Day 28 on Valtrex - wondering if dosage is right

[Guest guest]

I joined this group about 5 months ago and have been closely following its

posts, which I have found very informative and useful. I am very happy to have

joined but have been quite shy about introducing myself (maybe because it is

painful to recount certain events..) I find myself now in need of some advice

and would greatly appreciate any input you may have.

I am the mother of a 5 year 9 month old boy diagnosed with ASD. We have been

doing biomedical treatments for about 2 years. My son was practically

non-verbal when we started and is now able to talk but in a very limited way

(can make simple requests and respond to yes and no questions). He has also

improved in his understanding of language and is able to follow more complex

instructions than he did when we started. His eye contact is also much better.

He is a very happy and loving child. He is still unable to use complex language

and is highly distracted (like he is in a fog most of the time). He has some

sensory issues that include flapping his arms, humming and running back and

forth, especially when he is bored or unengaged.

The supplements we have used until now include: MB-12 shots (initially every

three days and now every other day), Cod Liver Oil, Probiotics, anti-fungals,

glutathione, vitamin D, vitamin E, vitamin A, zinc, magnesium, vitamin C,

vitamin b-1, P-5-P, phosphatidylcholine, borage oil, piracetam, molybdenum,

manganese, selenium, l-carnosine, l-carnitine, anti-parasites, l-methyl folate,

taurine, enhansa, among others. My son is also on a gluten-free, casein-free,

soy-free, egg-free, sugar-free, low oxalate diet that also includes the

elimination of certain foods he was found to be sensitive to. We have also

restricted phenols, but need to work further on this area. We have also done 9

rounds of chelation with EDTA and DMSA suppositories (alternating).

We requested our DAN doctor to start our son on an anti-viral protocol because

we suspected he was viral (we had seen some strange rashes come and go- we also

noticed that his progress seemed to be slow and sputtering at times, which seems

to be characteristic of viral kids). Our DAN agreed to start him on Valtrex.

Later a blood test confirmed he had the HHV-6 virus and possibly

cytomegalovirus.

Our DAN prescribed Valtrex 500mg twice a day. Our Dan also started our son on

Flagyl, because he recently tested positive for Clostridia. So he is currently,

on these medications, the supplements mentioned above and various anti-fungals

and anti-parasites. (We stopped chelation, however, while we are doing the

Valtrex trial.) After 28 days, we have noticed his behavior has regressed a bit.

He seems to be very cranky and is waking up a lot in the middle of the night.

Last week, we noticed a strange rash on his chest (small red pimple-like

eruptions) which spread to his back. At times he acts like he is not feeling

well. He is getting a headache or a stomachache very frequently. Some of these

symptoms seem to indicate that he may be responding to the Valtrex therapy.

However, I have not seen any significant gains yet. I am worried that the

dosage may not be adequate and we may just be grazing the surface. I asked our

DAN and she said that the dosage was fine; that Valtrex builds up so you do not

need to come in at a higher dosage.

My son is 45 lbs. I have read in various posts in this group that it is

important to dose Valtrex three times per day and that a child around my son's

weight should take 500 mg of Valtrex three times a day. (I read Stan Kurtz's

papers and many posts.) As mentioned, my DAN is not in agreement with following

this approach (she is a reputable DAN doctor, by the way.) Should I follow her

approach or continue to push for the higher/more frequent dose. I do not want

to lose a valuable opportunity during this trial.

I apologize for the length of this post (I thought the details may be of

significance to some of you...)

R.