A Parent’s Story: Part One & Two
Recently a dear friend had their 11-year-old scoped by the amazing Dr. Arthur Krigsman out of Thoughtful House in Austin, Texas. Before I explain the results, I have to tell you that this family makes me look like a big time underachiever when it comes to medical treatments. Based on medical tests unique to their child, they did dozens of interventions and exhausted many therapies, including applied behavioral analysis ( ABA), speech, and a myriad of other therapies. They truly had done “it” all or close to it. What were the results of the gastrointestinal scope you ask? Persistent measles virus (vaccine strain, not the wild type, according to the biopsy) and catastrophic gut damage. The treatments to help this child are emerging and still very much under research. This little boy and the thousands of kids like him deserve much more than what is being offered today. Does this family want to give up? No – they are forging the answers for many families and will help their boy be the best he can be. I am so thankful this guy has his parents, who are true heroes.
This reminds me of a separate conversation that I have had a number of times with different parents since TACA was started. Each of these parents told me their kid would have been better off having cancer. They felt that there were more treatments for a good outcome and that people would be more sympathetic to cancer over the misunderstood aspects of autism.
This makes me so sad. How could any parent wish their kid had cancer over autism?? I can understand their feelings and surely understand the frustration of looking for help to help our kids. But our kids deserve more in the way of being understood and treatments unique to their medical and individual needs. I repeated this story at the Autism One conference and found myself and others in tears. How can a group of parents with special needs children feel this way? Following that discussion, other people vocalized that they felt and had the same wish at some point in the journey – the wish for more help and others to better understand.
Which brings me to my man, Jeff. He, too, has had thousands of hours of traditional therapies ( ABA, speech, OT,) and numerous biomedical interventions based on his unique needs and medical test results. The past four weeks, we were addressing some constipation issues – something I am familiar with as he experiences these issues 1 or 2 times each year. It is also important to note that early on in the journey, Jeff had a long bout of diarrhea at ages 3-4 – sometimes several painful gooey stools a day.
Since then much of the gut healing protocol, including dietary changes, allergy elimination, probiotics, Secretin, glutathione (in many forms), supplementation, oils and surely something I am forgetting, went into Jeff. Results came out both in poops and in acquisition of necessary skills, especially speech. (Jeff was non-verbal from 15 months to almost 5 years of age.) But testing Jeff today he still has numerous delays and issues to address, and this poop issue that pops up 1-2 times a year. We thought these were not serious and manageable.
This past month, his sleep patterns changed, which is a big sign that he needed help. He became very fidgety at night and took 1-2 hours to go to sleep. But he was fine during the day. He had a problem moving his bowels, sitting on the toilet for 30 minutes or more asking me, “Mommy, where is the poops?” We tried about 7-8 different natural remedies that in the past always did the trick with little in results and now pain entered his nightly ritual. This concerned us. Was it a gut bug? Stool issues? A blockage? Why was he in pain?
After trying several stronger remedies and to rule things out as suggested by our doctor, we went to a radiologist for a quick X-ray of the gut. We wanted to see if there was an obstruction or large collection of stool in Jeff’s belly. The X-rays revealed a load of stool and back up that would be painful and cause the issues at hand. And Jeff was letting us know what the trouble was.
After years of helping this child with his bowels have we done enough? Apparently not. What makes me cower to a puddle on the floor is my poor Jeff – how long has this bothered him? What about when he was nonverbal and did not sleep more than 2 hours at a time for almost 3 years? Did he have this problem then and could not tell me?
As parents we have to keep looking for answers. Something ruled out years ago could be a problem tomorrow. Autism is akin to that carnival game “Whack the mole.” Just when you hit a mole and think he is down for good, that mole pops up again for a visit. Unfortunately, the visit is not a gracious one. This circus of activity, continued required vigilance, and reoccurring issues wreaks havoc on our beloved kids.
I hope all of you reading this remember to leave no stone unturned – especially that “poop” stone. New or reoccurring issues almost always lead us to the poops. And now that Jeff has given birth to the largest poop storm over the past week, he has revealed such a lovely child that is obviously feeling much better. But my job is not even close to being done here. More on that as I go turn over some more stones.
Never leave that stone unturned folks – persistence pays off.
Hugs, thanks, and BE SAFE
Lisa A Jeff's mom
P.S. on a side note – IDEAS FOR THE SUMMERTIME FOR OUR AUTISM SPECTRUM DISORDER CHILDREN CAN BE FOUND HERE: http://www.tacanow.com/summer_months.htm
And a great article on preparing your child for summer camp can be found here: http://researchautism.org/resources/newsletters/2006_may.asp#Feature
I am getting a lot of calls and emails from folks wishing Jeff well and checking on the results from the recent Thoughtful House trip and procedure that happened late August 2006.
