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Not PANDAS, but histadelia we think


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Anyone out there know anything about too much histamine and causing ocd stuff?

Went to see Dr F yesterday and he does not believe my ds has PANDAS but instead feels it is allergy related and too much histamine in his system etc which also crosses the bbb and gets to the basal ganglia gland and so.

 

So we come home with Omnaris nasal spray and are to give it at bedtime with claritan.

I also read that a certain B vitamin is good, yet others are bad....

Got a whole new bag of stuff to research now...any one been down this particular road that has any insight or advice, or tips???

I would love to hear what you found out. We are in the beginnings here...

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Our DS also has high histamine levels, as evidenced by eczema and pollen/mold/dust/cat dander allergies. He takes a Zyrtec every morning and a Benedryl every night.

 

When we decided to go after what we think might be excess glutamate contributing to his OCD behaviors, he starting taking a timed-released B complex vitamin twice each day instead of just once each day. While that hasn't caused any issues that we can tell, we also, initially, had him using a B12 sublingual lozenge to combat particularly stressful periods. But his eczema flared dramatically and, even though we thought the B12 helped him manage a bit better, we dropped it due to the painful skin patches becoming increasingly problematic. Later, we were told that B12 increases histamine levels.

 

We're still doing the time-released B-complex, and he still seems to be faring well. So maybe the time-released nature or the fact that it is all ilks of B vitamins mitigates the pro-histamine factor?

 

It all seems like a delicate balance at best. :(

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MaggieMoons and MomWithOCDSon -- Did your doctors test for high histamine or just use symptoms to diagnosis? Not to hijack this thread, but I think my son has low-histamine--no allergies whatsoever, not even to poison ivy. Also, my son has the "adolescent-variant" of PANDAS and Dr. T has found that these kids are usually low in histamine. It is significant to know whether a child is low, high, or normal for histamine in terms of what vitamins, etc. to give them, but it doesn't seem that doctor's actually ever check for this. Is it a clinical diagnosis?

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MaggieMoons and MomWithOCDSon -- Did your doctors test for high histamine or just use symptoms to diagnosis? Not to hijack this thread, but I think my son has low-histamine--no allergies whatsoever, not even to poison ivy. Also, my son has the "adolescent-variant" of PANDAS and Dr. T has found that these kids are usually low in histamine. It is significant to know whether a child is low, high, or normal for histamine in terms of what vitamins, etc. to give them, but it doesn't seem that doctor's actually ever check for this. Is it a clinical diagnosis?

Can you explain to me what distinguishes "adolescent-variant" of PANDAS? Thanks.

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MaggieMoons and MomWithOCDSon -- Did your doctors test for high histamine or just use symptoms to diagnosis? Not to hijack this thread, but I think my son has low-histamine--no allergies whatsoever, not even to poison ivy. Also, my son has the "adolescent-variant" of PANDAS and Dr. T has found that these kids are usually low in histamine. It is significant to know whether a child is low, high, or normal for histamine in terms of what vitamins, etc. to give them, but it doesn't seem that doctor's actually ever check for this. Is it a clinical diagnosis?

 

No, no official testing in our case, though I think there are tests available for it. Just clinicial evidence from his reaction to things that stimulate a histamine response, like pollen and cats.

 

I've heard Dr. T.'s comments regarding low histamine being related to PANDAS before, but since I haven't spoken with him directly about it, or seen anything he's written on the topic, I'm not sure what the implications of it are. Just given our personal experience, I have to wonder if perhaps the issue is not too much histamine or too little of it, but dysregulation of it. Or too much/too little of it in particular parts of the brain. I saw a paper abstract on line about researchers finding increased histamine in the caudate nucleus of Alzheimer's suffers, for instance.

 

Brain Histamine and Alzheimers

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Can you explain to me what distinguishes "adolescent-variant" of PANDAS? Thanks.

I think it is a phrase coined by the PANDAS doctors referring to PANDAS that starts at adolescence instead of (supposedly) ending there. In other words, a child whose PANDAS is not a pediatric condition starting before the age of 12. My son's problems started at 13 and he went into total exacerbation at 15 (almost 16).

