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*Update below*

I had the results and recommendations meeting with the developmental opthalmologist today for ds7. My head is still spinning a bit to process everything but here is what I can parrot from the paperwork.

suspicious for papillitis of the optic nerve (waiting for another appt to investigate further)

positive for retained Moro reflex

Primary diagnosis: Esotropia Intermittent Alternating

Secondary diagnosis: Convergence Excess, Suppression, Binocular Dysfunction, Accommodative Dysfunction, Oculomotor Dysfunction in Pursuits and Saccades

Recommendations: 24 weekly sessions of vision therapy, pursuit of occupational therapy

 

So what I've gathered from the paper work and talking to the dr is that the poor kid can't see beyond the end of his nose up close but at a distance he can see alright but it takes more effort than it should to see clearly.

They didn't really say anything about the retained Moro reflex other than he has it and I had a hunch that he might based on things I've observed about him. Is that something that will come in time with the vision therapy or do we need to look into different therapy for that?

Edited by sweet2ndchance
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Get Moro under control first. You can use PT or OT or DIY with something like Pyramid of Potential, but if you don't make some traction on Moro, it's going to be a slog. I think it's also likely to make VT take longer. If the PT/OT dissembles about reflexes or Moro work, you might need a different person, assuming you've explained what is going on. It doesn't mean that if they bring up additional concerns or say that you need to work on sensory too, that they are incorrect--just make sure that they aren't just listening to you talk and then want to do their own thing without addressing the reflexes at all. 🙂 

The primary idea of VT is that it changes the brain's processing through bodywork. Retained reflexes impede this brain development. Our VT office never would really claim they were working on reflexes as a replacement for OT or PT, but it was clear that they built it into VT, so it was a good option for us. 

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  • 2 weeks later...

So ds started therapy last week. Part of his therapy and homework is working on Moro reflex so they are working with him on that as part of therapy.

What can we expect to see as the Moro reflex is integrated? I've read a lot on retained Moro but I'm curious about what others have actually seen in their kids when integrating the Moro reflex. For example, some of the signs of retained Moro reflex that I have observed in ds are poor impulse control, difficulty focusing/distractibility, easily triggered anger and anxiety. Will working on his retained Moro reflex really cause improvement in these areas? If so, about how long did therapy take to start seeing results? He is suppose to receive 6 months of therapy but is scheduled for a re-eval with the vision therapist in December so I'm guessing  they hope to see measurable change by then?

Just wondering "aloud" more than anything. Please feel free to point me in the direction of more information if I just missed the place that might answer my questions.

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Oh and another separate question.

The developmental ophthalmologist said she would like to see him in OT for his handwriting. Ummm, kid can't read fluently because he sees double when he tries. Though he hasn't specifically said it, I imagine handwriting is also fighting to not see double when he is doing it. And now that I think about it, his biggest issue, imo, is wonky spacing of letters and words. It would make perfect sense that you would have trouble keeping spacing consistent if you are seeing double.

I've always been of the opinion that you work on letter formation until they can read "fluently-ish" and then you start building up handwriting skills beyond letter formation. His reading has never become fluent thus far but he can perfectly (for a 7yo) form all his letters. Does he always do his best neatest work? Of course not, he's 7yo and he has trouble seeing at close range. When I talked to the OT, before the DO made her recommendation for OT, he also seemed to be of the opinion that ds can write fine, he just can't see well enough to do an excellent job so OT might be a waste of time considering that handwriting was the only thing that qualified him for OT. He actually said that he believed VT would be a better use of our time and if we want we can eval again after VT.

Honestly, I think ds's handwriting is excellent for his age, WHEN he doesn't feel rushed or anxious about it. My other boys did not have near the fine motor skills that youngest ds has and their handwriting eventually improved around 3rd - 4th grade (except dysgraphic ds but youngest ds does not show any of the signs that dysgraphic ds did at the same age).