First things first – if you missed “What happened to Jeff?” Please see this link for complete details: http://www.tacanow.com/enewsletters_archive/June_2006_1.htm#10
We went to Thoughtful House and I cannot RECOMMEND THESE WONDERFUL FOLKS MORE THAN THIS! I LOVE THEM AND RECOMMEND THEM! Dr. Krigsman, Anissa, Nora and the Central Park Surgery Center in Austin TX were FANTASTIC!!! I cannot say enough about these folks. I thank them for being here to help our kids.
First and foremost: I am just a mom - I am still learning. Jeff has not yet started the treatment protocol but has been under our M.A.P.S. doc Dr Jerry Kartzinel's care for over six years (another love, I tell ya). I will NOT DO all the professionals, science or process justice. I will just let you know about it from a mom’s point of view.
PREPARATION FOR THE PROCEDURE:
In preparation for the colonoscopy and endoscopy, I was a lot more scared of this then I needed to be. A homemade social story and new Game Boy got Jeff totally ready. Follow that with a promise for a fun vacation and he was ready to go.
Here is the summary:
1) We arrived in Austin on a Sunday. The schedule? A doctor check up visit and prep in the hotel on Monday and procedure on Tuesday. A final check up via phone on Wednesday gave us a clear go head to travel home via plane.
2) Fasting for Jeff was easy (from Sunday night til Tuesday afternoon) My husband and I also fasted - it is only fair.
Let me clarify fasting: Fasting meant for one day Jeff could drink CLEAR liquids and eat CLEAR Popsicles. He partook of mango popsicles, diluted pear juice and lots of water. NOTE: NO red liquids or popsicles as that can look like blood in the procedure.
The hotel was kind enough to put a refrigerator in the room for easy access and the FLAGSHIP, amazing Whole Foods Market was just 2 miles away from the Hyatt Hotel on Barton Street – which is also about 10 minutes away from Thoughtful House and another 10 minutes away from the Surgery Center.
3) Doing the Miralax (8 doses in four hours) and 1 enema - easy. Pooping - easy. (Easy for me to say / write -- right??)
4) Going to the surgery center and doing the procedure - easy. Jeff jumped on the exam table in the operating room, lifted up his shirt and said “My name is Jeff. Here is my belly. Are you ready to look at my belly?”
The hardest part: Jeff waking up from the anesthesia. He cried and was very disoriented for about an hour. That passed but was a hard experience – while everything else was easier than expected. Considering overall - this process went VERY SMOOTH and should not be a barrier to finding help for your kid.
On the plane and rental car – with all sorts of stops in between -- Jeff traveled fine and our follow up vacation was a blast.
Note: when Jeff was fasting, he did not seem "better" like some kids I have heard without food hurting his belly - just really lethargic. (So did I, by the way, not eating for some time.)
WHAT’S THE DIAGNOSIS FOR JEFF?
- The endoscopy revealed a polyp in the esophagus - and lymphoid nodular hyperplasia (LNH) in the esophagus - which also included reflux.
- The colonoscopy revealed duodenal lymphoid nodular hyperplasia (LNH - all the stuff Wakefield and now Krigsman talk about in their presentations) and ileitis. But the scope revealed a normal colon.
What I find truly interesting:
a) Jeff has been doing the M.A.P.S. “gut” protocol for ALMOST 7 YEARS! (GFCF Diet - love this, it is FOUNDATION OF HEALING! Hyperbaric Oxygen, Secretin, supplementation, methyl B12 injections, chelation, glutathione, allergy elimination and rotation diets. It is probably easier to list what we have NOT done for Jeff than what we HAVE done.) The pictures of his esophagus and gut, then the diagnosis absolutely SHOCKED ME (these written words do not feel strong enough). I felt like someone hit me hard in the stomach. Thankfully, what we have been doing for all these years is very helpful and worth the effort. But there is A LOT more to do. My theory now: know the enemy and know what to do.
b) Based on talks with w/the fabulous Dr. Krigsman - there is much to try and things to do to calm the immune system, deal with inflammation issues (a big issue for a lot of our kids) and treat what is there. Some can be treated and some of it is still being worked on.
c) What is important to note is that our discussions also revealed it does not matter how high functioning or low functioning a child is - this procedure can reveal amazing information to ACT UPON.
WHAT PARENTS CAN DO --
READ! Listen to conference tapes! For gosh sakes - if this effects 80% plus of our kids as suspected - please do not spare any time in ruling this in or out with your child’s primary treating doctor.
