By Teresa Conrick
My daughter, Megan, diagnosed sixteen years ago with Autism, has had an intense twelve months of.medical symptoms. I call them "symptoms" but they really are clues as to the true nature of her diagnosis of autism. It began last Fall with seizures, unusual, hormone-related, monthly ones, that had progressed into episodes of behavioral concern. An earlier EEG had showed no seizures but instead, a pervasive and ominous diffuse slowing of the brain waves. Excessive estrogen can trigger mania, agitation and seizures in a typical female, so combine that with a diagnosis of autism and you get a full blown detour into an abyss, frighteningly far, far away from normalcy. More testing had shown "estrogen dominance," another "symptom" in Meg's body. Hormone therapy has not yet stopped the behaviors. Anti-seizure medication has not yet stopped the seizures. An autoimmune diagnosis also has now surfaced , which helped make sense of the increasing irritability, enuresis, plus motor and vocal tics, often screamed out of my lovely daughter's mouth. Her sister, two years younger, has lived in a path of bewilderment, fear and I am quite sure, shame, as the odd and erratic behaviors of her "older", yet really "younger" sister infiltrated our house. No friends or family have been in our home for so long as we have been living a nightmare. The behaviors were not a choice made by Megan, but instead have been a "symptom" of her immune system kidnapping her. For me, it has been a painful reminder of how sinister Autism can be, especially when bacterial and viral infections seem to trigger Meg's body into a twilight zone in which I can't reach her. Was this STILL autism or were we in a new place, like P.A.N.D.A.S. (Pediatric autoimmune neuropsychiatric disorders associated with Streptococci)? It is like watching her regress again, as she did sixteen years ago. Her recent years have been positive for numerous Strep, candida, clostridia, and other viral infections.
It was decided that Meg needed an MRI and a 24-hour, closed circuit televised, EEG. Her neurologist, new since Summer for us, saw how my daughter's behaviors were concerning and listened to my description of aggressions, involuntary movements and vocal tics/yells that I am sure the neighbors down the block could hear. I am thankful that he didn't just see an eighteen year old, severely affected "with autism," and just needing something for the behavioral "symptoms." Going into a hospital with Meg, overnight and away from the safety of home, took my breath away with fear as I thought about it. Meg had a 24 hour EEG at age six but the electrodes were fastened to her head at the hospital, yet we were able to go home with a fanny pack monitor. Other EEGs had been just a few hours long. This EEG was to be video monitored, an important addition as that 24 hour EEG twelve years ago was normal, yet she had just developed generalized tonic clonic seizures at age seventeen. The video would be able to help us determine if there were subclinical seizures causing these scary behaviors.
There were many departments that we had to pass through in our journey. Admissions, Ambulatory Services and then MRI, all before noon. Others were to follow later. More than one (in fact 6 people that day) asked if Meg needed, or if I wanted her to get a flu shot. October in a hospital is a continuous infomercial for Flu and Pneumonia vaccines. I politely declined and wondered if our record had now been flagged, similar to Elaine's from Seinfeld, where it labeled her as a “difficult” patient. I wasn't trying to be difficult but Meg's decline in health started with mercury-containing vaccines and then the fever and full body rash after her MMR significantly hastened that decline with loss of speech, loss of eye contact and loss of relating to us.
Only a couple of them eyed me as a deserter from the herd. I think the rest actually nodded as if they, too would do the same with their child -- protect that child from a product that had harmed in their past. Onward to MRI we went. Meg was a trooper. She is so very impaired that we get stares always but I am so proud of her strength and courage. Our MRI was done by some great people and their interactions with my daughter were beautiful. One shared that he, too had autism in his life and his love for that family member shined to my Megan. I was later to find out that the results from the MRI were normal. Onward to the EEG monitoring and hours overnight in a small room.
Meg looked like she was ready for Halloween, as a mummified frankenstein, head wrapped with electrodes bulging out. I was holding back tears seeing her, so vulnerable in this huge hospital. Ten seconds out of my eyesight and she would be a goner, unable to communicate or navigate back to safety. It is a reality that comes up more for me these days. We finally got our room and made it ours with Barney, Raffi and Baby Songs, frozen friends from Meg's life at age 2, before regression,. Who knew that music from toddlerhood would be the safe blanket into adulthood for so many severe cases of regressive autism, but it's true. Barney lives on like it's 1994.
