Friday, February 27, 2009

We have Birds....

2 new cockatiels and a new parakeet. Pictures to come. Dominic helped pick them out, and is so happy to have occupants of the cages again. He keeps coming in to make sure the birds are still there.

random tidbits

So our cockatiel, Herman, died last week. He was old, it was not unexpected. What was unexpected is how sad Dominic has been about it – he kept looking for Herman, and last night while he and I were at Whole Foods, he saw these small stuffed birds that tweets, and wanted one, so we got it. I thought he just wanted a new toy. When we got home, he took it and put it in Herman’s empty cage. Made us so sad. We’ve got a lead on some new birds to put in the cage so that its not empty anymore.

The OT today commented to Rod that she’s seeing Dominic lose some of his core (ab/back) strength, that he’s using his arms to push himself up instead of his core. So she wants us to start having him work on core exercises. Seems like a good time to redeem the GC Dominic got for his birthday to Art Sports from Mike and Allison (Thanks guys – amazing timing…) and get Dominic going with some trampolining and such for core strength. I talked to the folks over there and there’re a couple of smaller preschool classes he’d fit into, and it would be no big deal for Mom or Dad to come along with. We’re going over there tomorrow for a birthday party, and hopefully will get all the signing up and such done at that point.

Thursday, February 26, 2009

Test Results and recommended treatment / Round 1 / DAN doc

In addition to the Organic Acid test we already got in the mail, we reviewed a number of other tests.

From the assorted LabCorp blood work- this is the stuff that’s not normal

1. He’s very acidic.
2. His iron is high
3. Homocysteine is low
4. Vit D is Very Low

From the Food IgG Antibody Assessment (not anaphylactic allergies, but long term sensitivities) – the only things with reactions above very low

All Dairy forms - moderate
Eggs –low
Soy Beans – Moderate
Wheat – Moderate
Lentil – Moderate
Peas – moderate
Peanut – high
Spelt – Moderate
Garlic Moderate

Very surprised by the peanut allergy. So I’ll be finding some almond, cashew and sunflower butters and seeing which one he likes best. Also, on the eggs, we need to start rotating them so he only has them once every 4 days. This is going to make getting enough protein at breakfast a challenge. The nutritionist suggested nitrate free sausage and bacon, and chicken legs. As well as a rice protein powder.

Urine Essential Elements
Zinc – low
Lithium – Low
Copper – low

Stool Anaylsis
Not enough Beneficial Flora
Too much “bad” flora
Yeast, red blood cells
Very high Immunology markers
Low short chain fatty acids

We don’t have back yet the NutraEval or the Neuroscience Virus test. We’ve got an appointment April 15 to go over those (and are on the list in case there’s a cancellation prior to then).

Here’s the new supplements:

Actifolate (this is b6 and should help with the hyperactivity and behavior)
Vit D3 (for the deficiency)
Baking soda (to help balance his acidity)
An additional Probiotic (a second brand)
Copper
Essential GSH (adds glutathione)
Grapefruit seed extra (stronger yeast fighting – this in addition to the MCT)
Trevacor Jr (this is to help with sleep and behaviors)
GABA


Interestingly enough he did not show high toxic metals. Dr Kucera wants to retest his toxic metals in 6 months. Sometimes kids’ digestive systems are so out of balance that the chelating challenge dose doesn’t cause any chelation. But for now, we’re not going to do a chelation round.

Dr Kucera likes the program at Alpine Autism Center, and of the 3 places we’re going to visit, recommends them the most.

Wednesday, February 25, 2009

notes for Dr Kucera appt tomorrow.

printed off and copies made to give to the Dr and Nutrionist upon arrival.
-----------

Specific Observations 2-26-09 Appointment


Intestinal improvements –
less stinky gas by probably 75%, less constipation, more frequent poop – up to 3-5x per day from 1-2x per day. Distended belly seems less distended by ~30%. He’s had a couple of days of diarrhea, but I can’t correlate it to anything in particular

Behavior Changes

Improvements -
He has much better attention and focus. Seems much less disconnected. He’s playing with more of his toys, whereas he ignored many of them for a long time. He’s not sitting still for more than 30-45minutes of a movie whereas before he was glued to the TV for hours per day. (before the regression, he wouldn’t sit for more than a few minutes of a movie either, so this is going back to where he was)

‘Problems’ –
He has WAY more energy – this is how he was before the regression started, we actively had to look for things to do to wear him out. This is a problem in the classroom as he’s literally running in circles around the room, and he’s showing some aggression in the form of hitting other children and not responding to adults in the gym daycares which is also problematic. He’s getting more frustrated than before about not being able to communicate, and this is resulting in more tears.

