frustrating when Dr.s think they know it all; update on cousin's son

some may remember a few weeks ago when I posted about my cousin's son being in the hospital due to some sudden paralysis.

Well, if you're the praying kind (well-wishes, positive thoughts too!) we'd appreciate them still.

The poor, sweet boy (who turned 7 a week ago today) has been in the ICU now for three weeks.

To sum it up it goes like this:
respiratory problems, local pediatrician thinks pneumonia
then next day, can't move his arm
next day to a Children's Hospital an hour away where within a couple of days he loses movement in his legs and one arm, and a lung collapses.

three weeks intubated
three weeks on feeding tube (swallow muscles are weak)
three weeks of acute flaccid paralysis in some limbs, paralysis in two legs, one arm

Dr.s still, as of today, say they are "confused", "don't know what's causing this", are perplexed how this is acting "abnormally", "not typical" (for ex. paralysis not symmetrical, not starting in legs and moving up from there, etc.)
also confusing them; "random" paralysis…meaning: he can move his feet, but not legs, he can move his hips, he can move part of one arm, but not all, can move hands, can move head.

They are saying they think it's a virus (in part based on blood work done I think), and don't know if he'll recover movement.

It's all very sad, but I don't feel it's hopeless.

His last MRI showed some regeneration around the nerves, which is a good thing.

They've tested for a myriad of things, all negative, including lyme. But lyme was with ELISA, so no surprise.

Now to my point of my subject line: I understand full well that it may not be lyme or a co-infection; I understand that they could be absolutely right about it being viral (yet, not acting like anything they've seen or read of…hmm.)

But, even they (the two neurologists) thought it was necessary to rule out lyme.
ANd I hate that they accept ELISA as the test to do that.

I just think if it's going to be ruled out, it should be ruled out by a better lab like Igenex. But they won't do that of course.

I've mentioned that to my cousin, twice, but I don't want to be annoying, so I've said what I can and I know it's not my child. To be honest though, I think I will mention it again to her sister.

Anyway, no real question here, I suppose just venting about the bad testing and Dr.s who accept it.
and, venting that my cousin, after three weeks of things not working, is saying they like their dr.s and aren't really digging deeper as far as I know. I actually shouldn't say that, b/c that's kind of an assumption on my part and not fair. She's going through hell right now, and my heart breaks for her.

Anyway, thanks for listening and any ideas or thoughts of something this situation reminds of you are welcome!

Post Edited (stacestar) : 9/17/2014 1:24:40 PM (GMT-6)

thanks Traveler! yeah, I imagine he is scared, and that breaks my heart.

I think I will at some point, sooner than later, send some articles to her sister. I think to her sister, b/c this sister had her father-in-law in the hospital for quite awhile last year, and I've heard her say things like "you have to be an advocate for the loved one in the hospital" and "ask for the things you need and want". I think my cousin whose son it is, is overwhelmed, and not the type to research and research, but kind of trusting that the Dr. knows what she's doing. Again, maybe this dr. is right, but the situation deserves "outside the box" thinking for sure.

I'm glad your grandson didn't ever show any symptoms of infection! How anxious, to watch and see, especially when you know what can happen in the world of lyme. Thank goodness that worked out, and they're lucky to have you there to help!

If you wouldn't mind letting me know about any articles or stories you know of or find about anything like this, that would be great! I've been looking a little myself too.
Again, maybe it's not lyme or a co-infection, or maybe it is one or many. Maybe that gene mutation thing is involved in him and that's why it's hitting him so hard? I don't know. IT all makes me wish I was a lyme literate neurologist.
Just thinking that if lyme is one of many things it possibly could be, that it should be tested with the better lab, just in case. It's hard though I understand to for my cousin, when he's in the hospital, under the care of a dr. who is saying that's not necessary "it's not lyme." Probably a hurdle to get him tested properly as a "just in case" in that situation.

Thanks again Traveler!