My daughter did well, except for some moments of panic, fear and pain. Blood draws, IV's, EEG glue in the hair, and EKG electrodes on her chest, were all on the menu for that night. Meg handled it as I told her how proud I was and how it was all to find out how to help her FEEL BETTER. Unable to talk, she smiled and gleefully smelled her blanket. Our neurologist popped in from time to time, often complimenting Megan on her relaxed ability in bed and her beautiful face. Kind words to my daughter mean a lot to me. He left but did share that Psychiatry would be coming down to "discuss some options about Meg's behavior." I had told him days before that I felt Meg may be having more seizures and that may be why my daughter was having episodes of agitation, coupled with autoimmune triggers, like estrogen. I know he felt the same way but once you are in the hospital, it is like a giant medical company, with each department fighting for their piece of the pie -- the patient's body. I waited, prepared to battle for my daughter's medical health and freedom.
The Resident who entered was a nice enough person, young and willing to listen about Meg's descent into autism from vaccination, her repeated illnesses, especially Strep and numerous viruses that triggered Obsessive Compulsive Disorder/OCD, emotional lability, seizures, and now an official autoimmune piece to our puzzle. Her question to me -- did I have any family members with a history of OCD? That's all she had, after all I had shared, and none of my sharing was about family or genes. I did explain that Meg has a relative on the other side of her family, who has suffered from OCD. She, too has red hair and for those who have read my melanin research, having red hair and blue eyes can have some disadvantages, as it appears to make one vulnerable to tics, Tourettes, and many
neurodegenerative diseases , such as these examples
"Iris pigmentation was evaluated in 153 Caucasian patients with torticollis and other focal, segmental, or generalized dystonias of unknown cause.
Since these disorders are rare in non-Caucasians, it was hypothesized that a relationship might exist between decreased melanin metabolism, reflected by iris pigmentation, and a genetic predisposition to these disorders of involuntary movement", or this one "....many neurocutaneous diseases show coexistent neuropsychiatric and pigmentary disorder........The schizophrenics generally have significantly lower skin melanin concentrations than their matched controls, except at the male exposed areas. The differences are more marked in females." or this " A link between red hair colour and Tourette syndrome has been hypothesised as a result of an observation that red hair is over represented in this condition. A causal association between red hair and melanocortin-1 receptor has been shown, and is the only gene that is known to explain physiological variation in human pigmentation. Melanocortins are believed to be involved in many disease states including pigmentary disorders, adrenal disorders, obesity, anorexia, prolonged and neuropathic pain, and inflammatory response"......"In this study 22, 13% (95% CI 8.9-19.4) of the Tourette syndrome population had red hair. Data from Australian studies suggests, the normal population with red hair is 2–6%. The proportions of red haired individuals in this study were significantly higher than five of the eight population control groups"....."Many Tourette syndrome patients had multiple red haired relatives."
I doubt the Resident wanted to hear my research about mercury and thimerosal being able to trigger autoimmunity along with bacteria and viruses or see any
connections to the immune system, like the "symptoms" of OCD or tics. Toxic metals, bacteria and viruses are very pertinent and worthwhile topics for research and investigation, but many in the hospitals across the US, the manors in the kingdom of the Medical Industry, may not want to see that. Meanwhile, Meg's EEG was shared to me while the Resident remained. There were significant abnormal waves. Those waves could be looked at as the deadly undertow, increasingly taking my daughter down under and away from us all. Her current anti-seizure medication was to be titrated upwards in the following weeks to see if the seizures could be stopped, the waves calmed, and the "symptoms" of Meg's hellish year would go away. The Resident looked relieved as here was THE answer and no need to either listen to me anymore or to have to report back that I was declining Risperdal. I knew that Risperdal had numerous, negative side effects, "symptoms" in many who took it. Since Meg has tics along with debilitating OCD, Risperdal could worsen her condition: Journal of Child and Adolescent Psychopharmacology,
Risperidone-Induced Obsessive-Compulsive Symptoms in Two Children-
"
Objective: To present two cases of rapid-onset obsessive-compulsive symptoms in children treated with risperidone.
