Hives And A Skin Rash Nightmare...
Incredibly... A Reaction To The Cod Liver Oil From A Bottle
I Had Previously Used So Often!!!
Night of August 16th and early morning of August 17th, 2002... a very stressful time - the most stressful for us as a family in a long time. I encourage all parents to carefully read this section.
I had no idea what I was dealing with at the time our family went through this, but looking back, I now knew this to have been a serious allergic reaction.
We had been very, very fortunate that Zachary turned out ok.
If a reaction such as this happened to any child, autistic or not, I urged you to seek medical advice right away - as such reactions could, potentially, be life-threatening.
Zachary had been fine all day. In the morning, I had taken him to the park for a walk. While at the park, Zachary had picked up a few small flowers... one that looked almost like a purple thistle type flower... just very very low to the ground... it grew about three inches from the ground. We met up with a friend and walked for about 1/2 hour before returning to our car. The rest of the day was uneventful. I mowed the grass as Zachary played outside in our back yard... something we had done on numerous occasions. When he came in, Zachary was given a bath... something we always did when he came in from playing outside. He then ate some turkey for supper... made exactly as it had been made in the past on so many occasions... I simply put the turkey in a little water - nothing else - and throw it in the oven. When ready, I add a little sea salt and organic black pepper and Zachary eats it that way just fine. He played on the computer doing math exercises for about one hour and then watched a video. Before we knew it, it was time for bed.
Zachary brushed his teeth (same little bit of toothpaste - I use less than 1/2 a pea in terms of quantity) and proceeded to do a "big boy pee pee" before he went to bed. As he stood in front of the toilet, going to the bathroom, I rubbed cod liver oil on his back... something I had put on him on numerous occasions in the past just prior to putting him to bed. This particular cod liver oil, I had purchased in a health food store... but, at the time I purchased the bottle, I had not confirmed whether or not this particular brand was manufactured by a company that tested for heavy metal content (i.e., mercury that may have been in the cod liver). The bottle wasn't that big and I thought I could simply finish it... the fact that I had purchased it at a health food store gave me a false sense of security in that I thought, "surely, it must be ok if it was in a health food store". I had planned on buying the Carlson brand cod liver oil ...once this small bottle was done. Carlson's was a brand many parents of the autistic said they used on parent discussion boards. I had not seen, however, whether or not this particular brand was tested for heavy metals... again, I simply assumed that because so many parents used it... that it was. First lesson - don't assume anything! I'm not saying Carlson's isn't tested... I still don't know either way... but, I did assume the brand I did have was ok simply because I purchased it from a health food store... it had always seemed to be just fine in the past. This particular bottle had 150 ml (1 teaspoon = 5 ml). I had used about half the bottle already.
Well, within 10 minutes of putting the cod liver oil on Zachary's back, shoulders, stomach and arms and rubbing it down his legs a little to "clean the oil from my hands" as I finished rubbing it on him, something happened. I had gone into another room to put away the cod liver oil. When I returned to the bathroom to check on Zachary, I noticed his ears were very red. I had not noticed that earlier in the day... but simply thought perhaps he had a little too much sun and that he had a slight sunburn on his ears. By now, Zachary's ears had turned very red - he had been taking his hands, placing one over each ear and then started rubbing them furiously. Within less than a minute, both ears were very very hot from the rubbing... and very very red. Since I had just noticed the redness a few seconds earlier, I still thought it may have been due to a sunburn on his ears. Fred and I had always been very careful when it came to sun exposure... for both our children and for us, even a little redness from the sun was considered too much. Thinking Zachary may indeed have had a little too much sun, I decided to try putting a little Noxzema on his ears to see if that would help. After I did that, Zachary just kept rubbing his ears... only now, he was also spreading traces of the Noxzema all over his skin too. At the time, I didn't think much of it. I tried to put Zachary to bed, but he was very restless... he didn't fall asleep until almost midnight. Fred was working on the computer. I had both kids in bed with me.
