little updates

We're trying to keep track of little things as we make these diet and supplement changes, and here're the first 2 days of them from my notes:

1-28-09 First B12 shot and started CF diet, digestive enzymes, probiotics, cod liver oil and MCT (coconut oil)
-Massive temper tantrum at dinner
-Clearly said ‘Don’t go’ to Rod
-Asked for his blanket and his Thomas before bed
-Almost 100% on the CF – snitched some cheese from Rod’s Pita before Rod could get it out of his hand, but only a tiny bit.

1-29-09 – day 2 of dairy free, continued supplements

- Still kind of cranky and tantrum-ed right before bed because he wanted his Thomas the train and his toy horse in the tub. HOWEVER – he clearly asked for both HORSEY and THOMAS, so that’s something.

- At dinner time, we noticed his tummy wasn’t as distended as it has been. It was so swollen that Dr Kucera was distinctly concerned about it. We think its between 25 and 30 percent less swollen. (truthfully, we thought the Buddha belly look was the beginning of a growth spurt, but he’s had the swollen tummy for around 6 months, which is a bit long for a growth spurt)

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We saw Dr Maynard today, to discuss the results of the IgG testing that Dr Grabert recommended. IT was a weird appointment. None of the IgG numbers would indicate to Dr Maynard that Dominic could benefit from IVIG. I made him give me a copy of the test results and am faxing them to Dr Kucera tomorrow. We did not mention to Dr Maynard that we're seeing Dr Kucera, and expect that we likely will not. We'll see. Maynard asked if we wanted any vaccines today and we declined. He was kind of snotty about it, but oh well.

And We're off. Updates on the Plan.

Step 1 - get all the testing done.
status: All the tests we left with are complete. There's one more being drop shipped to us that has not arrived.

Step 2 - call the school nurse to discuss snacks and play doh
status: DONE - left message and gave packet of paperwork to the teacher for interoffice mail.

Step 3 - Call the doc's office for a primer on giving b12 injections and a followup on all the testing
status: DONE

Step 4 - Start supplements:
status: DONE.

Step 5 - Start diet at home and at school
Status: DAiry free started today

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We also got the B12 training today. Dominic adores this doctor, he went and gave him a hug as soon as we got there. Of course, the only pharmacy in town that makes the B12 injection kits for this doc does not have a contract w/our insurance. so we'll be paying out of pocket. $42 a month. Fun.

We can see the start line.

Its funny, I’ve been pushing on Dr Kucera’s office to get us scheduled for the B12 training, and one of the things that the nurse said to me yesterday when I called was that most people take close to a month to finish the tests that we’ve gotten done in just under a week. I found that odd – yes, they’re expensive, but that’s what credit cards are for, its more important right now that we get them done so we can start this whole program.

We feel like we can see a starting line now. We have a clear plan of what we’re going to do. We don’t want to wait any longer before starting something that has a good chance of making huge changes.

So. Apparently, we’re freaks . Big shock.

Anyway, all of the tests we got from the doc last week are done. There’s one more coming sometime soon – it was drop shipped to us from the lab. Our appointment for the B12 instructional is tomorrow morning at 9am

Okay, now we have a plan. Written down and stuck to the Fridge, no less.

Step 1 - get all the testing done.
status: In progress, expecting all tests done and in the mail by Tuesday.

Step 2 - call the school nurse to discuss snacks and play doh
status: do it Monday

Step 3 - Call the doc's office for a primer on giving b12 injections and a followup on all the testing
status: do it tuesday

Step 4 - Start supplements:
1.Multivitamin / Costco – take double the label amount
2.Oils: Gummies from Costco plus a total of 8 nordic naturals strawberry capsules per day. Avocado daily
3.Digestive Enzymes: Kirkman’s – Start w/ ½ capsule at the start of one meal, and work up to one capsule per meal, given right before you start eating
4.Probiotic – Pro-5, take one in the Morning
5.MCT Liquid – start with ½ TB in the morning and work up to ½ TB each morning and evening.
6.Epsom Salt Bath every night.

status: salt bath and avocado started, all else to start after last test is done.