Cases: "A" was an 8-year-old boy with attention deficit and chronic tic disorder who developed obsessive-compulsive symptoms within 2 weeks of starting risperidone. When the dose of 0.5 mg tid was discontinued, the obsessive-compulsive symptoms resolved with no return over 8 months of follow-up.
"B" was an 11-year-old girl with mild mental retardation and aggression who was treated with risperidone 1 mg per day. Obsessive-compulsive symptoms suddenly emerged 10 days after starting risperidone and resolved within 3 days of discontinuation. In both cases, streptococcal pharyngitis was ruled out.
Conclusion: Although the mechanism is not clear, these cases add to several other reports concerning the sudden emergence of obsessive-compulsive symptoms and anxiety symptoms in children treated with atypical antipsychotics. Clinicians should be alert to the possibility of these adverse effects in children treated with these drugs"
Being a parent of a child with an autism diagnosis, I have to be ever vigilant on her true medical issues as they explain her behaviors. Risperdal can be used as a band-aid and a bad one at that. We went into the hospital to determine if there was a specific reason, a MEDICAL reason that correlated with Meg's "symptoms." It was found and I pray that the anti seizure medicine will help. The Resident was able to leave as Meg's Neurologist said no other medications would be necessary as the seizures explained what had been happening.
Much to my amazement, as we waited the hours for our discharge, the head of Psychiatry, came into our music-filled room. By then, Meg was done with the hospital and as our nurses, aides and environmental service people had said good bye hours earlier, she was not keen on the wait for the golden ticket out of the medical kingdom. This doctor stared at Meg, and Meg jumped out of the bed, wires finally out after 24 hours. The doctor jumped back, astonished at my daughter's energy and primitive reflexes. She began her well rehearsed speech about how behaviors in autism, and especially Megan, could be alleviated and did I know that? I honestly told her that I was uncertain why she had felt the need to come visit us as our doctor had made it clear to the Resident that Psychiatry was not needed as the EEG told the tale of Meg's behaviors. She looked a bit uncomfortable and eyed Meg as a lost soul that she wanted to capture in some big DSM net, up on the 4th floor. I went on telling her how I had worked in Psych for about twenty years and that I was aware of the many medications. I then couldn't stop myself and went into Meg's medical history, beginning with health complications after vaccines, then an autism diagnosis, immune abnormalities throughout the years, including Strep and viral induced P.A.N.D.A.S., Meg's recent autoimmune diagnosis and some similarities to Lupus and Arthritis. She seemed to change in front of me, especially as I explained Meg's current vocal tics in the bathroom and her grunts from anesthesia-induced gas and constipation. I assured her if I ever felt the need for their assistance, I would seek them out, but my daughter's medical issues explained her behaviors and her attending doctor had also made that clear. I offered my opinion that the many side effects from those psychiatric meds were concerning to me. She knew I was not going to change my mind so she said her good byes and actually seemed to be ok with my decision.
Before we finally left, a well meaning Nutritionist showed up as Meg's blood test showed a lower level of calcium. I wasn't quite sure why she came in to talk menu as we were leaving but then she explained how Meg needed more calcium and that the gluten/casein diet was not offering her enough. I assured her that we knew the levels went up and down based on Meg's food intake and that she had been so sick and really barely eating. She could not tolerate supplemental calcium as it seemed to worsen her behaviors and since calcium, seizures, autism and the brain were all connected , we tried to balance different supplements and foods to give her calcium. I ended with the plan that I would talk with her doctor that treats her immune issues.
Our stay at the hospital was helped much by those people who were kind and really listened to what truly is happening to Megan. Our Neurologist and those who, like him, saw a beautiful girl, unable to talk, with brain abnormalities, pain and confusion, and who needed real medical help. I was disappointed that on our discharge summary there was no mention of Meg's history of adverse vaccine reactions, immune abnormalities and infections, and two, recent, positive antinuclear antibody (ANA) tests showing an Autoimmune process.
I am hopeful that there will be more people, good and honest medical professionals, who will listen and help our fragile canaries.
Teresa Conrick is Contributing Editor for Age of Autism.