Zachary was particularly fond of backrubs... but this night, even moreso. It was not uncommon for him to lay down and say: "backrub mom", and indeed, he had done so on this occasion too. I gave him a small backrub. Tired, I finally said: "all done". Zachary then rolled over to his sister and said: "backrub Anika". Anika was always good about helping her brother in any way she could. She had truly been a blessing throughout our entire journey with autism. Kindly, Anika proceeded to also give Zachary a backrub. When she had had enough, she too said: "all done". Zachary then rolled over to me again and said: "backrub mom"... I thought I had just spoiled him on "backrubs"... I rubbed him a little more and then said: "ok... all done, get to sleep". Again, Zachary rolled over to Anika for yet another "backrub". By now, Anika was exhausted... she rubbed him a little and then said: "all done". Again, Zachary rolled over to me and said: "backrub mom". This time, I simply said: "no, time for sleeping". To that he replied: "scratch mom" as he lifted his shirt and presented me with his back. I scratched him a little and said: "all done". Of course, he then rolled over to Anika and said: "scratch Anika"... and again, she kindly obliged but soon said: "all done". Anika and I had been joking about how we had absolutely spoiled Zachary when it came to backrubs. Well, as with so many other things I have found in dealing with autism... when you find yourself laughing about something... like your child's future job because he is fascinated with a particular activity... take a second look... what you are joking about may indeed be no joking matter at all. Again, this had been so true in this particular situation! Zachary finally fell asleep around midnight.
At 4:30 am, I awoke to again, a restless Zachary. When Fred came to bed, he moved both kids into their own beds as he had done on so many occasions. For a few months now, Zachary and Anika slept in their own beds. In the past, I had always allowed them to sleep together, but I had felt the time had come to put them in separate beds... although still in the same room to continue to help Zachary with socialization and overall bonding issues (although he already truly adored Anika). The simple fact was, they still both truly enjoyed at least sleeping in the same room. I had planned on getting up at 5:00 am to work on the collation of my materials to make them available as paper copies... so, I figured I would simply go hug Zachary for a little while and then get up.
As soon as Zachary noticed I was laying next to him... again, he lifted his shirt and said: "backrub mom". I proceeded to rub his back. This time, however, I noticed small bumps on the surface of his skin. I continued to rub his skin... rubbing his arms, his legs, his shoulders and his belly also. The more my hands moved over his skin, the more I noticed that, overall, his skin appeared bumpier than normal. I got up, turned on the hallway light and decided to have Zachary come into the hallway. I noticed Zachary had more difficulty walking than usual. At first I thought that was simply due to the fact that he was getting up so early... but, as the day went on, I saw that this issue with motor skills remained throughout most of the day.
When I lifted his shirt and lowered his pajama bottoms just after getting him up, I noticed bumps and redness in many areas on his skin. This greatly concerned me. Within minutes, I noticed more and more... and bumps that actually looked like blisters - just that they have no liquid in them - ... some as big/long as an inch or more in length and up to a half inch in width. Zachary did not have a temperature but the rash surfaces did seem a little warmer than other areas of the skin where the rash was not as bad or had not yet affected. The most affected areas of the skin seemed the warmest. Needless to say, I soon became very very worried... what was this?
By this time, I had awakened Fred also. Hearing all the rumblings and concern with Zachary, it was also no time before Anika was up too. Parents and other family members in families with autistic children tend to become light sleepers when it comes to always "listening for the autistic child". I asked Fred to log onto my web site and to pull up the link on skin rashes. Another lesson... in times of stress, text descriptions aren't that helpful... I needed pictures. I found a site that provided pictures of what I thought I was seeing... a site I added under my section on skin rashes. Hives... it looked like Zachary had hives... and they were getting worse with each passing minute.
Fred and I had purchased oatmeal bath tablets a long time ago and had never used them. I knew there was debate as to whether or not oatmeal was ok for the autistic...whether or not it indeed had gluten... I, personally, had never given oatmeal to Zachary since starting his cfgf diet over 2 years ago. The hives were so bad... and he was scratching so much that Fred and I decided we would take a chance with the oatmeal... an oatmeal bath it would be. We put Zachary into the tub, put in 1 1/2 tablets of oatmeal, placed 4 large folded towels in the bathtub, under Zachary's head. I put the towels under his head for a couple of reasons... I wanted Zachary to be able to lie down on his back in the bathtub without having water go into his ears and I wanted to help support his breathing function. I wasn't 100% sure as to what this was and so I wanted to be as careful as possible.
