Autism, Hospitals and the Belly of the Beast
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.
Teresa, we just did this at Rush and I had a glimmer of hope with some of the docs we saw. Yes, they also asked us to give Jack the flu shot but they also continued to give him his nystatin and I was shocked that they would. When we were at Loyola they laughed that off and would not give it to him. They also had this amazing light bubble machine for when jack was in pre-op waiting for his sedative. And the social worker assigned to us really got it and listened to everything I said. And when we just met Dr. Smith last week he encouraged us to give Jack plenty of B6. I've never heard a mainstream doc suggest that before for sure. We loved him and we thank you so much for the recommendation.
Thank you for being such a warrior for Meg and educating the rest of us with all you have learned. I'm honored to know you.
Posted by: Molly C. | March 16, 2013 at 12:13 PM
Thank you all for your comments of support and concern. I really appreciate them and is a nice reminder of how Age of Autism can be not only informative with daily news, but very supportive to us personally. I remember adding about seizures and the immune system in previous writings and it seems to apply to Meg more than ever:
"When neurological symptoms are present, infections of the CNS must be considered. Brain infections can stimulate glial responses, and the presence of viral and bacterial infections in nerve cells, can stimulate autoimmune responses against nerve cell antigens as well as the infections within them.155"
Infections are associated with various autoimmune conditions.38-40 Autoimmunity can occur when infections like cell-wall-deficient bacteria are released from cells containing parts of cell membranes that are then seen as part of a bacterial antigen complex, or bacteria can synthesize mimicry antigens (glycolipids, glycoproteins or polysaccharides) that are similar enough in structure (molecular mimicry) to stimulate autoimmune responses against similar host antigens. Alternatively, viral infections can weaken or kill cells and thus release cellular antigens, which can stimulate autoimmune responses, or they can incorporate molecules like gangliosides into their structures.
In addition to molecular mimicry, autoimmunity involves several other complex relationships within the host, including inflammatory cytokines, Toll-like receptor signalling, stress or shock proteins, nitric oxide and other stress-related free radicals, among other changes that together result in autoimmune disease.”
"The concept of epilepsy and seizure disorders caused by autoantibodies to specific neuronal membrane proteins has developed significantly during the past few years.
There are a growing number of specific antibodies associated with new onset epilepsy. These patients are likely to have an immune-mediated disorder that may benefit from immunotherapies. Many of these patients do not show a good response to conventional antiepileptic drugs."
Posted by: Teresa Conrick | October 16, 2011 at 05:55 PM
Hi Teresa,
Megan seems so much like my 18 year old son with seizures, tics, and loud vocal stim. He also has had a history of high strep, though treatment for PANDAS really did not help him. I started homeopathy last year and through the Houston Center found a neurologist who specializes in gut/brain issues (brainmending.com) I have started using some herbs (bacopa monniera, reishi mushroom) and for the first time in a long while seizures are decreasing instead of increasing. It is slow and there is nothing miraculous to report, but significant for us in that we are considering decreasing seizure meds for the first time in five years. Just some info to consider (I know you have tried and researched so much). Thank you for sharing so much of your knowledge and journey.
Posted by: mlinn | October 15, 2011 at 11:24 PM
Teresa, you are a wonderful mom. Megan knows it and remains strong because of you. Your writings speak for all us moms. Love and prayers are with you all.
Posted by: Colleen Manata | October 15, 2011 at 01:12 AM
Yes, raw garlic, especially fresh, is hard to eat, but not impossible. When I eat whole cloves, I do so with water and/or bread or on a salad. Heat destroys the allicin. I don't know to what extent heat destroys allicin, but if you have infection, inflammation or parasitic issues you definitely want to eat whole raw garlic. Every night before bed I take two slices of garlic, one for each side of my mouth. I keep them there all night. They kill infections in the mouth, help me relax and fall asleep and prevent nasal congestion.
