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My precious 3.5 year old son has been tormented for nearly a year now. A year ago he suddenly developed a tic - "picking" after an illness - he had 20+ scratches all over his face for over 2 weeks, and his personality changed 100% - rages, extreme irritability, no longer would go potty or take baths, etc. After 3 weeks and lots of allergy medication from his Dr which didn't work, I put him on Probiotics 5x a day and he improved instantly.

5 months later he got sick with a cold and he started having several tics and his mood changed once again so that he was unrecognizable as the same child. Meltdowns over everything, sudden OCD, strange statements, major separation anxiety, major anxiety around other kids, etc. I wrote everything down because it was so drastic and I have over 60 pages to date, so this is a VERY brief summary.

He was diagnosed PANS by a Neurologist over 70 days ago and has been on antibiotics since. All bloodwork came back fine, but the lab messed up the MTHFR and pneumonia mycoplasma tests and couldn't give us the results, and after 3x giving blood in 5 days my little guy could not take one more prick so we haven't gone back.

I am so confused though - before his diagnosis I was 100% convinced this was PANDAS/PANS but now I have no idea if it is or not. The first 2 antibiotics Zithromax and Kelfex didn't seem to do anything so I asked his Dr to try Augmentin, which seemed to work once before several months ago. I thought we had found our answer! Within 5 days MY BOY WAS BACK - 95% himself and better than he's been in a long time. But I am so devastated, after 15 good days it is all coming back - his obsession with everything evil and bad - always being the villan and talking about killing, talking about hurting kids and saying all kids are stupid and dumb, calling himself stupid, saying he is not himself but that he is the Naughty Guy or someone else bad, saying bad words including the occasional f word, rages, irritibility, crying, tiredness, extreme sensitivity to smells and sounds, loss of appetite. He does not even talk like himself - he talks in a lower meaner tone of voice and his eyebrows are often furrowed. And he also just started stuttering out of the blue today.

He's seen a psychologist 5 times and she thinks he is hallucinating - hearing voices - because of things he talks about (at home, he does wonderful during Play Therapy), but after talking with his Neurologist she believes it is all from the PANDAS. If not PANDAS she thinks possibly Bipolar.
I thought PANDAS should clear up during antibiotics! Since he has been on them he has been:

Started Zithromax:

7 days bad
4 days good

2 days bad

Switched to Keflex:

5 days bad
8 days good
2 days bad
1 day good
3 days bad
7 days good
13 days bad
Switched to Augmentin:

15 days good
2+ days bad

On his excellent days he is 95% back to normal, and on his bad days he is not even the same person. Please anyone, I just want to figure out what is going on so we can start giving my precious little boy the help he needs! I feel like his mind is tormenting him and I am failing him as a mom because I can't figure out why.

Edited by TinyTreasures
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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

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-polar meds. Especially after seeing improvement on abx and probiotics. That points to gut/nutrition/system deficiencies - where mood swings are a symptom, not a cause.

 

My DD8 could have easily gotten a bi-polar label had I gone that route. She is now completely stable by treating her MTHFR mutation (tho she does have a thyroid problem we're trying to figure out) - but no mood swings anymore. You should read this:

http://www.easytolovebut.com/?p=2782

"MTHFR plays a direct role in how well the BH4 cycle works – and the BH4 cycle controls those two neurotransmitters that are so essential to people with behavioral and emotional challenges – serotonin and dopamine....Supplementing with methylfolate has made a huge difference for my daughter (and has also helped my own health). Over a few months, my daughter’s anxiety, mood cycling and sadness evaporated..... (read the whole article)

 

I'd encourage you to re-do the MTHFR lab test and then follow up with a 23andMe spit test (which takes 7 weeks to get the results but is only $99 and requires no doctor involvement). There is a lot more to the picture than just MTHFR and treatment needs to consider the whole picture (for example, my DD also has a CBS mutation that needed to be addressed or else the whole system would've remained stuck in overdrive). But for now, I'd absolutely look at MTHFR. IMO, a 4 yr old should not be given a bi-polar dx and I'd look into nutritional remedies, not psychotropic drugs developed for adults. They have no idea what sort of damage these drugs can do to a developing brain over time. Yet it's a no brainer that proper doses of the proper form of Vitamin B9 (methylfolate if you have MTHFR) will do no harm.

