Pandas Flare, histamine, food refusal, anorexia, mthfr, help?

[basilbeth]

Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas.

The next day he began a new and severe flare with food refusal.

Working with dr. T.

Many labs drawn, changed to cefdinir and Zithromax daily, no help.

Now will try valtrex and biaxin.

Forcing son to eat/drink, he lost 5 pounds, now 70 pds.

Not currently dehydrated, eating between 500-1000 cal/day under duress.

C/o nausea, fear of vomiting, swallowing difficulty.

Also poor disposition: grouchy, won't go outside.

In the 6 mo prior to arm break he would get a breakthrough pandas flare from skinning his knee or any break in the skin (bug bites).

In the last 2 weeks of this yucky flare I notice he improves after he eats a treat with dark chocolate.

Now I'm thinking caffeine, histamine, mast cell, etc reaction to having the pins pulled.

But I have trouble wrapping my brain around this concept. Can't reach dr. T yet.

Can any of you school me in how this works?

The histamine, mast cell, inflammation, genetics, mthfr.....

Labs, diagnosis, treatment....

Thanks so much.

[jan251]

I have no clue how this works. However, my first thoughts would be whether there is an infection that affects the skin and/or one that could affect the bone marrow (such as infections of red blood cells). Just throwing out ideas...

 

Re: the dark chocolate, that's interesting. If it were me I would try CocoaVia to see if it helps. I think I read about it on this board a long while back. There are capsules and IIRC, there might be a drink. (Or I'd be giving dark chocolate every day!)

Edited August 21, 2015 by jan251

[pr40]

nitrous oxide is my guess read about it

[dut]

Yeh, I'd consider nitrous oxide, too. In those with MTHFR issues it can lead to precipitous drop in B12.

 

Hope you get it sorted out...

[sarojane]

Try a methylated b-complex for a few days. We use children's Oxylent. My daughter can't have nitrous because of the c6447 (I think that's the snp ) snp she has.

[sarojane]

I should clarify. Try a b-complex to see if the flare calms. We did that initially. Now we use oxylent as a daily multi-vitamin for DD.

[Wombat140]

That is bad, really sorry to hear you've been having such a crisis. Are things any better yet?

 

I don't know anything about CocoaVia - their website seems delightfully vague about how concentrated their product actually is supposed to be compared to ordinary cocoa - but if dark chocolate helps you could try him with a drink of plain cocoa, that way you'd get the same thing without sugar. Be careful to get "cocoa powder", with nothing else in it but cocoa, not "drinking chocolate" which is full of sugar (confusing, eh). I like it a lot just made up with hot water, but if your son finds it too bitter like that you can add milk. It does still have caffeine in it, of course, so don't overdo it, but a mug a day shouldn't do any harm.

 

edit: Just noticed you asked about MTHFR. I'm in the thick of dealing with that lot myself so I can pass on a certain amount. Have you had tests done for that? The whole subject of mutations is so extremely complicated that you can't really do much with it by trial and error - there are too many interlocking mutations - if you're going to do anything from that point of view you need your child's list of mutations in front of you. Although if he's reacted badly to folic acid supplements in the past then he may have the MTHFR mutation, and if he never does well on supplements containing sulphur (they include N-acetylcysteine, garlic, turmeric and SAMe) he may have the CBS mutation. The test you need is the 23andMe DNA test, which is a saliva test so that's easy. It's $99 and takes several weeks to report back, but it does give nearly all the relevant mutations (you can run the results through another website, free, to pick those out, see http://latitudes.org/forums/index.php?showtopic=23789#entry180761 ).

 

Good luck!

Wombat140

Edited August 26, 2015 by Wombat140

[AliceInWonderland]

I think the problem may have been your child's exposure to nitrous oxide which inactivates vitamin B12; causing behavioural and neurological disorders.

Please have a look at these links:

 

B12 Deficiency and Nitrous Oxide: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)75143-6/fulltext

B12 Deficiency-Who Is At Risk? http://www.b12deficiency.info/who-is-at-risk/

 

Although we didn't know it at the time - after our 10 year old son's appendectomy with nitrous oxide he began to hallucinate. His mental state gradually went from bad to worse over the next 7 years until he was psychotic, demented and bedridden by age 18.