Posted by: Mary Podlesak | October 14, 2011 at 11:01 PM
Teresa and Megan, I really do feel your persistence will pay off. Good luck!
Mary P.: does it matter if you slightly cook the sliced/crushed garlic. Otherwise it's pretty hard to eat!
Posted by: jen | October 14, 2011 at 07:41 PM
I think I am to negative all the time and do not count my blessings.
So today I will do that.
Tereasa
Things may very well get much better. Our family has been in a pretty dark place for a long time been - it was pretty bad for a long time. But we have come through a lot and now:
Today was the bi-annual checkup with my son's epilespy doctor.
My son has not had a seizure in over 5 years!!!!!
He takes a seizure medicine, Keppra - twice a day.
I really like this doctor, I did say he lied about the MRI, - well you know what; maybe not. Kent Hecklivily says the white spots on the chronic fatigue patients' brain have been know to disappear - what if it is the same thing for my son, and it was not damage from ischemia - maybe it did just disappear?
Today the neurologist doctor opened the door and with a stern look on his face wagged his finger at my son to come outside into the hall so he could see him walk. The doctor was joking around with him and my son knew it.
My son jumped up and said on his way out with a smile on his face, "Hey, you did that in a way that I thought I was in trouble or something!"
Guys, I am truly blessed. My son is now 25 and he helps with the bailing of hay, he splits the wood, he always starts my roter tiller for me, he mows my aged parents' yard, trims their hedges, he watches over his sister who had a psychotic break down last year and is quick to tell me if he thinks there is anything wrong.
His only problem is he would rather sit in his room and play video games and has no social life(no friends), no social life outside of the family. But he is only 25 and again I am blessed that he seems happy, and picky about girls.
Posted by: Benedetta | October 14, 2011 at 06:56 PM
Teresa, I hope to hear you and other parents of the severely affected by autism in a Washington D.C. public forum during the coming year before the next election. These are not simply medical issues, they are moral and political issues. I will keep you all in my prayers.
Posted by: Mary Podlesak | October 14, 2011 at 05:58 PM
@Janice
I do not deal in garlic futures, nor am I a Alliforce garlic supplements promoter. I am, however, a mother of four children diagnosed with autism spectrum disorders. Natural Health Publications is not quite telling the whole truth regarding raw garlic. When the amino acid alliin and the enzyme allinase, both present in raw garlic, react with one another through crushing or slicing, the allinase acts as a catalyst and transforms the alliin into allicin, a powerful anti-biotic, anti-viral and anti-fungal. The notion that it is necessary to buy a supplement in order to obtain the benefits of allicin is an absurd lie.
The Egyptians swore on a clove of garlic when they took a solemn oath. Egyptian slaves ate garlic as they built the pyramids. The Israelites nibbled it before their escape from Egypt. The Romans took it to strengthen them in battle since it was the herb of Mars, the Roman god of war. European legend says that if a man chews on a garlic bulb during a foot race, no one will be able to get ahead of him. Medicinally, it was used in ancient times to treat high blood pressure and respiratory problems, headaches, bites, parasites, tumors, infections and heart problems. My favorite writer of ancient times, Pliny the elder, swore by garlic for just about any ailment.
A couple of years ago I had a dental operation. I refused a post-operative anti-biotic. I told the dentist I would use garlic slices alone to stem infection. For 3 or 4 days I kept slices of garlic between my gum and the cheek closest to the removed tooth. The denist was amazed at my speedy remarkable recovery. There may not be allicin in garlic, but there is in crushed and sliced garlic.
Posted by: Mary Podlesak | October 14, 2011 at 04:47 PM
Teresa, hugs to you and Megan. You are the most courageous and loving warrior mom I know.
Posted by: Karen McDonough | October 14, 2011 at 04:17 PM
Mary-fresh garlic does not contain allicin, only alliin.
http://www.allicinfacts.com/allicin05a.htm
Garlic can be beneficial but please read the above.
