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Hi fellow zonie! Dr. Alarcio will probably test for lyme but only the standard CDC testing (whatever you can get done through labcorp or sonora). We do have an Arizona support group for PANDAS/PANS and a private facebook group as well. Let me know if you'd like to join us. Also, @ getting labs back from Dr. Alarcio- I always have her copy results to my daughter's PCP (good, PANS savvy guy, who is also getting up to date on the MTHFR issue), and then its easy for me to get results from him. PCH is supposed to work on the communication problem- but, right now it is very difficult sometimes to get in touch with Dr.A's office.

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I am deeply concerned about the Bipolar dx for a 3 year old. What testing has been done? Has he received all pertinent tests for PANDAS/PANS only excluding the Myco and genetic testing? Myco is a pret

There's no way I'd accept a bipolar dx for any child so young. To me, that's an "I don't know what this is, so I'll put this label on it and send you on your way". No way would I give a 4 yr old bi-po

The worsening and then improvement on antibiotics may be suggestive of Lyme disease - esp. depending on where you live. If you would like more information on lyme disease, please ask. Bartonella (tick

ince we have to redo the MTHFR and Mycoplasma, are there any other tests I should ask to have done at the same time?

Currently my 3.5 year old (30 lb) boy is on 250mg/5ml of Augmentin ONCE a day. Should it be twice a day?

Would the 23andMe spit test detect a CBS mutation like your son had LLM? Should I order that test now or wait until after the bloodwork results?

Could we try supplementing with methylfolate right now or would that be bad for him if he does not have an MTHFR mutation? Would it mess up the MTHFR bloodwork results?

 

Thank you everyone again. My sister does have Bipolar Schizophrenia but I don't want go to that route....I just want to help my precious little boy get back to where he used to be.

 

Augmentin has a half life of something like 1.5 hrs. So yes, if you're going to be on it, you should definitely be getting twice a day dosing. Some kids do well on augmentin, some do better on azithromycin. Once you get a dx or settle in with a doctor who supports you, you could ask for a trial of zith, which is a once/day dosing. With the inability to get remission that you describe and the number of symptoms you're still seeing after 70 days on abx, I'd definitely push for better abx coverage and also test for mycoplasma - which can respond wit zith but augmentin won't be effective.

 

In addition to a possible chronic infection, here's one other thing to consider, given your sister's history. Sometimes, a body can be struggling with a methylation or nutritional deficiency but it gets by at maybe a 70% level. Not great, but well enough to fly under the radar, particularly if you're a toddler, can't communicate how you feel (except thru behaviors) and your family doesn't know "the real you" well enough to tell what's you and what's not normal behavior for you. Then along comes a serious or chronic illness and that 70% level gets knocked down to 30%. The body needs to send extra resources in to fight infection and the rest of the system comes crashing down like a house of cards, because it barely had enough resources to stay functional to begin with. So a depleted system will send out SOS signals in the form of fatigue, mood swings, behavior changes.

 

So IMO, it isn't just a matter of throwing antibiotics at a chronic infection, although that is clearly a necessary first step. A strong body needs abx to fight an infection. A body that's weak to begin with needs that help even more and for even longer. But, it also needs help addressing the weaknesses that existed before the infection. the infection was the tipping point - the Hurricane Katrina. Now, you have to repair a lot of infrastructure in addition to just fighting the infection. At least, that was true for my kids.

 

Which leads me to say yes, I personally would recommend the 23andMe spit test now. It takes 7-8 weeks to get results and it will give you info that you can't get elsewhere (yes, you can get MTHFR separately, but you need a bigger picture to know what's really contributing to the mood swings and anxiety - and it does give you results on CBS and 990,000 other mutations). For example, both my kids suffer from anxiety when they're sick. Both have a COMT mutation, which is the fight or flight gene. COMT is one of the genes the regulates how quickly your body degrades serotonin and dopamine. So in a stress situation, people with normal COMT are able to handle a surge in neurotransmitters correctly and still make calm, rational decisions. People with COMT mutations get their systems flooded with serotonin and dopamine - like having the carburetor flooded with gas - and they stall/panic/freeze. So if you only look at COMT, you think oh, you need supplement X. But while X is great for my DD, my son also has an MAO mutation and no VDR mutation, so X is bad for him because of these three mutations taken as a whole.

