Katie Wright: Our Family Vacation was a Disaster
By Katie Wright
Our family vacation was a disaster.
Thanks to Dr. Boris, the autism and allergy king of New York, Christian's myriad allergies are normally under control here in New York City. The special nose spray Boris prescribed for Christian has alleviated the worst of his suffering in New York City. You name it, Christian is allergic to it: gluten, trees, grass, wheat, mold and so on. Because Christian also has a severe case of Inflammatory Bowel Disease, whenever his allergies are triggered, his bowel disease rapidly worsens. As all autism parents of kids like mine know, the immune system and the gastrointestinal system are one.
Christian used to love visiting my parents' home on Nantucket because he can swim in their pool and because we make daily trips to the beach, which he loves. To watch a kid who works so hard 40 hours a week trying to re-learn saying his name have a blast learning to surf is a beautiful sight. What kid deserves a vacation more, right? 
However, unbeknownst to Andreas and me, Nantucket was experiencing record high pollen and ragweed levels. The New York City allergy nose spray was not cutting it on Nantucket. These allergies soon triggered the nightmarish IBD. Whenever Christian ran on the grass, walked around the town, tried to ride a bike, he started screaming, crying, lying on the ground and eventually pounding himself on the stomach.
Thanks to a strict SCD diet, low on nuts, high on coconut, the IBD has been under control. There is no cure for IBD. It is a horribly painful and debilitating disease that came close to ruining his life and made school and therapy all but impossible until his pain was under control. Andreas and I watched our formerly healthy baby regress physically, cognitively and biologically into a screaming miserable, pain racked 2 year old who had 10 messy diarrhea stools a day. After a bowel movement I could not merely clean Christian off with wipes, I had to put him in the shower, or if it was summertime, clean him off outside with the garden hose. Like many parents we tried to contain ourselves as many doctors labeled this problem as "behavioral." I am still trying to understand how a 2 year old forces himself to have diarrhea and what he gets out of it, other than misery.
It was a family vacation. The only vacation we take in a year. My siblings and their children were there as well. It would have been wonderful for Christian to enjoy their company and get to know everyone better. Instead whenever we were outside, poor Christian was screaming, hitting himself, biting his hands until they bleed and having diarrhea. We soon were back to 10 messy stools a day. Parents of kids like Christian know what these screams are like: absolutely heart piercing. Andreas and I had to work over-time trying to attend to Christian, keep him comfortable in an air-conditioned environment with all the air purifiers we could find, while one of us was with his younger brother, trying to allow him to have the vacation experience Christian cannot have. We struggled to explain why his brother is screaming and smearing his bowel movements- again.
My poor shell shocked family hears the screams, the cries, sees the diarrhea, the blood. All attempts at "fun" activities were aborted and everyone felt so sad and helpless. The pain Christian endures because of his bowel disease, a disease we feel triggered his autism, is unbearable. He lies on the floor screaming, biting through the skin on his hand, as sobs wrack his body. As any parent knows, Andreas and I would do anything to alleviate our child's horrendous pain. If only I could have the pain, his disease. If only I could have cancer instead, anything, in exchange for stopping this pain.
We cut our vacation short and returned home early. Christian's health rapidly improved and the IBD was back under control. I had to buy new clothes because so many of the pants and shorts Christian wore on vacation were unsalvageable. The bowel movements reeked of acid and ate through some fabric. I had to throw everything out.
My intention in sharing this horrific story is not to shock this unshockable readership of AoA. Parents of kids like Christian know all about this heartbreak and torment. I am writing this because I want to express my support and validation for all the parents who have felt their child's pain questioned and marginalized by the GI / measles study recently published. To watch your child live with this pain is horrible enough, to see your child's pain dismissed or ignored or beyond human endurance. And we are parents who can endure a lot.
