Monday, December 10, 2012

Friday, November 30, 2012

A.D.D. Be Gone! (And a Food Update ;)

Okay, this will be a quickie since we're off to run a gazillion errands as soon as the littlest guy wakes up from his nap. 

Right before we started the dietary protocol, we were given an assessment from L & N's neurofeedback counselor for L to be assessed for A.D.D.  The counselor and I agreed that L is a textbook case: spacey, hard time focusing, slow at getting everything done (including going on a walk!), indecisive, etc.  The assessment was more of a formality to confirm my concerns so that the counselor could see if there were different areas she should focus on for brain training.  Well, the other day, as I was thinking again upon L and the healing of her nervous tick, I suddenly realized that all of her ADD symptoms were gone! Vanished! She is now an assertive, confident, focused, and diligent child! She is still sweet and compassionate, but other than that, she has a totally different persona!  I was so focused on L's tick that I completely missed noting the other equally exciting healing! Thank you Lord!

Okay, now on a totally different tangent, we tried reintroducing corn a few weeks ago since it's in practically everything processed. That would have opened up the worlds of tortillas and chips, cereal, limited candy, and pasta. Hooray! However, after a week or two of bringing it back in, we noticed lack of body control again (not so much in spatial planning, but in being overly rowdy) and wide emotional mood swings (elated to weepy). Plus, Brent and I agreed we just didn't feel good. We felt bloated and heavy again. That's interesting since that was such a normal feeling before that we didn't notice it. Now we see a BIG difference! So, corn was moved out of the cupboards again, with the hope of having occasional quinoa pasta (made with cornstartch) since it's a minor ingredient and it is highly processed corn which shouldn't be too inflammatory in small amounts.  We have given it a couple of weeks since then, and now we see him being back to how he was before. He's much more emotionally stable and more in control of body function.  So, even though he tested negative for a corn allergy in his bloodwork, there's obviously something going on there!

Now that it's been a couple of weeks of a stable diet, we are attempting to reintroduce citrus. We are taking it very slowly, and starting with the clementine oranges that are in season (and on sale!) here.  We'll see how it goes on this next step of our eating adventure!  :-)

Merry Christmastime!
Hill and The Gang

Thursday, November 15, 2012

Two Unexpected Healings!

We are plugging right along with the dietary protocol as we wait for our appointment with Dr. Russell in Texas. However, in the meantime we have had two unexpected recoveries!  First off, N's twin sister "L" has struggled with a nervous 'tick' since infancy; one she could not control nor even feel as it was happening. At first she only did it at home and we hoped she would grow out of it. Unfortunately it has gotten worse and more pronounced and then, last spring at her ballet recital, she actually stopped dancing and started ticking on stage. It was heartbreaking. She had been doing neurofeedback for over a year in hopes of helping her, but it didn't seem to be doing anything positive. Well, she informed me yesterday that she can now recognize when it's about to happen and stop it! She also realized that she pretty much had a constant stomach ache before, but she just accepted it as normalcy. Now she's realized that it was defnitely not normal and can pretty much pin it down to a dairy allergy!  Hallelujah! I just want to cry every time I think about it!

The other healing came in the form of my own body. For about 2 years I have been taking synthetic thyroid hormone for an underactive thyroid.  The medicine is designed to fully kill off your thyroid and then act as a hormone replacement for the rest of your life.  I started feeling numbness in my arms and legs along with dizziness and other symptoms. The bloodwork ruled out diabetes and MS ( thankfully!) but it showed my thyroid levels were now too low! We reduced my meds to the lowest possible level and it barely raised my thyroid levels. I did some more research and found many cases where people testified that eliminating wheat and gluten somehow healed their supposedly dead thyroid to start functioning again. I made the decision to go ahead and stop my medicine and dontcha know? My symptoms went away completely. I feel great and not at all fatigued or cloudy like I did when I was first diagnosed. I am scheduled to go back in two weeks to have my levels checked again, and I can't wait to see what they are!  It makes sense since the medical community now considers thyroid problems to be auto-immune related!  It's all coming full circle and it's all making so much sense! Praise God!

Side note: If you didn't see my earlier Facebook update, I have now added a tab at the top with a lsit of our current favorite foods as well as  links to great recipes and resources.  Be sure to check it out and comment or email me with additional items that I can include. I would love for this to be an interactive resource board! I may do a little facebook research, and if there aren't any good clean diet recipe sharing groups, I may just have to start one :)

Have a wonderful weekend ahead, and Happy Thanksgiving! My little cornucopia of blessing is overflowing these days, and I pray the same for you.

Blessings,
Hillary

Wednesday, October 31, 2012

What a SPECT scan looks like!

Let me say for the record "I love Providence Med. Center!" I got the disc within just a few days of requesting it. They are so wonderful to work with long distance, and Brent said the Radiology staff was really great with N. Two thumbs up!