 

Can you start taking L-Methylfolate regardless of your son's MTHFR status? I wouldn't. L-methylfolate is a methyl donor. It's a god-send for my DD with the MTHFR mutation. It would make my son, who does not have an MTHFR issue and already has too many methyl groups (which make him aggressive/angry under stress) and instead needs regular folate so that his body can use up a methyl group as it converts folate into methyl-folate. Without knowing if MTHFR is an issue, you can't assume methylfolate is "good" for everyone.

 

It certainly sounds like your son has PANS and that Peglem can help you navigate the AZ medical community. I know this is a nightmare for you right now. It may take awhile to get things straightened out - some of us have been battling this disease with our kids for years. But it does get better. Lots of two steps forward, one step back. But slowly, we get our kids better.

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I totally agree with everything these dedicated moms ( and dads) have already said. I would never accept a bi-polar diagnosis at this very young age. I know that you are worried because of your sister's condition but we all have a "different" fruit dangling from our family trees and that doesn't mean that your son will carry that same fate. There may be a genetic link and, in fact, your sister may have a genetic underlying condition that has brought about her diagnosis. How fortunate for you and your son that you have an opportunity while he is young to help correct any future problems. I encourage you to explore every avenue - infection tests, genetic panels, antibiotics, LLMDs, PANS/PANDAS specialists -whatever you can do to get to the bottom of what is going on inside your little boy's body. 23andMe is a great, non-invasive way to get a genetic profile which can be a roadmap on your journey to healing. There may be mutations that are relatively easy to bypass (like staying away from sulfurs or adding in methylfolate or extra B12) and that knowledge can be life-altering.

Most importantly, love him up as much as possible. No matter what happens, love him, love him, love him. Like all of us here, I adore my child but there are so many challenges at times that I have to remind myself that she is not well. And, God forbid, if her illness was more well-known (like diabetes or epilepsy or cancer), I would probably respond in a different way. This has gotten me through many raging tantrum episodes without becoming a raging mess myself.

Little things you may want to try now which may help while you wait for testing.....limit his glutamates and calcium. As Dr. Yasko says, "Glutamate is the gun but calcium is the bullet." It may be of some help for now to try eliminating dairy to see if it helps. I would also suggest a comprehensive stool analysis to rule out parasites, strep, h. pylori, yeast, fungus, etc. You can learn so much without having to be "poked." Big fans here of the poop test. :-)

Give your little guy a hug. You are doing a great job getting to the bottom of this while he is so young.

QueenMother

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**sorry, this post is on wrong thread**

 

I have found the new Buhner book (on Myco and Bart) quite fascinating-

 

He states: 'The Mycoplasma's are the most complex of the Lyme co-infections, their range of actions in the body very broad.

Because they scavenge so many substances there is a lot more involved in their treatment than with simpler bacteria such as Bartonella.'

 

The take away from the Myco part of the book, for me at least, is I would heavily supplement many nutrients with this infection in order to heal (and there are examples and details in the book)

Olive oil, eggs, Brazil nut, tahini, pomegranate juice, avocados,

Cordyceps, fermented wheat germ....

High end multi vitamin mineral, amino acids, etc.

 

With a child, maybe see if you can get it in somehow with a tasty blended shake drink somehow....

 

The book was enlightening for avenues and suggestions for dealing with the cytokine cascade (inflammation effect from particular infections)

Edited by S & S
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Sorry to be off topic but reslize i too responded on the wrong thread. Thanks S&S, I need to get the new Buhner book. She likes avocados from that list. The last time I tried a multivitamin she tanked but that was before treatment. She is on quite a number of supps now and just started arteminisin( I know Buhner doesn't like that) with edta for biofilms per new llmd. If you can believe it I completely forgot to ask about dds myco level during the while visit. I am curious how that will effect myco. Integrative upped enhansa and added carnitine. Something has got to work!

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peglem - yes I would like to join both groups! Thank you for the advice on the bloodwork. I think I'll get the copies from her office at our appointment this month. Glad to hear from someone else in AZ!

At the beginning of all this I thought it was a parasite, but we did a bunch of stool tests and they all came back negative. I put him on VitaKlenz for 30 days but it didn't seem to do anything. I am going to do the 23andMe test for sure.

We did 2 weeks of Azithromycin at the very beginning of this 70+ day of antibiotic treatment...it didn't seem to work - we had 4 good days on it and 10 bad days.