I was so confused to read that Dr. Hornig and Dr. Lipkin claimed that their 38 person study definitively proves "Wakefield wrong." From what I understand the Lipkin and Hornig study utilized the exact same lab that Wakefield used when he discovered that his patients did indeed have the measles in their gut. How does that prove "Wakefield wrong"? That lab is correct on in cases where it does NOT find the measles virus? I admire Dr. Honig and Dr. Lipkin and know they have made great sacrifices in pursuing autism research. They have also received tremendous community support from grateful parents, who I believe have the right to expect more from this team.
Rather than framing the study's conclusions as definitive proof of the unspeakable GI disease afflicting so many autistic children, the talking points focused exclusively on "Wakefield is wrong!" and "no measles in the guts of ASD kids!" and how this is great news for the MMR! Wow, I can hardly wait to tell Christian all this good news! He will be so thrilled!
There were 38 children in the study, all were vaccinated, only 5 had the type of regressive autism my son has, there was no control group and all of the gut tissue was collected 18-24 months post MMR. They expect us to believe that is a definitive study? I say it is only a start and a disappointing one at that. While the CDC and the study's authors celebrate their results, hundreds of millions of American autistic children endured unbearable pain today and they will endure it tomorrow and the day after that. I guess that fact illuminates the key difference in these two studies. One study is about trying to understand what is wrong with so many sick, regressive autistic kids and the other is about providing alibis.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
Katie, you described our vacation 100%.
Posted by: SKrishna | April 02, 2013 at 11:08 AM
I'm deeply sorry that you had a stinky (pun intended) vacation! I hope things would be for the better when you plan your next trip! Needless to say, I'm also autistic myself too!
Posted by: whizkidforte | February 26, 2009 at 09:21 PM
Katie, you must have thought twice or thrice about whether to even write this article. I can see that it has meant so much to so many parents, and I see your writing as a little arrow that flies out into the universe and perchance it hits a target. I found myself wracking my brain for ideas for the suffering kids and planning to send your articles and comments to a young garstrenterolgist in UK. It could open his eyes I hope.
Posted by: Cherry Sperlin Misra | September 18, 2008 at 03:51 PM
Hi Katie!
I'm so sorry to hear about your disaster. :o(
I'm thinking of you guys~
xo
-michele
Posted by: michele i. | September 18, 2008 at 01:18 PM
Kay:
It's not only doctors who refuse to believe there is any connection. Vinnie Strully from the New England Center For Children is as bad or worse than some of these doctors. He refuses children whose parents believe in any sort of vaccine connection or who are implementing any biomedical and I have heard everyone there is really quite nasty to any parent who just doesn't follow their ways and beliefs. It is sad that people like this are permitted to profit from the kids. How can this happen? I say write to the CEO of NECC since they are bigger offenders than even some of the doctors. A place like NECC is making around $90,000-$250,000 (residential) per child. It sickens me that places like this can make this kind of money and demean parents and worsen children, in my opinion.
Katie, keep up the great work and advocacy. Your testimonials really help so many not to feel so alone.
Posted by: Gail | September 15, 2008 at 09:29 AM
It still is astonishing to me that Dr's refuse to believe that there is to cause and affect relationship between nutrition and the gut and the brain. Don't they teach them anything in medical school except how to hand out drugs?? Geesh. Us parents need to STAND up and not allow children to be treated like lab rats for their drug companies.
I'm so discusted I can't even tell you.
Posted by: kay | September 14, 2008 at 11:28 PM
we have different bowel issues at our house. constipation is the game. we tried to get in with dr. buie...hate to tell you he isn't taking new patients! so he told us someone else to see (not him his office) and he did nothing for us. it wasn't until we started seeing our dandocthat we have seen normal stools. we'll see what she thinks at our check up next week! oh and dr.bauman has a waiting list and does not take insurence.
Posted by: jill | September 14, 2008 at 03:55 AM
Parents of kids with GI problems have probably tried this, but if not, it is worth a short: Pectin - I recall my daughter, now a neonatologist, trying it at a hospital in Chicago , years ago. I think they tried it for tiny babies who had diarrhea. At first they thought that it was not helping, but then they realised that it was . It had some effect on absorption of water and nutrients. Sorry I dont recall all details now.
