Thursday, April 22, 2010

For the first time in three years...

We are able to take Charlie out in the front yard without having a death grip on his hand to keep him from running away. If that isn't blogworthy, I don't know what is.

Wednesday, March 31, 2010

Stem Cell Therapy for Charlie's Autism

Apologies to all that follow this blog and are going to be notified of this post. I've posted a message on an Autism discussion board and my post was too long to fit, so I'm posting it here and posting a link there. Feel free to disregard...

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I recently looked into the process of stem cell therapy for Charlie. There are several cases of kids going out of the country to receive treatment for Autism. I've found examples of centers in China, India, Panama, Costa Rica, and more. I decided to do a little investigation into what it might take, the ethicalities, and all that, so I emailed a highly renowned place in China called Beike Biotech (http://www.beikebiotech.com/). Here's the response I received:

___________________________

Dear Matthew,

Thank you for your inquiry about stem cell treatment for Charles. My name is Casey and I will be the patient service representative assisting you through the medical and registration process. My job is to make the registration process as simple as possible and answer any questions you may have.

Below, I am providing some general information about our treatments followed by information more specific to your inquiry. I have also attached to this email information and press booklets. The Beike Treatment Guide booklet contains more specific treatment and registration information and you can find many news stories about our past patients in the Beike General Press booklet. Also, we are always uploading newly completed video interviews of patients of all diseases. You can see a collection of these video interviews at: http://vimeo.com/user290654/videos. Please let me know any questions you may have after reviewing these booklets, the patient videos, and the email below.

While stem cell treatment is still a very new science, our stem cells have been used to treat over 6000 patients with various diseases in more than twenty hospitals. Since 2006, over 1100 of these patients have come from countries outside China and we are currently offering treatment to international patients at five centers in China and one center in Bangkok, Thailand. A majority of the patients treated, depending on the disease and/or injury, state they regain some type of function in terms of movement, balance, sensation, vision, and body control.

Our patients are treated using stem cells from the umbilical cord, umbilical cord blood, and/or the patient’s own bone marrow. Throughout the process, the umbilical cord blood stem cells are never frozen and are kept fresh to ensure the cells help heal to their full potential. For most diseases and injuries, we may recommend 5-8 stem cell injections. Treatment takes about one month and depending on the number of injections and treatment center, the cost of treatment ranges from US$17,000 to US$34,000. After our doctors review medical information and make a treatment recommendation, I can then discuss more specifically the cost of the proposed treatment.

I have provided below some links to past Autism patient contacts, experiences, news articles, and blogs that we encourage you to review.

Aine is a young girl from Ireland that received treatment in Qingdao in July 2009 for both Autism and Epilepsy. The family kept a blog during the treatment and you can read their updates by using the link provided below. Aine's mother, Caroline is very open to speaking with other parents interested in treatment and is happy to answer any questions about her daughter's condition and their experience living for a month in China. Aine's and Caroline's blog and email addresses are below.
Caroline's Email Address: carolineandmatt@hotmail.com
Aine's Blog Address: http://stemcellschina.com/blog/aine

Hagan was born 2003 and came for treatment in March of this year. Since his treatment, his mother Aliya has noticed very big improvements in his speech, behavior, and understanding of the verbal language. She is interested to speak with parents of other autism children that are considering treatment. Please feel free to email her and ask any questions you may have about her and her son's experience. Her email address is aliya_aliyeva2006@yahoo.com

Calsun was our first patient to be treated with autism. You can read more about his treatment and resulting improvements on his patient experience page at http://www.stemcellschina.com/index.php/en/autism-mr-wang . His poor social skills improved after stem cell therapy, allowing him to speak in whole sentences. His attention spanned improved so that he could attended a normal school.

Maria is a child from Romania and will be returning this year for her third treatment. Before coming for treatment she faced learning, social interaction and communication problems. After the stem cell therapy she became more relaxed, socially more active and her learning ability improved. To read more about Maria's improvements please go to http://www.stemcellschina.com/index.php/en/autism-ms-maria .

Mitchell is an Autism patient from Australia who was diagnosed with Autism after suffering from bronchiolitis right after birth . He was very hyperactivte and and after our treatment his parents stated that he calmed down a lot and became more aware of his social surroundings. You can read up on Michell's experience at http://www.stemcellschina.com/index.php/en/autism-mr-pacis .

Mark Yu developed Autism after a MMR vaccination at the age of 1 1/2 years. After coming for treatment he showed improved behavioural and communicative skills. He returned for treatment twice and you can read his experience at http://www.stemcellschina.com/index.php/en/autism-mr-yu .



Mason Badger is another patient that has returned for treatment multiple times. Below is an article written about him before he came for treatment. This patient had issues related to muscle tone and his mother has stated he had improvements in those areas.

Mason’s News Article: http://www.news-tribune.net/local/local_story_163105132.html

Zach is a patient that has hypotonia as a secondary symtopm. His mother, Olifia, is very open about discussing her son’s experience and you should feel free to email her any questions you might have.