Posted by: Janice | October 14, 2011 at 12:42 PM
By God's good graces, my children with autism were all eventually able to speak, read and write. My elder daughter suffered such tonic clonic seizures associated with the onset of puberty. Anti-seizure medicine was prescribed but because of the absence of long term safety and efficaacy studies of this medication in children I chose to continue to observe her behavior. Although she may have had subclinical seizures, she has continued to progress physically and academically without the medication. Later I discovered the power of garlic, an anti-bacterial, anti-viral, anti-fungal cure all. It can reduce inflammation of the brain. How do know? Because I use it - and especailly raw ginger- on myself as well as on my children. The power of garlic is in the allicin. Cooking kills it. Only raw garlic - and raw ginger - can reduce infections and inflammation. I keep a slice of raw garlic in my mouth almost all the time. When I get arthritic pain, I tape some garlic to the aching joint. When my childeren get colds, especially my youngest, he has to eat three or four raw cloves per day. It stops a cold in it's tracks.
Posted by: Mary Podlesak | October 14, 2011 at 11:44 AM
Thank you, Teresa, for putting you and your daughter's hospital experience out there for all of us to read. Sometimes I wonder if the thing that would help our children reduce their brain inflammation and help put their immune systems back on track is growing on a plant or vegetable somewhere in the jungles of the Amazon. Sometimes I think we are more likely of finding this "thing" to help our children by traveling there to find it ourselves. Conventional medicine has absolutely nothing to offer our children.
It is so sad that six medical professionals wanted to vaccinate Megan, despite her being obviously sick, with an influenza shot containing mercury. What a bunch of zombie practitioners at that hospital. Not an original thought in their heads, just the way Pharma likes them.
I pray that you find something, or multiple things, that help your beautiful daughter Megan achieve a state of wellness. She deserves nothing less.
Posted by: Not an MD | October 14, 2011 at 07:06 AM
My prayers go out to you and your daughter.
Posted by: richard | October 13, 2011 at 11:56 PM
@Julie C... have you checked your daughter for Lyme Disease or Parasites/Worms? Viruses do not respond to antibiotics and it seems you state that she is better when on abx. My son had Lyme disease and I noticed he was always better on abx prior to his DX. Just a little observation...
Posted by: Eva B | October 13, 2011 at 10:25 PM
As I read, I felt so sorry for what your daughter is having to go through...and yet I find myself rooting for her that yes, the neurologists could SEE the abnormality on their precious EEG's! I remember my son being in that same position, but not having seizures while doing the video/EEG, and the psychiatrist coming in to 'explain' pseudoseizures to us. Yes, I was familiar with the phenomenon of pseudoseizures, which are relatively common in women in their teens and twenties. Uh...my SON was age 11. There was nothing about the symptoms I had described that matched the symptoms associated with pseudoseizures. But the EEG was 'normal'...so it must be 'all in his mind'.
A year later, a qEEG (quantitative EEG) came back abnormal. My son, now 12, said, "Finally. I've been telling these doctors for 3 years that there was something wrong in my brain." A 12 year old with Asperger Syndrome knew that...why didn't trained doctors? Much of my confidence in doctors died that day....
Posted by: Vicki Hill | October 13, 2011 at 06:59 PM
I feel like we live in an archaic time when blood letting and don't-wash-your-hands, was the norm. We are in need of some major enlightenment.
The more I learn about the interconnectedness of everything you mention and the vaccines that got us there, the more everything makes sense. How can we look at psychiatry in a vacuum without looking at the whole person on a cellular level?