Okay, so here is a sample of what they scanned on my boy.  What you're looking at in the first photo is just an indicator of which portion or 'slice' of the brain they are showing. The next photo is the scan that corresponds. I actually zoomed in and cropped it as two photos so we can really see a clear shot.



Okay, now how to find the profusions: The green part is where the radioactive tracer did not flow. The large green area across the middle is his eye socket/ sinus area. However, the green parts in the middle of his brain above the eyes are the profusions.  In some shots it looks like one big blob of inactivity, but in some of the others, you can see the definition that shows it as two separate profusions.  Now the radiologist actually says in his summary, "Brain SPECT study is within normal limits. No convincing perfusion abnormality identified."  This confused me because it was obvious to see the perfusions, and he identifies them in the main body of his report. But then I remembered that he is assessing it with the normal goal of looking for actual brain injury or seizure activity, not just inflammation. I was informed that we are some of the first ones to seek this test  from Providence in Anchorage for Autism in spite of it becoming more routine down south. And as I mentioned in my last post, it makes sense that N's are "subtle profusions" because he is a verbal, engaged, high functioning case.  I wish we could have done this sooner in the protocal since we are already seeing so much improvement and activity in those lobes after just 2 months. I am sure the profusions would have been larger and more defined, but at least this gives us somewhat of a baseline to compare with later down the road!

Hopefully this will help for you to understand a little more about what we are dealing with in NIDS cases.  I am excited for the day that his scan shows nothing but pink and orange in that upper portion! :)

Oh! And in a fairly unrelated note; N has been complaining about his headaches again the past few weeks. We thought it was only related to his neurofeedback sessions since that is when he first complained about them, but now he has told me that it's pretty non-stop.  We thought that it might be related to seasonal allergies or air quality, but after addressing those, he's still dealing with it. Well, tonight as I was flipping through Dr. Goldberg's book, "The Autism Myth" I saw a passage that referred to one of his case studies having headaches during the period of recovery when she was making rapid gains. That would certainly make sense in N's case since they started about the time we started the NIDS protocol, and he feels it in the area of his profusions. I'm going to question some of the other parents in the NIDS yahoo group about whether or not their children experienced this, but it definitely seems plausible and logical!

Havea a great rest-of-week, and thank you again for your support and encouragement. We appreciate you!

Blessings,
Hillary

Thursday, October 25, 2012

The results are in! BINGO!!

Even though the disc of the digital images is being snail-mailed to me, the radiologist faxed his report to our pediatrician. I have my copy in front of me and it says "There appear to be subtle areas of relatively decreased radiotracer uptake in the right parietal and left temporal lobes on coronal reconstructions." Yes! This is what we were looking for! The subtle perfusions in the front lobes are totally textbook NIDS. Since he is high-functioning, it makes sense that the perfusions are subtle.  This totally confirms to Brent and I that we are on the right track in working to recover our boy. HALLELUJAH!!!!!!!!!!!!!!!! Oh, and I should add that the rest of his cerebrum and cerebellum looked fine. Praise God! 

Now we wait until we have our appointment with Dr. Russell in TX. It sounds like he will review all of the tests we've already run, and then run the rest that our pediatrician did not.   That's okay, I'll just keep happy dancin' while I wait :)  Thank you for all of your prayers and encouragement!  We are going to beat this thing, and I have a feeling we're going to help educate a lot of people out there as we continue on our journey. Yes and Amen!

Blessings,
Hill and the Gang

Monday, October 22, 2012

And They're Off!

My 'boys' are en-route to Anchorage right now for N to have his SPECT scan! They will have it done at Providence tomorrow.  Brent re-thought his idea of multiple taxi rides and shuttles, and opted for a rental car after all. lol  So please pray that N's scan goes well and that my guys are safe on their Anchorage adventure!
Blessings,
Hillary

P.S. I've had several people ask me about menu and diet ideas.  I'm going to try to start working on a tab w/ a list of favorites and links. Hopefully I'll get it up in the next few days since we're not schooling while the guys are gone. However, I do have a sick baby, so we'll see...

Monday, October 15, 2012

Just About Miraculous!!

As I was doing more NIDS research this weekend, I came across a NIDS yahoo group, and within that group learned of another Dr. who uses the Goldberg protocol. He has a waiting list, but doesn't charge the $400 processing fee like Dr. G. They will bill insurance (including our insurance!), and the miraculous part? He is located in Port Aransas, TX!!  For those of you outside of TX, let me explain that he is in a little island town just outside of Corpus Christi (where Brent is from and where family still is!).  Apparently he worked with an Autism Center in NY, but came back home to TX to practice a few years ago. He is really highly endorsed by those in the NIDS yahoo group. I asked my lovely Sister-In-Law ask around Port A. for opinions on him. So far, we're only hearing positives about him!  The unoffical information is that he is a Family Practice doc (not a pediatrician) but became familiar with the Goldberg approach because of his own experience with his child with NIDS.