Posted by: Cherry Sperlin Misra | September 13, 2008 at 02:52 PM
Steve,
You may want to visit Dr. Boris. I googled. It seems he is Dr.Boris Marvin in Woodbury, NY Phone 516-921-3456 The doctor is allergist, immunologist, DAN Dr.
Posted by: YG | September 12, 2008 at 11:36 PM
Katie- Tough sledding. Sorry to hear it. Many years ago, we noticed a spike in stims (not as severe as your situation) that coincided with pollen, mold, etc blooms. We asked our neuro and he said it happened like clockwork in his practice. I think a lot of our kids, especially in the regressive subtype, are hypersensitive to the stimulation of the immune system by insult, natural or otherwise. This is where I want research bucks directed. Pardo, et al are on to something at Hopkins with the inflammation angle. Scientists of all disciplines in medicine are seeing inflammation as a critical area of research. Singh and others were quite early to the table on this. I urge the AoA family to push hard in this direction. I'm agnostic on where the insult is coming from. I think it could be from a lot of sources. I'm leaning toward the notion that when insulted, our kids have similar reactions. Not identical, but similar.
Posted by: Dadvocate | September 12, 2008 at 11:07 PM
Katie,
I want you to know that I cried for an hour.
Not after reading your great post just now, but last night, after living it.
Allergies in my son are causing him to rip apart our house apart right now. I can't even begin to explain what that means for the the health of my son without breaking out in tears.
You mean so much to me in bringing out the issue of allergy reactions / behavioral results that I smile as I cry.
Behavior from pain means wrists smashed into windows - means kids who bite out stitches and then deal with open sores on wrist they WILL NOT allow bandages on.
On kids that continue to hit the walls in pain even with infected puss infected wounds and no way for us to alleviate their pain....
Yah, I cried. Not for his pain, for mine.
Because I know that if the people who control all the research money have their way, my son will just die and go away, and they can focus on all the autistic kids who don't have life threatening health issues.
Because I know that I will have to let my son go soon - to those who will take care of him with less concern after I am old and gray.
Wish I could have a better outlook, but after this week, NO WAY.
I know I will smile tommorrow - I HAVE TO.
Tim ;o) - ??????
Posted by: Tim Kasemodel | September 12, 2008 at 08:59 PM
Having just begun reading Age of Autism, I am amazed at the knowledge, insight and intellect of the folks posting their thoughts and stories. I just read the Hornig/Lipkin study, and truly the only way that study could concretely say that Wakefield was wrong is to examine the exact same subjects and try to replicate the study. Every single child with ASD is different, which is why these studies, with such small subject pools, will not be able to be replicated. Hornig/Lipkin did not discount that there are measles virus in the gut. They said they aren't getting a connection between the virus being in the gut and GI/autism characteristics. Well, yeah, in THOSE subjects. There is no way a qualitative study with fewer than 50 subjects can be generalizable. I know that with just one course in research methods. Scientists and doctors saying this study got it "exactly right" should be ashamed of themselves. All they got exactly right is that there is no connection in those particular subjects. What about my three kids?
Cynthia
Posted by: Cynthia | September 12, 2008 at 10:49 AM
Katie,
I read your so sad and real experience about 18 hours ago. I would have been the first to comment this morning at 5:30 but as I finished it, my Meg jumped out of bed in pain and crying. This pain had been lessened by doing the biofilm protocol but has been creeping back in recent months and we (DAN! doctor and I) attributed it to histamine levels. Did some research on that in early summer--wanted to share, fwiw.
Hugs to you and your beautiful boy. This makes us all tougher but never numb to the emotional pain. It also makes us fight all the harder for them and the future children who need our voice too. Lastly, this MMR study should not close the door but instead slam it open. Many are trying to lock that door but we will not let that happen. Thanks again.