Sleep
He’s gone from being very easy to get to sleep at night to fighting sleep. He does not sleep any later than 7am, generally no later than 6am, and does not nap. So its really important to get him to sleep between 7 and 8.

Speech improvements –
we can tell he’s TRYING much harder to talk. More words are coming thru, but they’re still extremely garbled. Rarely more than one at a time.


Side note: We had a babysitter before we started the protocol and again this past weekend who said he was a completely different kid, so its nice to get independent confirmation of what we think we’re seeing


Specific Questions / 2-26 appt.

General Questions

1. What is your opinion of complementary therapies, specifically ABA, OT and ST, in Dominic’s case?

2. What is your opinion of the therapies and services offered by the Alpine Autism Center, Dr David Hatfield with the Colorado Neuropsychology office, and Dr Rydell with the Rocky Mountain Autism Center up in Littleton.

3. We are getting ready to request significantly more services from D11. At present, he gets 1 hour per week of speech therapy in classroom and 1 hour a month of support from an early child hood special ed teacher. We will be asking for extended school year services, ABA therapy in classroom, possibly a dedicated classroom shadow-aide, and significantly more speech therapy. We are trying to take an advocate with us, and we have also started the ball rolling with the Resource Exchange to get him funding to pay for services. Do you recommend anything else we should specifically ask D11 for.


Nutritional Questions

1. Does the Calcium Citrate for high oxalic acid need to be given before, during, or after a meal, or does it matter as long as its at the same general time?

2. Is it a problem that he’s drinking the bathwater w/Epsom salts in it?

3. Is there anything we can do about the higher energy level/ difficulty relaxing enough to go to sleep that doesn’t involve meds? There’s a homeopathic called Calm Forte, and there’s melatonin (I have a spray), but will either of those interact with any of his current supplements in a negative way?

4. He really fights the mB12 shots. What is the effectiveness of other forms of delivery?

Testing Questions

1. In light of the news story by Huffington post released 2-25, that talked about a 2007 decision by the vaccine court ruling that showed the MMR vaccine caused acute disseminated encephalomyelitis which then caused PDD-nos – did any of the testing you did test Dominic for levels of antibodies to myelin basic protein? (we gave him tylenol w/several of his vaccines as encouraged by the nurses in Dr Maynards office)

2. Did anything we tested for show levels of glutathione?

Tuesday, February 24, 2009

All kinds of irons in the fire.

Here’s what happened today. I was a-googling, and found The Alpine Autism Center in Colorado Springs. Turns out they offer IEP advocacy services. So I called them. I spent a good 45minutes on the phone with them, learning all kinds of stuff with links galore. In a nutshell, they offer an intense program, tailored to each child, based on the CARD program I’ll be sending them Dominic’s current IEP, and I believe they’ll come with us to the new IEP session to try to help us get D11 to provide ABA therapy for Dominic, OR pay for some or all of it. Couple of interesting resources she sent me to – The book educating children with Autism specifically states that a minimum of 25 hours per week needs to be spent on intense therapy – as a result of the NRC study of 2001. And the American Academy of Pediatrics put out a study recently that states that only 1 hour a week of speech therapy is completely inappropriate. So, very interesting stuff. She really emphasized that in order to get the coverage and services Dominic needs, we’re going to have to fight.

At the recommendation of the wonderful woman I spoke with, I contacted The Resource Exchange, another local organization I had not heard of prior to today, and we are being sent a packet for application. What they do, is if he qualifies, which she expected he would (we’ll fill out the application, and send it along with his current IEP, and the new IEP, which they will take before an eligibility committee that meets 2x a month for a decision) is provide us a family support coordinator to help us navigate the system and pick through the information we’re seeing. This service is free. At that point, we will ask to start the CES waiver process by being placed on the wait list. A CES waiver is a Medicaid program, that’s not income based, that provides funding for things like ABA therapy. The wait list is quite long, several years, but it funds up to $35K a year for these proven therapies.

