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Archive for April, 2009

jd-zoo-tree-1As you know, we’ve been waiting for a consultation with a new doctor in Pittsburgh. Well, we had that consultation yesterday – we got moved up on a cancellation! Before I jump into that news, I’ll review. 

RECAP

 I pursued a new doctor to check into alternatives to the protocol Dr. K had Jordan on. Which was:

  1. Nutritional Support – Dr. K added a couple supplements to what we were already doing when we first saw him – that’s it
  2. Yeast Overgrowth Treatment – we rotated between 3 different ones, including 2 prescription anti-fungals. The prescription anti-fungals made him regress horribly in his speech and behavior. After being on the prescriptions for a month, I took him off to give him a little break and he started speaking more the first day he was off of them and putting 2 words together again. However, it took an entire month and continuing cranial sacral & chiropractic neurology appointments to regain the lost development of the month on anti-fungals.
  3. LDA Shots – That’s Low-Dose Antigen for allergies. It requires prescription anti-fungals and a somewhat complicated 17 day protocol. And total, it takes 3 years. Part of the purpose for these is to calm the inflammation in his body and help to reverse the Th1/Th2 immune response. Jordan has an overactive Th2, and an under-active Th1 – opposite of what it should be and needs to be. This step was required before beginning chelation.
  4. Chelation – treatment to pull heavy metals out of his body, which he is toxic with.

So, basically, with Jordan’s horrible regression on the prescription anti-fungals and my refusal to continue to give them to him (without first checking out other available options), he couldn’t get the LDA shots, which means he couldn’t get the chelation. This basically means, he wouldn’t get treated, at least not with this protocol. It all hinged on the prescription anti-fungals. Bummer, huh. Well…maybe not.

In my mind, I thought, surely there is a way to treat the yeast with natural anti-fungals. And are the shots really necessary? Isn’t there another way to go about calming inflammation and reversing the confused immune system? Hence, I contacted Dr. P’s office and we’ve been waiting for the appointment. Everything I could find online about him and his protocols, it looked like that’s how he treats these disorders. But I couldn’t tell for sure… 

NEW DOCTOR – WELCOME DR. P!

Are you keeping all these doctor’s straight? That makes: Dr. R., Dr. K., Dr. P, and Dr. B. And I haven’t mentioned Miss T and Miss K. for his therapies. Okay, moving on. The new doctor – Dr. P…

I filled out a lengthy questionnaire, including essays, fully expecting to have to repeat verbally everything I had written when we actually got into the consultation. Not so! I like this doctor already.

The first thing he asked was, “Where are you at with Jordan’s treatment right now?” So I told him what happened with the prescription anti-fungals and told him I had taken Jordan off of that protocol and was giving Jordan a break while we waited to be able to talk with him. (But had kept Jordan on the other supplements and had just put him back on the non-prescription anti-fungal earlier this week.) Dr. P. said, “Great. I don’t like the prescription anti-fungals, many kids don’t react well to them. I don’t use them.” Now I’m really liking this doctor! He affirmed my “against medical advice” decision – whew. And, he does treat the yeast, but he uses alternatives, not prescriptions! And he has about 5 he uses, so if Jordan reacts to a couple there are other options to try. That gives me some peace of mind.

Then he went on to explain several other supplements he wants to put Jordan on, what they are, who makes them, what they do, and the order in which to start giving them to Jordan. He asked about Jordan’s diet, said what we are doing sounds great. He emphasized getting good fats in him, using hemp seed oil (has the perfect fat ratio) and nut flours in his diet along with the ghee and hemp milk we were already doing. Does this sound science-fiction yet? I had never even heard of these foods before Jordan. Anyway…

A few of the supplements he is putting Jordan on are specifically to calm the inflammation in his gut & body, help stabilize the cell, and to help switch the Th1/Th2 dominance around. So that replaces the main purpose of the LDA shots!!! No prescription anti-fungals necessary! No shots! No 3 year treatment plan just for shots! No 17 day protocol for each and every shot!