Posted by: Cynthia Cournoyer | October 13, 2011 at 06:44 PM
teresa, you sound like you lived my life last year. We had a spirling out of control PANDAS child, not child, adult, he is thirty...and all the denials on board. OHSU Portland, supposedly research hospital, denied all the things I suspected what was going on...so much so, that when I had neurological deteriation that was the very minute they shut the doors on their brains. I had a child with full on pandas symptoms, seizures, wetting, OCD, seeking out behaviors, aggitations, aggressions, resisting sleep, and even gagging, stumbling, choreic movements, movements in his face for crying out loud, close to sydehams chorea. When approached..."the team" could not wrap their heads around it and they basically spurned me. I had him tested with Dr Cunningham, and he had raging pandas. He also almost died of heart conduction, and presently has a heart pacemaker. PANDAS strep can attack the heart...duh...so I say, don't trust the white coats. Lean on your own understandings and go for it. Check the nagalase (I think you said you did that, which was elevated), and do all the things you have to do to get notice. And oh, the MRI, I agree with that poster who said they are often not looked over with a fine tooth comb, and may require a SPECT QEEG. My sons basal ganglia is being attacked, and his cerebellum. This is the future for the adult child...as Dr Walsh so much as put it to me, deterioration of autism is possible in the third, fourth, fifth and so on decades of life. Welcome to my future.
Posted by: kathy blanco | October 13, 2011 at 06:23 PM
My now teenaged autistic sons had 24 hr EEGs years ago that showed abnormalities including slowing of the waves (the elder has had an occasional tonic-clonic seizure). The neurologist described them as exhibiting a chronic and progressive inflammatory condition of the brain, once again affirming the importance of inflammation in the etiology of autism.
Posted by: Theodore Van Oosbree | October 13, 2011 at 05:55 PM
This article is heart-breaking. I'm so sorry for your daughter.
The mention of red-headedness and Tourette syndrome made me think of Samuel Johnson. He had tics and TS. He had an extremely awkward gait. He's described as having light gray or light blue eyes and the one portrait I've seen of him without a wig shows him with red hair.
Of course Johnson didn't need any special susceptibility to mercury poisoning. He dosed himself with calomel savagely during adulthood and as a youth was exposed to mercury tanning hides at his family's bookbinding business.
Posted by: Carol | October 13, 2011 at 02:40 PM
The photo of Meg in the hospital bed is heart-wrenching. Teresa, you are a wonderful mother, a top-notch investigator and a skilled writer. Congrats on getting through the hospital assembly line, and thanks for sharing the experience.
Posted by: nhokkanen | October 13, 2011 at 02:18 PM
Hi Teresa. Thank you for your article. So sorry you have to deal with blockheads. My daughter experienced O-C behavior years ago when she was being treated by a doctor, known lovingly by the parents who brought their children to him as the "Cocktail" doctor, for his "skill" at mixing medications to deal with side effects. I weaned her off of the poisons and she has her problems but O-C disorder and bibolar disorder are not in the mix
Posted by: Mfischer | October 13, 2011 at 12:14 PM
Teresa,
My daughter shares so many health and behavioral issues with your daughter as I have shared in the past. One more to make note of is the intolerance of calcium supplements that my daughter also shares. I had read the research that indicates calcium helping with menstrual cycle hormone fluctuations but my daughter always has a negative response no matter the dosage. I too have had to rely on milk-free naturally-calcium-rich foods to try to make sure calcium is available in her diet. But I also know from early hair analysis conducted before we implemented a GF/CF/SF diet that my daughter does not process calcium normally. Back in the day before I had ever heard of the diet when she was drinking loads of milk and eating whole wheat foods her hair analysis revealed abnormally low calcium (and magnesium as well). I also have learned to be very careful about the amount of Vit D I supplement her (low and slow). I suspect her kidneys are damaged from mercury and Vit D isn't being properly converted.
I share your frustation with the many medical professionals who don't have a clue about their own ignorance and prejudices. We have been fortunate at least to have a neurologist who understands that abnormal EEG's can explain behaviorial issues and how hormones can affect that as well and that psych drugs are not the appropriate treatment for them. I have not discussed vaccines with my daughter's neurologist, but that is because I don't think it would change his approach to treating her. I am just thankful that he treats her with respect and compassion and has a more thorough understanding of biology and neurology than most. As bad as her behaviors are I steer clear of psychiatrists too. They have nothing to offer.