I am hoping we've found the right antibiotic now - Augmentin brought my son back in January after a very long horrible relapse...it took me 2 months to convince his pediatrician to try it, and finally after he got the flu she prescribed 10 days. Within 3 days he was starting to come around, after 5 days he was almost completely back to himself! He stayed pretty good - ups and downs but nothing drastic until he got a cold a few days before our appointment with Dr Alarcio.

We are now on day 19 with Augmentin and had 15 good days in a row (several of them I wrote in my log "Amazing excellent day!") We just got over having 2 very difficult days but as of yesterday he has been getting much better again. I just looked at my log of symptoms and 19 days ago he was doing so bad - horrible mood, acting like a "villain" or "naughty guy" much of the day, obsessively repeating nursery rhymes for 1-2 hours at a time, bad words, and he did seem to be having auditory hallucinations.

Right now it is 10:30pm and my son is bouncing off the walls. He took a nap which he never does, but he is SUPER happy, overly happy. Talking so excitedly and running around the house HAPPILY playing a "naughty guy and good guy game", laughing, being NICE, he has not said a bad word or called us or himself or other kids stupid since around lunch time. When he is doing bad he adds "poopy dum dum" or something like that to the end of many of his sentences for no reason. Calls himself Stupid when he sees himself in the mirror. Screams at us for even saying Hi to him.

I am hopeful this is a big piece of the puzzle in my son's recovery and anxious to do the other tests you all have recommended.

One more thing. At 2.5 years old we noticed a Lipoma on his chest. This was right around the time all this started. It definitely has gotten bigger over the past year. Is there possibly any link? I know it isn't common for a toddler to have a Lipoma, and I've read there are often more than one. What if there is one near his basal ganglia that we can't see? I am going to call Dr Alarcio and see what she thinks.

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Okay, I had to look up Lipoma and I don't know if its connected.

Not sure when the next "in person" meeting is- I think they are trying to get Dr. A to come and give a presentation.

I'm PMing you here on this board the info to join the FB group- we have 79 members, so lots of support and help here.

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Hi,

 

I agree with the others re not accepting the bipolar diagnosis. I once had a child psychiatrist tell me bipolar (in kids) was a garbage can diagnosis. And did you ever notice that the list of "bipolar symptoms on kids" are all PANDAS symptoms? Hmm.

 

I would also rec doing "the test for Pandas", the Cunningham test.

 

Re the augmentin: so your child is getting 250mg (5ml) once daily? That is too low!!! Augmentin should be given at least 2x daily. My dd took 1000mg 2x daily (Augmentin XR) when she was about 80 pounds. I'm not sure what would be considered a good dose for a 30 pounder, but at the very least it should be TWICE daily.

 

Re your sister... I do wonder about these pandas families that have a hx of mental illness, how much is due to pandas (or some type of infection/autoimmunity).

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Another thing you need to remember is the amount of time your son is on the antibiotics. He should be on a high dose antibiotic for at least one month. Since you say you were supposed to test for Myco p, I would hope to see him on something that would cover Mycoplasma. Augmentin is very good coverage for strep but by itself does not cover Mycoplasma. So if you are dealing with Mycoplasma you would want to look at something like Biaxin, or Zithromax. I would highly suggest following through with the Myco titers. Many PANS symptoms are linked to Mycoplasma. Once you know what the infectious trigger is you can get an appropriate game plan. Many PANS children end up on a combination of antibiotics so that may be something you consider. You need to see a specialist ASAP but in the meantime high dose antibiotics on a continuous basis are a must.

 

Dedee

Edited by Dedee
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I just read thru this tread to see if anyone had mentioned the Cunningham test. You can get that test thru moleculera labs. Moleculera.com I think. EAmom mentioned that one. I don't think we can call it officially the pandas test, but it's the closest thing we've got. It will let you knownifnyou child will likely respond to immune mediated treatments, like steroids or ivig. If you child is possible on this test, you know for sure you are dealing with auto-antibodies to brain tissue.

 

You must be overwhelmed by all this advice, and all these tests. Your doc certainly had a long list for your first round of testing! I'm sure that will help you greatly in ruling some conditions and infectious agents out.

 

Id recommend getting a prescription for a tube of lidocaine. Put on your child's arm about 45min prior to blood draw. Tube should last a couple of years, and many,many blood draws. And it can help your child avoid needle phobia...which my son had before we discover this trick...and it was NOT pleasant.

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