Once Jordan gets established on these supplements and there is time to see how he does on them and make sure he adjusts and isn’t reacting, and then we will start chelating!!! That means getting the heavy metals out of his body, cells, and brain. He is going to use OSR as the chelating agent. It’s new. It is fat soluble instead of water soluble (other chelating agents such as DSMA are water soluble) which means it can get INTO the cell, and get metals and free radicals out of there – very critical. Being fat soluble also means it crosses the blood/brain barrier so it can get the metals out of the brain – also very critical. And it has NO lethal dose value, which means it’s totally non-toxic. Very cool. He may use another agent as well, depends on the heavy metal test I do and the results. Yes, me, I do the test. Since Jordan’s problems started so young, it’s a safe bet that his heavy metals resemble mine fairly closely, with some metals from vaccines added to him.

And the best news of all…this is a doctor who “gets me”. In 2 ways:

1) He jumped right in to exactly where we are at with Jordan’s treatment, no more waiting and going through all the first steps of the dietary measures, cleaning up the home environment, etc yet again.

2) He immediately picked up on the fact that I’ve done tons of research, pay very close attention to Jordan and to what is going on in his body, and know what is going on with his treatment. Dr. P. gave me the guidelines – which supplements/medicines to use, what they do, and what order start giving them to Jordan in – and then “set me free” to proceed with Jordan’s treatment. I get to watch Jordan in order to determine which ones Jordan can tolerate or not, how often to rotate the ones that need to be rotated (within guidelines), determine when Jordan is adjusted to the main supplements to where he would be ready to start chelation, etc. Of course, any questions I have they are available to answer them. But it is such a HUGE relief to know that when I sense something is not right for Jordan – I can stop it or change it! No more waiting for doctor’s orders. And when I see something is really good for him – I can keep it up! No more waiting an entire month for the dr’s appointment to get them to change one little bitty thing (or huge thing as the case may be). No more paying lots of money to not be listened to when I tell them something is very wrong. No more not being able to ask, “This doesn’t seem to be working, is there another way to go about accomplishing this goal?” Yes, I’m VERY excited about this new doctor!

After he went through ALL of these things – and there was A LOT, he asked me if I was overwhelmed with it. Nope! Not a bit! It’s so great to have someone who knows be able to tell me which supplements Jordan needs, which ones are the best, what order to do them in, etc. What a relief! I don’t have to figure that all out on my own. Now the thought of that – all the research, all the intricacies of medical treatment and the tremendous load of responsibility – is overwhelming. And I’ve certainly thought it. I haven’t just thought it, I lived it for the first year and half of Jordan’s life and I don’t want to go back. Maybe that’s why I’m so confident moving forward. It doesn’t overwhelm me or scare me a bit to be this involved in decisions about his treatment. I wouldn’t want it any other way. I know Jordan the best of anyone. Who better to see how he’s responding and adjust accordingly. Sure there will be moment of doubt. Moments, even days, of unknowns as we go through ups and downs and when some supplements/medications work, it may look like a bad reaction instead of the good that it is actually doing. I’ll certainly need wisdom. And the new regimen of supplements, timing them throughout the day – with meals, empty stomach, on food, in drink, through syringe, rub on skin – and tracking them through weeks and months for rotating, starting, stoppijr-jd-reading-books-1ng, restarting, and dosing changes is daunting. But, that’s okay; we’re up to the challenge! It’s way better than figuring everything out on my own! But still pray for endurance, wisdom, and cooperation from Jordan 🙂  Poor little guy doesn’t always love medicines being mixed into every drink or bowl of food (actually he hates it, but tolerates it as long as he doesn’t have to watch you add it) – although he generally loves drinking anything out of a syringe and having things rubbed on his skin 🙂 Hopefully, nothing we add to his regimen will change that.

I like the new protocol. It addresses what needs to be addressed (same issues as the other treatment protocol), does it with more natural means, and we can begin chelating a lot sooner. We’ll see if it works and if Jordan can tolerate it…

 

P.S. After I receive all the supplements and stuff next week, and have it all organized, I’ll post our new daily regimen.

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“It’s not that our opponents are ignorant, it’s just that so much of what they know, just isn’t so.” –President Ronald Reagan

Many days it can be frustrating to know what I know about health, autism, sensory issues, allergies,  their causes, and live in this society. There is so much misinformation about treatments for autism and developmental delays, etc. The main push is: go do some therapies like ABA, physical therapy, occupational therapy, speech therapy, socialization, etc. And the sooner you get those therapies for you child, the greater chance there is for a better outcome. Let me be clear about this – I am NOT against these therapies. They CAN be helpful. However, they are only minimally helpful if that is the ONLY treatment these children get.  If these children get other treatments FIRST, or even simultaneously, these forms of therapy will be exponentially more helpful. But, often times these therapies are the only thing moms hear about to help their child.