As Zachary lay in the bathtub, I noticed just how bad he was. His eyes were very red and very swollen... the redness surrounding them moving up into his forehead area. His chest had a red rash pattern that went completely around the lung area, down the sternum and across the diaphragm. On the area of the sternum, there was a large blister like formation. The redness also appeared on the liver and stomach areas. Particularly red and bumpy were the armpits and buttock area. By now, small blisters (without liquid in them) had formed across his entire diaphragm and on the entire back area...the areas where I had rubbed the most cod liver oil appeared to be the worse.
My father was a doctor and I always called him whenever I had concerns with Zachary as he always provided valuable insights in terms of what to do in such situations. Fred had also read somewhere that tea was also supposed to help with skin rashes... showing me a few skin products with "various teas" in the ingredient list. He went to get a couple of tea bags and threw them in the bathwater too. We decided to leave Zachary in the bath, constantly moving water over his body, for a period of about 40 minutes. As stressful as this situation was for me, I wanted to document this for myself and for other parents...I took out my camera and as Zachary lay in the tub, I took some pictures.
Upon seeing the camera, Zachary, at first, said: "say cheese" (reference communication)... something he often said when I took pictures... but soon, that was replaced with "no more cheese" and "I'm sad". He truly looked and felt horrible... and I felt horrible too! My beautiful little boy... such a happy child only a few hours earlier... was now in extreme distress both physically and emotionally. I can't even begin to explain how I felt as I saw this reaction in my son. :o(
In these pictures above, notice the huge bubble like formations under Zachary's eyes... and the overall red circular appearance of the eyes. Notice the neck and armpit areas... and the fact that there are markings appearing around the entire chest cavity, specifically forming a pattern around the lungs and across the diaphragm... exactly where I had put the cod liver oil. These pictures were taken around 5:00 am that day.
I put the camera away for the time being and kissed him on the forehead as he lay in the tub and I continued to push water over his body. It was now about 6:30 am. Fred took Zachary out of the tub, and dried his hair.
I put clean clothes on Zachary and put him on my bed... with 2 pillows behind him to again facilitate his breathing. Realizing that spinning provides such a huge de-stressing effect for the autistic child, I turned on my ceiling fan and also got a small rotating fan that I placed on the nightstand next to the bed. Doing this immediately calmed him down. He went right to sleep.
Notice that much of the redness and swelling around the eyes are gone. Zachary's overall color is much better. His cheeks and his ears look much better too. He slept very deeply for about 1/2 hour and then was up again and moved to rest in the living room. By now, his chest had cleared tremendously. He now looked much better. Zachary's eyes looked much better and were less swollen too... as shown below. His left ear appears normal, although the right still shows some redness. The rash and itchiness were still there, only now, they had greatly subsided. He rested a little longer.
Zachary's overall disposition was much better, although I knew he still wasn't feeling that great. By 8:00 am, however, Zachary almost seemed his old self as shown in the second picture below and was back at playing on his computer...both his ears back to normal, as was most of his skin color... he still had a few patches of redness, but overall, one would never suspect he had just gone through such a traumatizing experience only a few hours earlier.
Indeed, the rash had subsided almost as quickly as it had come. By 8:30 am, Zachary had had 2 baths... both with oatmeal in them. Zachary looked great again, considering everything that had happened... and we thought we were done with this ordeal... but much more was soon to follow. I had been concerned about any reaction to the oatmeal... but there had appeared to be none initially. I had been concerned about the gluten in the oatmeal, but Zachary did not seem to react at all to it... from 4:30 to 10:30 am... it seemed to really help a great deal. But, as Zachary played on the computer, you could see the rash still bothered him... he was still scratching. His back had cleared significantly, in terms of how it had previously looked... the redness around the chest area now almost completely gone.
By 8:45 am, as he played on the computer, I asked Zachary if he was "sad" or "happy"... he responded: "happy"...many of the effects had now subsided ! :o) The worse was over... at least for now... so we thought!
