pr40

as most here will testify, healing is a process not an event. we hope for a better quality of life despite life-long issues. not sure if the issues are going to be ocd or auto-immune or both, but getting our children where the THING does not define them, where they know how to cope, where they can have friends, partners, carreers, etc.
I don't think, however, that they will ever want to have children and perpetuate this to the next generation.
so, yes, healing is the extension of what you define in your post --- you can also call it not getting worse.

Lipoic acid, biotin, vit c, mutltiple, fish oil. -- that's all?
if it is something to do with nerves, you may want to include magnesium. then also either zinc or copper depending on what he might need.
how about anti-inflamatories like oil leaf and cq10? perhaps others?

elvis
this article might be about the same issues that you might have. i got it from MTHFR support group -- <carla@mthfrsupport.com>
 
 
COMT (Catechol-O-methyltransferase )

Many of you want to know what COMT is and how it can impact MTHFR (methylenetetrahydrofolate reductase). From my own personal experience I will explain how it has impacted my life and what I have learned from many of the practitioners at MTHFR Support. I will also give you a simplified explanation of how it works.

COMT V158M and COMT H62H are related to dopamine, epinephrine, norepinephrine and estrogen dominance. When these COMT’s are expressing we will have trouble breaking down the catecholamines dopamine, epinephrine and norepinephrine and the hormone estrogen. COMT is related to anxiety attacks, panic disorder, schizophrenia, PTSD and hormone related cancers.

So how will this affect people who are treating MTHFR with 5-methyltetrahydrofolate? When COMT is expressing and we take high doses of methyl donors, we can increase anxiety. So many of us need lower doses of 5-methyltetrahydrofolate and we try to get most of our folate out of leafy greens, beans, eggs and berries. Now remember just because you have COMT does not mean that it is expressing. This is very important to get a healthcare professional who understands nutrigenomics and methylation to determine if COMT is expressing.

When treating MTRR, TCN and FUT2 with B-12 and COMT is expressing, methylcobalamin may not be the best choice. I had the pleasure of attending one of Dr. Richard Deth’s presentations at Autism One this year and learned that it is normal for COMT’s to be methyl B-12 deficient. There are other forms of B-12 that practitioners are using to treat people who have COMT. Some use hydroxy B-12, others use adenosylcobalamin and some use a combination. Just because you have COMT please do not get off of you methylcobalamin without first talking to your practitioner.

I experienced the expression of COMT back in 1994 when I took an NSAID (non-steroidal anti-inflammatory) for PMS. I went into anaphylactic shock and had to be resuscitated. I was given epinephrine, Benadryl and prednisone. Six hours after lying in the ER, the doctors felt it was time to release me. I complained about rapid heartbeat and nervousness. I was told this was normal after getting epinephrine, to go home and that it would wear off in a few days.

A few weeks passed and I did not get better. I actually got worse. My heart would be racing so rapidly that when someone was speaking to me, all I could see was their mouth moving and all I was hearing was my heartbeat in my ears. My eyes would roll in the back of my head, I would foam at the mouth and fall to the floor with what looked like a seizure.

After multiple ER and doctor visits I was diagnosed with PTSD and one of the worse cases of panic disorder they had ever seen. I explained to them that this did not happen until after I was given the epinephrine. They did not want to hear this. I was put on an antidepressant and benzodiazepines that took me nearly 2 years to come off of.

Sadly if doctors knew that someone homozygous COMT V158M and H62H cannot break down catecholamine’s well at all, they would have taken a different approach. Maybe some IV NAD. Many people have asked me if I was to go into anaphylactic shock again, would I use epinephrine to save my life? I always say yes. There are ways to break it down naturally with niacin rich foods, NAD therapy and also avoiding caffeinated and dopamine rich foods.

COMT does express in me so I test my neurotransmitters frequently. I avoid black tea, green tea, white tea, coffee and dopamine rich foods. I eat niacin rich foods and I also eat chicken and turkey which contain tryptophan and converts into niacin in the liver to help take the edge off. I have also found that living a simple life and surrounding myself with nature helps. Meditation is something I do daily. Sitting in an empty room and just clearing my mind helps so much. Always remember one man’s food can be another man’s poison.

there are not enough posts about improvement. here is one. Today we are much, much better than we were a year ago. We are not out of the woods yet and life is still difficult but it does not seem hopeless as it used to.
here is what we did:
1) abx, for a year now. Augmentin and Zitrhomax
2) gluten free, casin free, sugar free, and then also night-shades free -- not as hard as you'd think if you have basic cooking skills and time
3) supplements -- many anti-inflamatories, magnesium, zinc, vitamin D. we also expereimented with methylation supplements but I am not sure what worked.
4) behavior -- there were times when nothing worked. when they are approachable rewards do motivate them as do frequent time outs, time alones, which help them calm down and regroup.
5) total dedication to them by both parents. we are older didn't mind much not being able to do anything other than high maintenance for the kids.
6) reading this forum. it calms me down and, of course, this is where I find my best advice.
thank you all
 

there are not enough posts about improvement. here is one. Today we are much, much better than we were a year ago. We are not out of the woods yet and life is still difficult but it does not seem hopeless as it used to.
here is what we did:
1) abx, for a year now. Augmentin and Zitrhomax
2) gluten free, casin free, sugar free, and then also night-shades free -- not as hard as you'd think if you have basic cooking skills and time
3) supplements -- many anti-inflamatories, magnesium, zinc, vitamin D. we also expereimented with methylation supplements but I am not sure what worked.
4) behavior -- there were times when nothing worked. when they are approachable rewards do motivate them as do frequent time outs, time alones, which help them calm down and regroup.
5) total dedication to them by both parents. we are older didn't mind much not being able to do anything other than high maintenance for the kids.
6) reading this forum. it calms me down and, of course, this is where I find my best advice.
thank you all
 

to answer you question:
1) I suspeceted PANDAS because no other explanation fit.
2) our kids were too young for mental ilness.
3) there was no history of it in either family, but a lot of auto-immune issues on both sides.
4) change of symptoms.
5) their abrupt appearance and disapparence.
then, yes, blood tests.