First we must get rid of the things in the child life that are harming the functioning of the brain and body. Things like food allergens (casein, gluten, and others specific to the child), foods that in general harm the body and alter how it functions (sugar, caffeine),  and chemical inputs (perfumes, cleaners, detergents, soaps, lotions, etc that are all toxic). These are all things that can be done at home relatively inexpensively. And these are very critical first steps, and can be done even before (or without ever) starting treatments with a doctor.

Second, we need to address what is physically wrong with the child. For this, additional professional help is needed. Is the child’s head misshapen or are some of the cranial bones overlapping or out of place? (If so, the brain is likely not getting nutrients to all the right places in adequate amounts).  Is there an overgrowth of yeast? Does the child have heavy metal toxicity? Does the child have chronic diarrhea or constipation? What does the child’s vitamin/mineral profile look like?  And other similar things.

These issues are critical to treatment, and all the therapies (physical, occupational, ABA, etc)  in the world will not correct them. Not only will it not correct them, until these issues are addressed, the brain’s functioning is compromised and the therapies will only be minimally effective. They may show some good results, but if these things were addressed the results would be so much more!

So the media is celebrating new advances and cutting-edge therapies for autism. For example, just last week the Today Show did a special on how they are now using robots to teach autistic kids socialization skills. It’s so cutting-edge and exciting. Before there was no hope for treating autistic kids, but now there are robots!!! And there has been 60 million dollars donated to this research about using the robots.  But they are missing the boat. If the things compromising the functioning of the brain and the physical problems are dealt with FIRST, then the therapies (including robots) utilized – to teach the kids what they missed learning when their brains couldn’t function properly – that would be a breakthrough!

It isn’t that these scientists, doctors, moms are ignorant, not at all, in fact they are very knowledgeable, they just have wrong information or are missing information. Ronald Regan said it perfectly, “so much of what they know just isn’t so.”

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The cranial sacral treatments we did from December through February helped tremendously, as you noticed in my posts in February. We started the anti-fungals the end of February and everything fell apart. He regressed terribly. His speech didn’t disappear, but he stopped advancing and regressed some and his behavior went downhill – lots of tantrums again, head banging, wanting to be held and carried a lot.

Now we’ve made it to April and he has been off the anti-fungals for 3-4 weeks. He is pretty much back to where he was the middle of February. We’ve been continuing the cranial sacral appointments all this time. He’s doing great again. He is gaining speech again and his behavior is improving. Mondays cranial sacral appointment (Dr. R.) made a tremendous difference. The appointment Monday was one like I had never seen before. Jordan went through 3 stages in the appointment. He was quiet, sullen, and shy at the beginning (fairly normal for recent weeks). He got a little fussy and cranky when Dr. R tried to evaluate him and wouldn’t cooperate. Dr. R then held him by his ankles upside down, which Jordan thoroughly enjoyed. Dr. R would relax his hold on one leg and then switch, basically his legs looked like he was walking  but upside down. The more he did this you could actually see Jordan’s range of motion increase  and stiffness in his body decrease. His back and neck arched and extended more each time – a very good thing. Jordan was okay while upside down  and Dr. R did this for a few minutes. After he put Jordan down, upright, within a few seconds Jordan was very aggitated, fussying, staying close to the ground instead of standing and walking, and banged his head on the lightly carpeted floor twice, hard, a couple minutes apart. After the second head banging, Dr. R sat Jordan on his lap and worked on Jordan’s skull for quite a while. When Dr. R was done, Jordan was happy, jovial, and bounced off to play with the toys in the room. The change in him was amazing!  This week, he has not banged his head once, not even during his tantrums. In fact, I even saw him start the motion once and stop himself before his head hit the floor 🙂  This is a very encouraging and pleasant change. It was horrible watching and listening to his head bounce off the floor like a bowling ball. However, I had long since given up on stopping him. No matter how many times I’d stop him and pull him away, try to hold him and restrain him, he’d fight me until he got away and head straight for the tile floor. Hopefully our days of head banging are going to be few and far between, if not gone forever!

