Methyl b12 injections for kids

[hawkward]

This is a new treatment suggested to us for DS2 today. It would be an injection every 3 days, which seems to be the biggest con. Insurance wouldn’t cover it, but it seems decently affordable and I’d be able to do the injections myself.

Does anyone have experience with this?

[stevie]

I don’t have experience with injections for kids, but I have issues with absorbing B12 properly. When I was first diagnosed, I had to have regular injections. I then switched doctors and the new doctor told me that sublingual B12 (methyl, not cyano) absorbs into the bloodstream with similar efficacy as injections. Not sure if sublingual would be an option for kids but just thought I would share. My levels have maintained with the sublingual so it’s working. It was a huge help to not need injections all the time. Good luck!!

[tallb]

Pernicious anemia runs in my family, so I recently did a deep dive since I was convinced I had it...but apparently my mom and grandma both have it and B12 shots are the way to treat it. It's basically unable to process B12 which can cause issues. I tried the under the tongue ones for a few days and got a sore in the roof of my mouth...and then my lab results came back and I don't have a deficiency.

Is it due to a deficiency? Would it be every 3 days for ever or until numbers are brought back up and then less frequently? I don't see any harm in trying.

[hawkward]

tallb he’s not deficient but apparently this can help with some of his symptoms. It would be long term, at least a year. It’s relatively new though so I haven’t heard much about it from the parent perspective.

[mapleme]

I also have pernicious anemia and take sublingual B12. 3 shots a week is a lot, which is probably why they recommend shot over sublingual. B vitamins are water soluble and excesses flush out easily. It's also really cheap, as medicines go, so it seems worth trying if it could help.

tallb, FWIW, my B12 levels were only barely low. Technically still in the "normal" range by US standards (low by EU standards), but I had symptoms (numbness/nerve damage) and b12 is low risk, so my doctor suggested that I try it. It was life changing for me and the symptoms clearly all come back if I stop taking it for any length of time (and go away when I start taking it again). So it might be worth talking to your doctor again if you have symptoms. Or at least checking back on it, as most people have reduced capacity for b12 absorption as they age.

I still regularly marvel at how so many people used to die from PA (and how many people still get misdiagnosed with dementia) and how cheap and easily accessible the medication is now.

[fancynewbeesly]

I don’t have any experience with that injection but DD1 gets weekly infusions treatment that we administer. Honestly it is fine. We numb the spot with lidocaine cream and rotate thighs every week. Our annoyance is that it takes two hours and sometimes it is just annoying to find time for it. DD1 doesn’t like when DD2 is around for it. But if we wait until she goes to bed then DD1 doesn’t fall asleep until almost 11 on a school night by the time it is all said and done.

But the actual infusions are fairly easy.

[tallb]

Feb 6, 2023 19:13:13 GMT -6 mapleme said:

I also have pernicious anemia and take sublingual B12. 3 shots a week is a lot, which is probably why they recommend shot over sublingual. B vitamins are water soluble and excesses flush out easily. It's also really cheap, as medicines go, so it seems worth trying if it could help.

tallb, FWIW, my B12 levels were only barely low. Technically still in the "normal" range by US standards (low by EU standards), but I had symptoms (numbness/nerve damage) and b12 is low risk, so my doctor suggested that I try it. It was life changing for me and the symptoms clearly all come back if I stop taking it for any length of time (and go away when I start taking it again). So it might be worth talking to your doctor again if you have symptoms. Or at least checking back on it, as most people have reduced capacity for b12 absorption as they age.

I still regularly marvel at how so many people used to die from PA (and how many people still get misdiagnosed with dementia) and how cheap and easily accessible the medication is now.

Omg thank you for sharing!! My level at the end of Dec was 522, which seems lower end of things for Europe possibly? My Antiparietal Cell Antibody was 3.4 which they said also ruled PA out, but I started googling bc I've been hanging nerve issues on my right side (hand foot tingles), but that seems to have calmed down, but my primary care doctor recommended I see a neurologist about that but haven't made an appointment yet. Maybe I'll just up my B12 again just in case it was helping.

Sorry to hijack the thread!

[mapleme]

Feb 6, 2023 20:34:42 GMT -6 tallb said:

Feb 6, 2023 19:13:13 GMT -6 mapleme said:

I also have pernicious anemia and take sublingual B12. 3 shots a week is a lot, which is probably why they recommend shot over sublingual. B vitamins are water soluble and excesses flush out easily. It's also really cheap, as medicines go, so it seems worth trying if it could help.

tallb, FWIW, my B12 levels were only barely low. Technically still in the "normal" range by US standards (low by EU standards), but I had symptoms (numbness/nerve damage) and b12 is low risk, so my doctor suggested that I try it. It was life changing for me and the symptoms clearly all come back if I stop taking it for any length of time (and go away when I start taking it again). So it might be worth talking to your doctor again if you have symptoms. Or at least checking back on it, as most people have reduced capacity for b12 absorption as they age.