My daughter has been home from school for the past two days because I can't send her when her OCD and aggressive behaviors become too much for school. My heart goes out to Meg and you and your other daughter. Please keep us posted.
Posted by: Donna K | October 13, 2011 at 11:35 AM
July 9th my four year old daughter, Sophia, changed dramatically from a happy non verbal beautiful girl with "moderate" autism to what I thought was seizures. We have since learned they are tics along with tourettes, extreme ocd, sensory issues, clinging to me, stimming like crazy, ulcerations in her mouth and unless she is on antibiotic she is gone. Our story is too long and painful to write. We did the VEEG, MRI, mitro blood tests, PANDAS blood test but everything came back normal (I reviewed Dr. Cunningham's information on PANDAS blood test and I disagree with the neurologist saying 25.0 is normal) and it was suggested we start Sophia on anti psychotic medication. I declined. Our pedatrican has been so receptitive but he can't give her penicillin because her medical records show she is allergic to it. For the past month, I've been on a mission to get the medical records to the allergist from the old pedatrican so he can review and determine if she had an allergic reaction from penicillin or a viral reaction from the MMR, Hep B, Dtap, Flu shot, etc. At twelve months of age. It took a threat to file a claim with the Florida Department of Health to finally get the records to the allergist. He has them now and I pray the red hives, fever, vomiting was caused by vaccines not the antibiotic she had that same month for an ear infection. Once that is determined, the medical records can be changed and our pedatrican can give her the penicillin. We can't get in to see the PANDAS expert until December 7th and waiting is so hard when it is obvious she is sick. She has been on azithromycin on and off for two months and when she is on it the symptoms aren't as severe but when she is off of it the hell begins all over again and my heart breaks. In order to give her the antibiotic my husband has to squeeze her mouth open and I take the pill soaked in maple syrup and put it down her throat. They don't make that antibiotic in a shot form. It is torture for our family. You know it is bad when the allergist asks me what vaccines she received if she broke out in hives and or had a high fever. I told him the two horrible red hive outbreaks and the high fever in which she was rushed in an ambulance in the wrong direction on a busy road to the All Childrens Hospital only to be told it is viral and to double up on Tylenol and Motrin. The allergist said listen to me the key word is VIRAL! He stood up shook my hand said I was a wonderful advocate and had done my homework and he was going to help us get in with the PANDAS expert and my job was to get the damn medical records full records from the old peditrican. I kept it together until I got in my car and then started to cry. It was the first time a specialist outside of the autism world validated my belief how Sophia came to be so sick and in a round about way vaccine injured. Hang in there Teresa and hope to see you at NAA conference. My daughter will be in the daycare would love you to meet her along with my husband. Keeping Megan and your family in my daily prayers.
Posted by: Julie Clymer | October 13, 2011 at 11:04 AM
My heart literally hurts for this generation of children . . . and their parents.
Thank you for your amazing articles Teresa. You inspire me with the depth and breadth of your knowledge, courage, and never-failing love. God bless you and your family.
Posted by: Parent | October 13, 2011 at 11:00 AM
Tereasa, I am very sorry your family has had to go through this. When it is all said and done - it is seizures, it is epilepsy. After it was all over,its seizures. Then why did it take so long for the dignosis, and longer still to zero in on the right seizure medicine?
My son has Tourettes too by the way. The psychs told me that years ago when he was 12, but I did not believe them because (there was more going on like seizures for me to care.) My husband, my daughter both have very high ANA levels too - and so the docotors described for them pain killers and ibuprophene. I also think the psychotic episode with my daughter was a seizure. I think she was having seizures just as she was falling asleep. She did have anactually falling down grand mal seizure at work a month later. While we are all so angry with the medical industry (industry is what they are) ignorance about the immune system, - Their ignorance about epiliepsy and seizures may be far worse!