Although I say he’s pretty much back to where he was the middle of February, there are some differences. With his speech, in February he was saying entire statements when he combined words like, “Read a book” or “There you go” (as he handed me his empty plate) now he is missing connection words, but gets more main words such as, “Mommy, come help down chair” (when he needs me to help him down out of his chair). He is using more variety in his language and can communicate just about anything he wants to now! He’s even started with the, “Watch, Mommy” for all his new (or not so new) feats. You may not realize why this phrase is exciting. Not only is it great he has the language, it’s really great because it means that he’s far enough away from me that I can “watch him” since I’m not holding him, or more acurately, he’s not clinging to me screaming like banchee every time I attempt to put him down. He’s actually off on his own playing! Very exciting stuff! You just need to know a few quirks like “strawberry” can mean “strawberry”,  “blueberry”, “blackberry” or “raspberry”; “juice” could mean “juice” or “water”. With his behavior, tantrums, fear, etc he is not quite back to where he was in February, he’s still more moody and sullen, but in the last week has made great strides in the direction of happiness and independence – thanks to his cranial sacral tx on Monday! It’s incredible to hear his great belly laugh quite regularly 🙂

I had been going to give the prescription anti-fungals one more try so that he could get the LDA shot, but he has been doing so great off of them and they affected him so severely we have decided to abandon that line of treatment completely and go for a more natural route. We will keep it in the back of our minds as a last resort should we need to come back to it. Currently, we are giving him a rest this month, keeping up his diet and cranial sacral appointments, and doing his brain therapy exercises while we wait for the consult with the Pittsburgh doctor the end of April. Oh, we did just start (this week) a new natural detox supplement called Neurocleanse. So far we have seen good results (a substantial increase of horribly stinkin’ poop which is great – that means his body is getting rid of bad stuff) and no negative reactions!

So that’s the latest, thanks for keeping up and praying for Jordan and us!

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jordans-bread

"That's my bread"

What does our typical day look like? What do we eat? I’ve gotten these questions many times, so I thought I’d share.

Supplements and Prescriptions Jordan is taking:

L-Glutamine – an amino acid that helps heal the gut wall – 2 times/day.

Digestive Enzymes- enzymes that help him break down his food and absorb the nutrients – every time he eats

Fish Oil – essential fatty acids, Omega 3 & 6 particularly, that make up the cell wall of every cell in the body. Fights inflammation, strengthens immune system, coats nerves so that impulses can communicate correctly, necessary for brain growth – 1 tsp./day

Probiotic – the good bacteria in the body’s gut – 2/day. (Given at a different time than the anti-fungals or S. Boulardii)

Nystatin/Diflucan/or Saccharomyces Boulardii (rotating)- the good yeast in the body’s gut and fights bad fungus – 1/day. Nystatin and Diflucan are prescription anti-fungals. These prescription anti-fungals completely messed Jordan up. He was only on them for 1 month, but he totally regressed, lost all his speech and emotional stability gains that he achieved between December and April. It took us about 10 months to gain back what he lost while on the anti-fungals for one month, it was a hard road and he struggled so much to gain back what he gained so quickly the first time. I pulled him off the program the DAN dr had him on. I retained the nutritional supplements, but no prescription anti-fungals and no LDA shots. I sought out other options and went an all natural route, it’s working great!

FungDx/CanSol (rotating) – all natural/herbal anti-fungals.

Electrolyte

Hemp Milk – although a food, I list is as a supplement because I get it in him any time I can because of the Omega fat ratio. It has the good Omega 6’s, not the polluted and damaged ones we are normally overdosing on in the American diet.

Multi-vitamin

OSR – an antioxident that is also a chelator, pulling heavy metals out of the body.

 

Exercises

If I were to describe these, most of you would think I’ve completely fallen off the turnip truck, as my Dad says. However, there is no arguing with the results we are getting from them. The theory behind them is to stimulate the body in specific ways to develop the deficient pathways in the brain. These have been assigned to Jordan by his cranial sacral doctor/chiropractic neurologist to stimulate areas that Jordan specifically needs to improve. So at the risk of many of you thinking I’ve lost my mind, here we go.

I hang Jordan upside down by his ankles, swinging him back and forth and in circles.

