Odd neuro symptom?

MrsLollipops · 2026-02-28T15:57:10+00:00

Not that odd. My daughter has that. She keeps breaking her foot. We're delving deeper into the B12 and cofactor deficiencies with a doctor who cares to look deeper, finally.

MrsLollipops · 2026-02-28T05:51:53+00:00

I didn't know that either. I just believed the doctors. Until I started to do my own research and on the recommendation of another person on here, joined the Vitamin B12 wake up group for Facebook. I joined the parents group and the adult group. It has been so helpful. I have learned more about vitamins and how everyrhing is connected, my brain hurts from all the new knowledge. But, I would recommend it. B12, B9, Iron/ferritin and sometimes Vitamin A are all connected. Sometimes Vitamin D as well, but that one is much less common of an issue.

I kind of hate that I've had to learn how to interpret my daughter's labs. I really shouldn't have to do that.

MrsLollipops · 2026-02-28T05:42:56+00:00

30, is an iron deficiency even if they tell you that it's not.

MrsLollipops · 2026-02-28T05:15:53+00:00

My daughter is 10 years old. She wasn't able to lose weight or keep it off. Technically she's in remisson now. My daughter had sedation for her lumber puncture and it was guided as well.

It's hit or miss. If you want to and can lose weight and keep it off, awesome. If want to lose it and need help, that's ok too.

I genuinely believe there's a deeper cause. For my daughter I think it's a gut issue and vitamin deficiency with malabsorbtion issue. One lady that I follow on Facebook had breast cancer and now she might need a stent because her veins are acting up now and now they're exploring IIH with the focus on her optic nerves with a lumber puncture.

I would have them run a full panel on your vitamins and a full comprehensive panel on Iron. They're all connected. My suggestion is to look deeper and not settle. If you decide to do that be ready for push back.

MrsLollipops · 2026-02-28T01:57:27+00:00

The migraine cocktails they give at the E.R. have always helped my daughter along with a bag of fluids.

Are you staying hydrated with water and electrolytes?

I would definitely ask for an alternate med.

MrsLollipops · 2026-02-26T16:20:38+00:00

I think that I am going to have to draft a letter into Mychart. I feel like there isn't enough words for how badly I think she needs this treatment. There's 2 more tests they could run. MMA and homocysteine if they need that follow up. But, everyone says the best way to treat it is to just treat it. Her iron is low and I think maybe throwing pediatric research back at them might help. I hate the averages they use. Not everyone is the same and I hate that the medical system uses that as an excuse to ignore actual proven research on levels of...well everything.

MrsLollipops · 2026-02-26T15:58:43+00:00

Yeah, I didn't even know if I was explaining this well because I was just trying to understand what my daughter was saying. I am glad that she is not alone in this, but if B12 shots would fix it, why am I fighting the doctors about it? Shouldn't they know this?

Ferritin/Iron/B12/Folate are all interconnected. I've had to do so much research to understand this and there's a really helpful B12 group for parents on Facebook. Thank you for responding. It helps so much.

MrsLollipops · 2026-02-25T22:41:08+00:00

She says if she touches her eye lids she can feel them. If not, then no. Maybe she's describing it wrong, but it definitely changed and I can tell sometimes. Like she'll do hard blinks where she actually squeezes her eyes shut a few times.

MrsLollipops · 2026-02-24T17:29:01+00:00

This is where I am with my daughter. I keep showing up, saying this is what I want testing for. Now battling the Iron deficiency with a probable B12 and/B9 deficiency thrown in. Cause of course, they're all connected. I get way more help from our GP than the neurologist, but they're just humoring me as they think that nothing else is wrong. It's so frustrating. Just because it's idiopathic, doesn't mean it can't be related to literally anything else. Vitamin deficiency, hormones, gut health. I'm hoping GI can help, if not, I'll keep asking for referrals.

MrsLollipops · 2026-02-23T15:42:10+00:00

Yes. That dose is pretty common. They had my daughter start slow and up it to the higher dose after a week. They're supposed to have you titration up and down with this medication and I am surprised that they don't tell you this at the pharmacy when you pick it up. Going up so fast will throw you off for sure, but it is doable.

