new behaviors/symptoms - baby talk, regression

[mmiglio]

Ugh. My dd12 has PANS and is being treated by Jemsek in DC for lyme, bartonella and myco p. She pulses zithro, Bactrim and minociline MWF for two weeks, adds flagyl on Th and Fri of the last week and has one week off. She is on her off week right now and will start second cycle on Mon.

 

We are at Rothman right now doing intensive ERP therapy for her OCD.

 

She is compound homozygous for COMT and also homozygous MTHFR 1298. She is a horrible detoxer and refuses lemon water, green tea and Pinellas but will take burbur twice a day and do Epsom salt baths (although our tub here at the rental condo while we're at Rothman is gross so she is only doing foot baths).

 

We are just starting very slowly to supplement for her mutations based on the Yasko protocol... starting with GABA which I just bought, and she refused yesterday. But she does take D3, K, magnesium, molybdenum, grapefruit seed extract (for yeast overgrowth) and a good probiotic. She has high iron and zinc and can't tolerate folic acid or any methyl groups so still trying to find a good multi vitamin and trace minerals that will work for her. I know she also needs manganese and iodine.

 

So... to my question... She was doing OK in therapy. It was challenging for her, and she would rage a bit but cooperate. Yesterday, it completely changed. Yesterday her eyes glazed over and she "left" and regressed in age dramatically. She was talking and acting like a three year old. For the rest of the day, she came in and out of it. We have had terrible storms, and she is afraid of thunder, when it thundered, she was a baby again. After a few minutes, she was her normal self. If I challenged her OCD instead of accommodating her, she was a baby. Sometimes this behavior continued for 10-20 minutes.

 

Previously, when she was scared she would rage... throw things, hit, kick, yell. I'm not sure which I prefer.

 

Any ideas? Is this just a new symptom we haven't seen before? Is this a new herxing symptom although she's more than a week off abx now?

 

We're going to try to keep her as calm as possible today... we aren't doing our therapy homework. We'll see if that makes a difference. We start abx again on Mon. I'm hoping that will bring some relief. Maybe the lyme and bart are back and are mad that we're trying to kill them and so are coming in with a vengeance. We are supposed to do this pulsing for three cycles and don't see her dr again until mid August. I was really hoping for a bit of a miracle that the first round would give us some relief but clearly that isn't happening.

 

I appreciate your help and thoughts as always.

 

Any other herbs anyone can recommend for detox? We can't even get outside to sweat b/c we're in for another two days of constant rain and storms. Makes it even harder to remain positive when we're trapped inside a small rental condo.

[rowingmom]

For how long has she been taking GSE? That was the only supplement that DD13 could not tolerate. Even the 2 drops 2x daily that the LLMD recommended be put on her toothbrush to address yellowing teeth because of plaque (improper oral bacteria) buildup. After 5 days or so her ticcing became horrible, she redeveloped night time enuresis and obvious behavioural regression - you are right about the 3 year old thing. It was that bad and she was 11 too.

 

I assumed yeast die-off and so did the LLMD however she had never acted like that with diflucan. In talking to Julie McIntyre, she thought that as with the grapefruit juice/statins interaction, the GSE was inhibiting the P450 detox pathway producing toxin build up. This made sense to me because I have always associated DD's ticcing with toxins.

 

After discontinuing it took a couple of weeks of 3x daily Meriva curcumin, double doses of Japanese knotweed and lots of other detoxing (lemon juice, Epsom salt baths) to relieve those symptoms.

 

DD was actually ticcing so badly that she could neither speak or read with the combination of vocals and head jerking/eye rolling. I remember her grade 6 teacher calling me in tears because she felt so sorry for DD.

 

Sorry I can't be of more help, but the discontinuation of GSE made a huge difference in behavioural regression symptoms as well.

Edited July 25, 2015 by rowingmom

[pr40]

i don't understand gentic mutations well at all but want to suggest that given her mutations, epsom salt may not be good for her. it's high is sulfur. do check sulfur processing with her mutations.

curcumin is also high in sulfur, unfortunately.

[mmiglio]

She has been taking GSE for nearly two months and took Nystatin for two before that, so I'm fairly certain it isn't that.

 

And she can tolerate sulfur pretty good. She is taking Bactrim which is sulfur based and has never had an issue with daily Epsom salt baths. She does take a low dose molybdenum which I know helps to detox sulfur. Nothing has changed in what she is eating or taking which I why I'm concerned.

 

For how long has she been taking GSE? That was the only supplement that DD13 could not tolerate. Even the 2 drops 2x daily that the LLMD recommended be put on her toothbrush to address yellowing teeth because of plaque (improper oral bacteria) buildup. After 5 days or so her ticcing became horrible, she redeveloped night time enuresis and obvious behavioural regression - you are right about the 3 year old thing. It was that bad and she was 11 too.

[mmiglio]

So I think I figured it out! Since this is her "off" week for pulsing antibiotics, she isn't on any antibiotics! She has been on them continuously since March 16. Ugh! I wish I had realized this earlier we would have put her back on zithro while waiting to start the next pulse tomorrow.