So what do you think? Do we pursue OT right now at the DO's recommendation (she actually said she would like to see him in OT while doing VT) or do we just do VT and possibly re-eval for OT next year at the OT's recommendation? I'm leaning toward the OT's recommendation for several reasons but this is my first rodeo with eye problems and VT so some more experienced voices would be greatly appreciated. :-)

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3 hours ago, sweet2ndchance said:

OT for his handwriting.

Who is doing the reflex work? Is she wanting to send you to a *different* OT? Like two? Or she gave you the reflex exercises?

Yes, if he has not had an OT eval, you want one. Yes, his behavior may improve in ways you don't anticipate as you get the reflexes integrated. If he has Moro, honestly you better be checking ALL of them. Yes, there are reflexes that affect handwriting. So I think it's ok to stagger a bit if you're really going like gangbusters with the reflex work. If you can only do so much at once, do the reflex work well, then start with the OT.

As far as reflex integration improving behavior, they'll liking it to a 4 alarm fire siren going off. You lower that stress from the sensory issues, reflexes not integrated, etc. etc. and the body just feels so much better that it's easier to live in his body. Doesn't solve chemically driven mental health issues. Doesn't solve everything. Just will help whatever portion of his symptoms were from the irritation of the un integrated reflexes.

Fwiw, in my ds the difference in a month, once we really really got him able to tolerate the reflex work, was ASTONISHING. He went from being feral, on my back, jumping on me, almost impossible to work with, to just standing there waiting, compliant. The PT actually started calling in others to see because it was SO unbelievable.

So yeah, you never know. My ds still needs anxiety meds and is challenging (and has ASD2) but it was a noticeable difference, something easily treatable.

The OT for handwriting will usually start by reviewing gross motor then go to fine motor. If they're worth their salt, they'll weave in behavioral and communication goals. And if you're REALLY lucky, they'll know about interoception (which odds are they won't, so ask for it, request they get trained on it) and do sensory. Many OTs now do Zones, but you really want Interoception, not just Zones. 

So if the optham. is telling you she's seeing issues that need a referral, it's stuff you're not addressing. I'm not saying OT is a perfect profession, but you will learn some things. And if you work with enough of them, you'll maybe eventually hit a bunch of areas that will benefit your ds, lol. I wish it was like oooo one person, but it's not. Actually, Kelly Mahler is working on setting up an autism certification for OTs through the university where she's a prof. I'm SO excited about this. It so kills me that these people are being told to get PhDs (which is what new OTs are told now) and still have ZERO CLUE how to work with our kids and have to learn so much later.

So be informed, ask questions, ask upfront what things they're trained in. You *can* do some of what he needs at home, yes. But it's going to go better if you do that *after* you get some professional help to target exactly his mix. Otherwise, you're just going to frustrate him. 

And no, the whole wait, fluency, whatever thing probably isn't your biggest issue. He probably has precursor/foundational issues that need to be worked on. THAT is why the optham is referring him. The fruit of "writing" comes after you build the foundation.

How many reflexes did they identify as needing work? How many are you working on? We worked on 3-4 at a time and it took us a solid 45 days per batch before they were integrated well enough to add more. And we were working on them, doing the exercises maybe 3-4 times a day at 10-15 minutes a pop. If you're only working on one reflex, well that's something to look into.

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3 hours ago, sweet2ndchance said:

He actually said that he believed VT would be a better use of our time and if we want we can eval again after VT.

Yes, I think there can be some staggering. Kids' brains really need to FOCUS. That reflex integration work is HARD STUFF!! And it's a big deal. My two cents would be to focus on it. There's a time for everything. After the VT seems like a really smart time to be doing actual handwriting. The OT will almost assuredly work on gross motor, self regulation, etc. before working on handwriting. In fact, shhh, but some OTs SUCK for handwriting. I had one who was a dragon, a witch, and had no clue. She had a phd in OT btw. Worst ever. Now we had another who specialized in handwriting, and she did gross motor and then coding. THAT was brilliant and very low stress. No issue with that, but again I agree with the other that you might as well get the eyes working better first. I wouldn't do near vision work in OT before the VT is done, just me. 