J Neurosci Res. 1997 Apr 1;48(1):71-81. Links
Mercury-stimulated histamine uptake and binding in cultured astroglial and cerebral endothelial cells.
Huszti Z, Madarász E, Schlett K, Joó F, Szabó A, Deli M.Department of Pharmacodynamics, Semmelweis University of Medicine, Budapest, Hungary.The effects of mercuric compounds on histamine uptake and binding to uptake carrier in cultured rat astroglial and cerebral endothelial cells were investigated. Experimental results showed that mercuric compounds produced strong stimulation of glial and cerebroendothelial histamine uptake over a concentration range of 25-500 microM. The stimulated histamine uptake showed characteristics similar to those described for basal uptake in terms of sensitivity to inhibitory agents (e.g., impromidine) and the requirement of external Na+. Mercury-induced stimulation of histamine uptake could be abolished by sulfhydryl agents, dithiotreitol and cysteamine, indicating a complete reversal of, and not simply a protection from, the action of mercury. Basal and stimulated uptake of histamine represent bindings to uptake carrier with high and closely equal affinities but markedly higher capacities for stimulated uptake. In controls, the mean value of apparent KD (derived from saturation kinetics at equilibrium) was obtained as 26.7 +/- 3.9 nM for astroglial cells; and 100 microM mercuric chloride did not modify it significantly. In contrast, the apparent Bmax values differed markedly; found as 0.63 +/- 0.10 pmol/mg protein and 3.32 +/- 0.47 pmol/mg protein in the absence and the presence of 100 microM mercuric chloride respectively. For the cerebral endothelial cell line, RBE4, the apparent KD was calculated as 22.5 +/- 3.2 nM and was comparable to that obtained for astroglial cells in control and mercury-stimulated conditions. The apparent Bmax values were less, but markedly different in these conditions, obtained as 0.18 +/- 0.03 pmol/mg protein and 1.2 +/- 0.36 pmol/mg protein in the absence and the presence of mercuric ion respectively. In both cells, impromidine, the potent inhibitor of basal and stimulated histamine uptake, decreased the enhanced capacities of histamine binding (Bmax) (without affecting the dissociation constant, KD) in micromolar range, comparable to its inhibiting potency. Results confirmed that mercuric ion might enhance the binding capacity of histamine carrier and protein sulfhydryls might play a role in this effect. The observed stimulations by mercuric compounds suggest close similarities in the mechanism of histamine uptake and the structure of histamine carrier in astroglial and cerebral endothelial cells.PMID: 9086183 [PubMed - indexed for MEDLINE]
Pharmacol Toxicol. 1995 Jun;76(6):339-42. Links
Effects of lead and mercury on histamine uptake by glial and endothelial cells.
Huszti Z, Balogh I.Department of Pharmacodynamics, Semmelweis University of Medicine, Budapest, Hungary.The effects of lead and mercury on [3H]-histamine uptake by cultured astroglial and endothelial cells of rat brain were studied. Experimental data showed that both metal ions inhibited the uptake in both cell types of concentrations as low as 1-10 microM. The effects were consistent with non/competitive inhibitions. With either lead or mercury exposure, the inhibition of the uptake was greater in astroglial than in cerebral endothelial cells. Contrary to the above findings, 100 microM of mercuric chloride produced stimulation of histamine uptake and this stimulation was much more pronounced in cultured cerebral endothelial cells than in astroglial cells. Inhibition of [3H]-histamine uptake by lead acetate and mercuric chloride was considered to be association with a loss of the transmembrane Na+ and/or K+ gradient while stimulation of the uptake by high concentration of mercury might be related to a direct effect on histamine transporter. It is noteworthy, that cultured astroglial cells, derived from neonatal rat brain, are much more sensitive to the toxic effects of these heavy metal ions than cultured endothelial cells derived from the brain capillaries of the same species of animals.PMID: 7479572 [PubMed - indexed for MEDLINE]
Histamine: mercurial messenger in the gut
P. K. Rangachari