Step 5 - Start diet at home and at school
- Organic wherever possible / wash all fruit/veg in vinegar water prior to eating.
- Protein at every meal / snack (no more than 5 hrs between protein based meal or snack)

Minimize:
Sugar
Fruit Juice (dilute w/water, club soda or chamomile tea)
Fruit – no more than 2 pieces per day

Absolutely NONE of these:

Nitrates
MSG
Artifical Colors,
Artifical Flavors
Artificial sweeteners of any kind except Stevia or Xylitol

Jan 28 start Casein Free
- Completely Dairy and Soy Free – in addition to the obvious milk, soy milk, cheese, yogurt, soy sauce, etc - nothing with any of the following ingredients:
Casien, acidophilus, caseinate, calcium caseinate, hydrolyzed milk protein, hydrolyzed vegetable protein, lactalbumin, lactate, lactoglobulin, lactose, postassium caseinate

Feb 7 add Gluten Free
- Absolutely nothing with the following on the label:
Wheat, wheat berry, couscouse, flour, graham, semolina, durum, bran, bulgur, cracked wheat, rust, oat bran, oat grem, oatmeal, oat flour, rolled oats, Barley flour, barley malt, barley starch, barley pearl, Rye, Triticale, Spelt, kamut, groats,


Step 6 - Add any diet or supplement changes that result from the testing.
status - probably will do this in mid March

well, that was bizarre.

one to file under weird - Dominic had a contact reaction to soy sauce of all things tonight. We went for sushi, and he LOVES to dip california rolls into soy sauce (plain, no wasabi). He makes a bit of a mess, in fact. Everywhere the soy sauce touched his skin, he turned red. He even had a couple of hives on his hand. I washed him off in the bathroom before we came home and by the time we got home the red was almost 50% gone. I gave him benadryl just in case.

Also, today we sent in his hair test and had 8 vials of blood pulled for various test. He'll have one more blood draw, and the urine and stool tests to go. WE're hoping to get everything done by midweek next week so we can start the diet and supplements.

Complete lists of test we have to get done (for Dr Kucera)

AGain, did i mention this is all overwhelming?


Bloodwork:
Homocysteine, Plasma
c-reactive protien
testoterone - free/total
Free T4
Complete metabolic panel
Lipid panel
CBC w/diff w/ pit
Antinuclear antibodies
b12 and folate
iron and ibc
tsh
B2 microglobulin
celiac panel
methylmolanic Acid
Vitamin D
IgG and IgE Food Allergin panel
NutraEval (contains metabolic analysis profile, efa profile, urine amino acids, and mineral analysis)

HAir test for mineral and toxins

Urine test for Toxic and essential elements (this is a 2 day, 6hr each day, urine catch)

Comprehensive stool analysis with parasitology (3 day test)

Urine tests:
Organic Acid Test
Gluten/Casien Peptide test


Did I mention I was overwhelmed? After we get all these tests done, then we start the Gluten Free / Casien free diet, add Cod LIver oil, Digestive Enzymes, a probiotic and something called MCT Liquid, as well as putting epsom salts in all his baths. We also go back to the doc for training on giving Dominic b12 injections which will be every 3 days. Then we have to switch all our household cleaning supplies to non-toxic

If i thought I had information overload before.... i'm totally fried now.

We just got back from a 2 hour appointment with Dr Kucera, the only DAN doctor in town. He treats autistic symptoms biomedically. The appointment was with Dr Kucera AND a licensed nutritionist - lots of info.

He actually shook my hand for not letting Dominic have any vaccines until age 2 and spacing them out. Told me that probably saved him from an earlier regression.

Gist of the appointment is that the combination of me being on antibiotics during pregnancy and having to have pitocin during labor, plus him having a genetic disposition towards toxic reactions (Rod's niece had a bad vaccine reaction), plus the history of yeast overgrowth, plus the horrible virus we think is causal all add up to a major toxin overload on his system.

I left the appointment with 3 bags of test kits for everything from peptites from gluten and casien, to heavy metals to vitamin levels. We did a skin antioxident test in the office that shows he well below normal in antioxidents, but not as low as he could be. We have urine and stool tests to take (FUN) and send in and a lot of blood to get drawn. All very overwhelming. Then as soon as we get all the initial testing done we start gluten free casien free diet, and some specific supplements. We are to go back soon for a training session on giving him B12 injections, and will have a followup apppointment to discuss test results and additional treatments probably sometime in March. Some of the testing will be covered by insurance, but a lot of it is going to be out of pocket.

Complete and absolute information overload, but the good part was at NO time during the appointment did Dr Kucera, or the nutritionist give any indication that this was not treatable. They didn't hardly at all discuss any of the therapies we've got going on.

So lots of things to do and think about....