So use your judgment. Maybe start by looking for an OT you find interesting. They're all different. I've used probably at least 10, I don't know. They're literally all different, because most of this stuff is learned AFTER they get their degree. For real. That's what needs to change, but it won't be soon enough for our kids, lol. 

Edited by PeterPan
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Therapro has some great, free webinars on OT issues. 

https://www.therapro.com/Webinar-08-25-2020-Every-Brain-is-Different-How-to-Help-Children-with-Dysgra.html I watched this one live and it might be worth your time. She goes into the specific types. It's not a replacement for an OT eval, but it gives you a sense for what you can do at home and what they bring to the table. The OT eval will cover way more than what's in this video and it's about learning what you don't know yet or what he doesn't know yet about himself. But there's stuff *you* can do and this is a good one. 

https://www.therapro.com/Information-Items/Webinars/  They ahve more.

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28 minutes ago, PeterPan said:

Who is doing the reflex work? Is she wanting to send you to a *different* OT? Like two? Or she gave you the reflex exercises?

The DO's vision therapy team is doing the Moro reflex work. The DO noted in her report of of ds's evals with her office that he had retained Moro but no other mention of reflexes tested or retained or anything else. She also didn't mention it in our meeting to go over the report. I didn't see the retained Moro comment until I got home. But in that same meeting she also said she would suggest we get an OT eval and when I told her we already had gotten an eval and he only just barely qualified for handwriting only she said she would like to see him do both VT and OT at the same time. Which I thought was strange and said so but she said she sees clients make faster/better (can't remember the exact word she used) progress when vision and fine motor are worked on simultaneously.

OT eval was completely separate from and done about a month before the VT evals. Different therapy place and everything. They eval'd him for PT, OT and ST. He only qualified for OT for handwriting and just barely. When I talked to the OT and mentioned the eye problems we had just discovered and that we were going to start VT soon, he said, in his opinion, ds probably has more of an eye problem than a handwriting problem since he just barely qualified but he would be happy to re-eval ds after we have done VT for a while. The OT, PT and ST at this therapy place made no mention of retained reflexes or even testing for them. Honestly, they aren't good with communication at all either which makes me leary of them. I have enough ST and OT experience between all my kids to know that communication with therapists is crucial to success so we will probably be looking at other places when and if we decide to pursue OT and especially ST (I still think he needs, they don't.)

Of course it is up to me and dh ultimately what we decide to do in what order, I was just wondering if that was common or if it sounded as odd as it did to me.

I'll be back with more later, ds is on the loose... sigh.

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4 minutes ago, sweet2ndchance said:

So I tested for retained reflexes using this as a guide.

I definitely saw the positive reaction for Asymmetric Tonic Neck Reflex.

I think I saw the positive reaction for Symmetric Tonic Neck Reflex.

So does that fall under OT or do I need to work with him myself or mention it to the DO or VT team... 

Yes, that's what I would have expected. Also, see if you can test for Babkin. It's in the hands. Here's a whole list https://www.brmtusa.com/what-are-reflexes  

So I tried a bunch of OTs unsuccessfully and finally ended up with a PT who was using the methods from Pyramid of Potential. PoP sells their video for $35 and it probably has everything we did with the PT. I can vouch for that and say it worked for us. Price is great, hassle low, and it would allow you to work on reflexes now, work on vision, then pursue OT for what is left. No one can do everything at once. If you have coverage for OT, sure see what you can find. Ask them specifically what system they use to integrate reflexes. I've heard OTs saying HOGWASH and making vague claims of "well I just do my regular stuff with them and eventually the reflexes integrate." One actually said that in a webinar! So yeah, I hope that works for her clients, but that doesn't jive to me or fit my experience.

You get the ATNR and STNR integrated and it will probably blow your mind the improvement. 

My ds had one in his back (I forget the name) so we were brushing and stroking anyway. I tried brushing his hands and cheeks and realized it was irritating. So I kept doing it, and then you could see the reflex it was stimulating integrate as the exercise was more tolerate. 