 

Do no let a psychiatrist make you doubt your mother's instincts.

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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 pretty big one - I would get him in to the lab asap for it if you can. Has he been tested for tick borne infection? Is the neurologist a PANDAS specialist? My son was dx at age 2.5 and at no time would I have ever considered a Bipolar dx, although I could see why some of the symptoms might have caused a less experienced eye to try to do so. If you are not seeing one of the 'big gun' PANDAS speciailsts, I suggest you get an appt. and do the traveling if necessary. It sounds like your child's future may depend upon it. He needs further testing for infection and if that stone leaves nothing unturned, then further genetic testing. I suggest that you add an immunologist/PANDAS specialist to the treatment team.

Edited by Beeskneesmommy
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here too. unless there were sever traumas during pregnancy or after he was born, or extensive bipolar in your families, I would change drs.

try food sensitivity. we saw some improvement after going gluten and dairy.

but, in general, we too are seeing the kind of cycling that you describe with both of our kids.

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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-borne infection) is known to cause severe neuropsychiatric symptoms, as can other infections, inc. strep.

 

I agree with the others to follow your instinct.

Edited by philamom
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One of the issues that will affect your child later in life that no one thinks if is that if bipolar is listed on your child's medical record they may never be eligible for life insurance. Most doctors will give a psychiatric NOS code for as long as possible to avoid these problems. Besides hat, she is rather young for the definitive diagnosis. I would go to a PANDAS specialist for sure, but if you are truly questioning the bipolar dx I would go to a child psychiatrist. This is not a dx that a PCP should be wielding around in such a young child just bc he can't come up with something better. I was concerned my son had this as well as there are several traits if PANDAA that can certainly appear to be bipolar. Have you tried filling out a screening for PANS , OCD and also bipolar? I will post links.

http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf

 

http://www.jbrf.org/the-child-bipolar-questionnaire-for-families-use/

 

And the PANS is in a sticky. These are good places to start and compare. My kid did test positive for bipolar when flared but not when in remission. We have never had full remission but you get the picture.

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I apologize in advance if i am getting sny details wring as i was unable to read tge font you posted in. Im going by others responses. One of the issues that will affect your child later in life that no one thinks if is that if bipolar is listed on your child's medical record they may never be eligible for life insurance. Most doctors will give a psychiatric NOS code for as long as possible to avoid these problems. Besides hat, she is rather young for the definitive diagnosis. I would go to a PANDAS specialist for sure, but if you are truly questioning the bipolar dx I would go to a child psychiatrist. This is not a dx that a PCP should be wielding around in such a young child just bc he can't come up with something better. I was concerned my son had this as well as there are several traits if PANDAA that can certainly appear to be bipolar. Have you tried filling out a screening for PANS , OCD and also bipolar? I will post links.

http://www.stlocd.org/handouts/YBOC-Symptom-Checklist.pdf

 

http://www.jbrf.org/the-child-bipolar-questionnaire-for-families-use/

 

And the PANS is in a sticky. These are good places to start and compare. My kid did test positive for bipolar when flared but not when in remission. We have never had full remission but you get the picture.

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Just wondering if the augmentin doseage was on the high end for your child's weight or on the low end. It may be that the doseage was just not high enough to actually kick any infection. Or you may need to try combo antibiotics. If you read saving Sammy you will see that Beth Maloney (Sammy's mother) had to keep increasing the dose until he was stable for a long period of time. Just a thought.

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We also saw an initial improvement in behaviour by treating strep infection with 1 antibiotic. The improvement was noticable within a day of starting the antibiotic and continued the length of time we were treating. The symptoms then came back. After the start of the second administration (even though the strep swab was negative) symptoms again resolved, but started coming back while still on the antibiotic. It wasn't until we used combined abx therapy that we saw a real herxheimer reaction (die-off reaction resulting in an increase in symptoms - an increase above pretreatment levels) and then a more prolonged resolution of symptoms and raging.

 

My feelings are that you are on the right track thinking that your son's reactions are the result of infection (or brain inflammation resulting from infection). This forum is full of examples that this condition does actually exist, even though most mainstream doctors/psychologists refuse to believe, and continue trying to suppress symptoms with psychoactive drugs.