Monday, February 23, 2009

more organizations... I have a headache now...

More organizations I’ve contacted for additional information on their programs, costs, etc.

http://www.myplaydate.org/Home_Page.php
http://www.rockymountainautismcenter.com/
http://www.peakparent.org/index.asp

I also have read all 118 pages of the colorado IDEA law (individuals with disabilities education act), and a whole slew of information from this webpage: http://www.danasview.net/. I either need to print all out, highlight pertinent parts and take it with me to the IEP, or hire a special ed advocate to go with us.

pass the tylenol.

Sunday, February 22, 2009

Misc. updates...

More little good things...

LAst night we had a babysitter - we went to a party and while Dominic was welcome, there wouldn't have been much he could eat (actually, there was nothing there on his diet) and that wouldn't have been fair to him. So we got Julie to babysit - she coincidentally had watched him the night before we started the Dairy free a few weeks ago. She told us when we got back that she can totally see a difference in his focus/attention, in his speech (he didn't say a single word the first time, and he tried to talk quite a bit last night apparently). So, like with Allison's comments a while ago, its nice to have independent confirmation of what we think we see.

Today,Dominic dragged upstairs his sit-n-spin, that he got 2 christmas's ago. The one that he's NEVER used.... sat down on it, and spun himself around a few times. (then he carried it off). He's much more interested in toys than he has been in AGES. And not just his Thomas and his CArs that obsesses about/

We've done the therapeutic listening now 3 days in a row. Whats working best is to put it on him while he's contained at the table, and hand him some crayons and paper.

He can certainly wear it and play, but he is a bit too rough for that and right now thats not working so well.

I've been researching the whole non toxic cleaning thing, and one of the ladies at last nights party owns a holistic house cleaning biz. i picked her brain for a bit, and have some things i'll be googling. in a nutshell, we can apparently keep the whole house clean with vinegar, lemon juice, baking soda and borax, and castille soap. Implementing this will be interesting.

Friday, February 20, 2009

We’re holding steady it seems.

We’re still seeing some improvements, small, and slow. Dominic is TRYING to use more words, but they’re extremely mushy.

He’s doing fine on the GFCF diet. We’ve discovered a fantastic breakfast that he LOVES, is 2 scrambled eggs (no milk added, I just whisk with some salt and pepper) mixed with about 3/4C peas or broccoli florets (I thaw the frozen kind in the microwave for a few seconds) and a half an avocado – all mashed together. He’ll just about lick the bowl. We’ve had moderate success with GFCF pasta – I found a quinoa/corn pasta that he really liked, and he likes rice pasta as well. I have found some GFCF breads in our local GF bakery that he likes toasted and spread with coconut oil (in lieu of butter). Our biggest challenge is getting a good amount of protein into him at every meal. He’s not the biggest fan on the GFCF chicken nuggets I made for him, but he’ll eat some with a good amount of ketchup.

He’s talking a bit more at school, tho we did just get back his 3rd quarter report from the school speech therapist that gave him a “not yet proficient” on all of his goals. Its going to be interesting to see what the end result of the new IEP meeting we’ve requested is.

Behavior wise, we’re seeing a HUGE amount of energy out him. He’s RUNNING everywhere, and seems to have an unstoppable amount of energy. His teacher is also noticing this. This is how he was before we started the whole regression – very high energy. No idea if this will be a long term change, or not, but we’re starting to have to think about how to wear him out every day.

As of this morning, we have now the CD to start Therapeutic listening with him, and that will be 30minutes 2x a day. Its going to be very interesting to see how he does on it.

I’ve been researching like a crazy woman (I know, shocking), and have joined several parents groups for people who are doing the DAN protocol. It’s very interesting to me to see what other people do and the responses they get. As a result of all this research, I believe that at our next Doc appointment after we see all the test results (if the tests say what we’re thinking they’ll say), we will probably start an Antifungal regimen, and an antiviral regimen. Everything I’ve read says that to do chelation, you have to heal the yeast issues first, so while I think they’ll want to do chelation, I expect that will take a back seat to the antifungal routine. I could be wrong, we’ll see.