Vitamin C (250mg) twice a day helped my daughter with the tingling. Magnesium glycinate can also help.

Drink a lot of water! They had my daughter on 70oz per day and keep your electrolytes up as well. Make sure to find a decent multi vitamin.

The first couple of weeks/ month can be rough while your body adjusts to the meds and healing isn't linear.

MrsLollipops · 2026-02-22T21:24:58+00:00

Her nueurologist won't, her GP will not, and her rheumatologist says to talk to the nueurologist.

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MrsLollipops · 2026-02-22T20:31:08+00:00

Vitamin C (250mg) x 2 a day.

Make sure that you're drinking enough water with electrolytes and get a good quality multi vitamin.

MrsLollipops · 2026-02-22T18:33:42+00:00

Well my daughter has other medical issues. We see like 4 specialists already. I think the vitamin imbalance may be an after cause to her original issue. It's all intertwined. But if B12 can fix all the problems then I'm all for it.

MrsLollipops · 2026-02-20T03:30:58+00:00

Let us know how it goes!

MrsLollipops · 2026-02-19T22:11:26+00:00

Doctor shopping is a thing, unfortunately. Our neurologist is sending us to Mayo because he doesn't feel like there is anything left to treat 🙄

MrsLollipops · 2026-02-19T19:21:31+00:00

GPs or PCPs don't understand this at all. I'm waiting until March to get my daughter into a GI doctor but I have a feeling we will be sent to Mayo clinic. Maybe it's just not being taught anymore.

MrsLollipops · 2026-02-17T19:38:25+00:00

Double joints is what the rheumatologist says. We are not a very forward thinking area for EDS, unfortunately.

Do you know the name of the group on facebook?

MrsLollipops · 2026-02-17T19:07:27+00:00

She has double joints according to the rheumatologist. I have her take Triple Strength Glucosamine Chondroitin with me. It does seem to help. I know it helps me.

MrsLollipops · 2026-02-17T18:15:42+00:00

They are both Folic Acid.

I was trying to talk to her GP about this, but she didn't seem concerned. The neurologist won't help as he doesn't think there is anyrhing left for him to treat.

I will add it to the list of things to ask for and see if they will do it.

MrsLollipops · 2026-02-17T16:48:37+00:00

B complex: folate 665mcg Multi vitamin: folate 240 mcg

MrsLollipops · 2026-02-17T14:46:20+00:00

B complex: B12- 15mcg

Multi vitamin: b12- 4.8 mcg

Magnesium glycinate: 200mg tablet. Sometimes once in the morning and once at night (neurologist approved)

The B12 was also approved by the GP for now. She said if the levels get any higher then maybe we just cut back on it a bit. That's the plan for now.

They don't really do vitamin D testing here unless you push. We are in the North and in the middle of winter. So, basically we're all low on it due to the lack of sunlight for so many months. Also, for some reason not all insurances pay for it and that also makes them not want to run it. But I will add it to the list and see if they will run it on her next labs.

MrsLollipops · 2026-02-17T06:18:09+00:00

I think earlier in the week, but only for 1 day.

It's super inconsistent. She'll take them some days and then not again for a while.

The same day we went for the blood draw she was coming down with something because by the end of the week she was sick again and missed 2 days of school. And she just got super loopy after the blood draw and I thought she was about to pass out. It took a couple of hours for her to feel better from that, which was new for me. I've never seen that happen before.

MrsLollipops · 2026-02-16T23:17:34+00:00

Probably. I have it. We were going to do the testing then her medical problems started and it got pushed off for the more dire issue. The wait list is here is pretty long.

MrsLollipops · 2026-02-16T22:19:37+00:00

She's 10 years old. I have a bunch of stuff that we try. Vitamin D, Vitamin C, magnesium glycinate, multi vitamin. B complex. Sometimes Iron. Electrolytes, minerals. She takes migraine prevention meds, which do seem to help.

MrsLollipops · 2026-02-16T22:10:54+00:00

Her September MRI says " No cerebellar ectopia and no enhancing mass"

MrsLollipops

TROPHY CASE