Wow, I read his story the first time you posted. How scary for that poor boy. There is that weird mystery virus going around and effecting kids. Have you seen it on the news? Maybe he has that. I know it really effects breathing. He could have underlying lyme issues too. I always think when people get really sick and docs are stumped, it could be more than just one thing. But they only look for one disease process. Have they tried any antibiotics?

thanks guys!

Traveler, yes send anything my way! I thought about mycoplasma pneumonia too, b/c of the respiratory illness involved at first. I don't know if they've checked for that or not. Are those tests reliable, or not so much, like lyme?
For awhile, the dr.s were saying it was Guillain Barre-like; and, I read more than one place that mycoplasma pneumonia and chlamydia pneumonia can lead to/cause Guillain Barre. There were a couple of cases I read about where people experience paralysis, etc. So, yeah, could be a possibility.

Louise74, thank you too for your ideas. I'm thinking that they did test for enter virus 68 (the one going around now) b/c this happened about the same time that started happening, and we're in the midwest where there have been some cases. My cousin didn't mention specifically that test, but that they were testing many things, and I would think they included that one, since it's out there now.
If they did, I think it must have come back negative, b/c my cousin and her family are saying, as of yesterday even, that the Dr.s still "don't know" the particular cause, but do think it's viral.

I'm prone to think too, Louise, that it may be a combination of infections, or something like that, b/c of his drastic reaction, and the fact they can't figure it out.
Again, it may very well not be lyme or a lyme co-infection, but we're in an endemic area and lyme and co. can lead to this sometimes so I've read, and lately when I hear things like, "not typical", "unusual", "not following predictable patterns", etc, I think of things like lyme. yet I know it's a big world of virus' and bacteria out there, and anything else is possible too.

I'm not sure about the antibiotics. I would think (and my sister who is a nurse agreed) that especially at first they would have given IV abx, just in case. I get the feeling though that they aren't now. I could be wrong.
They did give him steroids for two days right at the start of this. It was supposed to be a five day steroid treatment, but on day two of them he got worse, so they stopped that.

rowingmom, thank you. Just as I'm celebrating my little guy being basically recovered, doing so well…this. It's very hard.
If I think about it too much, I start to fall a part. Her son…so precious, as all children are. She hasn't given up hope though, and I won't either.
.
What I don't like is that my aunt is saying they "like" the dr., and that he has "good dr.s" (it's a team of a couple of neurologists, with one lead). Here's what I think: you can like her all you want personally (although I don't think I would), but I'd be searching out every other option available- everything.
Their neurologist is apparently one of the top ten in the country. Well, I'd be like, "that's great. who are the other nine, b/c I'm going to give them a call." I'd be thinking how I could get another opinion, looking into Igenex, etc

My sister, (nurse) said "Dr.s can be very convincing." You know, very "in charge". And, that's not good always. To be in the top ten has a drawback too, that maybe you think you know it all.
anyway, I'm praying he heals! I'm praying my cousin and her husband seek out a another opinion; a Dr. who can look at this outside the box (preferably lyme literate, just in case) and that all of this does not have too many hurdles, b/c I'm sure my cousin is exhausted emotionally.

thanks again everyone.

Post Edited (stacestar) : 9/17/2014 9:07:59 PM (GMT-6)

thank you Roxie. That's a good idea about the CD57 test to better rule out lyme. I can see how, unfortunately, the Igenex would be a hurdle to jump to get his dr. there to use it, and then like you said, to interpret correctly too, but the CD57 test, maybe she would be open to that if my cousin asked for it. I mean, they have a right to ask for certain tests. I'm going to tell that to her sister.

Tick paralysis comes to mind when reading about this...