I called this morning and got N on the waiting list. She said it will probably be Jan or Feb. Brent and I have already decided (Lord willing!) that I will take the baby and go w/ N on this trip. That will allow Brent's Mom and family to meet Baby G.  It may even work out that my wonderful niece (who was already contemplating a trip to AK) may be able to help me on one of the flights! Now do you see why I'm calling all of this miraculous? If not miraculous, at least divine for sure! :)

Okay, I'm off to go try to calm myself down in order to be an effective school teacher today...Praying you have a wonderful week ahead, full of joy and divine appointments as well!

Blessings,
Hillary

Friday, October 12, 2012

10/12/12 Update

Hello Hello! Well, we are very excited here in our home. Brent and N will be heading up to Anchorage for the SPECT scan to be done. They will leave here on Monday 10/22, the test is on 10/23, and they will come home on 10/24.  I was relieved to hear that the test does not involve being put in a tube or small machine like an MRI. Instead, he will sit in a chair and the camera will revolved around his head and take the 'pictures'. Amazing!

Brent has informed me that he is in NO WAY driving while there.  Thankfully a friend gave us a lead on a nearby Marriott that offers shuttle service to/from the airport and to/from the hospital! We are just budgeting for a couple of taxi rides to take the boys to a Gamestop store, movie theater, etc.  in their free time. Brent has promised that he will try as hard as he can to keep them both on the diet restrictions while there, but since they'll be at the mercy of whatever food they can walk to (and probably the hosp. cafeteria), we'll just have to deal with the outcome. Hmmm, I wonder if that outcome will include Taco Bell...yeah, I'm sure it will ;)

So, please pray that the weather is good for them to get out and for everything to go smoothly while they are there! Of course, please pray for them to have safe travels as well :)  We'll keep you updated as to what we find out.

Blessings for a peaceful and cozy weekend in your homes,
Hillary

Friday, October 5, 2012

October 5th and so much GREAT news!

First off, we are so thrilled and thankful that we ARE able to get N's SPECT Scan done at Providence Hosp. in Anchorage! I should be able to call and make the appointment today. The Radiologist said that there is a 2-3 day turnaround time, so we should be able to get him up there in the next week or two. It is PFD time up here, so flights are booking up. That will probably be our biggest delay.

We have received back all of the bloodwork. Everything came back normal except that he is extremely low in Vit. D.  It's not uncommon up here, but his levels were pretty low-especially considering he takes a mulit-vit that has Vit. D in it. So, we're upping him an additional 1000 i.u. a day.

The best news of all is that we are already seeing massive improvements!  It's crazy and almost creepy. I didn't expect to see any changes for at least 6 months by what I've been reading, but it's like a switch has went on. There are two things we have struggled with N about for years. To avoid embarrassing him even more than I already am by having this blog in the first place, I will just say that the human body is full of cavities and spaces, i.e. stomach, bladder, mouth, sinuses.  In order to gage that a person has a 'full' feeling in this spaces, you have to receive the message from your brain.  Well, my son was not getting those messages so we had food stuffing and over reating among other spatial-planning issues.  Like a switch, the past week he has spun a 180 and begun paying attention to his body in normally-developing ways.  He has suddenly become the sloooowest eater; taking smaller bites, visiting pleasantly, AND leaving food on his plate instead of reaching for 2nds and 3rds!  He is also paying attention to those other biological signals and making sure that he empties those other cavities when they are full. (Is that cryptic yet clear enough? lol)  After seeing him calmly put down his Nintendo DS and walk to the restroom the other day, I asked him if was able to better pay attention to his body now, and he said "Yeah. I can feel it so much better now."  Wow! It's amazing, yet it makes so much sense. If you live in a head cold-like fog 24/7, it would be understandable that your bodies' signals would be so dulled. No wonder he didn't feel them until he was about to explode or throw up!  

Finally, the last bit of news (which also ties into the above), is that his Neurofeedback counselor has been able to successfully work with his front temporal lobe the past two sessions. She is getting a strong signal and he doesn't seem to be complaining about the instant headaches he was getting whenever she tried to stimulate that area before.  When I told her about our successes with his spatial planning, she is quite sure that he is finally laying down new pathways in that area of his brain. The pediatrician and I both wish we had been able to do a SPECT scan before she started doing that so we could compare it to now, but oh well...Besides, there's only so much radioactive tracer that I want to inject in my kiddo! 

Anyway, thank you for your kind words of encouragement. We are so hopeful and optimistic. The Lord is really working in incredible ways. I pray that we continue to be patient and trusting and not get ahead of Him. I also pray that, somehow (!), our experience will be a help to others who feel stuck on the 'A List'.  Hugs and Blessings to you all!
Love,
Hillary