Zachary had continued to scratch his back quite often from 8:00 until about 10:00 am. In addition, as he played on the computer, between 8:00 and 10:00 am, there was new behavior I did notice however. As soon as he sat at the computer, Zachary exhibited more autistic tendencies... starring into space... looking in that "blank look" sort of way at his computer and at the back of his chair... intensely focusing on the threads of the fabric covered chair. I couldn't believe it... how quick and how intense this reaction had been... and how it made the autistic behaviors just "come out"! Zachary also showed issues with fingers being up and down (mix of both) as I helped him with his math on the computer. The issue with partiality as it related to fingers was back when it had for so long been gone (see section on inability of the autistic to point with their finger and section on Fractions as it relates to counting fingers")! Absolutely incredible! As I worked on his math with Zachary... I noticed something else that resulted from my having "some fingers up" and "some down" ... Zachary attempted to bite my fingers as he tried to make me "put them all down or all up"... there again was that inability to cope with the "in between" or "partiality" in anything! By 10:30 am we were on the second leg of this reaction... the welts had definitely formed everywhere on Zachary's back and arms.
The front of Zachary's chest had almost completely cleared until about 10:00 am. Then, things started to go downhill again as shown in the last picture above. The rash had now moved to the arms and lower down to the hip area... where it previously had not been that bad. Now, the rash appeared everywhere on the hips and arm areas - like a ton of mosquito bites.
By 10:30 am... the rash was back... and Zachary was once again reacting to the cod liver oil. I placed Zachary on my kitchen counter, directly under a light and took more pictures of the reaction's progression after removing his clothes for yet another bath. Zachary's ears were now red again, as were his cheeks... the welts were now all over his cheeks too. The redness in the eyes had once again returned. The redness on the chest was coming back too... only now, it was in a different area than it had previously been. The speed with which this rash came and went was absolutely amazing. Twice now, we had thought he was over the worst of it... only to have the rash return - again.
As we prepared him for his third bath, I noticed Zachary had more issues with vision... he kept squinting his eyes, closing them tightly and then looked like he was trying to focus but couldn't. That could have been because the light was nearby. I did not know. This was all very stressful. We finished the oatmeal bath... and then let him go around the house naked to see if that would help.
My husband went to the store and purchased Aveeno calamine and Pramoxine HCI Anti-Itch cream to see if that helped. A parent of an autistic child had also suggested benedryl, but that just had too many warnings on it for our comfort. The Aveeno cream was recommended for: "fast acting, soothing itch relief of poison ivy, oak, sumac, insect bites, allergic itches and chicken pox rash... it also dried out weepy rashes". We applied this cream. It too contained oatmeal and it definitely appeared to help. Concerned about the oatmeal though, within a half hour, I decided to gently clean off the cream and give Zachary another bath... with tepid water only. When I removed Zachary's clothing to give him another bath, I truly noticed how the rash was "moving around"... to places it had not been before and it was also moving down his body. For obvious reasons, I chose not to show pictures I have of my son's reaction as it progressed from his chest to just above his knees.
So, the first areas impacted by the cod liver oil were the eyes (not surprising to me given cod liver oil is known to affect vision) and front and back chest area where I had rubbed the oil the most. Interestingly, while this was happening, in the very beginning, Zachary also scratched his head a lot too... all over his hair! Again, I'm not surprised given the brain was also supposed to be helped by cod liver oil. In the beginning, Zachary also kept furiously rubbing his ears - that rubbing happened within 10 minutes of my putting on the cod liver oil but at the time, I thought it had been due to excess sun.
I had been giving Zachary cod liver oil to help with vision issues and to provide necessary omega-3 for brain development. Well, given how he reacted on this particular day... how he scratched his head, how his eyes were so red and swollen, how the body parts where I had rubbed it the most were the most impacted, yes... cod liver oil did indeed impact the brain, eyes, etc... just as so many studies out there do claim... only this time, the impact had been a very very negative impact!