Some kids have a bump in language when their reflexes integrate. You've got good stuff coming. If you decide to go with the PoP stuff, then after you get the reflexes done, get your OT eval. Or you can try to find an OT who is good at reflexes. But seriously, there's a lot of hogwash and vooodoo and you'll pay $100 an hour around here for the privilege. Plus your drive time, etc. OT has its place, but there's so much to be done. It's ok to triage, do what you can. Either way works.

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And no, I wouldn't expect the VT team to do it. If they were, they already would have. They screened the ONE that was most essential. You're getting the rest, which is what a knowledgeable OT would have done. But tiff on the OT schools that they're graduating people who can't do this, kwim? Most basic stuff and OTs don't typically do it.

Edited by PeterPan
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I tested for Plantar reflex, which is also known as Babinski Reflex, but it's in the feet. Is that the one you mean? I also tested for Palmer reflex, also known as infantile grasp reflex, which is in the hands. Plantar/Babinski was definitely negative. Palmer was most likely negative but I plan to test him again on that one when he's not getting tired of playing "Mommy says". lol I'm not sure if he was wrist flapping because he couldn't help it or if he was just exaggerating the motions because he was tired of playing.

Edited by sweet2ndchance
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1 hour ago, sweet2ndchance said:

So I tested for retained reflexes using this as a guide.

I definitely saw the positive reaction for Asymmetric Tonic Neck Reflex.

I think I saw the positive reaction for Symmetric Tonic Neck Reflex.

So does that fall under OT or do I need to work with him myself or mention it to the DO or VT team... 

My VT place had exercises that I think were a follow-on to Moro, but they were very ATNR/STNR-like. I could probably copy them and message you if you are interested (they don't have a copyright notice on them, and the practice doesn't offer VT right now at all). They were really helpful for my son. They added them a little after adding the duck and pigeon walking and got that going well. In addition to those and the ATNR/STNR stuff I could send, they did bear walking and something else like it. 

We did VT homework for about 15 minutes per day 5-7 days per week. Much more, and I don't think my son would've tolerated it well.

1 hour ago, PeterPan said:

And no, I wouldn't expect the VT team to do it. If they were, they already would have. They screened the ONE that was most essential. You're getting the rest, which is what a knowledgeable OT would have done. 

It's sort of a dance because the VT people don't want to step on toes or claim to do something they aren't really qualified to do. They might work on multiple reflexes over time but not really advertise it. Since your group is pushing OT simultaneously, I am guessing they don't do the others. Our VT place always said to get VT going well and then get an OT or PT eval. They found that it was hard enough to get people to comply with one set of therapies! 

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2 minutes ago, kbutton said:

My VT place had exercises that I think were a follow-on to Moro, but they were very ATNR/STNR-like. I could probably copy them and message you if you are interested (they don't have a copyright notice on them, and the practice doesn't offer VT right now at all). They were really helpful for my son. They added them a little after adding the duck and pigeon walking and got that going well. In addition to those and the ATNR/STNR stuff I could send, they did bear walking and something else like it. 

We did VT homework for about 15 minutes per day 5-7 days per week. Much more, and I don't think my son would've tolerated it well.

It's sort of a dance because the VT people don't want to step on toes or claim to do something they aren't really qualified to do. They might work on multiple reflexes over time but not really advertise it. Since your group is pushing OT simultaneously, I am guessing they don't do the others. Our VT place always said to get VT going well and then get an OT or PT eval. They found that it was hard enough to get people to comply with one set of therapies! 

I would love the information if you are willing to send it!

They have him doing duck walk/pigeon walk right now as his VT homework. They want a minimum of 3 times a week but I'm doing like you said, 15 minutes or so 5 - 7 times a week. I just do a loop schedule of all the VT homework activities they assign.

After this coming week's session, they are going to send home a computer program to work with at home too.