We “fly”. Jorday lays on my arm belly down and we zoom around the house looking for his blanket (or other favorite toy or pictures) anything to get him to extend his head up and back.

We have crawling races around the living room. (I now have a hole in the knee of my favorite jeans 🙂 )

I lay him on an exercise ball on his back and roll him back an forth and try to get him to reach backward to grab a toy on the floor.

I lay him on his stomach on the exercise ball and try to get him to lift his head and look at things or grab for a toy.

We play astronaut. I pick him up with his back toward my chest and grasp each of his thighs firmly so he’s in a seated position. Then swing him back and forth and – eventually, hopefully, upside down back over my shoulder. Right now he is WAY too scared to go very high, or fast, but he’s improving.

Recently we have added assisting him with doing sit-ups (where I pull him up as he hangs onto my fingers) but he’s pretty much like a wet fish just flopping and not joining in at all and his head lags way behind. We try one and he starts screaming. I pin his feet down and try to keep trying to do them, but we don’t usually get very far.

We have several others sprinkled in that we do occationally but these are the core ones we try to do daily.

We work them in throughout the day, but especially at night before bed time. Our living room is now littered with exercise balls of various sizes and a mini trampoline.

 

Foods

What we Don’t eat:

He is allergic to:

Dairy  – casein and whey proteins and anything that has them in it. Including goat milk. ie: cheese, yogurt, butter, ice cream, caramel, graham crackers, most commercial breads, most commercial baked goods, etc.

Gluten – (maybe) – so we eliminate it since the protein is so similar to dairy and can cause other problems in the brain, this includes wheat, barley, and others

Oats – in their own right, not because of gluten cross-contamination

Eggs, Yeast, Buckwheat, Honey, Food Colors, Pineapple, Pear,  Chocolate, Peanuts, Ginger, Gelatin

And a bunch of other things we haven’t identified yet. We’re careful of beef, he used to be very allergic to it.

We severely limit refined sugar. We do NOT eat Splenda (sucralose), or Nutrasweet (aspertame) – both very bad, sugar is actually better.

 UPDATE: As of October 2009, his allergies are beginning to resolve. I haven’t been too brave to try things, but he is no longer sensitive to beef, eggs, or oats (or at least not when he just has them once in a while).

What we DO eat

We mainly eat a whole foods diet. That means food in their whole form, as close to the way God made it as possible. Not processed, or only minimally processed.

Fruits – the ultimate fast food. It takes all of 3 seconds to peel a banana! Blueberries are his favorite!

Milks – almond milk, hemp milk, coconut milk

Organic Oils – olive, coconut, grapeseed

Sweeteners – stevia, xylitol, agave nectar, real maple syrup, (Jordan can’t do honey, but the rest of us do)

Grains – quinoa, amaranth, millet, brown rice, corn

Seeds – sunflower, pumpkin, sesame

Flaxseed –  a great replacement for eggs when cooking and SUPER healthy. I know, it’s a seed, but we eat it so often I listed it seperately.

Nuts – pecans, cashew, almonds, brazil (Jordan refuses to eat these, but the rest of us love them)

Almond or Cashew Butter – we use this all the time. Again, I know it’s a nut, but we use it so much I listed it seperate.

Ghee – milkfat without the protein, organic of course

Veggies – The rest of us eat a whole range, but Jordan eats a couple. potatos or sweet potatos cut, baked, and salted as fries. Corn (I know, actually a grain or starch), tomatos and any veggies mixed into a marinara sauce or salsa. I’m starting to slip things like kale into his morning smoothie. Once in a while he’ll slip something else in, like bok choy or carrot, but that is highly variable.

Herbs – garlic, chives, rosemary, cilantro, basil, oragano, thyme, parsley, cumin – I think that captures the most commonly used. And we use these a lot!

Meats, grass-fed – venison (ground, steaks, chopped, etc), turkey, chicken (only occationally since we can’t afford organic grass-fed) although we do use organic free range chicken broth liberally (no boullion cubes though). We do eat eggs, free range.

 

Menu Samples

Breakfast Options: smoothies, fruit, special corn flakes (ingredients as follows: cornmeal, grape &/or pear concentrate, sea salt) with alternative milk, or pancakes (made with allowable grains, milk, flaxseed, vanilla powder, etc. Took awhile but I now have a great recipe).