I still regularly marvel at how so many people used to die from PA (and how many people still get misdiagnosed with dementia) and how cheap and easily accessible the medication is now.

Omg thank you for sharing!! My level at the end of Dec was 522, which seems lower end of things for Europe possibly? My Antiparietal Cell Antibody was 3.4 which they said also ruled PA out, but I started googling bc I've been hanging nerve issues on my right side (hand foot tingles), but that seems to have calmed down, but my primary care doctor recommended I see a neurologist about that but haven't made an appointment yet. Maybe I'll just up my B12 again just in case it was helping.

Sorry to hijack the thread!

Mine was about 300. I don’t remember exactly, but it was between the US low (250?) and the EU low (500?). I didn’t have a Antiparietal Cell Antibody test that I know of. My main symptom was persistent numbness in my right middle finger. But it was also affecting my sleep in part because my arms would fall asleep if I slept in any position except with them above my head. The bottoms of my feet would get tingly when I exercised too. These all go away when I regularly take b12. My doctor said that these all pointed to nerves over blood flow. As pure anecdote, I’ve noticed that I respond a better when I take a variety of different kinds of sublingual b12, but that could be in my head.

Also, random side note, when I first went to the doctor about this her first question was if I had young children (I didn’t then) because parents holding babies in the crook of their arm will sometimes cause the same finger numbness.

Another apology for the thread hijack!

[hawkward]

In case another desperate mom googles this, we jumped both feet into this finally after a very scary mental health crisis.

And I think it’s working. We started three days ago and the self-harm compulsions have almost completely stopped. He’s sleeping again and attending school without melting down.

[abs]

hawkward I’m so glad!

[mapleme]

hawkward, that is great!

Also, side note, I used to have self harm compulsions in my teenage/young adult years and I don't any more. I associated the change with age, no one ever mentioned a connection between B12 and self harm (or mental health in general). You mentioning a connection is kind of blowing my mind, because the timing lines up for me. Thank you!

[hawkward]

Feb 11, 2024 10:34:59 GMT -6 mapleme said:

hawkward, that is great!

Also, side note, I used to have self harm compulsions in my teenage/young adult years and I don't any more. I associated the change with age, no one ever mentioned a connection between B12 and self harm (or mental health in general). You mentioning a connection is kind of blowing my mind, because the timing lines up for me. Thank you!

Sometimes I have pretty big “oh shit!” moments with all of this. My older sister has OCD and I was her “safe” person. A lot of the things we’re going through now with ds2, my sister went through. It makes me sad thinking of the things we could have done for her but didn’t know about then.

[nelzie]

hawkward I'm so glad it's working well for him! That must be such a relief.

I'm glad you posted about this, I'm going to be talking to my doctor about this. I was already going to ask about supplements because I'm taking mounjaro. But this post makes me think I'm B12 deficient. I had it checked in November when I saw the hematologist and they said it came back normal at 196 pg/ml. Which now that I'm looking at it seems low. I have a lot of mental health issues that don't really respond to most meds I've tried as well as brain fog, memory issues and always feeling tired. I recently started a B complex pill but now I wonder if I might need something different.

[notblanche]

Idk how or why I didn’t see this last year. I’m so glad it’s working out for yall hawkward. My youngest took hydroxo b12 injections 3x a week for two years and it was life changing for him. He’s off of them for now but may go back on them at any point.

For anyone concerned about b12 deficiency, I recommend asking for amino acid testing. His actual b12 numbers were always in the normal range, but there were other markers that indicated an issue with metabolizing it.

[AmyG]

Now I'm thinking B12 for nerve pain.
See this is why it's so great to ask about stuff here, you never know what you'll learn

[AmyG]

We don't have pernicious anemia, our anemia is alsonon iron dependent and not really any treatment.
but I know my mom used to get b12 shots and would feel like a million bucks for a while lol

[hawkward]

nelzie we are seeing a lot of “healthy” people with deficiencies from Mounjaro and similar meds. It’s to the point that our CRNAs refuse to do elective surgeries on patients taking those meds because under anesthesia they can be unpredictable (on top of the delayed gastric emptying etc.).

I’m not vilifying them at all, just saying that is insist on tracking labs while on it.

[nelzie]

Feb 11, 2024 18:45:55 GMT -6 hawkward said:

nelzie we are seeing a lot of “healthy” people with deficiencies from Mounjaro and similar meds. It’s to the point that our CRNAs refuse to do elective surgeries on patients taking those meds because under anesthesia they can be unpredictable (on top of the delayed gastric emptying etc.).

I’m not vilifying them at all, just saying that is insist on tracking labs while on it.

Yeah I'm worried about deficiencies so I plan to have my doctor monitor several things. I go back in about a month. The 196 vitamin B12 level is from before I started on mounjaro, I've only been on it about 6 or 7 weeks. On a positive note I'm crossing my fingers that the mounjaro will help with my elevated wbcs since it helps with inflammation.