State: MA
Country: USA
Member since: Sep 19, 2007
Last logged in: Nov 27, 2008
Hi!
I'm Cheryl: Proud momma to DJ, age 8 (NT), and Ryan, age 12 (dx Autism); and wife of 15 years to Pete.I am currently a volunteer autism advocate having served on the Boards of several autism/disability advocacy organizations. Right now, I am working with some really great parents and professionals to build The Gottschall Autism Center in Massachusetts (www.gottschallcenter.com).
I also co-run a biomed support group for parents with kids on the spectrum called "Helping HANDS" (Helping Heal Autism & Neurobiological DisorderS).But first and foremost, I work to heal my son Ryan. Ryan was vaccine injured at 13 months old. Here is our story:
Ryan is 11 and has full blown autism (or should I say a combination of symptoms that has been labeled as autism). Because he was born in 1996, Ryan got the full load of hg-containing vaccines including Hep B at birth.Based on Ryan's medical records, he was injected with a total of 212.5 micrograms of mercury between birth, and through and including the date of the MMR & 4th Hib.
As an example, the Hep B he received at a day old (8lbs. 9oz.) put him at over 30 times the EPA's exposure limit for mercury. If you want to check out the toxic effects of thimerosal, check this link http://www.nomercury.org/msds.htm for links to some thimerosal Material Safety Data Sheets (MSDS).
I can't believe that someone thought that injecting newborns (with immature immune systems) with a neurotoxin was a good idea….but back to the story.
Ryan was colicky as a baby, had multiple upper respiratory and ear infections, and was loaded up with various antibiotics for months on end.
Then came the MMR.
At 13 months old I brought him in for a checkup. He had just gotten off of antibiotics for yet another ear infection and was also recovering from the chicken pox (natural virus--not vaccine). Ped checks his ears. Yup, ear infection is back. Writes out a scrip for Augmentin (nasty, nasty stuff). Gives him his first MMR, along with the mercury-laden Hib. Sends us home. He is fussy, but ok.
A couple of days later, it hits: Erythema multiforme, Vasculitis, 105 degree temps. (See my Photo Gallery for a shocking picture of his vaccine reaction.) Ryan cannot eat, walk, talk, even hold up his head. He can only cry and moan. Docs are stumped, or so they say...not one person ever mentioned vax reaction to us. Ryan "recovers" from that episode but it's too late; he slides into the autism abyss.
After doing biomedical interventions for over 8 years, Ryan is MUCH improved. He is not recovered but has moved from the severe end of the autism scale to the more moderate/mild end. As we continue to heal and detoxify his body, he continues to make gains.
Some Treatment/Interventions used for Ryan:
- Speech
- PT
- OT
- APE
- Social Skills Group
- In-home Music Therapy
- Dietary interventions have evolved GFCF to SCD over the course of 8 years
- Chelation (DMSA & DMPS)
- Valtrex
- Methyl B-12 injections and Folinic acid
- High dose Vitamin A
- Prescriptive and natural gut healing protocols
- Pancreatic enzymes
- Probiotics
- EFA's
- LDN
- Many vitamin & mineral supplements
Ryan is not yet recovered, but I'll never give up trying to make him as healthy and happy as I can. :-)
Favorite Compositions (0)
asdmom's Compositions
by asdmom on 01.23.08 - public - 264 visits
I am losing what's left of my mind--and, trust me, there's not much to spare these days...
A brief history: Since the 3rd week of September 2007, Ryan has had strep FOUR times. We keep changing antibiotics trying to kick it but to no avail. Ry just finished another round of AB's last Monday.
Over the weekend, the OCD and anxiety started rearing their ugly heads. Last night, Ryan was complaining of a headache, earache and throat pain so I kept him home today and off we went to see the pediatrician yet again.
The strep? It's Baaaaaaack! UGH!
We are now going to see an ENT about getting his tonsils taken out. If anyone has experience with the strep-tonsils connection, I would love to hear your story.
In the meantime, I am trying desperately to hold it together as the OCD, anxiety, temper tantrums, and aggressions are stressing the family to the max. After a not particularly fun bout with Ryan's OCD, DJ screamed at him that he wanted a new brother. :-(
As Ryan has worsened, so has the rift between him and DJ. I feel like I am bouncing from one "side" to the other.
Ryan needs a lot of extra handholding and attention as he struggles with the strep/OCD.
DJ is having a hard time keeping it together and is lashing out at Ryan, so I have been walking the fine line between validating his feelings while at the same time try to curb the verbal rants directed at his brother.