By Teresa Conrick
My daughter, Megan, diagnosed sixteen years ago with Autism, has had an intense twelve months of.medical symptoms. I call them "symptoms" but they really are clues as to the true nature of her diagnosis of autism. It began last Fall with seizures, unusual, hormone-related, monthly ones, that had progressed into episodes of behavioral concern. An earlier EEG had showed no seizures but instead, a pervasive and ominous diffuse slowing of the brain waves. Excessive estrogen can trigger mania, agitation and seizures in a typical female, so combine that with a diagnosis of autism and you get a full blown detour into an abyss, frighteningly far, far away from normalcy. More testing had shown "estrogen dominance," another "symptom" in Meg's body. Hormone therapy has not yet stopped the behaviors. Anti-seizure medication has not yet stopped the seizures. An autoimmune diagnosis also has now surfaced , which helped make sense of the increasing irritability, enuresis, plus motor and vocal tics, often screamed out of my lovely daughter's mouth. Her sister, two years younger, has lived in a path of bewilderment, fear and I am quite sure, shame, as the odd and erratic behaviors of her "older", yet really "younger" sister infiltrated our house. No friends or family have been in our home for so long as we have been living a nightmare. The behaviors were not a choice made by Megan, but instead have been a "symptom" of her immune system kidnapping her. For me, it has been a painful reminder of how sinister Autism can be, especially when bacterial and viral infections seem to trigger Meg's body into a twilight zone in which I can't reach her. Was this STILL autism or were we in a new place, like P.A.N.D.A.S. (Pediatric autoimmune neuropsychiatric disorders associated with Streptococci)? It is like watching her regress again, as she did sixteen years ago. Her recent years have been positive for numerous Strep, candida, clostridia, and other viral infections.
It was decided that Meg needed an MRI and a 24-hour, closed circuit televised, EEG. Her neurologist, new since Summer for us, saw how my daughter's behaviors were concerning and listened to my description of aggressions, involuntary movements and vocal tics/yells that I am sure the neighbors down the block could hear. I am thankful that he didn't just see an eighteen year old, severely affected "with autism," and just needing something for the behavioral "symptoms." Going into a hospital with Meg, overnight and away from the safety of home, took my breath away with fear as I thought about it. Meg had a 24 hour EEG at age six but the electrodes were fastened to her head at the hospital, yet we were able to go home with a fanny pack monitor. Other EEGs had been just a few hours long. This EEG was to be video monitored, an important addition as that 24 hour EEG twelve years ago was normal, yet she had just developed generalized tonic clonic seizures at age seventeen. The video would be able to help us determine if there were subclinical seizures causing these scary behaviors.
There were many departments that we had to pass through in our journey. Admissions, Ambulatory Services and then MRI, all before noon. Others were to follow later. More than one (in fact 6 people that day) asked if Meg needed, or if I wanted her to get a flu shot. October in a hospital is a continuous infomercial for Flu and Pneumonia vaccines. I politely declined and wondered if our record had now been flagged, similar to Elaine's from Seinfeld, where it labeled her as a “difficult” patient. I wasn't trying to be difficult but Meg's decline in health started with mercury-containing vaccines and then the fever and full body rash after her MMR significantly hastened that decline with loss of speech, loss of eye contact and loss of relating to us.
Only a couple of them eyed me as a deserter from the herd. I think the rest actually nodded as if they, too would do the same with their child -- protect that child from a product that had harmed in their past. Onward to MRI we went. Meg was a trooper. She is so very impaired that we get stares always but I am so proud of her strength and courage. Our MRI was done by some great people and their interactions with my daughter were beautiful. One shared that he, too had autism in his life and his love for that family member shined to my Megan. I was later to find out that the results from the MRI were normal. Onward to the EEG monitoring and hours overnight in a small room.
Meg looked like she was ready for Halloween, as a mummified frankenstein, head wrapped with electrodes bulging out. I was holding back tears seeing her, so vulnerable in this huge hospital. Ten seconds out of my eyesight and she would be a goner, unable to communicate or navigate back to safety. It is a reality that comes up more for me these days. We finally got our room and made it ours with Barney, Raffi and Baby Songs, frozen friends from Meg's life at age 2, before regression,. Who knew that music from toddlerhood would be the safe blanket into adulthood for so many severe cases of regressive autism, but it's true. Barney lives on like it's 1994.