I was now convinced that the cod liver oil had caused this... there was very little doubt in my mind as to that! But why? Why would a product I had used so many times in the past cause such an intense reaction now? The only thing I could hypothesize was that perhaps this particular brand of cod liver oil had not been tested for heavy metal content... and that as more of the oil was used, the metal content (i.e., mercury) may have settled more at the bottom of the bottle. This was all just a theory... but I truly wondered if this was indeed what had happened... that this had been a reaction to mercury exposure! That's all this could have been. There was no way this could have been a reaction to the Noxzema or the flowers in the park. Zachary in no way could have rubbed his back with the Noxzema... and his back was the worse in terms of actual hives... the occurrence of small blisters (with no liquid) and the length of time they remained there. The flowers from the park had only touched his hands... and they been washed multiple times prior to this happening. It had to have been the cod liver oil! The rash had been the worse on his back, his chest, his arms and his legs... the exact places where I had put most of the oil! I knew this was not measles or poison ivy... those rashes were different, measles working from the forehead/hairline down to the feet... and poison ivy showing blister like formations with liquid in them. That's not what this was... this was basically everywhere I rubbed the cod liver oil onto my son. :o(
Needless to say, my desire to throw that bottle of cod liver oil into the trash was overwhelming, but then, I thought it would be better to save it and conduct a mercury analysis on it at a later date. :o) I truly suspect that what Zachary experienced was a possible reaction to mercury exposure... and if my suspicions are true, I fear what this exposure may do to his system going forward... time will surely tell!
A few other parents of children with autism suggested epsom salt baths [UPDATE MAY 2005: EPSOM SALT CAN HAVE MERCURY IN IT!!!], and also baking soda may help... or perhaps just plain water. After his third bath, Zachary has a better disposition, but the rash was still there. We later gave him a fourth bath also... with epsom salts. After that bath, Zachary fell asleep for a few hours. When he awoke, much of the rash on his legs had subsided. His eyes were still swollen. The welts had almost all disappeared and been replaced by red markings. That had been the pattern, first redness, then welts, then redness again... as the rash progressed through its many stages in all sections of the body.
Update: 8-18-02
I'm happy to report that by morning, almost all of Zachary's rash had disappeared. He had slept soundly all night. He was fine all day. There was still some fairly severe swelling around the eyes but it subsided completely by late afternoon. By the time he went to bed on this night, Zachary appeared back to normal except for apparently having more auditory and visual sensitivities. I'm not sure if these were due to the gluten in the oatmeal bath. I will simply continue to monitor these issues to make sure Zachary completely returns to his "pre-rash" state.
Since I now knew that many issues with eye contact were attributable to the fact that breaking eye contact was a coping mechanism in the autistic child, I decided to address the "coping mechanism" issue as opposed to trying to "fix it" via supplements such as cod liver oil. I could still use borage and flax seed oil products... but for me... cod liver oil was a definite OUT!!! I would no longer trust any cod liver oil... tested for heavy metal content or not. I, personally, just couldn't take the chance with my child that some company didn't meet "industry or government safety standards"... or had been negligent or made a mistake in its testing. This decision, for me, was final... absolutely no more cod liver oil in my home! Zachary's reaction had been so severe that I seriously believe he surely could die if he were ever again given this product.
I could find the benefits I needed elsewhere - in flax and borage oil products.
For those parents who do want to give cod liver oil, most parents on message discussion boards seem to go with a brand called Nordic Naturals, http://www.nordicnaturals.com/.
As horrible as I feel for not having verified the metal content of this particular bottle of cod liver oil, I do find comfort in the fact that perhaps our experience will help many other families out there avoid to avoid a similar intensely stressful and potentially physically damaging situation - indeed, one that could cost a child his life.
Also, I couldn't help but wonder: "how much ground had I lost"? I truly believe that God works in mysterious ways. He has blessed us greatly in the past and given us so much... I am sure He will continue to bless Zachary in the future too! So, yes, this situation and its possible future impact on Zachary stresses me out somewhat... but, I find comfort in knowing that God is in control - I truly know that in my heart! Perhaps this had simply been his way of giving me yet another piece to the puzzle so that many other children could be spared the horrible ordeal each and every member of my family endured as a result of this reaction.
I had never been through an allergic reaction in my life... I had no idea what an allergic reaction "looked like" and certainly had no reason to suspect that the cod liver oil had done this to my son - at least not initially. It was a bottle I had already used and simply "rubbed" on his skin. I had already used HALF of this bottle. Why would I ever have had any reason to suspect cod liver oil from this SAME BOTTLE could have done this to my son. I had no idea as to what this was until I had a moment to think about it. My father was a doctor, and so, whenever anything happened in our family, he was always just a phone call away to provide input as to what I should do. Actually, I was fortunate enough to have a couple of doctors in my family.