Information overload

Interesting stuff I have been reading about online. Today, Julie, the VP of Cerescan called me back. They don't do their scans on kids younger than 6, but she confirmed that they do sedated scans. She was very nice. I'm to call her back in a few years. That should be interesting.

Anyway, after hearing the current viral theory, she gave me the name Dr Micheal Goldberg, who is apparently a pioneer in NeuroImmune Dysfunction Syndrome, or NIDS. His webpage is www.neuroimmunedr.com. from there I got to this interesting article:
http://www.nids.net/pdf/myth.pdf

Its all fascinating, and Julie was thrilled to hear we were going to a DAN doctor next week to talk biomedical stuff.

I'm gearing up to hear that we need to go gluten free and casien free, and probably dye free, too. should be an interesting couple of weeks to transition, but all in all, will be much healthier.

ABA therapy

I found a really good link that describes ABA therapy, its history, and its application:

http://www.christinaburkaba.com/History.htm

back from the neurologist appt.

diagnosis is acquired aphasia which falls in the category of autistic regression syndrome, which is not the same as genetic autism. he agree's its from that virus last spring and is recommedning Speech, Occupational and ABA therapy as well as some immunologic testing that the pediatrician will do that will hopefully justifiy a course in IVIG which would help detox the virus from his body.

New Year, New blog post

I am very overdue for updating this blog. Mostly because I wanted to get through the holidays without a. riding the rollercoaster of “will this be the answer” and b. dragging everyone along with us.

So, here’s where we’re at

Dominic is now almost 100% non conversational. He does use words during speech therapy type settings (we do flash cards every single day), so its not quite right to say non-verbal, but he certainly doesn’t have nearly the vocabulary he used to. The non conversational piece is the hardest because he can’t even tell us where it hurts if he’s stubbed his toe or something. He communicates moderately well non verbally – he’s become good at letting us know what he needs without using words.

He has responded really well to the occupational therapy for sensory issues. He doesn’t notice tags in clothes anymore unless he actually sees them. He will now wear jeans with holes in the knees, or patches on them. He’s not flinging himself on the furniture all day long anymore. He’s doing better with other kids. He FINALLY, the day before Christmas break at school, independently joined some other kids in an activity – his teacher was so happy she took pictures for me.

Interestingly enough, we’ve gotten the comment from a couple of folks lately that if they didn’t know that there was a distinct problem with Dominic’s speech, the would’ve just assumed he was very shy because he does get his needs met. At my staff Christmas party a few weeks ago, one of my coworkers swore to me that Dominic was talking with the kids, and I just looked at him and said… but he wasn’t using words.

Two people in the last month have commented to us after spending time with him, that they’ve worked with autistic kids and he’s not acting autistic. Which is good, because we don’t think he’s autistic either. However, we’re at a point where we need to dig deeper and find out if theres anything else we should be doing to help him regain conversational ability. And we need to formally rule in or out an Autism Diagnosis.

So, we saw his pediatrician in mid November to discuss this. Our pediatrician at that point agreed that it was time to dig further since the speech therapy doesn’t seem to be doing much, and personally called the best pediatric neurologist in town to get us an appointment (this is the doc I wanted to get in to see last summer). Dominic had an EEG the beginning of December in anticipation of that appointment, which is scheduled for January 12.

His pediatrician also suggested we look into ABA therapy. I found out that there is exactly one provider of ABA therapy who is listed on our insurance in Colorado Springs. He’s a child psychologist. We are on the waiting list to get an appointment. The difficult thing about ABA is that because its so intense, and time consuming, its very expensive. From the paperwork that Dr Hatfields office provided, IF we had an autism diagnosis, we could qualify for funding (of 20K a year from the state). My insurance specifically has a line item excluding treatment for an autism diagnosis from coverage. So we would have to be very careful how we proceed with that. In any case, Dr Hatfield is a well known child psychologist in town, and if the neurologist can’t figure it out, maybe he can.

Then, because I’m big on balance and have never given all the credit to AMA, we’re going to go see a doctor who is affiliated with D.A.N. who is widely considered by all the other doctors in Colorado Springs to be a complete whack-a-doodle loon. The pediatrician’s eyes rolled all the way back in his skull when I mentioned Dr Kucera. Thing is, there is merit to the diet change idea – and I want to have a broad selection of options. . Anyway, it again depends on if we get an autism diagnosis. We have an appointment with him to just discuss all of this on Jan 21.

So, we have several irons in the fire at this time. Speech and Occupational therapies are still continuing weekly, and Dominic is still in preschool 4 days a week.