Olifia’s Email Address: setiadio@gmail.com

Finally there is Megan, a young girl with Septo Optic Dysplasia from Northern Ireland. I share Megan's story with you because besides her vision problems, she also displayed behaviours similar to those seen in children with autism spectrum disorder. You can now view Megan experience page at stemcellschina and also her father full length interview. I hope this is helpful and informative to watch. The links to Megan's patient experience and video are below:

Patient Experience: http://www. stemcellschina.com/index.php/ en/patient-experiences/optic- nerve-hypoplasia/1197-traynor- sod
Video: http://vimeo.com/ 6411138

I am providing you with the link to our online Initial Medical Information Form. Please go to the provided web address and fill out the form with as much medical information as possible (I can provide a Microsoft Word version of this form if you have any trouble accessing it). There is no cost or obligation to receive treatment when this form is submitted to us. It will only be used by our medical staff to help provide further treatment recommendations and advice. You will be sent a confirmation from us when the form has been received. As soon as you wish and are comfortable doing so, please submit this form. Please note it usually takes 1-3 business days for the doctors to review the medical information and it is possible they will request more medical information if needed. If the doctors confirm that treatment can be provided, I can then continue assisting you with the registration. The Initial Medical Information form can be accessed by using the following web address: https://stemcells.wufoo.com/forms/beike-medical-form

This medical form contains a section labeled “Additional Medical Files”. In this section, you will be able to upload test summaries and doctor reports from you hospital directly into the online medical form. For all patients, our doctors will need to review discharge summary of important treatment (such as any surgeries or hospital stays), a diagnosis report from a doctor, and/or a medical report from a doctor about the patient's current condition. For Autism, there are additional mandatory medical files our doctors will need to review. These are listed below. If you have trouble receiving these documents or sending them to us, please let us know.

Mandatory Medical Documents: Test or doctor's summary of a brain MRI or CT.

If Applicable: ADIR, ADOS.

We know that many patients and caregivers are interested in visiting a treatment center. Our treatment center coordinators can provide patients with a tour typically lasting 30 minutes to one hour. If you are interested in visiting a treatment center, please let me know and I can provide you with all the necessary instructions for arranging a visitation time. Please note that the visitation must be arranged and confirmed at least 15 days beforehand and the visitation can only be arranged after the patient's full medical information has been reviewed by our medical department doctors.

We encourage you to watch this video so you can learn more about the stem cells and hospital environment. The video is located at: http://vimeo.com/10196529
I hope this information has been helpful. Please let me know how I can assist you further and do not hesitate to send me any questions you may have. You may email me or call any time.
Sincerely,
XXXXXX

_____________________________

If anyone is interested, I'd suggest doing some research and reaching out to these places. I've heard of this therapy costing as low as $10,000, but I'm not sure where and if that was at an earlier time.

Best of luck.

Thursday, March 4, 2010

Dare to Dream

I guess you can't blame us for dreaming, eh?

Monday, March 1, 2010

Ouch... Been awhile eh?





Yes, it's been a while.... what, about 9 months?

I could make every type of excuse, but to be honest, this has just not been a priority. It's been a bit of a whirlwind 9 months. We've gone from losing jobs to starting companies and thrown in a new baby for good measure.

But, like any good addict, we've returned.

So, let me take a moment and update everyone on Charlie. At the last time of posting, we were having some serious problems with Charlie's seizures. We were dealing with his meds, on and off, what to do next, etc, etc, etc. The doctors wanted us to do the ketogenic diet but weren't really sure. We were working with our DAN doctor and trying all sorts of who know whats enzymes and supplements, and just nothing seemed to be working. We had taken him down to no meds for a little while to more or less 'clear out his system.' The results created some of the worst days of seizures we'd had. He was having 3-5 grand mal seizures a day, sometimes just starting to wake up after several hours of being passed out on the couch, only to have another one and drop again.

Shortly before our last post, we decided to resume the only med that had ever really had a positive effect on him - B12 shots. We started them up with the intention of ramping back up his to all his meds. As before, we immediately saw a 'softening' of the seizures and they were coming less frequently -- about one every few days.

We stuck with this over the course of 2 weeks and then one day we just forgot to give them to him. We went for about 10 days when we realized we hadn't been giving him anything. We actually hadn't seen any seizures in that time so I figured I'd just let it run and see what happened.... and here we are.

We're now officially 8+ months without a seizure from a boy that has had at least one seizure (often times 10-20) a week since he was one year old!!! AWESOME! We would've posted this sooner, but really we just couldn't believe that it was real. After three years of dealing with these, it just seemed too good to be true.

Steff and I still have dreams about Charlie seizing. I imagine it will take some time to really believe that this part of our life is behind us. But thank goodness we're seizure free.

So, with the seizures behind us, we've moved on to dealing with some of the other issues, like behavior and speech. He's now 4 and a half years old and is essentially non-verbal. His behavior is still crappy. That's next problem to tackle.

On other fronts, we've officially launched our new company that sells autism toys and other toys for kids with special needs (and kids without special needs as well).

