What lengths would you go to if your child were diagnosed with autism?
This blog is about what we have learned, what we have done and continue to try in the hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another. A life that is enriched by our interactions.. this is what I dream of for her and what drives us to go to such extremes to help her, hopefully, achieve some day.
Five and a half years ago we received the news that she had been diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified). Since then it has been nothing less than a wild roller coaster ride of hope, disillusionment, gratitude, determination and perseverance.
Here are some of the therapies we have tried in the last five plus years:
Gluten/Casein free diet – no noticeable change after five months
Homeopathy – up to 13 tinctures a day delivered orally – suppose to help her gut issues – no noticeable change after more than 10 months.
Cranial Sacro Therapy – did seem to help her constipation issues at first, but over a longer period (close to a year) did not appear to help enough to warrant continuing.
Qigong Master – suppose to help regulate her “energy flow” and promised to “cure” her autism – no discernible change after almost 6 months.
Chelation – we did one round before discontinuing upon advisement from a number of lead and metal specialists out of Albert Einstein College of Medicine.
Detox Foot pads – Pads that supposedly draw toxins from the body while she slept. No noticeable change after several months.
Brushing Therapy – Emma became very hyper as a result of brushing therapy and after her sleep became disrupted we discontinued.
Auditory Integration Therapy – while this therapy did not seem to adversely effect her, it did not appear to help either. We discontinued after a few years when she began objecting to it.
Hyperbaric Chamber – We did not do more than 10 sessions. So I cannot comment on whether this may have helped or not. We discontinued because we were starting the stem cell therapy and wanted to do one over the other.
ABA (Applied Behavioral Analysis) – 40 hours per week – we discontinued after two years when Emma began regressing.
Stanley Greenspan’s Floortime Therapy – We continue to use Stanley’s DIR methods. Emma has made noticeable improvements in language – both receptive and expressive – as well as shows a real interest in initiating play with others, both adults and peers, as well as a huge uptick in imaginary play as a result.
Stem Cell Therapy – The Institute for Cellular Medicine – Costa Rica
We took our daughter Emma for her first bout of stem cell treatments with the hope that they might help her autism in March, 2010. The Institute for Cellular Medicine was introduced to us by Emma’s neuroscientist in New York City. This treatment is in it’s infancy, they have only treated about 100 autistic children, but are seeing promising results. The stem cells were harvested from umbilical cord blood and mixed with her own blood serum.. They then injected this mixture intrathecally and intravenously on Tuesday and again on Thursday. She was sedated for all procedures. Emma had a bad reaction to the first round, evidently fluid leaked from her spinal cord causing blinding headaches and vomiting. We were able to calm her with pain medication and by Wednesday evening she felt much, much better. We decided to go ahead with Thursdays treatment and had them sedate her after the procedure to ensure that she lie flat and thus lessen the likelihood of seepage from her spine. She was also given a drug to reduce nausea. She rested in the hospital with us by her side for almost four hours. We have been told that we should not expect to see any significant change for a month or two. We will be returning to Costa Rica for round two in August.
It’s 82 degrees. I am freezing cold with chills and standing here with half a tear in my eye, one that wells up the more I type. AZ, “you write good”. You (pl) must have the strength of 10,000 Men. I know you both. Not well, but well enough to know that your response is probably, No, not really, it’s just what we have to do. Well, being the brother of a handicapped sibling and another who died too young for my liking, I can tell you, I’d do the same. Grab that nasty bull by the balls and ride him into the ground. Steer when you can and hold on for dear life the rest of the time. It has made me who I am. I am sorry that it is at someone else’s pain, suffering and loss, but believe me I give more of myself for it, even though I know it will never be enough. And then I give more. Prayers out to you and all the RockStar parents, family members and those who love others more than they love themselves.
Dear AZ and RL and Nic,
Thank you for including us in Emma’s Blog. It’s great to be able to understand her whole story and to know what she has been through and what is coming up next. I remember you telling me a lot of this but to see it all is just amazingly…REAL.
This Blog is a great educator for people like me, who know so little about what autism really is and how variable it can be with every person diagnosed with it.. I have learned so much more now. Your research is remarkable, vast and courageous. YOU are remarkable and courageous. What a mystery, to know she’s in there and to continually encourage the brave little girl inside to unveil herself. She is a Beauty. A beloved Beauty. Bless you all, Deborah
Wow, the strength and courage you both have, never ceases to amaze me. I too read your blog with tears in my eyes and hope in my heart. Emma is so lucky to have you as her parents. The road is long, but the journey and pot holes along the way are all worth it. She is a beautiful little girl with so much love in her.
I Love you all. Bobbie
Ariane ~ I’m proud of you for documenting Emma’s journey. Others will learn from your experiences. You will inspire others to take responsibility for choosing their own paths, make informed decsions, and listen to their gut intuition. We have a collective responsibility to be the change we wish to see in this world and be the manifestation of HOPE. No vision is too big. I pray your Emma will improve and become the communicating, singing, skiing, dancing, amazing Angel you hope for. She’s already there…it’s inside her… I know it. With so much love, encouragement, and power to you all. Amanda xoxo
I never realized how much you have been doing. It sounds exhausting.
This is such an excellent way to get information out there for people who care about Emma (and all of you), but also to get information out there for people who need to know these sorts of things… just to gain some perspective, or on journies of their own.
Love and miss you,
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