Close to being diagnosed Bipolar

[EAMom]

Did your son ever have his throat cultured (prior to starting antibiotics for example)? Low strep titers don't rule out strep (current or past) as a trigger. Many PANDAS kids don't get elevated titers, even with positive cultures! Cultures aren't always positive however (if the swab isn't good enough, if the strep is in the sinuses instead of the throat, etc).

 

I would also rec. throat culturing family members to make sure there isn't an asymptomatic strep carrier in the household.

 

BTW, stuttering is a PANDAS symptom:

https://www.aacp.com/Abstract.asp?AID=9159

http://www.latitudes.org/forums/index.php?showtopic=19972

[peglem]

Yes, 23andme detects MTHFR mutations.

[SurfMom]

I might also add that I strongly recommend a consult with a child neurologist to look at the physiology of what is going on in your child's brain....it could be a host of conditions related to brain inflammation caused by an infection or cross-reactive antibodies including autoimmune encephalitis which could be indicative of a host of illnesses like Lupus, rheumatic fever, cancer and so on.

 

A neurologist would look for inflammation, lesions or seizures that could be causing the symptoms through EEGs (particularly a 24 hour one) MRIs, PET scans, CAT scans, lumbar punctures etc., beyond just the markers found in blood tests.

 

It is a HUGE and alarming leap to give a child a bipolar diagnosis without having all physical causes ruled out. Be wary of a professional inclined to do so.

 

All good things your way!

[EAMom]

We've actually found a rheumatologists (or immunologists) to be more helpful. we did see a neurologist early on, but she didn't know much about PANDAS. She did order an MRI for us (which was normal). She agreed we had PANDAS, and couldn't argue that long term abs made sense (given the severity of dd's case, anorexia, and a sibling who is an asymptomatic strep carrier). Some neurologists are HUGE pandas naysayers.

 

However, some of the top PANDAS docs in the country are neurologists (Dr. T, Dr. Latimer), so it depends on the doctor.

[SurfMom]

EA, yes great point...we have a superb rheumatologist on our team who works closely with her neurologist. They are hand in glove in dd's treatment.

[peglem]

Tiny Treasures is seeing a pediatric neurologist who treats PANDAS and is very careful about checking for other conditions that may be causing symptoms.

[TinyTreasures]

Hello! I just wanted to say THANK YOU to everyone who replied to my post. I have so much more hope now than I did back when I posted the original message. Augmentin has been huge in helping our son, although it isn't the full answer - we are still on the journey to find out exactly what is causing this and exactly what we need to do. But thanks to you guys I did end up getting him tested for MTHFR (did the 23andme saliva test). He is compound heterozygous for both MTHFR gene mutations. This could be huge for him! We finally got to see Dr A just yesterday and will be starting methylfolate and methlcobalamin tomorrow. His vitamin B12 level was 1439 when the normal range is 243-894 (just building up in his system but not being used). His vitamin D is 15 when the normal range is 30-100 (will the vitamins she prescribed help this as well? I can't remember what she said about that).

 

Going to test for mycoplasma, coxsackie, West Nile, HHV6, and Lyme in September while he is under anesthesia having a lipoma removed, and currently waiting on our Cunningham Panel results (did that while he was under anesthesia having a cavity filled).

 

But thank you so much, and to anyone facing a bipolar diagnosis keep searching and trying things and don't give up!

[TinyTreasures]

oh and also, yes, he has had 3 or 4 strep throat cultures - all negative, and 2 strep titers blood draws - both negative. Strep may or may not have been the original cause, but his trigger now is anything - a cold, flu, etc. His stuttering lasted about 4 weeks and as quickly as it started, it disappeared. Seems he moves on from one thing to the next. Right now it is a "hitting compulsion" - to hit himself, us, his brother, objects, and his tics 2 weeks ago were so horrible my husband wanted to take him to the ER. Head banging, screaming, grunting, sniffing, stomping, jumping, hitting himself and hitting other things, hitting his foot against the floor. Not gone but much better now.

[LNN]

I'm so glad you're finding answers! If you haven't run genetic genie on your 23andMe results yet, here are instructions on how to get the most from the data and what can help with various mutations: http://www.latitudes.org/forums/index.php?showtopic=3928&page=2 The heartfixer document listed in this link is particularly helpful. My kids had more than just MTHFR issues and addressing those other mutations took us another step forward.