By reading and listening you will learn: SYMPTOMOLOGY OF GUT RELATED ISSUES, TESTING AND TREATMENT PROTOCOLS. This new disease is FAR TOO COMPLEX and because I am just a mom, I could not do the description JUSTICE.
LISTEN: www.autismone.org – From the Autism One Conference, buy the tapes or CD or MP3 files ($10 each - a bargain for the info) Krigsman and Wakefield 2006 and Wakefield 2005 (three separate talks). You need to have them to fully understand what is going on.
EVERY PARENT SHOULD HEAR THE ABOVE THREE TAPES. There is ONE set in the TACA library in Costa Mesa (no, I cannot reserve them - first come, first served).
Who can do this procedure?
Folks - this is a new disease. My understanding is there are 2 doctors who know what to look for and what to do if they find it -- Dr. Tim Buie out of Boston and Dr. Arthur Krigsman, part time out of Long Island NY AND Austin TX.
I have heard from DOZENS of families about their kids being scoped by local doctors who mean well but do not help or do not find anything. Many of these kids have gone through procedures TWICE to find answers with Dr. Krigsman or Dr. Buie.
We got to Krigsman using Frequent Flier mileage and my hotel coupons from my “working days.” Southwest Airlines will allow families to fly for free for medical emergencies. Insurance is covering most of this procedure as it has its own set of ICD9 and CPT codes with a primary doctor referring to Dr. Krigsman. This trip will cost us similar to what it would cost doing the procedure down the street – only we had the best team knowing what to look for.
And yes -- there are long wait lists for these two doctors. Check with their offices (not me) on availability. It is best to get a referral from your M.A.P.S. or treating doctor for insurance purposes.
CLOSING - FINALLY:
Considering Jeff is considered as "high functioning" (WHATEVER THAT IS - he attends typical third grade), it was astounding to me the damage he has and how well he functions. I also am so saddened by the pain he must be feeling and yet he shows his bright and sunny disposition to go to school and do what he does day in and day out. He is my hero.
What also scares me is this:
- God willing and through hard work, we can get our kids "recovered" or "indistinguishable from their peers" and this gut disease makes them more susceptible to other immune-related issues or cancers or God knows what else.
- For the kids that the treatment protocol helps little - prayers are needed. Based on anecdotal parent feedback, many families tell me so far the treatments are helping almost every child - just at different degrees for each child. It scares me to think, is the damage permanent for some of our angels? And at what scope? This thought keeps me awake at night.
The only problem: since my last phone consult with Dr. Krigsman, I have been kind of operating in paralyzed walking trance mode. While the results are still being biopsied to be confirmed – I asked a key question, “Does Jeff look like every other kid you have scoped with measles virus?” The answer was yes. While that does not confirm it is the measles vaccine strain yet and does not confirm that it is the measles virus 100%, I would be willing to bet a large sum of money it is.
- All these years I was scared to find the answer of the "enemy" affecting my child. I also built up this procedure in my head as insurmountable, impossible, no way! I am so glad I overcame those issues. I truly know this will be an invaluable step for treating my son. I cringe to think how many kids are not being looked at or symptoms are being ignored.
Bottom line: I give up looking for answers when I am dead. I will keep pushing hard on finding things. I learn something new almost every day. I will be sharing them every step of the way. Hopefully the sharing helps and takes the mystery out of something that SEEMS scary.
Special nods to Dr. Wakefield - I am a big fan. Without him, I shudder to think about the Dark Ages we would be in... maybe we are now in the Renaissance period?? One can only pray. We would be lost without him.
MY ONLY WISH: I WISH I DID THIS PROCEDURE SOONER. Maybe it will make sense to some families and get them motivated to take the step and help treat their child on his/her gut issues. That is why we share. That is the call of the families who read this note and the doctors who help them. I wish there were some down the street ready to go – but that is not the case yet.
That stone unturned? Right now my toe is stubbed on it. Or should I say broken with a big cast? I have a lot more reading, learning, research to do and protocols to try....and I AM NO EXPERT ON THIS. If you have questions, please direct them to the smart guys mentioned in this note, not me...I am still learning.
Special nods to Jeff’s friend Ian and his mom, Elizabeth – thank you. The OC Register article on October 2 (October eNews 2006 #1) is amazing. I hope it inspires other families to reach out to families like mine. Ian and Jeff have a similar bond – just to be friends and find friends. I am so thankful my son Jeff has found a good friend like Ian.
Your friend on the journey,
Jeff & Lauren’s mom, Glen’s wife
Hugs, thanks, and BE SAFE
Lisa A Jeff's mom