 

What brought him back from the brink were massive injections of vitamin B12 hydroxocobalamin.

He was 100% normal for the last 6 months until he caught Mediterranean Spotted Fever in November which blew him right out of the water.

 

Sigh....

 

[Wombat140]

Hello Alice. How did you find out he was B12 deficient? I mean, I assume you couldn't have convinced a doctor to inject massive doses of B12 just because his symptoms were similar to those in those Internet articles? Or did you?

[mama2alex]

Wombat140 - Actually integrative and DAN docs in the U.S. give various B vitamin injections as part of treatment quite often. I wasn't recovering from pneumonia recently (after a week of Augmentin), so my integrative doc gave me a glutathione IV and B complex injection and I started to turn the corner the next day. The right doctors don't hesitate to use these tools.

[AliceInWonderland]

Hello Alice. How did you find out he was B12 deficient? I mean, I assume you couldn't have convinced a doctor to inject massive doses of B12 just because his symptoms were similar to those in those Internet articles? Or did you?

It was an exhaustively researched...shot in the dark.

 

You see, my husband was going down the tubes at the same time, but with totally different symptoms. The docs basically sent him home to die after his second acute pancreatitis attack in two months, fatty liver (this is a guy who never touched alcohol) constant dizziness, personality change, screaming pain in practically every muscle of his body, constant exhaustion, heart problems, high cholesterol, pre-diabetes, stalled digestive system...in short, a mess. I decided I had nothing to lose by searching for similar case studies for each of them on PubMed and then do a cross reference against my family's present symptoms and known medical histories. It took me about three months of 24/7 research to get to a "bottom line" of pernicious anemia. I had to twist my GP's arm somewhat to write a script for the shots, but for my husband at least, they worked immediately. I had to dig some more until I discovered that my son's extensive neuro damage required huge amounts of "hydroxocobalamin" and NOT the "cyanocobalamin" I was given by my GP. I wish I had found those links I posted when I was going through that . I discovered them just recently!

 

It was shocking to realize how clueless most doctors are about the symptoms and treatment of B12 deficiency. The same applies to neurologists (who should know better) and especially psychiatrists.

 

There's an outstanding book by Sally Pacholok R.N., and Jeffrey Stuart M.D. which you can get as an e-book on Amazon which IMHO every parent should read called, "Whats Wrong With My Child?"

 

I must warn you however - after you read that book, you won't sleep for a week!

[searching_for_help]

I think those mentioning nitrous oxide and the affects after for some is the right direction to look. I think that is the MTHFR c677t. I believe it can now be tested for by itself without having to do the 23andme. I'm pretty sure my gynecologist had just that snp run to see if I might be susceptible to high histamine.

 

Regular docs aren't up on much of this, and B12 tests are very unreliable. MTHFR and nitrous oxide can also cause low folate levels - but don't add more "folic acid". It's not found in nature and you would need "methylfolate". I've read that MMA tests are better for B12 testing, but the results are different in that if the MMA results are high, the B12 is actually low.

 

I remember posting a case where a teenager began to have all kinds of psych symptoms (OCD, anxiety, etc.) and even problems with his gait, and it was all due to B12 deficiency caused by an H. pylori infection in his gut. Sadly, most of these people just end up with prescriptions for psych meds that will NEVER treat their underlying illness. BTW, this boy was completely cured after H. pylori treatment and I think they gave him B12 infections, also. (Point being, low B12 and other nutrients can cause all sorts of behavioral changes...)

 

PUBMED has lots of articles for Nitrous Oxide and MTHFR. You could print one out and take it to your doctor. If he/she doesn't look into it, I'd look into getting another doctor.

 

This is a good link about MTHFR: https://www.psychologytoday.com/blog/the-integrationist/201409/genetic-mutation-can-affect-mental-physical-health

Edited January 18, 2016 by searching_for_help