here is a theory based on my wife's behavior. She went through a denial for a year, then when she could not deny it anylonger she switched to saying "it is not that bad." But, in our case, I think that there is something wrong with my wife, too. She has high IGG lyme markers and some of the same behavioral issues as our children. She wasn't like that the first 15 years of our marriage.
 
If I have an advice to give, it is this: you got to approach your spouse the way you do your chidlren. I don't mean as you would an infant, but as you woudl a person who needs some kind of help. Your spouse may need help in realizing what is going on or he might need more help than that. Or he may not want to be helped. I was lucky that in some way my wife realized that something was wrong with her and tried very hard to figure it out.

did you do basic analysis of vitamins and minerals? how about amino acids? then also, do you know what mutations you have on the methylation pathway?
what is your diet? is it healthy? etc.
There are few relatively simple and inexpensive things you can do and see if they help with your headacke.
good luck

here is a summary that I put together. the question is now, as you will see, if anyone on the forum had experience with this valproic acid and if it worked.
From page 5: "These antibody-targeted antigens namely, D1R and D2R, are
key components in the regulation of the dopaminergic pathways
which are considered to be the source of the chorea and
behavioral symptoms. Consequently, both are successfully targeted
with anti-dopaminergic drugs [14]."
 
The research cited in the endnote 14 says, “In view of the present results we recommend valproic acid as the first choice drug to treat Sydenham chorea.” (“Comparison of the efficacy of carbamazepine, haloperidol and valproic acid in the treatment of children with Sydenham's chorea: clinical follow-up of 18 patients.”)
 
Valproic acid, “Valproic acid (VPA, Valproate), an acidic chemical compound, has found clinical use as an anticonvulsant and mood-stabilizing drug, primarily in the treatment of epilepsy, bipolar disorder, and, less commonly, major depression. It is also used to treat migraine headaches. brand names Depakote, Depakote ER, Depakene, Depakene Crono (extended release in Spain), Depacon, Depakine, Valparin and Stavzor.”

my kids have pandas and I tend to see most tics through that optic. did you make sure that the tics your son has are not related to infections like lyme, strep, or mycoplasma? normally, you would do a bloodtest for these, IGENX for lyme, regular lab for the others, as well as immune markers.
Symptoms you describe, especially their going and coming back, their change mimicking autism, remind me of PANDAS.
Best of luck

see if dr K would respond to your question. he sometimes answers his e-mails, esp when they are very precise as your question is.
 
thinking seems to be that if the immune system is strong, IVIG will not help. If, on the other hand, titers are high, that would be a reason to believe that IVIG would be helpful.
 
we try with total attack: abx, methylation supplements, anti-inflammatories, restricted diet, lots of outside and exercise, some therapy. this because our kids immune systems seem to be fine.

the study says that another Canadian study reached different results in respect to AA.
AA goes for boys and for a specific genetic type, Turkish or something. (I have some of those, too.) Which itself suggests that there are other genes which are involved.
the reason they went for TNF is that it is implicated in other auto-immune conditions. There is a whole slew of such studies in fact for all sorts of things including cancers.
Another implication of this study that was not mentioned is that we can treat PANDAS the way we treat rheumatoid arthritis by suppressing TNF. I am saying that that is a potential implication not an actual fact.
Looked another way, this study is just making us run in circles. The real breakthrough would be that they identify mechanism underlying auto-immune conditions and then also identify genes that are involved.

if dd recovers so quickly, you are extremely lucky, i'd say. for most on this forum, recovery is years long. 90% is a success. recovery requires not only abx but also help with metyhlation and reduction of various inflammations through diet and life-style.

or you can also give abx for exacerbations. abx also have anti-inflammatory properties.
if you cannot get abx, perhaps other anti-inflammtory measures can be taken in addition to ibuprofen as LaurenK suggests, namely diet and supplements.

also, do lyme test (western blot) with Igenex.
in our case, lyme seems to be underlying pandas symptoms.
steroid taper, abx, and/or IVIG might be helpful in addition to what you are already doing for methylation.
so, get to be seen by a PANDAS dr. I am not sure who is closest to Atlanta.

If I can sum what previous posts are suggesting: you are your kids best dr or, rather, you should teach yourself to become your kid's doctor. And then when you do that, you can set realistic goals and choose real drs that can get you there.
There are prudent ways to proceed like check for co-infections, monitor myco (if that is what your kid has), see what other autoimmune ailments you have in your family, check for food and environmental sensitives, and so on.
Put another way, I don't see any one dr out there yet for PANDAS/PANS

If I can sum what previous posts are suggesting: you are your kids best dr or, rather, you should teach yourself to become your kid's doctor. And then when you do that, you can set realistic goals and choose real drs that can get you there.
There are prudent ways to proceed like check for co-infections, monitor myco (if that is what your kid has), see what other autoimmune ailments you have in your family, check for food and environmental sensitives, and so on.
Put another way, I don't see any one dr out there yet for PANDAS/PANS