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I must be out of the loop....Dr F????

 

My son has PANDAS and allergies exacerbated symptoms to the point of the same severity of a strep induced exacerbation. Claritin helped at first but then worsened OCD. So chart your child's progress.

 

Once we found the right allergy med, immune system calmed and stayed calm, things gradually improved. Actually, right now, my child doesn't have PANDAS reactions to allergies now.

 

What else is in your child's history that first led you to suspect PANDAS?

Edited by Vickie
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Hi - I'm also interested as, from what I've been reading, too high or too low histamine levels can be as a result of over or under methylation.

 

I got back on this track after reading a post about a mom seeing dr Keller in Redmond and being told by the dr that MTHFR gene may be to blame for the PANDAS symptoms. We also see Dr Keller.

 

An integrative Dr tested our dd for the MTHFR gene polymorphisms. She came back as a compound heterozygote, putting her at about 30% of capacity of the wild type genes. So our dd doesn't methylate well. (So we're currently supplementing with 5MTHF- methylated folic acid, B6, and methylcobalamin B12 with dr Keller investigating the addition of TMG aka betaine).

 

I don't totally get it all but there may be something to this MTHFR stuff and histamine being an issue for so many kids. Under methylators produce too much histamine and over methylators produce too little. So like Momof has said, maybe it's the dysregulation that is the issue and maybe it's the methylation cycle that is underlying that dysregulation. Dunno..more rabbit holes but there is loads out there to research.

 

One of the most easily read,comprehensive articles I've read is here

 

http://www.enzymestuff.com/methylation.htm

 

would love folks ideas on this.. (not sure if it's been discussed before)

 

:)

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Hi - I'm also interested as, from what I've been reading, too high or too low histamine levels can be as a result of over or under methylation.

 

I got back on this track after reading a post about a mom seeing dr Keller in Redmond and being told by the dr that MTHFR gene may be to blame for the PANDAS symptoms. We also see Dr Keller.

 

An integrative Dr tested our dd for the MTHFR gene polymorphisms. She came back as a compound heterozygote, putting her at about 30% of capacity of the wild type genes. So our dd doesn't methylate well. (So we're currently supplementing with 5MTHF- methylated folic acid, B6, and methylcobalamin B12 with dr Keller investigating the addition of TMG aka betaine).

 

I don't totally get it all but there may be something to this MTHFR stuff and histamine being an issue for so many kids. Under methylators produce too much histamine and over methylators produce too little. So like Momof has said, maybe it's the dysregulation that is the issue and maybe it's the methylation cycle that is underlying that dysregulation. Dunno..more rabbit holes but there is loads out there to research.

 

One of the most easily read,comprehensive articles I've read is here

 

http://www.enzymestuff.com/methylation.htm

 

would love folks ideas on this.. (not sure if it's been discussed before)

 

:)

 

Wow, thanks for the link, Dut! I really didn't understand the whole methylation, thing, but it seems clear to me now that my DS is an "under-methylator," which explains why he has higher histamine levels (as evidenced by allergic reactions) and responds well to a low-dose SSRI and melatonin supplements. So, if I can improve his methylation, maybe he won't need either of those on an ongoing basis?

 

More research . . . . . :D

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Momwith - yeh, dr Keller says she's seen a lot of PANDAS kids improve when addressing the under methylation issue (she currently sees 90 or so PANDAS kids). I didn't push for numbers etc last time we saw her but will do next time.

 

I'm desperately trying to get my head round it all.. the under methylation thing has so many implication in so many systems....

Edited by dut
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Momwith - yeh, dr Keller says she's seen a lot of PANDAS kids improve when addressing the under methylation issue (she currently sees 90 or so PANDAS kids). I didn't push for numbers etc last time we saw her but will do next time.

 

I'm desperately trying to get my head round it all.. the under methylation thing has so many implication in so many systems....