 

You mention how your son nose dives whenever he gets sick. One thing to remember is that when the body is sick, it needs extra supplies of things like Vitamin D and glutathione. Both Vitamin D and the methylfolate/methylB12 combo are involved in synthesizung neurotransmitters. The methylfolate/methylB12, along with P-5-P (the active form of B6) are involved in synthesizing glutathione. So if the body is already having trouble making enough of what it needs and then it has an infection to fight, the system may go haywire. Resources that were barely enough to make a certain level of neurotransmitters might be diverted away from that task and sent to help the body fight infection. So there isn't enough left to do the neurotransmitter production and you'd see a nosedive in moods and behaviors.

 

My son struggles with detox and develops tics when he can't get rid of toxins fast enough. If your son has had a block in the methylation cycle, he may be low in glutathione and his tics may be also related to a problem with detox. Over time, you may find that treating his methylation issues help with the tics. When you start the methylfolate and methylB12, start LOW and up the dosage slowly. When I went too fast and too high, I got bipolar behaviors back in spades. i had to stop and re-start and my daughter finally found her sweet spot at a very low dose.

 

My daughter had high Cunningham labs and abx did help her initially (she may have had lyme, we're not sure). But she was very deficient in certain vitamins/minerals and didn't have enough resources to balance neurotransmitters and fight a cold or bacterial infection at the same time. So she'd get "bipolar" when she got sick. So regardless of what the labs show when you get them done, the link above may help strenghten the underlying system and make moods smoother on an every day basis. Good luck with things!

[PIK]

I read the beginning of this thread, and I just want to add my two cents. I don't have as much experience as others, but my own personal experience. I believe I had PANDAS starting at age 14 with overnight sudden onset OCD. I also believe I had rheumatic fever at 16. At 28 I was very ill with a fever and one doctor prescribed one month's worth of penicillin 500 mg t.i.d. At one point at three weeks of treatment, I just started peeing and peeing one night, and my fever dissipated. The next morning I woke up and I was nuts. Just crazy. First they diagnosed me with bipolar, then schizophrenia. NOTHING worked except for Anafranil which was started three years later. This to me is proof that OCD was the problem. You said in one of your posts that the psychologist said your child was hallucinating. So was I. I think OCD and strep infections can do that. I had every type of hallucination, visual, auditory, sensory and most of all olfactory, but I was AWARE that they were hallucinations. I think infections can just really mess the brain up. I would think that bipolar disorder would be EXTREMELY rare in like a 3 y.o. I would keep looking for answers.

[TinyTreasures]

LLM - thank you SO much for such a helpful explanation! That really makes sense as to why things get so bad when he is sick. His Neurologist did not give us any advice for the Vitamin D...should we start him on Vitamin D supplements since that level is so low? I just posted his genetic genie results hoping I'll get some advice on how to treat his other issues so the methylfolate and methylB12 can work efficiently. http://www.latitudes.org/forums/index.php?showtopic=21249

 

Also, she prescribed one 500 mg methylcobalamin lozenge per day, and one 7.5 mg methylfolate capsule every other day. Are these too high to start off with?

 

 

PIK - thank you for your post! It is hard to know exactly what a 3 year old is hearing/seeing/smelling so I appreciate hearing from someone who is old enough to explain. For the first couple months while he was hallucinating he would get furious when I would ask questions about who he was talking to or why he was yelling "Stop It!" or why he would say things like "They won't let me do this". He was constantly flapping at his ears, plugging his ears, always mad. Then suddenly things changed - got better in many ways, and he started talking freely about his "Head guy" and telling me the things the head guy was saying to him.

 

Must be such a terrifying experience for anyone, let alone a 3 year old. I hope you are better today!

And now that we know more, we are certain he is not bipolar and not going down that road whatsoever.

[LNN]

IMHO, 7.5 mg of methlfolate is way, way too high for a child. Most adults need only about 800mcg - with is 1/10 of the dose she's suggesting. I replied in detail to your other thread.

[rowingmom]

LLM is right. Our LLMD rxed methylfolate (1000 mcg), methylB12 (2000 mcg) and P-5-P (30 mg) daily. We do use the methylB12 (along with liposomal glutathione) daily, but the other methyl B's only Mon, Wed, Fri. While you are drawing blood for testing, please consider the lyme co-infections (bartonella, mycoplasma, babesia, ehrlichia) as well. Our daughter's PANS/PANDAS symptoms were caused by bartonella. According to Stephen Buhner, bartonella psych symptoms can often be diagnosed as bi-polar or schizophrenia.

Edited August 19, 2013 by rowingmom

[TinyTreasures]

Thank you both! We will be testing for mycoplasma and hopefully bartonella also in early September. I appreciate your posts and also the one in my other thread....sorry for the delay, I've just been waiting till I had a few hours to process everything to respond. Thank you!!!