My daughter did well, except for some moments of panic, fear and pain. Blood draws, IV's, EEG glue in the hair, and EKG electrodes on her chest, were all on the menu for that night. Meg handled it as I told her how proud I was and how it was all to find out how to help her FEEL BETTER. Unable to talk, she smiled and gleefully smelled her blanket. Our neurologist popped in from time to time, often complimenting Megan on her relaxed ability in bed and her beautiful face. Kind words to my daughter mean a lot to me. He left but did share that Psychiatry would be coming down to "discuss some options about Meg's behavior." I had told him days before that I felt Meg may be having more seizures and that may be why my daughter was having episodes of agitation, coupled with autoimmune triggers, like estrogen. I know he felt the same way but once you are in the hospital, it is like a giant medical company, with each department fighting for their piece of the pie -- the patient's body. I waited, prepared to battle for my daughter's medical health and freedom.
The Resident who entered was a nice enough person, young and willing to listen about Meg's descent into autism from vaccination, her repeated illnesses, especially Strep and numerous viruses that triggered Obsessive Compulsive Disorder/OCD, emotional lability, seizures, and now an official autoimmune piece to our puzzle. Her question to me -- did I have any family members with a history of OCD? That's all she had, after all I had shared, and none of my sharing was about family or genes. I did explain that Meg has a relative on the other side of her family, who has suffered from OCD. She, too has red hair and for those who have read my melanin research, having red hair and blue eyes can have some disadvantages, as it appears to make one vulnerable to tics, Tourettes, and many neurodegenerative diseases , such as these examples
"Iris pigmentation was evaluated in 153 Caucasian patients with torticollis and other focal, segmental, or generalized dystonias of unknown cause. Since these disorders are rare in non-Caucasians, it was hypothesized that a relationship might exist between decreased melanin metabolism, reflected by iris pigmentation, and a genetic predisposition to these disorders of involuntary movement", or this one "....many neurocutaneous diseases show coexistent neuropsychiatric and pigmentary disorder........The schizophrenics generally have significantly lower skin melanin concentrations than their matched controls, except at the male exposed areas. The differences are more marked in females." or this " A link between red hair colour and Tourette syndrome has been hypothesised as a result of an observation that red hair is over represented in this condition. A causal association between red hair and melanocortin-1 receptor has been shown, and is the only gene that is known to explain physiological variation in human pigmentation. Melanocortins are believed to be involved in many disease states including pigmentary disorders, adrenal disorders, obesity, anorexia, prolonged and neuropathic pain, and inflammatory response"......"In this study 22, 13% (95% CI 8.9-19.4) of the Tourette syndrome population had red hair. Data from Australian studies suggests, the normal population with red hair is 2–6%. The proportions of red haired individuals in this study were significantly higher than five of the eight population control groups"....."Many Tourette syndrome patients had multiple red haired relatives."
I doubt the Resident wanted to hear my research about mercury and thimerosal being able to trigger autoimmunity along with bacteria and viruses or see any connections to the immune system, like the "symptoms" of OCD or tics. Toxic metals, bacteria and viruses are very pertinent and worthwhile topics for research and investigation, but many in the hospitals across the US, the manors in the kingdom of the Medical Industry, may not want to see that. Meanwhile, Meg's EEG was shared to me while the Resident remained. There were significant abnormal waves. Those waves could be looked at as the deadly undertow, increasingly taking my daughter down under and away from us all. Her current anti-seizure medication was to be titrated upwards in the following weeks to see if the seizures could be stopped, the waves calmed, and the "symptoms" of Meg's hellish year would go away. The Resident looked relieved as here was THE answer and no need to either listen to me anymore or to have to report back that I was declining Risperdal. I knew that Risperdal had numerous, negative side effects, "symptoms" in many who took it. Since Meg has tics along with debilitating OCD, Risperdal could worsen her condition: Journal of Child and Adolescent Psychopharmacology, Risperidone-Induced Obsessive-Compulsive Symptoms in Two Children-
"Objective: To present two cases of rapid-onset obsessive-compulsive symptoms in children treated with risperidone.
