Dr Hive....any experience with Optic Neuritis or other optic nerve/brain inflammation issues?

[Tap]

DD14 can't catch a break when it comes to health related issues. 

She has chronic stomach issues so when she started having nighttime nausea in late fall, I just treated it with out normal go-to meds. Over about a month, it wasn't improving so I messaged her GI. She said she wanted her evaluated for Pseudotumor Cerebri. Due to holidays and such, she finally made it to the eye doctor yesterday. On top of the nausea, she woke up with a bloody spot on her eye, blurriness and pain on Dec 31. I took her to the urgent care on Jan 1 where they did a simple eye chart eye exam and checked for scratches with dye.  DX with subconjunctival hemorrhage but the doctor said something seemed a bit off to him....so to make sure to go to eye doctor the following week. The eye doctor evaluated her for the pseudotumor and said he didn't see any signs of it. But due to the pain and now having decreased vision (showed up in this visit) he wanted her to return for a visual field test and another test the following week. He thought she was fine, but wanted a bit more info.  I asked them to see if they could get it done the same day and he said he would work her in. The visual field test was definitely off. He sent her to the ER based on it. 😞

The ER is connected to Casey Eye Institute so they have top notch eye doctors on staff. They came into see her and did an eye ultrasound. They didn't tell me the results of it, but then came back and said they wanted an MRI (with IV contrast) of her head. She can't have IVs without full anesthesia, so they decided to hold off and just let her be seen at Casey Eye for more testing before they do the MRI. 

So, here we sit. Waiting till next week, so they can do more testing and try to figure out where to go from here. 

Yuck. What a way to start the year!  I have spent they day trying to understand how to read the visual field test so that it makes any kind of sense to me. Trying to brush up on the parts of the eye and optic nerve, so I understand what they tell us next week. This kid just can not get a break!

Any information you have or advice with eye issues is appreciated. It is an area that I have minimal experience. 

[prairiewindmomma]

Yup, x3 kids. 
 

My BTDT advice is to push like heck for the full anesthesia comprehensive MRI within the next two weeks, preferably next week depending on what the initial exams showed. They keep emergency slots open for a reason. You need to rule out brain tumor. 😞 

Feel free to pm me. 
 

 

[Tap]

15 minutes ago, prairiewindmomma said:

Yup, x3 kids. 
 

My BTDT advice is to push like heck for the full anesthesia comprehensive MRI within the next two weeks, preferably next week depending on what the initial exams showed. They keep emergency slots open for a reason. You need to rule out brain tumor. 😞 

Feel free to pm me. 
 

 

I agree about the MRI, but she is morbidly obese,  so they are very, very reluctant to do anesthesia. I am going to talk to them about what they would be able to see without contrast next week. She has a few other warning signs, but they did feel she was stable for at least a few days until they can get some more tests completed. I don't even know, what I need to ask at this point. 

ETA: The hospital was going to get her MRI done that same night, but the IV contrast is the problem for her. She has Extreme Needle Phobia!!!!! Due to PTSD from needle sticks when she was little. She won't let them even try to put a needle in her and we have tried every.thing.they.can.think.of to get her to let them do a simple blood draw. She metabolizes meds fast so meds that would knock other people out, just make her delirious but still awake.

Edited January 10, 2021 by Tap

[prairiewindmomma]

A few thoughts:

1. Optic neuritis, which is one of the tags on your headline tends to be either a viral trigger thing (which lasts 3-12 weeks) or is tied to demyelination related to multiple sclerosis. If you were thinking optic neuritis, I would expect to hear more complaining about sensitivity to brightness, color loss, etc. 

2. Brain tumor headaches are weird things.  Everyone medical always says that they should be tied to the increase of blood pressure in the morning (so headache upon rising), but in my experience of talking to a LOT of families, this isn't true. Nausea and headaches can be so many things that this one doesn't freak me out.

3. I assume they've already done a OCT? And didn't see anything obvious which is why they are wanting to do MRI immediately?

4. The maintaining airway due to morbid obesity is manageable--CPAP, supraglottic device, etc.  Dd became morbidly obese due to dexamethasone use, so I get the concern. The needle phobia is hard.  I'd be tempted to line up whatever other testing needs to be done at the same time and go from there so that you can knock stuff out while she's down.  

5. This is going to cause raised eyebrows if you mention it to the neuroradiologist, but have you considered a CT or MRI without contrast?  Yes, I know you'll miss stuff. But if there is a mass and that mass is big enough to be displacing stuff to cause issues it should show up.  Could they consider using it as a screening tool with a promise to make better imaging if something is discovered? In the grand total of all of the things that is your daughter, what is the team willing to ethically live with? I really don't mean that in a crass way.  I am looking at the complete situation with a BTDT with medical trauma in kids lens. If you go that route, make sure they use the 3T imaging machine.  I know their OHSU imaging facility in Beaverton has one.  I think there are a few others in the metro.