I have a query out to my health insurance to find out if they’ll cover the ABA therapy we want to do. It’s a very long shot. I’m expecting to be told No, but I can’t not ask. We do finally have an appointment with the only ABA practictioner in Colorado Springs on our insurance (he’s a child psychologist, which is probably why he’s even covered by our insurance) for March 10. The biggest two questions I have for him are – would ABA be useful for Dominic as our primary goal is speech redevelopment, and How long of a trial period of ABA therapy do you need to do in order to know if its going to work or not. Answers to those 2 questions would determine if we would ask to do ABA therapy and pay out of pocket.

Sunday, February 15, 2009

Updates, more little changes

First of all I have found the Grail - Gluten Free, Casien Free, Soy free boxed macaroni and cheese that Dominic likes. The flavor he likes so far is the Alfredo. I have my hands on the cheddar one to try too. They're a bit more than the Annies that we loved (these're $2 a box), but i got 3 meals out of one box and he LIKED it.


Some random updates we've noticed the past few days - Dominic has MORE energy. He's back to RUNNING between everything. He's spending much more time outside with the dog than he has been. He's only watching 30-45minutes of a movie before losing interest. He's starting to play with his toys in his room independently again (this is HUGE). He's pooping a lot more frequently, and he's not constipated anymore. He's using a few more words independently, still very mushy and hard to understand, but he's TRYING.

Wednesday, February 11, 2009

Happy 4th birthday, Dominic

I managed to make Gluten Free, Casein free, Soy free, organic chocolate cupcakes, with frosting for his birthday, and they don’t taste awful.

Updates –

Allison made a couple of comments worth noting when she came to visit over the weekend. The one applying to Dominic is he seems much less ‘off in his own world’ right now – that he’s much more connected than he was the last time she saw him (which was around Thanksgiving, I believe). That goes along with the high casomorphin levels we found plus cutting dairy – he was basically high on an opiod and by cutting dairy, we’re cutting that fogginess. The funny comment of the day was that apparently Dominic’s lucky I’m such a “pushy broad”. I think I need a t-shirt that says “Pushy Broad” on it to wear to all future doctor and school appointments.

The Therapeutic listening headphones have arrived. We will borrow a CD from the OT on Friday and start playing it for him 2x a day.

Gluten free bread is so far not pleasant tasting. I need to find some that doesn’t have the consistence of a brick and flavor of… sawdust. Or we need a proven recipe that we can make.

Dr Kucera’s office called since I had asked to be put on the list for an earlier appointment if there were cancellations. Our follow-up appointment to discuss all the testing is now Feb 26. Almost all the results are in. There is only one test that hasn’t hit our credit card yet, and I’ve emailed the lab to try to find out when it will. I would call them, except I have laryngitis, maybe tomorrow if they haven’t emailed back.

Yesterday Dominic’s teacher reported a few more words than he’s usually been using for her. We’re not seeing that many more clear words at home, but we are seeing a definite effort on his part to TRY to talk, but its coming out all garbled. His attention is improving too, I took him with me to Walmart last night and let him pick out a toy for his birthday… which I then hid from him until I could wrap it for him to open this morning. And he was MAD that he couldn’t find it when we got home (he even dumped out my shopping bags looking for it)

We’ve learned that the boxed Rice macaroni with UNcheese sauce that cost me $5 a serving, doesn’t taste good. I couldn’t get him to eat it. I’m actually sort of relieved, even tho I was hoping to find a quick substitute for his favorite macaroni and cheese.

Friday, February 6, 2009

More tidbits...

the OT started Dominic's Therapeutic listening regime this morning - apparently he tolerated the headphones for 10 minutes.

He had a very good day at school. He drew a circle in his journal, which is HUGE, to this point he's only done scribbles and horizontal lines voluntarily, vertical lines with coaching. his teacher said that he said "I done" 3 times after finishing activities. And that he painted 3 pictures and did some puzzles.

We got a lab report back on one of the major tests we had done... this is the only one that we'll get a copy of - the rest go only to the doc.