Cases: "A" was an 8-year-old boy with attention deficit and chronic tic disorder who developed obsessive-compulsive symptoms within 2 weeks of starting risperidone. When the dose of 0.5 mg tid was discontinued, the obsessive-compulsive symptoms resolved with no return over 8 months of follow-up.
"B" was an 11-year-old girl with mild mental retardation and aggression who was treated with risperidone 1 mg per day. Obsessive-compulsive symptoms suddenly emerged 10 days after starting risperidone and resolved within 3 days of discontinuation. In both cases, streptococcal pharyngitis was ruled out.
Conclusion: Although the mechanism is not clear, these cases add to several other reports concerning the sudden emergence of obsessive-compulsive symptoms and anxiety symptoms in children treated with atypical antipsychotics. Clinicians should be alert to the possibility of these adverse effects in children treated with these drugs"
Being a parent of a child with an autism diagnosis, I have to be ever vigilant on her true medical issues as they explain her behaviors. Risperdal can be used as a band-aid and a bad one at that. We went into the hospital to determine if there was a specific reason, a MEDICAL reason that correlated with Meg's "symptoms." It was found and I pray that the anti seizure medicine will help. The Resident was able to leave as Meg's Neurologist said no other medications would be necessary as the seizures explained what had been happening.
Much to my amazement, as we waited the hours for our discharge, the head of Psychiatry, came into our music-filled room. By then, Meg was done with the hospital and as our nurses, aides and environmental service people had said good bye hours earlier, she was not keen on the wait for the golden ticket out of the medical kingdom. This doctor stared at Meg, and Meg jumped out of the bed, wires finally out after 24 hours. The doctor jumped back, astonished at my daughter's energy and primitive reflexes. She began her well rehearsed speech about how behaviors in autism, and especially Megan, could be alleviated and did I know that? I honestly told her that I was uncertain why she had felt the need to come visit us as our doctor had made it clear to the Resident that Psychiatry was not needed as the EEG told the tale of Meg's behaviors. She looked a bit uncomfortable and eyed Meg as a lost soul that she wanted to capture in some big DSM net, up on the 4th floor. I went on telling her how I had worked in Psych for about twenty years and that I was aware of the many medications. I then couldn't stop myself and went into Meg's medical history, beginning with health complications after vaccines, then an autism diagnosis, immune abnormalities throughout the years, including Strep and viral induced P.A.N.D.A.S., Meg's recent autoimmune diagnosis and some similarities to Lupus and Arthritis. She seemed to change in front of me, especially as I explained Meg's current vocal tics in the bathroom and her grunts from anesthesia-induced gas and constipation. I assured her if I ever felt the need for their assistance, I would seek them out, but my daughter's medical issues explained her behaviors and her attending doctor had also made that clear. I offered my opinion that the many side effects from those psychiatric meds were concerning to me. She knew I was not going to change my mind so she said her good byes and actually seemed to be ok with my decision.
Before we finally left, a well meaning Nutritionist showed up as Meg's blood test showed a lower level of calcium. I wasn't quite sure why she came in to talk menu as we were leaving but then she explained how Meg needed more calcium and that the gluten/casein diet was not offering her enough. I assured her that we knew the levels went up and down based on Meg's food intake and that she had been so sick and really barely eating. She could not tolerate supplemental calcium as it seemed to worsen her behaviors and since calcium, seizures, autism and the brain were all connected , we tried to balance different supplements and foods to give her calcium. I ended with the plan that I would talk with her doctor that treats her immune issues.
Our stay at the hospital was helped much by those people who were kind and really listened to what truly is happening to Megan. Our Neurologist and those who, like him, saw a beautiful girl, unable to talk, with brain abnormalities, pain and confusion, and who needed real medical help. I was disappointed that on our discharge summary there was no mention of Meg's history of adverse vaccine reactions, immune abnormalities and infections, and two, recent, positive antinuclear antibody (ANA) tests showing an Autoimmune process.
I am hopeful that there will be more people, good and honest medical professionals, who will listen and help our fragile canaries.
Teresa Conrick is Contributing Editor for Age of Autism.
Posted by Age of Autism at October 13, 2011 at 5:45 AM in Teresa Conrick Permalink