.  There has been, however, an investigation by child services after I was accused of child abuse for keeping my son out of school and not putting him in a psychiatric hospital.

Both reactions seem kind of extreme to me, for some reason.  I mean, call me crazy (which of course, several people have), but I don’t think anxiety disorder warrants a stay at the psychiatric hospital just yet; why don’t we try some educational testing and therapy first.  Unfortunately, that kind of rational and calm thinking doesn’t belong in the world of childhood mental health.  Apparently, I had two choice: denial or over-reaction.

I guess my write-in of option number three is what got my in trouble.  Well, if people want to judge me in a way that let’s their neat little world fit into perfect little squares, then I’m going to act the part of how they perceive me.  At least it’ll be more fun than sitting back while narrow minds try to make sense of my son’s situation.

It’s interesting to me that people assume my son is causing me stress while they are convinced that they, themselves, are being quite helpful.  One high school principal in particular actually expressed this to my son.  I was nearly stunned speechless as I watched the lips moving on the over-grown dummy in the ill-fitting suit that looked as though it was a reject from the wardrobe of the Sopranos.  Luckily, I recovered in time to clarify for the over-employed bully that he was the only one causing me stress at the moment.  And though I wasn’t sure if his remarks came from ignorance or arrogance, I would appreciate if he kept his reckless and irresponsible remarks to himself.

In truth, however, the complete ignorance and apathy, disbelief and accusations have been helpful.  They have helped me to see just how broken our society is.  They have exposed the true ugliness of a nation more concerned with how many days a child is in school than whether or not a child is healthy.  Although, if there was a physical illness affecting my son, that would be accepted as a legitimate excuse.  I guess it is just my son’s bad luck that he inherited a mental illness rather than, say, juvenile diabetes or something.

I tried to explain once that forcing my son to go to school after his panic attack was the equivalent of forcing him to run into a burning building.  The look of disbelief and pity I received was enough to set me on fire.  I was immediately labelled as enabling my son’s illness, because instead of just telling him to get over it and do what I say, I tried to understand what he was going through so that I could help him.

It seems the topic of mental illness in children is one that everyone wants to ignore until it becomes mental illness of an adult.  At that point, everyone can blame the victim, so to speak, and take no responsibility what-so-ever for the outcome of  his or her life.  I have watched health care providers and school officials jump ship as if my son had a contagious disease that, once spoken aloud, would infect everyone around them.

So, I take issue when someone suggests that my son is being difficult, as if he is pretending  to have a debilitating illness in order to turn our lives upside-down.  I guess they think he enjoys having an embarrassing illness, being separated from his friends, missing out on all things teenager, and going to countless doctors and counselors nearly every day.

I suppose it’s all part of his diabolical teenage plan to have not one ounce of privacy, to have to explain how he feels over and over to strangers with each new referral, to take medications that sometimes make him sick, to wonder if he is ever going to get better, and to feel an overwhelming sense of guilt for what I am dealing with in the process- all while watching his peers carry on around him without any difficulties of their own.

Yes, I’m sure that is every teenager’s dream–acting out in this way, feeling sad and scared, unable to go to school,  missing out on life, and wondering why those who should be most eager to help them, instead, attack their family as if it was a dangerous threat to society.

That is why whenever I hear someone say that my son is being difficult, I usually make a mental note to never have any further interaction with these individuals. By mis-labeling my child this way, they have labelled themselves as individuals who are prejudice, intolerant, and biased- exactly the type of people who have made my son’s journey extremely difficult.

Related articles

• What is mental Illness? (q96direct.wordpress.com)
• A Welcome Reminder 

Name(required)

Email(required)

Website

Comment(required)

Submit

Δ