This review considers the possibility that histamine functions as a cellular messenger in the gastrointestinal tract. Any biological messenger must be produced, received, and responded to, and must have its actions quickly terminated. Histamine is no exception. Histamine synthesis from L-histidine occurs in enterochromaffin-like cells, mucosal mast cells, and nerves. Histamine release occurs through both antibody-dependent and antibody-independent mechanisms. Released histamine interacts with a variety of cellular targets (epithelial cells, smooth muscle cells, endothelial cells, neurons, and a variety of immunocompetent cells). Occupation of H1, H2, and H3 receptors, defined by pharmacological agents, is transduced by different intracellular messengers (Ca2+, cyclic nucleotides) into diverse effects such as secretion, contraction, or modulation of other secretagogues. The responses to histamine are terminated by at least three different mechanisms: metabolic transformation by the actions of methyltransferase and diamine oxidase, desensitization at the receptor level, and cellular uptake. In addition to its well-documented effects as a mediator of inflammatory processes, histamine may also function as a neuro- and immunoregulator. While a significant pathophysiological role for histamine has been realized since the earliest description of its effects, the availability of newer pharmacological agents has permitted a finer dissection of its "physiological" effects and raised the possibility of multiple roles for histamine. Gut. Published Online First: 18 November 2005. doi:10.1136/gut.2004.061762
Selective expression of histamine receptors H1R, H2R and H4R, but not H3R, in the human intestinal tract
Leif E Sander 1, Axel Lorentz 1, Gernot Sellge 1, Moise Coeffier 2, Michael Neipp 1, Tibor Veres 3, Thomas Frieling 4, Peter N Meier 1, Michael P Manns 1 and Stephan C Bischoff 1* 1 Medical School of Hannover, Germany
2 University of Rouen, France
3 Fraunhofer Institute of Toxicology and Experimental Medicine, Hannover, Germany
4 Department of Internal Medicine (Medizinische Klink II), Klinikum Krefeld, Germany
* To whom correspondence should be addressed. E-mail: [email protected] . Accepted 30 July 2005
Abstract
Histamine is known as a regulator of gastrointestinal (GI) functions such as gastric acid production, intestinal motility and mucosal ion secretion. Most of this knowledge was obtained from animal studies. In contrast, in humans, expression and distribution of histamine receptors (HR) within the GI tract is unclear. We therefore analysed HR expression in human GI tissue specimens by quantitative RT PCR and immunostaining and found that H1R, H2R and H4R mRNA were expressed throughout the GI tract, while H3R mRNA was absent. No significant differences in distribution of HR were found between different anatomical sites (duodenum, ileum, colon, sigma, rectum). Immunostaining of neurons and nerve fibres revealed that H3R is absent in the human enteric nervous system (ENS); however, H1R and H2R were found on ganglion cells of the myenteric plexus. Epithelial cells also expressed H1R, H2R and, to some extent, H4R. Intestinal fibroblasts exclusively expressed H1R, while the muscular layers of human intestine stained positive for both H1R and H2R. Immune cells expressed mRNA and protein for H1R, H2R, and low levels of H4R. Analysis of endoscopic biopsies from patients with food allergy and irritable bowel syndrome revealed significantly elevated H1R and H2R mRNA levels compared to controls. In conclusion, we demonstrate that H1R, H2R and, to some extent, H4R are expressed in the human GI tract, while H3R is absent, and we found that HR expression is altered in patients with GI diseases.
--------------------------------------------------------------------------------
Keywords: enteric nervous system, food allergy, histamine receptor, irritable bowel syndrome
Posted by: Teresa | September 12, 2008 at 01:09 AM
Thank You Katie for taking the time and making the effort to share your story with us. It means a lot to our community and hopefully some day to the larger medical community as well.
Thank You,
Chris
Posted by: Chris | September 11, 2008 at 11:44 PM
I can't add to what has already been said. I just wanted to let Katie know there's another mom out there in agreement with her and supports her in prayer. Fight the Good Fight!
Posted by: Deb in IL | September 11, 2008 at 09:58 PM
Hugs.