Also, they will lie to you about the results of the MRI.
I was suppose to transfer MRI photos of my son's brain from Ky to Michigan. So I noticed the two white bright spots on it. I ran across an honest neurologist in Michigan that said the white spots might be from my son blurring the image by moving. We had it done again and again I transported the image from the hosptial to the doctor and those white spots were still there, but no longer blurred. He said it was damage probably from past ischemia.
We moved, and again I transported them back down to Kentucky to yet a new neurologist. The new neurologist had another MRI done. Now they have them on the computer, and the computer transferred the image directly to the doctor's office. The new neurologist said he saw nothing, there was nothing, all was fine???? Sure it was - I should have left him when I caught him in that lie, but for once I am glad I let the lie pass. He has been a pretty good neurologist in spite to the lie, and this neurologist doctor did see us through some rough times with seizure medicine changes. But he did lie about that.
This maybe standard procedure to lie about a brain injury????? I guess they figure that telling a parent there really is a brain injury does not really change anything.
Now about psychs: They have their procedures too. They like to listen to our story and write it down on paper. They then give me a copy of it and put the rest in the files. This has been done at least half a dozen times over the years by all kinds of psychs - from those that I pay, to those that are in the school system. I think, they think it is a way of healing a parent - that is to tell the story - have it written down some where as a testiment to what has happened.
I do understand the psychological reasoning of these psychs, that this is the way the mind works and this does sound like it would make a parent feel better. But, it has never helped me because on going seizures is not about me feeling better!
Plus, a piece of paper put in a medical file some where is not going to heal my soul, or help the next parent that notices high temperatures from vaccines and are believe the doctors when they say it is nothing - just keep vaccinating.
Posted by: Benedetta | October 13, 2011 at 10:34 AM
There is no hope for our kids in mainstream medical. It's criminal the way they are treated. Criminal.
Posted by: Kristine | October 13, 2011 at 10:33 AM
Teresa, I hope you sent a copy of your article to each and every medical professional who treated your daughter at the hospital.
The obvious reason would be that then they would have, IN WRITING, a record of everything Megan has been through, including the official diagnoses of vaccine reaction, immune abnormalities, and the ANA test results, and that legally obligates them in ways that the same information in conversation wouldn't.
But the second reason is, no matter how articulate you are in speaking to them, they often can't hear. Perhaps medical professionals develop auditory processing disorders (and maybe there's a vaccine for it ;( ). But having it all there, in black and white in front of them, gives them (even the nutritionist) food for thought. It's unlikely that they will bother to look these things up on their own time, but at least it's possible.
And who knows, maybe a secretary or receptionist will stumble on this information while burying it in the files, and may look it up....
Posted by: Taximom | October 13, 2011 at 10:08 AM
Teresa, my heart aches for you all. It is the bacteria and their hitchhikers the viruses. They cause inflammation and dysregulate the immune system. Very few docs are able to handle this brand new world of devastating chronic illness in our young but there are some. The gateway to transcribing genes are the nuclear cell receptors that have to have the correct molecular fit to allow the signal to cross the membrane and make proteins from the DNA code. Estrogen Receptor affects 26% of our genome according to a recent study by Nasun Hah. She might also have a gene SNP for the estrogen metabolizer CYP1B1. SNPs really aren't the problem though, it is the inherited and accumulated infections. Pathogens mess with us by horizontal gene transfer. They know how to evade the immune system and alter our proteins. Another nuclear receptor, the VDR (Vitamin D Receptor) regulates our immune system which means in particular amounts of 1,25D it sends the signal for gene transcription of over 1000 genes including your own antimicrobials. Many inflammatory conditions (such as these intracellular bacteria) will trigger excess 1,25D to summon the response for antimicrobial transcription but if chronic inflammation occurs, the excess of 1,25D builds and shuts down the receptor. You continue to accumulate infections and they complicate the body's function exponentially with their gene transfering interference. Excess 1,25D will also mess with many other nuclear cell receptors including estrogen, thyroid, cortisol, androgen, adrenal, and glucocorticoid.