 

[Tap]

19 minutes ago, prairiewindmomma said:

A few thoughts:

1. Optic neuritis, which is one of the tags on your headline tends to be either a viral trigger thing (which lasts 3-12 weeks) or is tied to demyelination related to multiple sclerosis. If you were thinking optic neuritis, I would expect to hear more complaining about sensitivity to brightness, color loss, etc. I am reading the same information you posted here. This is one of the dx the OHSU eye doctor mentioned they are considering. They discussed possible treatments in a super quick summary if this is indeed the dx (abx, steroids' etc). One thing I wonder, is if this could be COVID related? We haven't had it, as far as we know, but we all hear about asymptomatic cases and the inflammation syndroms kids COVID kids are coming up with. (She has had incidental exposures; she has been in public and I work in healthcare). 

2. Brain tumor headaches are weird things.  Everyone medical always says that they should be tied to the increase of blood pressure in the morning (so headache upon rising), but in my experience of talking to a LOT of families, this isn't true. Nausea and headaches can be so many things that this one doesn't freak me out. She takes Lyrica daily and LDN for chronic stomach pain.  We are wondering if this may mask some headache symptoms. The nausea thing is weird, it is almost always at night. It can be bad enough that she throws up. She takes Zofran nightly to take the edge off, but it doesn't make it go away. When she wakes up, she is no longer nauseous. 

3. I assume they've already done a OCT? And didn't see anything obvious which is why they are wanting to do MRI immediately? I wasn't impressed with the first eye doctor we saw (prior to going to OHSU). He absolutely was not very thorough. I just took the first doctor who could see her. She has private insurance and Medicaid, so there are limited eye doctors who will see her (low reimbursement on Medicaid). From now on, I will just not tell them she has Medicaid and just use her private insurance. He did the OCT but the note on her after visit summary says "VF and macular OCT completed today in clinic and reviewed with parent/guardian".  There is no documentation of what the test said and I don't remember. I don't know the acronyms for eye issues, so it is possible the results blurred into the VF test when he was talking. 

4. The maintaining airway due to morbid obesity is manageable--CPAP, supraglottic device, etc.  Dd became morbidly obese due to dexamethasone use, so I get the concern. The needle phobia is hard.  I'd be tempted to line up whatever other testing needs to be done at the same time and go from there so that you can knock stuff out while she's down.  Yep! We definitely will do this. I am hoping to get some standard blood work and one test they said they may want is a lumbar puncture. I will ask if they can do that as well. There is no way they will get her to do that awake! Them talking about the LP makes me wonder what all they are thinking at this point 😔Maybe it is standard? IDK But it is a scary procedure for a layman. She has a few specialists, so I will message them as well to see if they want to tack on any blood work. 

5. This is going to cause raised eyebrows if you mention it to the neuroradiologist, but have you considered a CT or MRI without contrast?  Yes, I know you'll miss stuff. But if there is a mass and that mass is big enough to be displacing stuff to cause issues it should show up.  Could they consider using it as a screening tool with a promise to make better imaging if something is discovered? In the grand total of all of the things that is your daughter, what is the team willing to ethically live with? I really don't mean that in a crass way.  I am looking at the complete situation with a BTDT with medical trauma in kids lens. If you go that route, make sure they use the 3T imaging machine.  I know their OHSU imaging facility in Beaverton has one.  I think there are a few others in the metro. I agree about trying it without contrast first. She has had both CT and MRI and she is fine with both. It is just the IV so if we can get the pass on that, she is willing to cooperate. I hope that maybe one without contrast can at least send them in a direction. If she does have a tumor, I assume they would want more testing later, so if we can minimize the sedations, it would be best. I have had to fight them on this topic before with her stomach issues. Funny you mention the 3T machine. I was looking today on line to see what tests they use and different equipment. I have very good insurance, and there are several hospitals in this area. I like to take full benefit of the options we have to choose from. I agree about looking at the complete situation and making one big game plan (I don't take your comment as off-putting). I may need to get her to Mayo or one of the bigger hospital systems that use more of a team approach. I have asked her doctors for years to keep looking for why she has some of the health issues she does. Like weighing 325, being 5'11 at 14yo (her bio-parents are 5'6" and under 6"). She eats more than most people, but not that much more. If she does have a tumor, I wonder if it could be the cause.

 

Thanks for helping me think through all of this! I really, really appreciate it!!!