This is so incredibly sad.
More so that researchers would sweep under the carpet.
What's up with doctors not alarmed by severe bowel symptoms?????
Posted by: KarenAtlanta | September 11, 2008 at 08:23 PM
Katie,
Sorry you had such a heartbreaking vacation, but I thank you for sharing. It only confirms what I have believed about both my daughters - one has autism, GI problems (chronic diarrhea until we went GFCF), and another who has severe allergies. It's all related.
Glad that Christian is feeling better.
Posted by: rhemashope | September 11, 2008 at 02:55 PM
I, too, find it reprehensible that some doctors won't treat gastro problems in autistic kids. But it's worth pointing out that Dr. Hornig and Dr. Lipkin are not the sole authors of this study. Two of the other authors, Timothy Buie and Margaret Bauman, are leaders in dealing with gi problems in autistic kids as a medical problem. It seems very unlikely to me that Dr. Buie and Dr. Bauman are confusing medical problems with a psychiatric diagnosis.
Posted by: Anne | September 11, 2008 at 01:38 PM
"They expect us to believe that is a definitive study?"
I am so sorry for your son and your family. Every time we get bad science for from the "health community" I am reminded of how important it is to keep exposing these frauds and the phony PR.
Richard Feynman, a Nobel Prize winner in Physics, investigated the Challenger Shuttle disaster that happened on January 28, 1986 and concluded back then that “It would appear that, for whatever purpose, be it for internal or external consumption, the management of NASA exaggerates the reliability of its product, to the point of fantasy … For a successful technology, reality must take precedence over public relations, for nature cannot be fooled.”
See http://nobelprize.org/nobel_prizes/physics/laureates/1965/feynman-bio.html and
http://science.ksc.nasa.gov/shuttle/missions/51-l/docs/rogers-commission/Appendix-F.txt
Again we have “exaggeration,” “fantasy,” and “public relations taking precedence over reality” in our federal government’s handling of the issue of vaccine injuries. The science is not clear and vaccinations are not proven safe. And this time when nature is not fooled there are three children every hour getting Autism.
I pray for your family.
Posted by: sdtech | September 11, 2008 at 01:31 PM
Hi, Katie. I stopped breathing as I read your post. I bathed each of my babies in a specially-designated sink after every single bowel movement, day and night, for many, many months, until they no longer fit in the sink. And then it was the bathtub with a special handheld shower attachment. I remember, in that haze of misery, being numbly grateful for that damn shower attachment. It's difficult to find comfort in shared company when your children are experiencing sheer misery. But I just wanted you to know that I was really moved by your piece. And we will keep fighting. Louise
Posted by: Louise Kuo Habakus | September 11, 2008 at 01:27 PM
I'm afraid we are vacation impaired at my house these days. My son just started in a new classroom, his teacher brought him out to me at the end of day 1 in his "back up" clothes, not the first day of school outfit I chose. She had a look of horror on her face, "he had some kind of explosion in his diaper!" I said "yeah, we're working on that". I feel terrible that she will be dealing with this, but I really feel awful for him. I have never talked about poop as much in my life as I have since my son was diagnosed with autism. Thank you Katie for all that you do for all of us on this journey. You are wonderful.Alison MacNeil
Posted by: alison macNeil | September 11, 2008 at 11:33 AM
Katie,
I'm so sorry that Christian had such a horrible time on vacation. ((HUGS)) to you, Christian, and the rest of your family.
I do want to thank you for writing this article. My 10 yr. old son suffers the same bowel disease and its heartbreaking for us to watch him in pain. We had been making strides with the treatment plan Dr. Krigsman has him on but within the past 2 weeks have had a setback and I've been going over his diet diary up and down trying to figure out why. Guess what? The ragweed and mold counts have been through the roof here. While my husband, younger son, and myself have had the typical allergy symptoms my son with ASD has not been affected, or so it seemed. I think you may have found the reason for his setback as well. Now what to do to help him get through this heavy allergen season?