It feels like a vicious circle of anxiety, anger and aggression. (The new AAA?)
My husband will either scream or hide out in the basement/office, so not much help there (and is not being the best role model for DJ--so the basement is ok with me at this point).
I know that once Ryan's strep issue is resolved, he WILL feel better and be easier to live with. But in the meantime, I'm thinking that I need to get DJ into counseling. I have done as much as I can, i.e. spent lots of special time with DJ doing things that he enjoys, talked about his feelings one-on-one, sent him off to preferred activities like much anticipated playdates with his friends. So, if anyone has any words of wisdom for me....PLEASE SHARE!
P.S. I know I owe some of you email responses and apologize for not getting back to you sooner...
Comments(17)
HeatherK
Posted on Thu, 14 Feb 2008
My 9 year old ASD son has PANDAS. Every time he gets strep, he has 3-4 months of extreme OCD, anxiety/fearfulness, and facial and verbal tics. Inositol and N-acetyl glucosamine have helped reduce his symptoms quite a bit, but they don't completely disappear. I can really relate to what you are going through, and I hope the symptoms fade quickly for the the sake of everyone in your home! If you would like more info on PANDAS, I can send you some links. Heather
Melissa
Posted on Fri, 25 Jan 2008
My brother and I had strep and tonsilitis a great deal as kids, so out came the tonsils and adenoids and no more throat problems! I was sick alot with this before the surgery. so glad they are gone.
ASD DAD
Posted on Fri, 25 Jan 2008
Well in my years of growing up i had to deal with strep alot too. I then had my tounsils removed and solved it all. As with DJ maybe you could set a day aside with him and take him somewhere he enjoys. Then while you have him in that moment try to explain the pain ryan is going thru and how he needs you at this time but you still want to show DJ how important he is still to you. Good luck are prayers are with you.
ASD DAD
Posted on Fri, 25 Jan 2008
4muskateers
Posted on Wed, 23 Jan 2008
Well sweetie, as I place more comments, people will see we live Rx free. I use oil of Oregano to kill every bug you can imagine that is internal. I use tea tree oil to kill all bugs on the skin. The oil of oregano will kill the staph, strep, and other ugly bugs. you take 5 drops in any liquid 3 times a day. until the bug is gone, then 5 drops once a day as maintance. I also cook alot with oregano since Dr. Gupta from the UK e-mailed on what to do. Try it, it may work for you and save you a trip to the OR. If it worked for you please let me know. and if it does help you please pass the info on. Oregano tea works better than a cough suppresent/expectorant.
shannonj
Posted on Wed, 23 Jan 2008
I think there is an on-going research project where they are studying the tonsils of children on the spectrum. If you do decide to have them removed, I'll help you track down the research group and see what it takes to make a donation to their study....(this is the least of your troubles, I know).
SuziMom
Posted on Wed, 23 Jan 2008
I grew up with a sister who had (they called it back then), "severe mental retardation". My parents basically just ignored me unless they needed help with my sister. Speaking from a sibling viewpoint, I wish my mom had said & done the things you do with DJ. You are doing great with him & his feelings (letting him know how much you love him). I know he will remember every loving & "mom" thing you do & say. Never feel guilty & from my viewpoint you are doing fantastic with his needs & feelings. It doesn't feel that way now, but he will understand & appreciate what a wonderful mom you are even more as he gets older. Just having a counselor (as tabaitasteward suggested) as his own will also be terrific. Don't worry, my parents are gone now but I still love & care for my older sister. Kids will grow up & surprise you.
Angel_Eyes
Posted on Wed, 23 Jan 2008
My heart goes out to you and your family, my blessings that things will get better really soon. I have heard that with over lapping anti biotics it does something with the gut issues and creates stronger behavorial issues. I do hope that the ent has a better solution and thing turn around for the best !
Motherof4
Posted on Wed, 23 Jan 2008
How horrible! I hope seeing the ENT will help. A friend of mine was a strep carrier, and having her tonsils out finally got rid of it. Fear makes a lot of people angry; he may be afraid because of the unremitting pain and the lack of control he feels over it. If you can get him to draw or sculpt play-dough or find some physical means of expression he may feel better. If you think he will hear you, try to talk to him about the strep and explain to him that it won't last forever. You never know what he might understand. DJ sounds like he needs a caring adult on his side and somewhere he can go to get away from the stress. Counselling may be just the thing. I very much agree with Mrs. H that you need some more adult help, and some breaks for you. Good luck, I hope this situation gets better soon.
