Ricci Kilgore: Another Patient of Dr. Rader

A month from today's date, Soren will be getting his 4th stem cell injection in the Dominican Republic. I am very excited, hopeful, but nervous. We want so much out of these next two injections (we've raised enough money for these next two and then we plan to evaluate their efficacy). I get nervous that, no matter how hard we try, Soren just won't every become close to a typical kid.

But then I see this. My friend Azita forwarded me this

You Tube video

This is a young woman named Ricci Kilgore. She is one of Dr. Rader's patients who is experiencing a remarkable recovery after suffering a devastating spinal cord injury.

It renewed my hope. It brought me to tears. This is what I want for Soren.

Amy

Neurologist Appointment

Soren had his 6 month check-up on Thursday. Aaron and I both went to the appointment and we had quite a list of things to talk about.

We've been wanting Soren to get another MRI and EEG/video-telemetry. With the latter, they do a regular EEG, but it lasts at least 3 days. They also video tape it so that when he has a seizure, they see what it looks like on the outside as well as the inside. The reason we want this is that Soren's seizures have changed in nature, getting more frequent and strong. I actually did a summary of Soren's seizures the past year and, when you boil it down like that, things haven't been going so well. Soren was seizure-free of Infantile Spasms and Tonic-Clonics for a year when he was on Zonegran and Lamictal.

Then last March-May, we weaned him from Zonegran. The good thing about doing this is that Soren became more alert and started turning to his sides. The bad thing (which I didn't really realize until doing this summary) was that the Tonic seizures came back in June and the Tonic-Clonics soon followed. But now with the GFCF diet, the seizures seem to be decreasing. And that's better than adding another drug.

Our hope in doing this testing is that something is discovered that makes Soren a surgical candidate. Yes, I'm saying that we are actually hoping to find something in our son's head that they can cut out and remove. Surgery is, unfortunately, the only known "cure" for Epilepsy. The rest-drugs, diet, voodoo-are just bandaids.

I had asked Dr. Shields about doing these tests again at our previous appointment and he didn't think it was necessary. So this time I brought Aaron to back me up. We expected to have to convince Dr. Shields and had all our arguments ready, but instead he agreed to this right away. Great!

The other thing we wanted to ask him about was Soren's diagnosis. Being honest with ourselves, we know that Soren has Autistic tendencies, but he does not have this as an official diagnosis. So we asked Dr. Shields if, in addition to his Epilepsy, Soren also had Autism. Without hesitation, he said yes.

This didn't make us feel quite as great. Even though we asked for it, it was a bummer to hear it confirmed and confirmed so quickly. However, the good news is that children with Autism get different/additional therapies.

So now we wait to get the tests approved by insurance and the therapies approved by the Regional Center. And we hope that it we get the results we want from all of them.

Amy

Low-Grade Seizure

I mentioned in my GFCF update that Soren had only had 2 seizures in April since we started the diet. Well, he had two more this weekend. And they all had something in common. Soren had a low-grade fever on both weekends when he had the seizures.

The ones in April happened while I was at my cousin's wedding in Lubbock, Texas. Aaron was home with the kids and, wouldn't you know it, Soren had two seizures. Aaron noted that Soren, while not full-blown sick, was running a mild fever.

Then this weekend we all went away for Moira's birthday. We were all sleeping in the same room. I was conked out when in my dream I heard Soren seizing. My brain tried to incorporate it into the dream, but I woke myself up, and there he was seizing at 2 am.

Now this freaked us out because we feared that Soren was seizing at night this whole time we thought he was doing so well. But Soren was a little toasty in the bed, so we stripped him down. The rest of the night and into the day were fine. But then, on the drive home, Soren had another seizure.

Believe it or not, this made us feel better. Since we knew he hadn't had any daytime seizures for a bit, it made us more assured that he hadn't been seizing at night on the sly. When we got home I noticed he was warm again. I took his temp, and sure enough, he had a little fever.

Whatever it was seems to have passed. Motrin helped take his fever down without a problem. I just wonder what those days would have been like if Soren hadn't been on the diet. Would it have been one of those days where he had 9 seizures? While the two we witnessed were lousy, we're glad it was only two.

Amy

GFCF Diet Update

Howdy!

Soren has been on the GFCF diet now for a little over 6 weeks. In that time he has had only 2 seizures!!!!!

I was looking back in my seizure log for this year and was amazed at the difference.

January: 11 seizures
February: 10 seizures (9 of them in one day)
March: 15 seizures

We got Soren fully on the diet on April 2nd. On the 28th he had 2 seizures. He's been through a couple illnesses (a cold, a stomach bug) while on the diet but didn't have the usual breakthrough seizures.

So we're crossing our fingers that this trend continues!

Amy

Dr. Rader ABC 7 Report

Hello all,

A few days ago there was a news report on Dr. Rader and his stem cell therapy. If you are interested in checking it out, go to

Dr. Rader Report

I've always been up front about where we go for our stem cells and the doctor (Dr. Rader) who provides them for us. According to the ABC News Report, he's either a miracle worker or a snake oil salesman. I've actually seen some of the miracles first hand, so you know where I stand. And I happen to personally know the two families involved in the report who have these two very different viewpoints.

The report is actually quite well-balanced. There were fears that it wouldn't be. I've actually been approached by ABC 7 news two times to tell our story. However, due to a bad experience with the press, I was encouraged by Dr. Rader and my friend Azita NOT to speak to the media. Fearing the worst, I didn't.

However, the second time I was approached, I was first called by another friend and fellow special needs mom, Fia Richmond, who was telling her side of the stem cell story to ABC. She had a very negative experience with Dr. Rader. Because of this experience, she started her own amazing organization called

Children's Neurobiological Solutions

Fia wanted me to tell about our good experience with Dr. Rader. However, I knew if any story should be reported, it was Clayton's. Having personally seen this boy first in a vegatative state and now walking and laughing are amazing. I told the producer at ABC that I couldn't be part of the piece and that she should get Clayton. However, I knew that would be next to impossible.

Well, next to impossible happened. ABC was going ahead with Fia's well-justified side of the story. They called Dr. Rader and told him the piece was going to be negative and they only way for him to tell his side was to speak publically. In a possible "damned if you do, damned if you don't" situation, Dr. Rader agreed to speak to convey his side. If when you watch the video he seems a bit on the defensive, I personally think it's because he was feeling very much like he had to defend an attack on what he is doing.

He asked Clayton's family to also be part of the piece because seeing Clayton's success really is like witnessing a miracle. Azita was fearful because of that previous bad experience, but did it out of respect for the doctor that has saved her son. And to hopefully get their message of success out. It's that success that helped us make our decision.

But watch for yourselves. Make your own decisions. That's what we and every other parent who has chosen to go or not go has done. Soren hasn't gotten the full-on miracle yet, but we've seen little miracles along the way. And with these next two injections in June and December, we're hoping to see even more.

Amy

Selling Cels for Soren's Cells!

Hello Everyone!

Well, we're doing it again. Another auction of animation cels on eBay!

My friend Craig Lewis was kind enough to donate a slew of cels to help raise funds for Soren. And then my other friend Anthony Butler was kind enough to put them up on eBay. I'm so lucky to have so many kind friends!

Currently up for auction are cels from "Johnny Bravo," "Powerpuff," "Ed, Edd, and Eddy," "The Smurfs," "I Am Weasel," "Dexter's Lab," and "Rugrats."

Check them out at

Soren's eBay Auctions!

Thanks!

Amy