Thank you for all you do, Katie, you are a fantastic mother and an inspiration to me and many others.
Posted by: Kecia | September 11, 2008 at 10:54 AM
Hey guys, I am so sorry to hear this kind of story again and again. Katie, I just want to say we all support your family and know just how hard "vacations" are for our families.
I want anyone out there whose child is still experiencing motility issues to ask their doc about bethanechol. It has *finally* made my son's stools normal (he's still autistic, but hey, one thing at a time?)
Bethanechol helps digestion by regulating motility (it works on muscarinic receptors and it is used in bladder control disorders because of it's effect on smooth muscle tissue), but it also helps the pancreas release bicarbonate (to neutralize stomach acid) and digestive enzymes. Lots of these little guys (and gals) aren't getting the right neurochemical signals from the brain for the gut to work b/c the nervous system is skewed toward "fight or flight" stress instead of "rest and digest". My thought is that this is a big part in the degradation of the gastro tissue and tract, so fixing over time (it takes a long time for it to heal) should in theory help allergies too.
It's available in generic form so it's cheap. Ask your dan doc. We've only ever had normal stools since our son's regression 3.5 yrs ago when he's on bethanechol.
Posted by: Tracy Stewart | September 11, 2008 at 10:51 AM
Katie, we parents may be unshockable but we're not beyond tears when reading stories like Christian's. The details of his suffering should be read by every doctor in the AAP and AMA who blithely dismisses the vaccine/autism link. This is the reality. This is why we parents persist in speaking out.
Is it stomach acid that's pouring unbuffered through his intestines? I don't doubt that you had to throw away his soiled clothes. Years ago I left my sister's wedding dance with my "Little Feces Boy" so I could shower him off, but it was such a mess that we never went back to the festivities.
Luckky for my son, his loose stools "only" lasted a year. We also discovered that for him, chlorine from swimming pools was a mind-altering drug. And swallowing it was probably killing off his beneficial intestinal bacteria. We use Baquacil in our backyard pool nowadays.
Posted by: nhokkanen | September 11, 2008 at 10:34 AM
Katie,
I'm so sorry. It breaks my heart that so many "normal" things, like vacations, have been stolen from our families.
The conclusions being spun on this MMR study are unbelievable, and I'm shocked that the authors are not only allowing it, but agreeing with it.
How can anyone claim that this study completely exonerates the MMR? What boggles my mind the most is that the media is completely overlooking the fact that 2 of these kids were indeed found to have MV in their guts, one with autism, one without. Of the 13 "control" kids who had GI disease, but did not have autism, one tested positive. So that means 8% of the control kids has live measles virus in his intestinal tissue.
Taking autism right out of the picture, the big question this study raises is how many sick kids out there are suffering from horrible GI disease and pain thanks to the MMR vaccine?
Posted by: Wendy Fournier | September 11, 2008 at 10:21 AM
Can Katie or anyone else explain this nasal spray that Dr. Boris uses?
Posted by: Steve | September 11, 2008 at 10:08 AM
Thank you for this article. It has given me some ideas on how to help my son who has been having GI problems, not nearly as severe, for the last month. I took my child to 3 doctors, ones covered by insurance, who did nothing. I think at least in part because I told them he had autism and once they have that dx code they stop looking. With the 4th doctor I did not say the A word and she at least ran some labs. The one thing that showed up was high eosinophils which after your article has me wondering about the allegy - - GI connection. Something to discuss with our DAN doctor when we can go back.
Posted by: L Land | September 11, 2008 at 09:19 AM
Whenever I hear stories about the concomitant suffering of children with autism, I'm astonished by the failure of the medical community to be alarmed. Why isn't the AAP addressing chronic bowel disease in our children? Why is there national concern over 131 cases of measles in the US, but not over this?
Anne Dachel
Media editor
Posted by: Anne Dachel | September 11, 2008 at 09:14 AM
Thank you for sharing Katie. I'm sorry Christian is hurting so badly and how it was impossible to escape his pain even to enjoy a family trip to Nantucket.