Oh yeah... and we've had our baby - Lucy Kate McGhie.

Tuesday, June 16, 2009

Charlie's First Black Eye

Please let me start by saying I'm going to set the stage for what I'm about to share with you in hopes that you'll all show me a little compassion and understand where I'm coming from while I explain Charlie's first black eye.

First, it's no secret that Charlie is an active little bugger. Anyone who's spent more than ten seconds with him can vouch for that. While his activity levels are on par or exceed those of typical children at his age, his coordination does not. The combination of the two of these elements basically means Charlie is in the injury business.

Second, Charlie is a brute. He eats triple what Winston eats in any given day. He's officially heavier and wears bigger clothes than Winston and they are 22 months apart. I don't get why he's so beefy.

video

Third, Charlie loves to play physical. He terrorizes Winston with his thug-ish behavior because he's smart enough to understand he can take him. Winston is scrawny. For example, the other day, Charlie gave Winston a little 'prodding' to tease him. This begun the fight. Winston grabbed Charlie's arm and yanked it, Charlie smacked him upside the head and started to run, and then (this is the good part) Winston pounced on Charlie's back and basically rode him piggy back beating on him, while Charlie ran away, carrying Winston on his back, laughing. Hard not to laugh while you're trying to discipline. Alas, I digress.

So, this being said, yesterday Charlie was in a physical mood so that's when good old Dad is supposed to step in and rough house for a little while to help settle him down. And step in I did. We rolled around doing 'steamroller,' did flipsie-daisies, practiced some linebacker tackles, worked on our wrestling starts, etc. Well, after playing around for a while, I decided it was time to wind down, but thought one more good physical maneuver would round us out... and that's when it happened. Heads collided and one was softer than the other one. The result -- a black eye.

Picture below...

























Almost there...




























Wait for it...






















Ta Da!





Yes, Charlie doled out his first black eye... to his Dad. And yeah, I know, it's not all that bad, but c'mon, all Dad is asking for is a little sympathy. Although, I imagine it was pretty amusing for Steff to come downstairs and see Dad rolling around on the ground, clutching his face, and Charlie standing by trying to console him. Maybe that explains why she was laughing...

Tuesday, April 21, 2009

Today makes...

EIGHT days seizure free. We only have him on Vitamin B12 and folocal. Thanks so much for all the prayers and support! Keep praying that it will last!

Wednesday, April 8, 2009

Charlie Update - Hope is kindled

We thought it would be appropriate to follow up to the last post with a current status. We've started to see some positive motion with the seizures.

About a month ago we started to carefully document what meds we were giving Charlie, his daily mood, and the number of seizures he was having. For those who may not know, Charlie has two primary types of seizures: clusters of petite mal seizures (http://www.mayoclinic.com/health/petit-mal-seizure/DS00216), and grand mal seizures(http://www.mayoclinic.com/health/grand-mal-seizure/ds00222).

We recently took the data we've collected and graphed it out to look for trends in what was happening with poor Charlie. I thought this was interesting and so we share...



As we graphed this, we saw three phases occur as we changed meds, etc.

1. Previous - 3/19: Full Meds - This is pretty much what was happening on the full medicine regiment since initiated (over 6 months ago). He was having 1-3 seizures a day of both varieties. His mood was up and down. His sleep patterns were all over the board and there was very little stability. This is what prompted us to just drop everything and start over so we could figure out what was going on with him...

2. 3/20 - 3/31: No Meds - Once we took him off the meds, the massive seizures ensued. He was have major Grand Mal seizures many times a day. These seizures were more severe than we've ever seen with full body convulsions lasting between 30 seconds to 2 minutes. Also during this time we saw an almost total loss of speech. When he'd have the big ones, sometimes he'd sleep for 3-4 hours afterwords. Someone who had seizures likened the physical toll of a Grand Mal to running a marathon. Despite the physical toll, he was very happy between seizures.

3. 4/1 - current: Started back with the first med, B12 shots. It was a toss up which med to start with. We talked about it and felt like the B12 shots were our best option, so we're starting out light. We're doing a shot every 5 days and since starting those shots, we've only seen one cluster of 35 Petite Mal seizures in the last 9 days. In this time we've seen his verbal communication returning, which is very positive. The interesting dynamic you can also pick out of the graph is that his mood correlates with the Grand Mal seizures. When he's not having seizures, he's more grumpy than normal and starts displaying behavioral issues like hitting head, tantrums, etc. We're still working to determine if it is behavioral or if there is pain/headaches, etc. Many seizure victims have correlated headaches and migranes to the seizures, so occasionally we give him Motrin, in case that is the reality, and he is happy. This sorta makes us think there's some pain/pressure that builds up that the seizures release, and when not having them, it is painful. Such a double-edged sword.

Anyways, we wanted to share the update. We're hopeful that we can keep this streak alive and keep him seizure free. It would be the answer to countless prayers, blessings and collective fasting. We appreciate all those who have taken part and continue to act on Charlie's behalf. We are too grateful to ever appropriately communicate our love and thanks.