Doctors tend to blame everything they can't explain on a "virus." Or they blame the patient and claim that it is "all in the [patient's] head." Instead of acknowledging that they don't know and being willing to look outside the box. Grrr... (sorry, I have a BIG beef with doctors who do this)

This is a dumb question but has anyone checked his head for an embedded tick. I know they usually fall off quickly. Now that razzle mentions it, I read this story about a kid with paralysis and doctors were stumped. The tick was like permanently burrowed into this kids head and didn't get better until it was removed.

thanks all for the new replies!

Roxie, good idea about getting/asking for all records. I'll mention that at some point, thanks!

Razzle, I had read about tick paralysis when this first started for him, about the first few days, and passed that info along to my cousin. She did read it and mentioned it to the dr., they looked him over and didn't find one. When her sister asked the dr. what about if there's one like deep in an ear, or body cavity, the dr. said the MRI would pick up something like that. I hope he's right. But they've looked in ears too I'm sure and all over (since my cousin read the info herself, I imagine she looked at his every inch carefully, and his hair is very short so that helps.), so I don't think that's it, but thank you for passing along the idea!

there is good news! I wish I could say he's recovered, but it's still good news, and that is that my cousin contacted me this morning, saying that she does want to test with Igenex to have peace of mind!
I had given her quite a bit of info about it before, and shared things I knew and my son's story, and now she want's to use Igenex.
I sent back a long message about how it works, and that if her dr. wasn't on board to sign it (although I tried not to stress her out by saying I'm sure the dr. would sign off on it, hopefully I am right!) but that if not, my son's llmd would definitely I was sure. The good news! my son's llmd is in the same town they are in at the Children's hospital! They're in Peoria, IL; and we all live about an hour and a half from there, but that's where they are and that's where my son's llmd is, so I said if their dr. didn't want to order it and have the hospital draw and send it to call my son's lllmd. I said I could talk to her in fact for them. She's just great, a member of ILADS and very accessible, answering any email I've ever sent personally within a day or two.
So I'm not quite sure how that would work, but as parents, they have the right to have son's blood tested at a lab of their choice.
I don't know what to hope for. That their current dr. will just order it, so it's less of a hurdle, and then take steps from there, like if she didn't interpret right, I could talk to my cousin and let her know that hundreds of brilliant lyme specialist dr.s from all over the world would say this or that.

or, don't know if to hope for my son's llmd just being the one order it.

either way, I think it's a step in the right direction. Again, not saying that is absolutely lyme, but to know it's on the list of possibilities for causes, and to never have it tested from the better lab, well that's not in his best interest of course.

and they don't know. and they're confused by this, and it's not acting "typical". and we live in an endemic area. and steroids made things worse. and on and on. it's good for him to get tested!
please pray, or send positive thoughts that the testing does happen, and fast, and effortlessly for my cousin! thank you!

Thank you all for the thoughts, well wishes, and ideas. I'll still take more!

hi Roxie,

yeah, If I remember right, I found her through word of mouth at first (last winter), not on any lists officially. But, in the meantime now she is on the ILADS lists. I know b/c, I emailed ILADS again recently (last week), thinking of my cousin's son, to see if just by chance, there were any ILADS llmd neurologists in IL. no luck with that, but my son's llmd came back in the ILADS email as one of three ILADS member llmds in IL.

I already like her, but it was great to see now she's officially a member of ILADS too. If you're interested you can email me and I'll let you know who she is.
When we started with her last March, I think she said she's been treating for two years, or two and a half years at that time, I can't remember which.

She's a real nice Dr. and person, and I find that she follow ILADS protocols and advice. She's a DO, who practices Functional Medicine, which I don't really know to much about, but I think they try to think holistically. She uses antibiotics (again ILADS protocol of two months past last symptom, etc. from what I find) but also is open to using herbals, which is what we've switched to.

Post Edited (stacestar) : 9/19/2014 7:38:02 AM (GMT-6)

thanks Traveler!
I've been away from the computer all day, and will look at my email now.
Since my cousin is wanting to IGenex now, I think I'll hold off on the CD57 anyway.
thanks again!