[PeterPan]

47 minutes ago, Tap said:

We are wondering if this may mask some headache symptoms. The nausea thing is weird, it is almost always at night.

If she's hyporesponsive for sensory, she may be having migraines and not realize it. I had that happen to me. 

[PeterPan]

47 minutes ago, Tap said:

There is no way they will get her to do that awake!

Can they bring you in a social worker and social stories? 

Honestly, not to sound too off the wall, but what about hypnosis? 

[Tap]

4 hours ago, PeterPan said:

Can they bring you in a social worker and social stories? 

Honestly, not to sound too off the wall, but what about hypnosis? 

Not off the wall at all. My SIL does Hypnobabies. I talked to her about hypnosis for dd's issue. She gave me the name of someone to contact but I didn't follow through. One issue she brought up, is that we would have to work on healing the old trauma before we could get her brain to work with hypnosis. DD14 refuses to do any kind of therapy work that is uncomfortable. DD can make any small thing into a huge deal so even if we get her to agree to try....she can flip and just refuse to try it anyways. 

[Tap]

4 hours ago, PeterPan said:

If she's hyporesponsive for sensory, she may be having migraines and not realize it. I had that happen to me. 

I mentioned to her recently that she might be having migraines. She has had some headaches, but they didn't seem to invasive. I know migraines can be subtle so it is possible she is having pain and it isn't registering. 

[Ottakee]

Just an off thought.....have they ever run a full mitochondrial myopathy panel on her?  My girls are currently asymptomatic, but have LHON, Levers hereditary optic neuropathy.....and 2 other mitochondrial issues, TK2 and POLG1

[Tap]

4 hours ago, Ottakee said:

Just an off thought.....have they ever run a full mitochondrial myopathy panel on her?  My girls are currently asymptomatic, but have LHON, Levers hereditary optic neuropathy.....and 2 other mitochondrial issues, TK2 and POLG1

I took her to a mito geneticist, he doesn't think she has a mito issue.

[Ottakee]

4 minutes ago, Tap said:

I took her to a mito geneticist, he doesn't think she has a mito issue.

At least you ruled that out.   Mine have 3 different mito myopathies.

[PeterPan]

On 1/10/2021 at 5:51 AM, Tap said:

I mentioned to her recently that she might be having migraines. She has had some headaches, but they didn't seem to invasive. I know migraines can be subtle so it is possible she is having pain and it isn't registering. 

If she has had trauma, she may have some dissociation and interoception issues, yes. So no she would not be registering. I've worked on mine a ton, even so I'll just get nauseous, boom, and it takes me a while to figure out why. 

So hypnosis is uncomfortable? Why would you have to deal with the trauma first? I guess if the practitioner told you that, that's something. Trauma creates blocked areas, so maybe they can't get there with the hypnosis? 

I've talked about this (ad nauseum) but the bodywork of trauma therapy and then working on interoception was pretty life altering. Ironically, if someone is hyperresponsive (you said she doesn't like anything that is uncomfortable), then it needs different techniques from what I did. You'd be looking for a trauma counselor who does bodywork and has that level of experience. I know of *one* person like that in a very major city, so it's not a common thing. Alternately, cranial sacral is kind of amazing for releasing stuff. 

I think you could try the hypnosis and just see. Otherwise medicate. I hope they get it figured out. 

Would gas work for this? My ds accepts gas/nitro well. I assume they could do the one to lead to the next.

Edited January 11, 2021 by PeterPan

[Tap]

5 minutes ago, PeterPan said:

If she has had trauma, she may have some dissociation and interoception issues, yes. So no she would not be registering. I've worked on mine a ton, even so I'll just get nauseous, boom, and it takes me a while to figure out why. 

So hypnosis is uncomfortable? Why would you have to deal with the trauma first? I guess if the practitioner told you that, that's something. Trauma creates blocked areas, so maybe they can't get there with the hypnosis? 

I've talked about this (ad nauseum) but the bodywork of trauma therapy and then working on interoception was pretty life altering. Ironically, if someone is hyperresponsive (you said she doesn't like anything that is uncomfortable), then it needs different techniques from what I did. You'd be looking for a trauma counselor who does bodywork and has that level of experience. I know of *one* person like that in a very major city, so it's not a common thing. Alternately, cranial sacral is kind of amazing for releasing stuff. 

I think you could try the hypnosis and just see. Otherwise medicate. I hope they get it figured out. 

Would gas work for this? My ds accepts gas/nitro well. I assume they could do the one to lead to the next.

 Yep, gas is what they use. The level of gas needed to put her under, requires an anesthesiologist. The amount a dentist or ER person can do isn't enough for her.  

