Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 I want to share an invitation I just received to meet with Matthew Newell, the director of the Family Hope Center in Blue Bell. ---------- Greetings! Many of you know my wife Tina & I have a one-year old daughter who has had many medical challenges since the day she was born. Seizures, enlarged adenoids/spleen/liver, low muscle tone, struggle to gain weight, feeding tubes, incurable but containable thyroid issues, basic blindness & deafness, and more. We've had dozens and dozens of caring people involved, from doctors and nurses to friends and family to total strangers—dispensing medical help, giving of their time for Tori's therapy, bringing a meal over and most definitely praying. We could not have gotten to this point without all of those people (some of whom are reading this email). One particularly special group of people to Tina & I is the people at the Family Hope Center (Blue Bell, PA; [ http://www.familyhopecenter.org/ ]www.familyhopecenter.org). They specialize in brain-injured kids (although they help adults too) like our Tori. The basic idea is instead of medicating or doing therapy on the back end to help cope with a problem, go to the root (i.e., the brain) instead and see if you can get that fixed so that the problem will lessen or in some cases even heal completely. I could write a very long email about her first year of life and the difference between the " standard " medical approach and what FHC does, but let me give you one example: Tori was diagnosed with a mild case of polymicrogyria when she was 2 months old. This meant she had " many little folds " on the surface of her brain. The only clear " result " of this was seizures, and a fair amount of them. She was given an initial prescription of Phenobarbital to deal with the seizures, and for the most part it worked. We had to up the dose a couple of times along the way to get to the right place of controlling the seizures. We came across FHC in late June 2006, several months after Tori had been taking the Phenobarbital. As we got to know FHC, one thing they said was, " We understand your desire to keep giving the Phenobarbital, because seeing your daughter have a seizure is not pleasant…but do realize that the Phenobarbital basically `drugs' her brain and slows it down. The drug does not heal the reason behind the seizures (i.e., the polymicrogyria); it merely prevents her from having the seizures. If you want the seizures to go away, the brain itself will have to heal. But if you are `drugging' it, your brain will struggle to ever heal. " FHC recommended we gradually wean Tori off the Phenobarbital and closely monitor how she did. After 2.5 months, Tori was totally off her Phenobarbital and having almost no seizures at all. To this day, Tori rarely has a seizure. This was not because our doctors at CHOP were mistaken about the seizures; they were totally correct. But FHC's holistic treatment of Tori—including nutrition, hyperbaric chamber sessions, and a specific program for her all played a big role in her brain healing enough to Tori not only not having seizures anymore, but her polymicrogyria is gone as well! The reason I'm writing is because we have the privilege of Matthew Newell, the director of FHC, coming to our home tomorrow night (Thursday 02/22 @ 8pm). If you have a child dealing with autism, cerebral palsy, Down's Syndrome, epilepsy, or things like ADD & ADHD, or in general have social & emotional problems, we want to invite you to our home to hear Matthew speak (if you happen to be a medical professional and would like to come simply to learn about what they're doing at FHC, that's fine too) and see if you think FHC could help your child. Some of you (or friends you know) have battled your child's problems a long time. I know Tina & I feel like we've aged 4 years since just last summer, so if you are someone who's feeling beaten down and tired by the struggles you've had, you're especially encouraged to come. Matthew is scheduled to be here 8pm-9pm, but if I know him, he will stay as long as needed if you wanted to talk more about your child. It is free of course, and we'll have some snacks. The main thing is, if you—or someone you know could benefit—want to come, please just email me to RSVP. I'll email you back to confirm and get you directions (we live near the Willow Grove Mall in Montgomery County). Please include a phone # I can reach you at and perhaps both home & work emails so I can contact you after or during business hours either tonight or tomorrow AM. We have just been very blessed so far and want to open our home to anyone—even a total stranger that you know (but we don't)—who might be worn out by the struggles that autism et al mentioned above can bring. I'm out the rest of the afternoon but will email you back later tonight or whenever you happen to read this & contact me). God bless you, Timmy D timmyd P.S. The site for FHC is [ http://www.familyhopecenter.org/ ] www.familyhopecenter.org; the site for our daughter—which I am behind on updating—is [ http://www.toriisamazing.com/ ]www.toriisamazing.com. P.P.S. The former chairman of the board for Chestnut Hill Hospital— Dr. Linda Baker—quit at CHH to go to Family Hope Center because she believed so much in what FHC is about…and she too may be on hand tomorrow night for awhile. ---------- Jamie mom of Devon, 3 y 10 m, 24 lbs, 35 1/4 in tall seen by Dr. Ryan (GI), Drs. Spergel and Brown (Allergy) and Michele Shuker (nutritionist) @ Children's Hospital of Philadelphia (CHOP) Eosinophilic Esophogitis, tested + March 2005 to wheat, eggs, dairy, beef, peas, peaches placed on elimination diet, no eos July 2005 or Sept 2005 March 2006 – 40 eos G-tube placed 4/5/06, elemental diet - Neocate Jr endoscopy 6/14/06 - no eos trialed bananas, rice, chicken, carrots endoscopy 8/2/06 - 1 eo trialed apples, tomatoes, strawberries, white potatoes endoscopy 10/6/06 - no eos trialed pork, green beans, oats, pears endoscopy 12/1/06 - 15 eos - lost pork, green beans, oats GI appt 1/12/07: all blood levels normal, growth hormone normal, diet assessment good, bone age = 2 yo next step is rechecking endocrine 1/15/07 trialed white fish 1/24/07 trialed oranges scoping 3/14/07 Quote Link to comment Share on other sites More sharing options...
Erinbean Posted March 15, 2012 Report Share Posted March 15, 2012 Hi! So I see that this post was sent years ago, and this reply may never be read, but I have a 2 year old with polymicrogyria and am considering hyperbaric therapy. It is not covered by insurance and very expensive, so I was just wondering if you feel your child experienced a lot of positive changes with the hyperbarics. Any input you have would be appreciated. Thank you, Erin Quote Link to comment Share on other sites More sharing options...
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