I knew parents used Epi Pens for allergic reactions. An epi pen was an injection of epinephrine or adrenalin. I don't know if an epi pen could have helped Zachary in such a situation - if indeed this was a reaction to a neurotoxin.
Life with autism is certainly anything but "carefree". There was no denying that the life of my entire family- many times - had seemed like a living hell because of autism and the many complications that came with this disorder. Sharing "our story" certainly was anything but "easy" - it was indeed very painful to share our journey with autism in a very honest manner as I had chosen to do. No parent was perfect. That certainly was true. And there were certainly always things in life we wished we could have done differently - especially when something that happened seemed to be "over with"- but then came back again - and then left again as fast as it came. Life with autism certainly was an emotional and exhausting rollercoaster. Yet, it was because of this that I had so wanted to share "our story" in the most honest way I could, in order to help other families understand the very real issues and dangers facing our children.
I certainly knew that I for one, would never again give my son CLO or a shot laced with mercury! If there was one thing I wish I could "re-do" as a parent - it certainly would be to have never given my child a vaccine laced with mercury in the first place! Perhaps then, my life and that of my entire family would have been much simpler - and I would not have a brain damaged son and family that was so, so devastated by autism.
Many parents currently having to go through chelation to remove heavy metals from their children's brains and major organs also often experienced very troubling times. There were often reactions and "scary things" there, too, that had to be dealt with. Chelation was certainly not without risks either. Parents of children with autism, overwhelmingly, did what they felt was in their child's best interest. Unfortunately, until the CDC and NIH admitted publicly that mercury laced vaccines were a problem, we would continue to have doctors who saw parents of the autistic as "quacks" for even implying that vaccines could be causing neurodegeneration... and as such, parents of children with autism, unfortunately, too often, were unable to find physicians who were well versed in matters of autism, chelation and other therapies for these children.
The true criminals in all this were not parents such as myself who now lived with allergic reactions and children with brain damage and who were so often so ill equipped to deal with the challenges they now faced... the true criminals who did this to my son sit in the halls of the pHARMaceutical industry, the CDC and the NIH - those who know, without a doubt, that mercury causes neural degeneration - as clearly captured on video in the University of Calgary experiment and - as clearly indicated in the Simpsonwood meeting transcripts - transcripts from a secret CDC meeting - posted on this website under my link entitled: REPORTS
The simple fact was that if this episode was indeed a reaction to mercury, my son could just have easily reacted to a vaccine laced with mercury, too... and if indeed he was "this allergic", surely another vaccine could also very well have been his last... and yet, if an allergic reaction to mercury had come from a vaccine, my son would have been nothing more than another "statistic" with "cause unknown" on a death certificate... courtesy of the CDC and/or NIH....
Each day, more children were injected with mercury laced shots... and each day, the CDC and NIH "walked away" from any responsibility... and it was parents who were left - devastated - to pick up the pieces of their shattered lives and deal with a seriously brain damaged child and a child with a seriously impaired immune system.
Society, I knew, was not just in its treatment of children or parents of children with autism. Society and, indeed, our government, preferred to "keep parents quiet" and attempted to seal vaccine injury lawsuits so that others in society not discover the true issues in all this.
But, ultimately, there would be one judge who will be all knowing and unfailingly just... a judge who will have counted each and every one of my tears as well as each and every tear ever shed by any other parent of a child with autism... and each and every tear shed by a child now living life - with autism!
And behold, I come quickly... to give every man according as his work shall be.
Revelation 22:12
Again, we had been very, very fortunate that Zachary turned out ok. So many things with autism, I felt I had learned "the hard way". My intent in sharing this very painful experience was to inform parents of these issues and dangers... so that no other child - or parent - go through this... and more importantly, to provide parents with an "advance warning" of something that could happen "out of the blue", in order to help parents to be more prepared for such reactions... to help parents know to seek help right away... because even if things looked like they were "fine again", my experience had clearly shown that they could easily get very bad again.
If any reaction occurred in a child, autistic or not, I urged you to seek medical advice right away - as such reactions, in my opinion, could indeed be life-threatening...