Snack (mid-morning and mid-afternoon): fruit, nut/date bar called LARAbar, fruit leather, rice/nut chips

Lunch: left overs from dinner, fruit, applesauce, pancakes, fries (the homemade baked kind)

Dinner: taco salad, venison burgers, spaghetti made with quinoa or rice pasta, grilled meat and veggies (a grilled rosemary and garlic venison steak is one of our favorites – Jordan’s too), stir-fry over brown rice (specially made sauce of course), vegtable soup, quinoa mexican “goulash” (a creation of my husbands that is a family favorite), turkey & grain meatloaf (agian, a creation of my husbands). To name a few of our current most common meals. It tends to change seasonally and as we find new favorite ingredients.
 
*Note: according to the boys, “Planes and Paint” are the blue corn chips and avacado & salsa we have with taco salad.  And spaghetti is “Worms and Dirt”.  Our green smoothies are “Monster Juice” and well, if it comes out more yellow, then it’s “Monster Snot”.  Have I mentioned I love having boys 🙂
 
Drinks: V8 Fusion (great for hiding medicine, but not ideal because of the sugar content), water, smoothies, “milk” shakes, and most recently peppermint tea

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We have hit a roadblock in Jordan’s treatment and progress. Jordan’s doctor first wants to treat his allergies then his toxicity issues, including heavy metal toxicity. So we are starting with shots that are suppose to reduce or eliminate his allergies (over the course of a couple of years). For about 6 weeks we’ve been working on a treatment protocol for Jordan to receive on of these shots – an LDA shot. That’s Low Dose Antigen, an enzyme-potentiated allergen shot. In order to receive it there is a protocol he has to meet for the 9 days before the shot. It goes something like this. 9 days before – stop fish oil supplement, start on prescription anti-fungal drug. The day before, the day of and the day after the shot, stop ALL supplements and prescriptions and all food or drink has to be cooked or boiled. Well, we’ve made it through to day 8 or 9 a few times. Day 8 is the day before the shot, day 9 is the day of the shot. Only to have him get a cough or runny nose or diarrhea – all reasons that prevented him from getting the shot.

After the last aborted attempt at the shot, I stopped Jordan’s anti-fungal medication to give him a break and started him on his fish oil supplement again. Guess what…that day he started talking MUCH more again. New words. I hadn’t heard a new word in over a month. Two, three, and four word combinations! I hadn’t heard those in a month either. Jonathan took notice too and we both marvelled at what we heard coming from Jordan’s mouth.

So, which is he responding to? The anti-fungal bothering him, or the fish oil helping him? I’m inclined to think it’s both. And it makes me really not want to keep him on these prescription anti-fungals. I spoke with his doctor, but didn’t receive a satisfactory answer. He said to try Diflucan at 1/2 a dose. The appointment before, he had said never to give him Diflucan again because it was giving him diarrhea…hmmm. It was very yeasty diarrhea so I hadn’t been real worried, I figured it was doing it’s job. So, maybe a 1/2 dose will do the trick. But I’m afraid that somehow it is affecting Jordan’s brain since it is affecting his speech so much.

I feel a bit confused and frustrated. I don’t understand why we have to do the allergy shots in order to detoxify him.  I just know that is the order this doctor does it in #1 nutrition (we were already doing all of his suggestions when we started with him) #2 allergies controlled #3 detox and heavy metals. So, I’ve been back to pulling nearly all-nighters researching, and we have been thinking this over.  Our decision – we are going to follow the doctor’s suggestion one more time and see what happens. For now I’m giving Jordan a little bit of a break from the prescriptions before we give it one more try. In the mean time, I’ve scheduled a consultation (a month from now) with yet another doctor – one in Pittsburgh who treats with natural anti-fungals, not prescription,  doesn’t treat with allergy shots, and jumps on getting the toxicity out right away.  I’m more comfortable with this new doctor’s treatment protocol and feel that he is more up-to-date on his research (quite a feat considering Dr. K is very cutting-edge). However, nothing is guaranteed, so I want to give Dr. K a valiant try before switching mid-stream. I know he is a very great doctor, one of the best, with a great success rate. But, if it isn’t working for Jordan…

That’s where we are. Keep praying!

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