[PeterPan]

24 minutes ago, Tap said:

 Yep, gas is what they use. The level of gas needed to put her under, requires an anesthesiologist. The amount a dentist or ER person can do isn't enough for her.  

That's really interesting. Does it give her side effects afterward? One time when they were doing gas on ds for dental work I thought I'd be smart and give him (hydroxyzine, I forget) as well. That was a MESS, total mess. I have no clue why. The gas does something with the methylation pathways. You said it's how she metabolizes. It might be linked in with the challenging behaviors. 

Anyways, I hope they get it figured out.

[prairiewindmomma]

I wanted to take a couple of days to let your reply post float around in my head and see if I had any additional thoughts.

Youngest has been having stomach pain and vomiting at night, and again before waking (so before sitting up and having that increase in cranial pressure that would would expect if CSF fluid was partially blocked by BT). In her case, she is actually (working theory) dealing with pretty severe silent reflux.  We put her on fomotidine and have been able to knock that down.  We think we she having migraines as well, but primarily abdominal ones.  What you describe with stomach pain and severe nausea doesn't seem likely tied to eye issues.

Visual field---that's the egg cup like looking machine where they flash tiny lights and try to see how big the visual field is...if there is a pattern of blank spots to indicate a problem

OCT--optical coherence tomography--this is the little "photo" that is done of the back of the eye by sending waves of light through the eye.  It allows you to visualize part of the optic nerve, take cross-sections of the retina, etc.  This test is done if they suspect glaucoma, retina issues, macular degernation, etc. Honestly, I love looking at my OCT images every time I go in. They are actually pretty cool. 

If it "just" takes gas to go down, get the contrast images.  If they are also mentioning a possible lumbar puncture, then I think you need the contrast.    It's a bit worrisome to me that they are mentioning that upfront.  Who is coordinating the test ordering at this point? It's not a typical ask unless they are really leaning towards BT and looking for leptomeningeal spread or they think something like MS. 

 

[Tap]

20 minutes ago, prairiewindmomma said:

I wanted to take a couple of days to let your reply post float around in my head and see if I had any additional thoughts.

Youngest has been having stomach pain and vomiting at night, and again before waking (so before sitting up and having that increase in cranial pressure that would would expect if CSF fluid was partially blocked by BT). In her case, she is actually (working theory) dealing with pretty severe silent reflux.  We put her on fomotidine and have been able to knock that down.  We think we she having migraines as well, but primarily abdominal ones.  What you describe with stomach pain and severe nausea doesn't seem likely tied to eye issues. One of the things I tried at first was TUMS then a PPI. It didn't help the nausea. I figured it was GI related so I kept trying GI meds. After a month, I messaged her GI and after all we had tried and failed, her GI doesn't think it is GI related unless it is a GI infection. She gave me the choice of trying Metronidazole or following the eye route. Since we have a hard time keeping her GI symptoms in check, we are reluctant to have her take the metronidazole (messes up the stomach flora). That is why we went to the eye dr first. If he hadn't found something on the tests, we would have tried the metronidazole. One reason that reflux is unlikely, is that on her endoscopy a year ago, there was zero evidence of reflux. Obviously it could be new, but he GI doesn't think so since she only has the nausea before bed. The eye doctor definitely found something, so it points us away from GI causes. It could be coincidence....but we are going to follow this route for now. 

Visual field---that's the egg cup like looking machine where they flash tiny lights and try to see how big the visual field is...if there is a pattern of blank spots to indicate a problem. This test definitely shows a problem. 

OCT--optical coherence tomography--this is the little "photo" that is done of the back of the eye by sending waves of light through the eye.  It allows you to visualize part of the optic nerve, take cross-sections of the retina, etc.  This test is done if they suspect glaucoma, retina issues, macular degernation, etc. Honestly, I love looking at my OCT images every time I go in. They are actually pretty cool. I don't know what they found on this test, just that they did it. 

If it "just" takes gas to go down, get the contrast images.  If they are also mentioning a possible lumbar puncture, then I think you need the contrast.    It's a bit worrisome to me that they are mentioning that upfront.  Who is coordinating the test ordering at this point? It's not a typical ask unless they are really leaning towards BT and looking for leptomeningeal spread or they think something like MS. The problem we have, is finding an anesthesiologist willing to do it. They are very, very reluctant for past scans that were needed, but not completely necessary. (ie Sedation to get IV contrast for CT to look for kidney stones).  The past anesthesiologists have said that she requires a high level of gas to get her down, so that may be part of the reluctance. I think in this case, they will be willing to, but there are definite risk factors. The eye specialist at OHSU referred her to (Elks children's at)Casey Eye Institute. We are going there today and I assume they will be taking over the case if it is optic nerve related but I am not sure. I will find out more today. I don't know if they will have her PCP take over if it is not eye related, but I hope not. He is a good basic PCP, but not one to delve deep into issues. He will put in any referral I ask for though, so we work ok together. It is nice being in an area with so many specialists, but I think that leads more PCPs to refer everything out.  I know there is always a disconnect between things diagnosed in the ER vs PCP putting in referrals. So hopefully if Casey Eye thinks there is something brain related they will just refer her to a specialist and skip the PCP altogether. 

