Liberty was started on an antifungal back in January for the purpose of preparing for the antiviral which can make a yeast situation worst, and also to rid him of his cradle cap. So far the antifungal has worked very well for Liberty. As you may recall, the yeast die-off he experienced when we first began this treatment was horrendous. He has now been on the antifungal for over four months with liver function tests checked monthly.
I began the Valtrex in a tiny dose, same as the antifungal. I never go by the dose prescribed since I know that Liberty is more sensitive to these medications. He had at least a week on the Valtrex slowly titrating the dose up to 1/2 a teaspoon twice a day. When we reached 3/4 teaspoon on Sunday, the child almost came unglued. He cried, wailed, and I am pretty sure he was hallucinating. He was batting at the air. He had a few times where he was okay, even going outside to play, but then would go right back into a huge screaming fit. When one episode went on for over 30 minutes non-stop, I was terrified. I called the office in New York but never got a return call. I should have known to give Liberty some charcoal to absorb the medication, but I was too busy calming him down for my brain to even register this.
When I looked up die-off reactions from Valtrex, all of the descriptions were of "emotional instability." A family member recently had a bout of shingles and took the drug, and told me it made her feel odd and hyped her up. We had also given Liberty his methy B-12 shot that day so that might have sent him over the top.
At any rate, it was pretty bad. He had been up crying off and on all weekend with what I thought was postnasal drip, but in hindsight, it could have been the Valtrex all along.
When you start looking around on Google for information, you find all sorts of things. There are some who say that symptoms are supposed to get worse before they get better and to hang in there for something like 50 days. Well, maybe if my son was just irritable or stimmy I could do that. Instead, he was screaming in a rage, hurling himself into my arms, giving me that pleading look. I think he was also dizzy. I can't just sit back and watch him do that for over a month!
It has been three full days since Sunday and he is still emotionally labile and really stimming. Last night I thought I saw his eyes start to roll up, but it never looked like a seizure and he seemed to be okay thereafter. This has prompted me to renew my interest in getting an MRI and another EEG.
Valtrex was $210 but we can say we tried, I guess.
I was not quite sure what Dr. Bock's recommendation would be, but he said to stop the Valtrex completely, and that goes along with the feeling that I have. I feel relief and that, to me, means the right decision was made. I never gave Lib anymore after that episode.
I will say that Liberty began saying more vowels as of yesterday. He is saying "uh-oh." That's pretty big. Twice today he looked me in the eye and said, "mom" very clearly.
Of course there are some folks who think that I am giving up on a therapy to bring Liberty back from wherever he is, or at least give us some speech. I'm not so sure about that. The way I felt Sunday was that putting my child in pain and in danger on an adult drug that has some very serious side-efects was not acceptable. Dr. Bock must think that we need to take a different route, and I have trusted his opinion up to this point. That's what I pay the man for.
A blogger friend reminded me that we hire doctors for their advice, not to do everything they tell us. Thank God for my wonderful support group in the blogisphere. I love you people to death. :)
In the end, I have to go on what my gut is telling me. Truly, you have to feel your way on this path.
Maybe that is another thing Liberty is teaching me. Since he is non-verbal, I have had nothing to guide me EXCEPT my intuition.
4 comments:
You don't need me to say this but - Respect your gut!
Have you tried Vitamin A for antiviral?
I would like to more about this, Robin. Liberty is consistently low in Vitamin A and so our doctor started him on mycelized Vitamin A drops. I understand that A can be toxic, but to what extent? I will ask him about this and please tell me more about it when you get a chance. I know that vitamin A deficiency and mercury toxicity go hand in hand, too.
I am sorry but I love the pun about gut feelings while we are talking about gut issues with autism!!
You know what I'm going to say, but I'll say it anyway, your intuition is all you need. It's never wrong, if we can only be sure that's what we're tapping into, and not all the static that threatens to drown out its pure voice.
XO
&
Happy Mother's Day!
Post a Comment