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PANDAS and B12 Deficiency? - Help Please! (Long)


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Hello everyone. I have some problems going on with my 8 year old daughter. I'm hoping someone can help me, as I desperately need it. This will be a long post, and I apologize. I don't know where else to go! I'm a single mother, just lost my job, and my daughter is on medicaid. I understand that the only advice I can get on here is opinions and not proper medical advice, but I am open to any and all opinions.

I will start with what's going on now, and then move backwards. On January 25th my daughter was diagnosed with strep. Her pediatrician knows my thoughts on modern medicine (only diet and herbs), so she agreed with me that I could try natural remedies to try and kill the strep that way. She has a lot of patients do that. Anyways, on the 27th, my daughter started getting a rash in her groin area. Around this time, she started showing these odd symptoms, like PANDAS. I first noticed PANDAS symptoms last year when she had strep. This time she had severe OCD, dilated pupils, jerky movements while she slept, hyperactivity, speech change (she pronounced certain letters and words different), handwriting change, complete aloofness, staring into space, etc. Her mental state was extremely different. She couldn't do simple homework. She was so into electronics and TV that I could barely talk to her while she was occupied with them.. she would barely acknowledge that I was there. I was extremely worried. I called up her doctor and told her about her rash, and she told me it sounded like scarlet fever and to start the antibiotic, Keflex. So I started her on Keflex for 10 days. The 10th day was on a Friday, and she was so much better with her mental state! It was such a relief. Then a day or two later, she started showing these signs again, but not nearly as bad. Then she had cold symptoms.. sneezing, runny nose, coughing, etc. These symptoms were very different from when she just had strep, so I didn't think it was strep. I took her to the doctor on Wednesday for a strep test because my throat started to hurt and I had pus on my tonsils. Well she tested positive for strep. Her pediatrician prescribed an antibiotic (that I can't remember at the moment), but I researched it a little and saw that it had aspartame in it. So I called back to get her on a different antibiotic. She didn't call back the same day, so I took her to a walk in clinic. They prescribed amoxicillin, so I got it filled and started giving it to her. The next day the pharmacy called to say they had a prescription ready for my daughter. So I went in to get it and found it that it is a lot stronger than amoxicillin, but it causes GI upset. My daughter already complains of a stomach ache every single day, and has been for almost two years. So I decided to give amox a try.. and I started giving her oregano oil. Well this is the 4th day that she has been on it, and I only see a little improvement.. not much improvement with her mental state.. she still seems distant, her pupils are still dilated, she is still hyper, she still has OCD, and the way she says certain words hasn't improved. She is still also into her iPad more than ever. To think of it, she has had OCD for awhile now and it is getting worse. She has bad separation anxiety, and cries and stresses herself out from it.

 

Another thing, I'm worried that she is deficient in B12. For about a year and a half, she has had a pale upper lip, fatigue, intermittent blue color around her mouth, intermittent face paleness, dark circles under her eyes, blood shot eyes, hair loss, low grade temps every night, rashes, forehead pain, swollen body lymph nodes, irregular heart beat, immune system problems, etc. Last year or so I saw thrush in her mouth, which has cleared up since. Within the last couple of months, she has experienced shortness of breath, strawberry tongue, vitiligo, chest pain, "muscle" pain (as she calls it) in different parts of her body, short term memory problems, headaches, hair loss that is getting worse, etc. The everyday chest pain and body aches started two weeks ago. When she was diagnosed with strep in January, the doctor found out her lung capacity was only at 59%. After she did a nebulizer treatment it jumped up to 74%, that's when she was diagnosed with asthma. My daughter never wheezes or coughs. I do not think she has asthma. I had asthma as a teenager and her symptoms are very different. Anyways, my daughter's B12 was tested several times within the last year and a half, and it always showed the levels being high or the the upper range of normal. My daughter (and I) have barely eaten meat or dairy (only salmon and occasional chicken), and don't take supplements, so I don't understand how her B12 can be that high. A nurse practitioner last year said that her B12 being high was good! And that she is getting her B12 from plants! That's not possible!!! We just started eating chicken and eggs more last week because I'm freaked about B12. I had to wait for lab work to come back before I gave my daughter B12, which I started on her today.. 1,000 mcg.