Mrs.H.
Posted on Wed, 23 Jan 2008
It seems to me you have more than a full plate - you have a buffet. Ryan - Carol is correct, we have had household carriers without any symptoms, and have all been put on antibiotics at the same time to "knock it out." Out my four kids - three had tonsils and adenoids removed (after many sets of tubes) because of strep and/or ear infections. For one of my children - they "grew out" of their strep around 13 years old (I know - that doesn't help.) In the meantime, he just feels crumby, and has no outlet for dealing/expressing/compensating perhaps - so the AAA is the easiest path at present. So maybe if you pared it down to one or two areas of distress, maybe you can shape a new temporary path. Which would be the quickest and easiest (HA) area to address - OCD, anxiety, temper, or aggression? I wonder if it were possible to get the outside stressors to a minimum. For example - does DJ have any buddies to whose house he can play after school, or spend the night (weekend?) for a few days for a break for both? How soon can you get in to see the ENT? Time to put your good advocating voice to good use. Is it possible for you and your husband (once he emerges from the basement) to come up with a united plan of action so that you share some (perhaps not equally) "Ryan time"? "I'll take bath time if you take the transition to bed....." Are there any other team members (teachers, therapists, family members) who can continue with the same plan as you, and support both you two and Ryan? DJ - could probably use an ear. How's the support at school? (Can you connect with his teacher, guidance counselor, nurse - any adult to whom he feels close?) Are there any support for sibs of kids on the spectrum in your area? Are there any local mental health agencies that specialize in young children? Developmentally - it may be that both boys are entering a tricky time (I believe Gesell calls it the Neurotic Stage - fitting huh?) and this is just adding to your mayhem. But sometimes it helps to know some of it is developmental - and is bound to evolve at some point. Lastly - you're only one girl who can juggle only so many balls - you need someone to help catch the ones that are going to fall. I wish I could help.
shannonj
Posted on Wed, 23 Jan 2008
I can totally understand how this strep/ocd/aggression crisis can take you down. We have lived with it in one stage or another for years. We're finally seeing a doctor that really thinks she can help us kick it the gut issues that seem to be the culprit (although he has never "had" strep---she thinks, because of the ocd, that we are dealing with it as well)...I'm happy to keep you posted on our progress....Hang in there--and get some outside help so that you can get a break too...Please take care.
cjkellie
Posted on Wed, 23 Jan 2008
I feel for you. When Chad was younger he kept an ear infection. It was just awful for our whole family. He just didn't know how to handle pain so he lashed out at everyone, and getting med's in him then was such a battle. Good luck to you and I sure hope he feels better soon. Take care Kellie
stevej
Posted on Tue, 22 Jan 2008
Wow, can I relate. I wish I had answers for you. My son definitely has the AAA issues you discussed and it can take anyone to the brink. Over the week-end my son hurled a lid at our respite worker, which she fortunately ducked and now we have a pretty substantial hole in the kitchen wall. A doctor today gave some new meds for the agression - we'll see how it goes. Hang in there!
Carol
Posted on Tue, 22 Jan 2008
Have the adults around him been tested for Strep? Adults can be silent carriers/transmitters and not have any symptoms. We had a situation at school where one of the teachers was a carrier. Afer she took antibiotics, there were no more cases in her class.
seterah
Posted on Tue, 22 Jan 2008
Yeah, I know what you mean. Christina has had the stomch flu 3 times since winter started and she has temper tantrums all day. Also every mid-month or so she has PMS for 2 weeks and is very aggressive at least once a day, even though she is on the Depo shot and doesn't get her period. HORMONES STINK!! Sorry, I dont have to much advice if not any at all I could only empathize with you! Seterah
lessstressed
Posted on Tue, 22 Jan 2008
hi, have you herd of pandas disorder, if not google it, for people who have it , srep is the cuase and treatment is availible, sometimes it is hard though to find a dr. that knows allot about it.lessstressed@gmail.com, when my son gets sick, exspeccially recently with strep, his ocds and aggressvive hyper behavior came back with a vengence.
tabaithasteward
Posted on Tue, 22 Jan 2008
My personal feelings are with you I believe he needs counciling if not for anything else at least he can talk to someone who doesnt have anything to do with his home life that way he can use the person to vent on and they wont judge him in anyway. I truely feel for you after my weekend my heart goes out to u please try and keep your chin up.