I was tensing up just reading about how things unfolded on your trip. Oh the stress, boy I've been there- too many times to count. I understand the helpless feeling all too well.
We saw Dr. Boris when my son was 8. That allergy spray did make quite a difference. Then we had to stop getting it because my husband lost his job and Dr. Boris didn't take Blue Cross and Blue Shield, our new insurance (because BC/BS has f*cked with him so much in NY for treating kids like ours they either won't or can't submit bills to them). We eventually had to stop getting the spray altogether because on top of all the other special diet/supplement/therapies/copays we just couldn't swing it.
My son had (has) significant bowel issues especially related to his allergies. Except he has motility issues. When his environmental and food allergies are at their worst (usually Spring early summer) he stops going to the bathroom. He's went up to 2 and 1/2 weeks without a bowel movement and he was miserable. He couldn't walk his bowels were so full. He was all hunched over and twisted up around his waist. They just stop moving. We would have to take him to the hospital and have a procedure done to help him get going. Kind of like an enema, but a dye was injected into him. The procedure is meant to be used as a diagnostic tool but we duped our local doctor into thinking that's what we wanted it for to check for blockages just to hopefully get him some relief. Our dan! in another state told us this was something that he had advised for other kids. Usually it worked and got things moving, but one time it didn't. God, was he sick. Full of poop and dye and preps like OTC enemas, and stool softeners, and laxatives.
Anyways, we've always wanted to have him see Dr. Krigsman or Buie or someone but taking another trip to another Dr. somewhere in another part of the country wasn't in the budget. So, we've used a lot of bowel preps through the years and suffered through a lot of those scenes that you described on Nantucket.
I want to thank you for sharing and being the advocate you are Katie. You could so easily hide your problems and pain away from the world because let's face it- you can afford to. But everytime you write something as poignant as you have here- I have to wonder what your parents can possibly think or say to you as all hell is breaking loose with Christian? They (their organization) holds these Bull sh*t studies up to the world as proof that vaccines (in this case the MMR) doesn't cause autism. Yet, they see their precious beautiful grandson suffering so horribly. Do they really think those studies are worth the paper they are printed on?
I don't suspect you'll respond- it's really none of my business or anyone else's for that matter. But, I just don't get them.
What do they think is wrong with Christian and all the other "autism" kids who have the same health problems?
A mystery? A coincidence? What?
Posted by: Andrea | September 11, 2008 at 08:52 AM
Oh, Katie. How I pray for your beautiful son's recovery from his horrific bowel disease. I hope that something is found, and soon, that can end his suffering and pain and cure him in the process. I also pray for the return of his cognitive skills. Thank you for sharing this painful experience. There is way too much press about the "gifts" that children with autism have, and far too few articles about the real down and dirty ugliness of the "autism experience" for so many of our children.
Posted by: Gayle | September 11, 2008 at 07:25 AM
Katie,
Great piece, as usual. As the mother of a child who just spent some time with Dr. Krigsman and his team at Thoughtful House (I see improvements already and the treatments started two weeks ago), I couldn't agree more with everything you've said.
As far as the allergies, I have a tip I think you'll be excited about: Next time you're taking Christian somewhere (even out your front door), go to pollen.com and enter the zip code of where he will be going or where he is - it is an invaluable resource for parents of children with allergies!
Posted by: Jeanne | September 11, 2008 at 07:10 AM
(((((((((((Christian))))))))))))))))
God Katie, I'm so thankful you share your life with us. You have a heartfelt, sincere way of pointing out the truth which angers me as well to hear it all dismissed all the time. 135 cases of measles blah blah blah ... at least they get over it! Where's the outrage on the illness in this generation of kids? I had no idea Christian suffered so horribly. God bless his little body and hopefully you'll continue to regain the health he was born with. Oh if we could only turn back time a few years right?
Posted by: Kathy | September 11, 2008 at 07:00 AM