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1 hour ago, sweet2ndchance said:

I tested for Plantar reflex, which is also known as Babinski Reflex, but it's in the feet. Is that the one you mean? I also tested for Palmer reflex, also known as infantile grasp reflex, which is in the hands. Plantar/Babinski was definitely negative. Palmer was most likely negative but I plan to test him again on that one when he's not getting tired of playing "Mommy says". lol I'm not sure if he was wrist flapping because he couldn't help it or if he was just exaggerating the motions because he was tired of playing.

My ds was reactive for both feet and hands. No wonder he was feral, lol. I mean, his behavior was REALLY AWFUL.

Also check their cheeks. You should be able to stroke/brush his cheeks with different textures. I forget which does which, but between hands and cheeks, you're hitting some of the common complaints people will have about kids being hard to brush for teeth, chewing things, etc. Super simple to integrate once you identify them. 

There's a whole book on one reflex, I think the SNTR. The title was something like Stop ADHD, and their thesis was that just that ONE REFLEX was connected to a LOT of behaviors. 

So this is good stuff for you! I'm glad for you to be getting answers. 

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14 minutes ago, kbutton said:

They found that it was hard enough to get people to comply with one set of therapies! 

Bingo. 

15 minutes ago, kbutton said:

Since your group is pushing OT simultaneously, I am guessing they don't do the others.

Very probable. That optham is seeing SOMETHING. Happily op can work on them herself with Kbutton's exercises, the PoP videos, whatever. It will be very obvious when she gets them integrated.

10 minutes ago, sweet2ndchance said:

They want a minimum of 3 times a week

So we've had people on the boards say all kinds of things. Someone here (who got good results btw) doesn't recall doing *any* homework, just the once a week with a PT. Go figure. But I will tell you that our PT said to do the exercises for *45* days STRAIGHT, WITHOUT FAIL. That worked for us so that's what I vouch for. It's incredibly obvious when they begin to integrate, because the exercises get easier. And what happened for us was the shift occurred maybe 2-3 weeks in but we stuck the course, very faithfully. We had a while, after the 45, a window of maybe another month, where it seemed like if we missed to much he would regress. It would be obvious. So we had sort of *maintenance* levels of the exercises just to keep them really integrated. 

We no longer do them, so there is an end, lol! However my dd finds her reflexes re-emerge when she's stressed, etc. I think that if you can make a push and hit 45 days straight, you're going to make progress. But I think do what you can do. And just think in terms of this is a big push, gonna do it every day, and all this is over by Christmas. That's your end game. Actually, you'll be completely done with reflex work by Thanksgiving if you start now and really beat the stick on it. That would be something to party about!

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20 minutes ago, kbutton said:

We did VT homework for about 15 minutes per day 5-7 days per week. Much more, and I don't think my son would've tolerated it well.

Yes, I think having 1-2 days off a week from the VT work is FINE. Only the reflex work I would say every day if you can. Just weave it into your routines. What I did, and this was just to help ds tolerate it, was I put on some really high value, cool videos. So we'd watch those videos only during his reflex work. Made him a little more congenial and kept his mind off how unpleasant it was. 

If your dc finds the exercises uncomfortable, he can also do something comforting like wear a compression shirt or roll like a burrito in a blanket for deep pressure. My ds didn't need that but was fine with just the distraction to get through it.

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47 minutes ago, PeterPan said:

My ds was reactive for both feet and hands. No wonder he was feral, lol. I mean, his behavior was REALLY AWFUL.

I've been paraphrasing all these posts for dh and when I told dh you described your ds as "feral" before working on reflexes, he laughed and said "sadly, I laugh because I can relate. Ds could be described as feral some days too". lol

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16 minutes ago, sweet2ndchance said:

So I retested for spinal galant and palmar this morning. He is mildly positive for spinal galant and negative for palmar.

So my plan is to have him do reflex exercises everyday for the next month and a half or so and just do the VT homework (other than the Moro walk exercises) on the loop schedule everyday.

That sounds perfect. And yes, spinal galant was a BIG DEAL for my ds. It affects their ability to sit comfortably, causes wetting, all sorts of stuff. Who knows what will improve as you get that integrated.