Of note:
he showed extremely high casomorphin peptides in his urine - thats milk related. It says in the analysis that "If either of the peptide results is abnormal, a gluten free and casein free diet should be considered for the person testing"

Then they tested a WHOLE bunch of organic acids that neither Rod or I could really decipher, BUT, they included a handy interpretation page that said these -
Elevated yeast/fungal metabolites (may need an antifungal med/herb)
Elevated succinic acid (may need riboflavin)
increased aconitic acid (may need glutathione)
Elevated HVA and/or VMA (may need GABA an Vit C)
Elevated uracil but normal thymine (may need folic acid)
low ascorbic acid (may need vit C)
elevated kynurenic acid (may need B6)


I'm going to go ahead and add vitamin C to his routine, but everything else, we're going to wait for our Doc appt in March to decide.

More Misc. Stuff

Good news, we got Speech Therapy changed to 60 visits per year, with the diagnosis of aphasia, where it was limited to $2500 before. So thats positive.

We have a new IEP meeting on March 6. My goal for this is to get Dominic some in classroom OT, get something for the summer so we don't lose momentum, get additional ST in classroom, and get D11 involved in ABA therapy or the educational equivalent. We'll see what happens - never hurts to ask.

The headphones for Therapeutic listening should arrive Monday. Next week we'll start borrowing CD's from the occupational therapist.

I've sent a request for predetermination letter to our insurance to see if we can get them to pay for ABA therapy as part of the home health care benefit. Actually, i sent it to the company's Vendor Manager for United Health Care, and she sent it to her escalation point of contact at UHC who will babysit it through the system. Again, never hurts to ask.

Dominic seems to be going to sleep with less delaying this week - I haven't had to threaten to take away his toys all week long, and he's gone right to sleep when put to bed around 7. No other notable changes in behavior, or speech.

Tuesday, February 3, 2009

Misc. update

Lets see

- did the last round of blood work this morning and sent it off - this one was to check for a handful of the more common virus's.

- We've specifically noticed that his gassiness, while not subsiding, is no longer of the 'paint peeling' variety. I emailed our nutritionist from Dr Kucera's office and she said that is likely a combination of the dairy free with the MCT liquid (its antifungal) and the digestive enzymes - that he's just letting go of some of the ickier things in his gut. Will be interesting to see what gluten free brings.

- I've been talking to the school district about additional in classroom services and supplemental stuff for the summer. I've faxed them piles of documentation and today they came and observed him in the classroom. I had an email this afternoon about scheduling a new IEP. So we'll probably get that on the calendar for March

Monday, February 2, 2009

Therapeutic Listening

The Occupational therapist is getting ready to start working with Dominic using this

We have to buy the special headset for home, but will be able to borrow the CD’s from the therapists. I’ve seen mostly good things from people doing this program, so we’re hoping it will be well worth the investment for the special headphones.

Nothing earth shattering to report on the last few days – B12 shot went fine on Saturday. He hasn’t had any more tantrums like he did the first couple of days on dairy free, and his gassiness appears to be lessening. Which is a good sign. We discovered he LOVES these pretzels
So I bought us 2 cases in an Amazon sale.

We’ll go fully gluten free the end of this week. We have one more set of bloodwork to do (to test for half a dozen or so virus’s), which we will try to get done tomorrow morning.

I did get the formal case notes from the neurologist visit, finally, and have faxed them to the school coordinator, the school nurse, and Dr Kucera. Here’re his exact words:

“Acquired Aphasia. His presentation is similar to that seen in Landau-Kleffner syndrome, however with a normal EEG and no history of motor seizures this rules out LKS. Some years ago, we used to call this Landau-Kleffner variant, but it si more aptly described as an acquired aphasia. I think that the workup has been complete, except for possible immunological markers. If he ahs any immunological deficit, one could make a case for treating with IVIG. There are some anecdotal reports that this has resulted in some reversal of speech regression.”

Now, we did get the immunological tests back, and they didn’t show a deficit… in fact some of them were high, which shows he was fighting something when he got the bloodwork. We actually don’t remember him being or acting sick that day, so that’s an interesting twist.

Dr Grabert, the neurologist does specifically list ABA therapy on the notes as a treatment for this, so my next step is to speak to the insurance company. Should be fun.