 

For two years, all doctors have told me that she was fine, everything was normal. I know everything is NOT normal, but no one will listen to me. She saw a gastroenterologist last year because of her stomach pain. We found out her IgE was 757 (normal is 0-90). The next step was to scope her, which neither of us feel comfortable with. She saw an allergist/immunologist and that's when we found out that she is allergic to cats, dogs, pollen, grass, and trees. She saw a cardiologist two weeks ago because her pediatrician heard a heart murmur and then the arrhythmia (which I first heard last year-but other doctors ignored me). The cardiologist didn't hear the murmur but said her heart was normal.

 

My daughter and I eat very healthy. 95% of our diet has been organic (except for the few times my mom gave her conventional treats).. 100% organic the last few weeks. She was occasionally eating (organic) sprouted wheat until three weeks ago. I just took her off grains, which helped normalize her stools immensely! I used to eat the SAD when I was younger, and ate healthy when I was pregnant with her, but not as healthy as I should have. She is very smart and in the gifted program at school and we have always been very, very close. She's also normally a very happy and compassionate girl. So it's heartbreaking seeing her drifted off like this. She has never been vaccinated, so this can't be from vaccination damage.

 

I have very similar problems as my daughter. Last week I started experiencing flutters in my chest, and I realized that my heart was skipping beats. Ever since I started sub-lingual methyl B12 (a few days ago), they are almost gone! Except for the rapid heart rate. My memory has been horrible for many many years. I just thought it had to do with my thyroid, as I have Hashimoto's (being treated with NDT). We both have low Vitamin D. We both have a sore strawberry tongue. We both have stomach troubles. We both have high eosinophils all the time. We are both fatigued all the time. We both have headaches. My B12 levels are the exact same as my daughter's. Lately these problems have been getting worse.

 

So my questions...

 

What do you guys think is going on with my daughter (and me) ?

Could we have MTHFR or SIBO?

Do you think my daughter is experiencing permanent damage? How can I tell if so?

Could she have PANDAS AND a B12 deficiency?

Could it by Lyme or Bartonella or Candida?

Adrenal fatigue?

More than one of the above?!

How can anyone diagnose us with a B12 deficiency if our B12 levels are normal and our Homocysteine levels are normal?

If my daughter has a B12 deficiency, when will she start to feel better with supplementing?

Who can we go to (that won't be too expensive) to help us? Obviously my daughter is my number one priority.

 

Her pediatrician refused to test for PANDAS (like doing the strep titer). I ordered some other blood work from a DO doctor online. All of her levels came back fine, including CBC and CMP:

 

Histamine Determination, Blood 63 (Normal is 12-127)

Homocysteine 7.4 (Normal is 0.0-15)

Cerulopasmin 28.4 (Normal is 19-39)

Copper 144 (Normal is 72-166) Could upper end of normal still mean slight copper toxicity?

Zinc 108 (Normal is 56-134) If I give her Zinc to help lower the Copper, won't the Zinc go too high as it's already getting up there?!

 

My blood work is all over the place, except for the Homocysteine, which is also 7.4.

 

I'm very sorry this is so long. I'm hoping someone can help me or point me in the right direction where to go. I'm losing my mind trying to figure out what is wrong with my daughter. Thanks in advance.