Our non-profit is offering CME credits to docs to learn how to manage inflammation and get homeostasis back to normal with our vitally important nuclear receptor signaling. Scientists around the world theorized over 100 years ago that we were symbionts with the bacterial world that were here before us and now technology is starting to identify just how entwined with the environment we are. Over 100 years ago there were scientists who said psyche issues were caused by pathogens. And researchers decades ago who said the same thing about cancer were ridiculed. What we do to the environment will alter us, just as Dan and Mark have said in their polio piece. The bacteria are formidable opponents. Here are the labs to monitor inflammation (BOTH Vit. D metabolites must be checked which is a huge problem for today's docs because as 1,25D rises, the cell tries to lower 25D and that's what is measured typically).
I wish you well in these difficult and dark times. Let's shine the light on the huge microbiome inside us.
25D (calcidiol) normal range 8-15 ng/mL
1,25D (calcitriol) must be frozen normal range 23-37 pg/mL
CBC
CMP
TSH, free T3, T4
liver panel
hsCRP
Sed rate
chronicillnessrecovery.org
Posted by: Kelly | October 13, 2011 at 09:45 AM
Teresa,
And none of the experts gathered in that hospital is interested in what happened to make your child like she is. No none is anxious to prevent other kids from ending up like Megan.
The other day another teacher told me about a third grader with an IQ of 70 because "he had a stroke as a baby." A stroke? Why would a baby have a stroke? No one seemed to know. Just like regressive autism, we'll quietly accept any neurological problem in kids and never ask why.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | October 13, 2011 at 09:33 AM
Teresa, I'm glad her hospital stay is over and that you did educate some of the medical staff. I, too, cannot stop talking when I run into a doctor---about vaccines and all that goes with it. Perhaps if they hear it enough times-- I am always thinking of you and Meg and pray this testing will provide some good information to make changes. Your hard work has not gone un-noticed. You're an amazing mom.
Love to you and Meg, Maurine
Posted by: Maurine Meleck | October 13, 2011 at 08:20 AM
How many parents do not know to look and investigate their child's medical issues? How many parents just look for the magic pill or pills to stop the symptoms? I had a very similar situation in a children's hospital with my teenage son a couple years ago as yours with your Megan. He was ill and not eating and we were there to figure out what was going on. All the specialists were concerned about him being up-to-date on his vaccines. None of them missed asking about that. All were given an extensive and impressive medical history by me about my son. Similar to yours. Describing regression after vaccines, illnesses, and ongoing medical issues. None of those details ended up in his discharge papers. None of them saw any behavioral outbursts while we were there by my son since he was just too sick and weak. But, most were puzzled that he wasn't taking any behavioral medications based on my descriptions of his behaviors.
We've dealt with PANDAS, all kinds of GI problems, allergies, possible headaches, infections etc.... "they" don't seem to get those problems produce the behaviors. You lose them when you describe a scenario where your child becomes aggressive/agitated when they can't go number 2. Once they have moved their bowels they are a much happier camper. Our children don't need Risperdal. Risperdal does nothing to alleviate that problem. Or the frequent ear or sinus infection. How another round of antibiotics has terrible and lasting effects on your child's behaviors.
It's so reassuring to know there are other parents who know their child's issues will not be fixed by a psychiatric med regime. We continue to search for answers hoping to find caring and competent medical professionals who truly want to help our kids and not just drug them and send them on their way.
Teresa, please keep us posted as to how Meg is doing with her new seizure meds. I wish the best for dear Megan. She has been through so much.
Posted by: Andrea | October 13, 2011 at 06:52 AM