 

So, what does Dr. Keller recommend for improving methylation?

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Hi - it was the integrative dr that rec the following but dr keller says go with it and is also looking at using TMG (betaine)

 

we are using 5 mthf (methylated folic acid), B6 with some some magnesium in it and B12. The integrative dr rec'd hydroxy B12 so as not to overmethylate but I'm not sure I get the reasoning and we are changing to methylcobalamin B12. dr keller reckons we should really be using B12 injections as most b12 cycles thru ur system in 4 hours or so whereas injectable lasts for 4 days. DD may not go for that so we are doing sublingual 4 times per day (when we remember).

 

We may use TMG if she recs. it uses an alternate pathway to methylate. TMG is trimethylglycine and was wondering about it and that case study you posted about glycine being used to effectively treat the boy's symptoms... my chem is way too crap to work out the relationship.. could it be loading enough glycine into the system that even crap methylators can use it to rebalance. I'm probably way off mark and showing my scientific ingnorance :)

 

I can see why adding normal folic acid or hydroxy B12 may cause issues as it may lead to more build up of un methylated products...

 

I've found a couple of studies linking histamine and glutamate interations in the brain .. do you know anything in that area? you seem to be the glutamate guru :)

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I must be out of the loop....Dr F????

 

My son has PANDAS and allergies exacerbated symptoms to the point of the same severity of a strep induced exacerbation. Claritin helped at first but then worsened OCD. So chart your child's progress.

 

Once we found the right allergy med, immune system calmed and stayed calm, things gradually improved. Actually, right now, my child doesn't have PANDAS reactions to allergies now.

 

What else is in your child's history that first led you to suspect PANDAS?

 

We saw doctor Friedmeyer in FL. He was one that we were sorta referred to as a PANDAS doctor.

 

I am still definitely charting each DAY, and have been since the start of all this 10 months ago.

I am so happy to hear that your child is not suffering the PANDAS reactions anymore! And that is positive news and hope for us too!

I will watch the Claritin and see what happens...if I see an increase I will try the Zyrtec, is that what you switched to when you saw the OCD flare up more? What regimen are you doing? We are doing the Omnaris and Claritin at night as doc suggested i would work better.

 

My child seemed to have the classic symptoms ie sudden onset, age 7, history of strep, etc. I just started digging into the internet and one link led to another and it just all fit. The doctor thinks that it is more histamine related. He just did some basic tests in his office and observed my son. He did a scratch like test on his back that welted instantly, and also saw inflamed and swollen turbinates in both nostrils. So no blood work or that sort of testing. He did test for strep (rapid) and said it was negative. Given that we have allergies in both sides of the family, and my son was asthmatic and put on a nebulizer with albuterol when we lived in FL for 5 months when he was 2yrs old and it all went away when we left FL makes me think I am on the right path. We moved back to FL after 4 years and within a year all this PANDAS like stuff starts.

 

So again, I am on a search to connect with others like yourself who have been down this road and can share what they experienced, saw, and what may or may not work. There is not much out there on too much histamine as an issue. The doc did say it still causes the inflammation of the bbb and issues with the basal ganglia gland, that it why the Motrin worked for the tic. Thank god that it gone and has not come back, yet I suspect that when his histamine and allergies go out of whack again that it will if we are not on a good allergy regimen.

 

Hope this makes sense, I am exhausted and now on a quest to find info on this new route we are headed. But whatever it takes, and whatever works to make our ds healthy......it is ALL worth it!

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DUT - thank you for this link! It is still over my head and I'm going to have to re-read several times. But what's really interesting is that some of the supplements listed - zinc, B6, choline, taurine - are the things involved in pyroluria treatment (aka KPU) and have helped my son immensely. I also see Pfiefer mentioned on a pyroluria forum and this helps me connect dots.

 

Like the article says, it's a chicken/egg thing, but certainly raises some good stuff to look into. I really like the author's tome, too. Sort of "not sure what it all means but maybe it will be helpful" instead of absolute truths. Good find!

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