Took the plunge

We've done mostly everything biomed and after 5 years, we have come to a point where life has to improve for everyone in the family. My son doesn't really have hyperactivity issues but has severe focus issues. His ADD has really come in the way of his own confidence and our enjoyment of each others' company. I'm always yelling at him and he's always too distracted to care and it always ends in tears. No fun for him and makes me feel like the worst mommy ever. It's really not pretty.

He knows he can't concentrate and it hurts him so much. He doesn't understand why he can't think like everyone else and he always feels like a failure. Unbeknownst to me, the first week of school his teacher asked the class to set goals. His goal was not to make good grades, make lots of friends or even be the line leader. His goal was to concentrate better. Talk about a heart-breaker.

We picked up the Ritalin on Friday. We went to our ped for it since my DAN doesn't generally do stimulants. Our ped started him Ritalin but he likely will not stay on it. It's the oldest and most well known drug and he wanted to start with something they know the best. For the first month, he stays on normal Ritalin (not slow release) because it clears the system fast and if he does have a reaction, we want it out as soon as possible. So for the first week, we just stick with 2x a day of 5mg each. We watch and report back to the doc a week later. Then we'll adjust the dose again and titrate up as we feel necessary to get to the right dose. Once we get there, we'll consider going to long acting and possibly a newer drug that maybe has fewer side effects.

Since we started Saturday, I've noticed that he doesn't sleep very well and has very hard time falling asleep. He already gets 1mg of melatonin at night. I'll be upping his dose to 3 mg and see if that helps. It is a side effect of stimulants.

Today was his first day of school on ritalin and his teacher noticed a huge improvement. She said she knew just by looking at his handwriting that he had started (I hadn't told her but she was aware it would happen).

I never wanted to go to meds but biomed just never made a difference. I would never recommend someone try meds first before biomed but for those of us that have done our due diligence, I'm all for doing what works. I resisted long enough. I've known enough ADHD people personally that have told me how medication has made all the difference in the world for them. How they finally felt normal. I can't and won't deny my son that chance. I put it off as long as I could because I just never felt comfortable putting him on it so young (especially after a Dr. put him on antidepressants when he was 3 to disastrous effects). 

Now he's 8, I'm still not happy about it but I feel like it's really the only thing left for me to do. I might end up regretting the decision but I can't tell you how easy homework was today. He's outside playing right now because he got done with his homework faster than ever and not a single instance of yelling. There was actually quite a bit of humor involved as he came up to me as "Paper Head." He put his homework in front of his face and walked around with it until I checked it. Laughing during homework time with him has always been rare.

We call it his "thinking medicine" since it's to help him think better. Today I struggled with my NT son and his homework and my ASD son said NT son needed some of his thinking medicine.  ;)

So for any of you struggling with the decision after years of biomed, don't beat yourself up if you go there. My son is recovered from autism through biomed. His ADD has only gotten worse. Maybe with this, life will be typical for him and that's really what all of us want.

Antiviral drugs may slow Alzheimer’s progression (The University of Manchester)

Antiviral drugs may slow Alzheimer’s progression (The University of Manchester):

'via Blog this'

Scientists fear MMR link to autism | Mail Online

Scientists fear MMR link to autism | Mail Online:

'via Blog this'

All the tests that folks talk about

All the tests that folks talk about « Gryffin's Tail:

This was from a conversation on a list.


Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.


(redacted)


On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.


So here goes my questions -
- All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?


Any MD/DO can order any of the labs. Some you can order yourself


- Do you need special lab to do these tests or regular labs do these tests?


I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it's defnitely helpful.


- How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a 'good' insurance, like we have Oxford)


The only test that I've found not to be covered is food allergy testing. IgG testing just isn't mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn't take it but it will be at a lower rate.


Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.


- Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.


Oi. That's a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead... but if you don't, Alletess has one for $89 that you can have your doc sign off on if willing.) --these 3 are not, imo, something you need to do often.


But a good place to start for a newbie to get some baselines.


viral titers: HHV1-6, any vaccine titers you want,


AntiDnase and ASO titers (PANDAS),


Ig and all subclasses,


CBC + CMP,


T&B lymph/NK cells,


homocysteine


Things to consider at some point:


**Urine Amino Acid (specialty lab - I don't think it's that important but if you have proten issues, could be better than nothing.)


thyroid


cortisol


other hormones (pregnenelone, progesterone, testosterone, IGF-1)


Vitamin D (bet you money you're low! ;) )


other vitamins and minerals (ferritin, zinc, copper, etc)


**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation - we do AC so hair test only - and not expensive if not covered by insurance)


**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)


Toxoplasmosis


Mycoplasma


Lyme - you can get the Western Blot through a local lab but it's not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can't think of right now. The lyme parents can give better info on it than I can. It's expensive, I think it's $1800.


I marked all the specialty lab tests with a ** and really, they aren't that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.


As for how to read them...that's steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what's going on with an explanation attached. They aren't fully explained well but it's a start.


The regular labs, well...it's hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it's fine because it's in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you've been exposed. They don't take anything else into consideration. It's an impossible question to answer, unfortunately.


*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.

Children with autism and gastrointestinal symptoms have altered digestive genes

Children with autism and gastrointestinal symptoms have altered digestive genes:

'via Blog this'

Vaccination's vexed link to autism

Nice, calm article from someone that doesn't have a vested interest.

Vaccination's vexed link to autism:

'via Blog this'

Yay, UC DAVIS MIND Institute! I <3 you.

Of course, this is not news to us biomed families but if just one thing could bring us some vindication for being called whack jobs, HERE IT IS. This is where we need to be looking to see why biomed helps some and not others. This is where we need to be looking to figure out where to start with our kids, who should start where in biomed and how it should be done. This is where we start looking to come up with an actual diagnostic effort and acceptable protocols for mainstream acceptance. This is where we stop guessing and start proving.

Does anyone else find it telling that it's an article from Australia and not the US?

US researchers' discovery promises answers on autism

RESEARCHERS have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s.

Read the full article here.

After you read the article, come back and tell me in the comments what kind of autism you suspect/know your child has.

My son has immune and hormone dysfunction. It's likely the hormone dysfunction is a result of the immune dysfunction but hey, that might be digging a bit too deep for the uninitiated. Let's keep it simple for now.

What about you?