The Lumbar puncture was mentioned several times, so I think they are suspecting something significant. I am trying to not worry to much, but I know from having another daughter with major health issues that the tone of voice the doctors were using, was concerning. That being said....they were willing to wait until today to get more tests before going through with the MRI, so they aren't being fatalistic....just keeping thier head in the game, which I appreciate. 

 

Thank you so much for your BTDT advice. It is hard to step into this new world, without understanding some of the tests and reasons behind them. It is nice to have someone to chat with about it who understands. 

[Mrs Tiggywinkle]

On 1/10/2021 at 5:49 AM, Tap said:

Not off the wall at all. My SIL does Hypnobabies. I talked to her about hypnosis for dd's issue. She gave me the name of someone to contact but I didn't follow through. One issue she brought up, is that we would have to work on healing the old trauma before we could get her brain to work with hypnosis. DD14 refuses to do any kind of therapy work that is uncomfortable. DD can make any small thing into a huge deal so even if we get her to agree to try....she can flip and just refuse to try it anyways. 

It’s off the wall, but if you have someone local who does Accelerated Resolution therapy, it’s not uncomfortable and seems to work wonders.

I’ll probably delete this so don’t quote, but I had treatment resistant PTSD forever.  EMDR, talk therapy and all the usual modalities did nothing.  Someone put me in touch with a distant cousin who does ART and literally—two sessions and I saw improvement.  I don’t fully understand it, but it seems to work for a lot of people. 

[prairiewindmomma]

Do you want to hear things from a completely different angle?

How compliant do you think she was/could be with the visual field test? I'd be really interested to know what pattern they picked up that seems to indicate a problem.  Did she complain about the test at all? I actually really, really freaking hate the visual field machine.  They want you to look out of one eye only, and the lights inside of the egg are really faint.  I have been having visual fields for about a decade now, and I actually get a bit anxious when it comes to that machine.  One time I think I had a panic attack inside as everything in my eye got really dark.  Another time, I swear I was seeing phantom lights.  Like, the test makes me really anxious and while I might have some small sensory things---I'm solidly in the range of neurotypical. If she is well into quirky (and I recall that she is), things may have just gone glitchy in her testing.  It's one of the few things that would explain the difference between eye structures being normal and her functional performance in the test being off. Here's the deal...if it was optic neuritis, it should have been picked up on the OCT.  If there were retina issues causing eye pain, OCT should have picked it up.  

The fact that they were leaning heavily in conversation on lumbar puncture makes me think they think they want to do a solid rule-out of MS. It's typically not in the first round of tests with BT. 

FWIW, there is a connection between needing a visual field exam and pituitary disorders....wanted to throw that out there since you mentioned weight issues. Sounds like that's already on your radar. 🙂

Good luck today! 

[Amy in NH]

My grandmother died in 1989 at age 80 due to complications from a surgery to remove a slow growing tumor around her pituitary gland.  The tumor had been there for ~40+ years, and was originally found due to the onset of diabetes insipidus she developed as a result of pressure on her pituitary.  Over time, the tumor grew to put pressure on her optic nerve, and she was slowly going blind.  My grandfather died in 1965, and she lived alone for all of those years; she was living in her own apartment in an elderly housing complex when she decided to have surgery to remove the tumor due to her loss of vision.  The steroids she had been taking for many, many years to keep the tumor from growing thinned her skin, which led to the complication in ICU causing her death. 

Best wishes for testing and diagnosis!

[Amy in NH]

I didn't mean for my story to make you sad or upset, but to show you that even if the diagnosis turns out to be a tumor, it could be managed for a long time and your daughter could still lead a long life with manageable health consequences.

[melmichigan]

It sounds like they are definitely ruling out MS.  MS can cause an increase in headaches.  It can also cause problems with optic neuritis, and that is  often an early diagnostic symptom. I'm missing large areas of my visual field.   I get atypical migraines that result is severe nausea, but I don't get pain.  An MRI with contrast and Lumbar puncture are diagnostic.

Edited January 13, 2021 by melmichigan