Fwiw, the PT had us use a variety of textures for our brushing/stroking. For spinal galant, you're working on their back. That was really, really rough for my ds, hence the videos! And we'd use things like a rough washcloth, an ice cube (yes, you read that right), a coarse boar bristle brush, a pen tip, fingernails, a comb, etc. Variety. 

There's a theory that the spinal galant reflex helps them twist in the birth canal. My ds had a vag birth and was large, so it seems improbable he wouldn't have activated it and yet he didn't. All I can figure is that it was because we he finally came through there it was FAST!

Well good. It really sounds like you're pulling it together into a plan. The hard work will likely pay off, and it costs you very little. The order is something like primitive/neonatal reflexes (what you're working on), then POSTURAL, then VISION. So think about that. The VT place is trying to get you to go forward with VT, but a lot of the vision work will go better as these reflexes get integrated. If doing both is too much, I wouldn't feel at all bad about pausing 45-60 days to get through the reflex work first. If the VT exercises are frustrating or difficult, again you could pause 45-60 days and see where you're at. There are some VT docs who do things together. I'm just saying it's your call. 

And then, I'll tell you a story. My dd had funky issues, finally did VT at 11-ish, and it was AWFUL. Painful, horrible, the whole nine yards. I kept asking people about reflexes (OT, VT doc) and kept getting the blow off. We got through it, but her vision issues don't really hold. She has worn progressives on and off and it's just bizarre. We finally had her tested for retained primitive reflexes by that PT, and sure enough she had some serious ones. However even working on them is hard. She'll get them integrated and then they just re-emerge. Her sensory is very challenging and her hyperreactiveness makes it hard for her to endure the reflex work.

Then look at my ds. Hypo responsive, so he's a pill. TONS of OT work. TONS of work on reflexes. ZERO developmental vision problems. Now he does have VMI (visual motor integration) issues, but the VT wouldn't even work on it and said it was an OT thing. 

So who knows? But my two cents is you can't go wrong working on the foundational stuff that makes the rest go better. Your kid is going to need what they need, but it will go *better* as you work on the foundational things first. If what someone is suggesting is *not* going well, then that's a big clue to pause, back up, and figure out what they missed and what is more foundational. 

Hindsight. :biggrin:

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6 hours ago, PeterPan said:

There's a theory that the spinal galant reflex helps them twist in the birth canal. My ds had a vag birth and was large, so it seems improbable he wouldn't have activated it and yet he didn't. All I can figure is that it was because we he finally came through there it was FAST!

And then, I'll tell you a story. My dd had funky issues, finally did VT at 11-ish, and it was AWFUL. Painful, horrible, the whole nine yards. I kept asking people about reflexes (OT, VT doc) and kept getting the blow off. We got through it, but her vision issues don't really hold. She has worn progressives on and off and it's just bizarre. We finally had her tested for retained primitive reflexes by that PT, and sure enough she had some serious ones. However even working on them is hard. She'll get them integrated and then they just re-emerge. Her sensory is very challenging and her hyperreactiveness makes it hard for her to endure the reflex work.

I have some sensory issues but not extreme. Both my kids had sensory issues; one had serious retained reflexes and one had some vestiges but no outright signs. I was a fast birth, and my kids were both fast labors and very short pushing stages (two contractions for one and one contraction for the other). I do think there is something to that theory about reflexes and labor.

PeterPan, is your daughter hypermobile? That's a typical reason for reflexes to not fully integrate with therapy. My younger kiddo's will always be just a wee bit off due to his connective tissue disorder, but work on them was still worth it. 

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24 minutes ago, kbutton said:

PeterPan, is your

To some degree, yes. A ped tried to refer us to a neurologist but at the time I had a lot on my plate and didn't have money for the $$$$$$ testing they would have done that likely wouldn't have changed much. I don't think it's all the way to EDS, but we've talked about it. 

It's the story of her life, haha. Lots of testing, almost everything subclinical.

 

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