 

 

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I'll use BOLD to answer your questions

What do you guys think is going on with my daughter (and me) ?
Could we have MTHFR or SIBO? PEOPLE CAN HAVE BOTH

Do you think my daughter is experiencing permanent damage? How can I tell if so? PERMANENT DAMAGE DOESN'T SEEM LIKELY - ID THINK SHE IS STRUGGLING IF SHE IS MISSING NUTRIENTS
Could she have PANDAS AND a B12 deficiency? YES

Could it by Lyme or Bartonella or Candida? YES
Adrenal fatigue? YES
More than one of the above?! YES
How can anyone diagnose us with a B12 deficiency if our B12 levels are normal and our Homocysteine levels are normal? NORMAL IS A SUBJECTIVE TERM SOMETIMES ESP W OUR KIDS __ AND IF YOUR DRS ARE NOT COOPERATIVE WHERE U LIVE YOU HAVE TO ASK WHY __ FOR EXAMPLE WHERE I LIVE WHEN OUR KIDS WERE DIAGNOSED * YEARS AGO NO DOCTOR IN NY W? WORK W PANDAS BUT OUR DR IN CT WOULD -- ASK A LOCAL PANDAS GROUP (LOCAL TO WHERE U LIVE) THEY CAN DIRECT U TO DOCTORS AS CAN GROUPS LIKE TACA AND NAA

 

Methocolbumun form of B12 is what most people do -- IMO best to do it w a doctor some kids react really well as 2 of mine did but our other has different genetics and she responds terribly to b12 -if you try it on your own try tiny bits/drops and go slowly

 

YOU NEED HELP -- HOPE OTHERS REACH OUT and hope you find a good doctor ASAP

Best to you,

Erin

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This post is screaming Lyme to me. I would definitely have her tested. Where do you live? Maybe somebody can chime in with a recommendation for a LLMD. We have Medicaid too, and although we are treating naturally, at least the testing was covered (Western Blot and all coinfections can be pretty expensive.)

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B12 is a bit of a funny business. When I was having blood tests done recently, my doctor said to me that "I could do our standard B12 test if you like, but it's only about 50% accurate" - though I've no way of knowing whether that's the same type of test that your doctor did.

 

Also, there are conditions where the same amount of B12 doesn't go as far - either it's not used efficiently, or something is going on that uses up extra B12 - so you might have a normal blood level and it still not be enough.

 

The bottom line is, if your B12 is the same as your daughter's and taking sublingual methylB12 improved your health, then the same could happen with her. Looking at Wikipedia, there doesn't seem to be really such a thing as an overdose of B12 (unless you hit one of those weird PANDAS reactions that Emst mentioned, and from what I've heard those go away quickly if you stop taking it), so there's no harm in trying it. I'd say the first thing is probably to try that, as you are doing, and see how far that gets you, before starting on anything else. I hope it does help your daughter feel a bit better. Let us know what the result is, please!

 

 

Oh, by the way, just a suggestion - taking a peppermint oil capsule often works like magic for me when I have a stomach ache or feel sick (doesn't work every time, but often), so you might give that a try and see if it helps with that. I mean, it presumably won't fix whatever's causing it, but it might help her feel a bit better!

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B12 is a bit of a funny business. When I was having blood tests done recently, my doctor said to me that "I could do our standard B12 test if you like, but it's only about 50% accurate" - though I've no way of knowing whether that's the same type of test that your doctor did.

 

Also, there are conditions where the same amount of B12 doesn't go as far - either it's not used efficiently, or something is going on that uses up extra B12 - so you might have a normal blood level and it still not be enough.

 

The bottom line is, if your B12 is the same as your daughter's and taking sublingual methylB12 improved your health, then the same could happen with her. Looking at Wikipedia, there doesn't seem to be really such a thing as an overdose of B12 (unless you hit one of those weird PANDAS reactions that Emst mentioned, and from what I've heard those go away quickly if you stop taking it), so there's no harm in trying it. I'd say the first thing is probably to try that, as you are doing, and see how far that gets you, before starting on anything else. I hope it does help your daughter feel a bit better. Let us know what the result is, please!

 

 

Oh, by the way, just a suggestion about the stomach aches - taking a peppermint oil capsule often works like magic for me when I have a stomach ache or feel sick (doesn't work every time, but often), so you might give that a try and see if it helps with that. I mean, it presumably won't fix whatever's causing it, but it might help her feel a bit better in the meantime!

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