Edited by rowingmom
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Do NOT accept a bipolar diagnosis in a 3 yr old. I have very strong feelings on this based on my experience with my son. There is an infectious trigger underlying and you will need to get to a doctor able to figure it out or more than one doctor. My son was 5 when he had an overnight change. A neuropsychologist that did extensive testing on him told us he was bipolar 2 secondary to aspergers. I almost believed it. If it hadn't been for the sudden onset after a flumist vax, I might have bought it.

 

Today, at age 9, my son does not have behaviors/symptoms of either bipolar or aspergers.

 

His labs looked completely normal when tested by one of the PANDAS experts. On a hunch, my son was placed on biaxin. Low and behold, he started getting better.

 

Fast forward nearly 3 yrs, he's doing well after a lot of ups and downs and various treatments. I would take you son to see a doctor who knows what he's doing and how to treat PANS in a seronegative child. I also urge you to see an LLMD. One piece of my seronegative child is the discovery of tick born infections never tested for previously and now being treated, so he wasn't truly seronegative after all. It's a matter of testing for everything.

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Editing after I reread.

 

 

It sounds like the augmentin is helping. He had a sudden onset with many PANS symptoms. Are you seeing a PANS specialist?

It really sounds like you are on the right track!

 

If it "cleared up" with abx we would not be here :)

It helps and for some it does take care of it- but your son sounds pretty severely affected. It make take time & more intervention.

Edited by PowPow
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No way would I accept a bipolar diagnosis at the age of three. My son had changes in his personality from age three to age four. It took us too many years to figure out that he had Lyme/Mycoplasma/Bartonella from a tick bite. He also started improving on a trial dose of Zithromax. If antibiotics are improving the situation, even if it doesn't last, you are either dealing with an infection or an autoimmune response to a previous infection. Run to an LLMD or one of the docs listed on this board. If you post your state, someone will be able to point you in the right direction.

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THANK YOU all so much for your posts, I am taking them all in and taking notes and reading the links. In my heart I know this must be PANDAS or PANS but sometimes I wonder if that triggered some other sort of mental thing. His change back in October was so severe and sudden. Now today (as each week varies) compared to back then he is actually WAAAY better - not nearly as much OCD, not as many rages or fears, no screaming nightmares, not as many tics, we can go places now without him clinging to me terrified except instead of being scared to death of other kids he is now in "fight mode" where he yells at them, calls them stupid, or at best GLARES and points at every child he sees. A few weeks ago if we went out somewhere he would actually SCREAM "Stop It!" to every single child he saw, just because they looked at him. He simply is just not my boy - the boy I know is in there because he returns to himself over and over again, and then I lose him again. He hasn't been sick that I know of for 70+ days since we started antibiotics, but has still had so many relapses which makes it so confusing to us. At the beginning he would get better and then after an illness take a dramatic turn for the worse. Now it seems random.

 

We are seeing Dr Alarcio - the only PANDAS specialist in AZ but it takes months to get in and then months for our first followup, which is finally coming up at the end of June. You all have convinced me to get the bloodwork done. My precious boy asks me every single week still if we have to go back to the "pokey Dr" so it breaks my heart, but we need to know what is going on. We did use EMLA but the 3rd time it took 1.5 hrs to get in and had worn off and they had to poke him twice, it was terrible.

 

Our Dr ordred a TON of bloodwork but I know she didn't test for Lyme (we live in AZ) and the MTHFR and Mycoplasma tests were messed up in the lab - they marked the wrong codes. I still haven't been able to get a copy of our tests results back - the nurse just told me over the phone that everything looked normal. But from our bills (and they keep on coming) the tests she ordered were:

 

Vitamin B-6

Deoxyribonuclease Antibody

Comprehensive Metabolic Panel

Agglutination Test

CBC with WBC

Cytopath C/V Auto Fluid Review

General Health Panel

Assay of Folic Acid Serum

Assay of Ferritin

Assay of total Thyroxine

Assay of Thyroid

C-Reactive Protein

Immunoassay Infections Agent

Vitamin D 25 Hydroxy

Influenza Virus Antibody

Vitamin B-12

Agglut Antibody Titer

IGG

Antistreptolysin Titer

Assay of IGA/IGD/IGG/IGM

Epstein-Barr Capsid VCA

Homocysteine

CMV Antibody IGM

Assay of IGE

Epstein-Barr Nuclear Antigen

Deoxyribonuclease Antibody

Assay of Iron

 

Since 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.

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