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What is the Last Resort?


T_Anna
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DS 14 is stuck in the bathroom crying hysterically. He's stuck trying to avoid the OCD. He has been there for 8 hours. The last hour he has been crying like crazy. He was in total avoidance of EVERYTHING the past month (hardly going to the bathroom, no showering, teeth brushing). The past week he has been in a much better mood, we believe due to steroids (we went from a burst to a taper). And today he thought of showering after the bathroom and then this crying started.

 

We signed off on doing IVIG 2.5 weeks ago and we still don't have the papers signed and ready to go.

 

What do you do with a child stuck in the bathroom or the house? Thank goodness our other two kids haven't woken up and our neighbors (we live in an apartment) haven't called the police, but this not a way to live.

 

Would there be any reason to go to a hospital? I know you hear crazy stories like in Boston, but at least we could run more bloods, etc.

 

Sorry, feeling like we lost out way.

 

T.Anna

DS 14

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I am so sorry you are going through this. Is your son still on Luvox? I recall you posting that before. Perhaps consider discontinuing as it doesn't seem to be helping. If your son poses an immediate threat to himself or anyone, suicidal or threatening others, emergency care is required. If not then I would try a second opinion at this point. Some options:

Dr. Jenike is PANDAS knowlegable http://www.mclean.harvard.edu/about/bios/detail.php?username=mjenike. Mass Gen, NOT to be confused with Boston Childrens Hospital, a definite no-no. If you can't reach Dr. Jenike, minimaxwell on this board may be able to suggest how to.

Dr. O'Hara is an integrative MD, she is extremely smart and thorough: http://www.ihealthnow.org/.

Not to beat the Lyme drum too many times but steroids can activate Lyme, I think you may have posted that you did a steroid burst so it is something to consider. Since Doxy seemed to help it brings to mind Lyme (co-infections) and Mycoplasma. If it were Lyme personally I would ask for IV antibiotics at this point. I will PM you the name of someone that you may be able to get into more quickly for Lyme and I think he has done some work with PANDAS.

 

I think if you stress the urgency of the situation that you may be able to get in more quickly with any of these doctors. Many of us have been there, it is important for you to stay strong and to keep hope that your son will be well.

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Sorry T.Anna. It sounds as though you're on the right path, but you and your DS, especially, may be in need of some "triage," some temporary relief from the overwhelming anxiety and compulsions until you can get him in for the IVIG. Is he still on antibiotics? How long was the steroid taper? Will your doctor prescribe a longer steroid course? Since it appears the steroids provided some relief, have you tried other anti-inflammatories on a regular schedule, like ibuprofen?

 

You might consider some temporary, fast-acting, calming medications, like valium, clonansepam, Zyprexa, etc.; I know a few others here have had to resort to these for temporary relief, awaiting other interventions to become effective. I'm not a big fan of frequent or long-term use of these, and I don't think they "correct" anything, really, but they can help tamp down things for a period and allow your child -- and the rest of your family -- to rest. Zyprexa -- even a very low dose -- put my DS to sleep for a full 10 hours. At first it was alarming, but he so badly needed the break from his compulsions at the time, that in the end it was blessed relief for that one, brief period. Did not like its impacts on him on an ongoing basis so stopped using it after about a week.

 

Was it you who posted previously, looking for local hospitals that might be PANDAS-savvy and ready to help you and/or your DS if you walked into the ER? If not, then perhaps you'll get some responses from some locals who can guide you in that respect. Frankly, it's not just in Boston -- PANDAS families have had some similar issues here in the Midwest -- so I would be very careful about walking into a situation where you don't know how receptive and/or savvy they are, and they don't know you or your DS. They are all too likely to dope your DS up with psych drugs and stop there, without digging deeper into his condition, or acknowledge your request that they do so. At least if you and your DS's doctor administer a psych drug like Zyprexa or valium yourselves for triage purposes, you'll be in control of the cessation of its use and continuing to get your DS down the path of effective treatment via abx and/or IVIG.

 

Again, so sorry. We've been there, and I know it can be a dark, painful place. It can and will get better, but you may need some atypical and/or creative assistance along the way. Sending warm and prayerful wishes for recovery your way!

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I'm just throwing this out there because I'm not sure what your SSRI history is. My oldest son was on SSRI a few years ago. At one point we switched him to Luvox and he took a drastic turn for the worse. It was very scary. When we switched over to Celexa things improved. His psychiatrist at the time said that some kids have a very negative reaction to Luvox. I don't know that is what's going on here but always something to consider. Hope things improve for you soon.

 

Dedee

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THANKS for all the responses! He finally got out if the bathroom at 3:30am and was clingy & needy. It's crazy how this "thing" grabs hold of them and then once it's done it's like it never happened : /

 

This morning my younger son wasn't looking great. He's on his 10th day of amox for strep, but his breath smelled like strep (I know that sounds crazy) and sure enough it was positive, so he was put on a zpack and I realized that is the only abx we haven't tried.

 

The frantic emails I sent last night were the right amount of pestering. The IVIG papers were done today!! DS14 also has tested positive for strep today, we added zpack to the doxycycline (he finished rifampin and Clindomycin yesterday). He just started the steroid taper on Saturday and it seems to helping the mood and general attitude (although he's still avoiding most if them).

 

Thanks for the sedative suggestion. He wouldn't take anything last night during the crisis, we have Ativan and I even tried Advil pm (has bayone given that to a kid ever?) or Benadryl, but he was against anything "not prescribed" for PANDAS.

 

What DS14 is taking:

Doxcyclomin

Zpack

Advil

Culturelle

Florastor

Prednisone 40mg

Luvox 25 mg - which I would love to eliminate, but scared to pull it out without a medial blessing (no idea why).

He's not on any vitamins right now since I was convinced they were messing with him. Now I have a million vitamin bottles and no idea what to add (if anything).

 

Things were going ok until last night and I was even happy to see him go and try to go to the bathroom/shower, but it all went down the drain rather quickly last night. My philosophy is that he caught strep from his brother and that it took hold of him last night. Hoping that having the zpack will help with that and maybe tomorrow will improve more. We should probably do another blood test, but he still hasn't left the house in 3 weeks so that may be tough to do.

 

Thanks for the hospital pointers. I have a friend who heads the ped ER downs town NYC so I guess I should ask her and my pediatrician about how I can contact them if we need to go that route.

 

Thanks again.

T.Anna

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Sounds like the exposure to strep may have thrown your DS over the top. I would bet anything, he is positive for strep as well. But, that being said, quite a number of us have found eventually, that it is not JUST strep that triggers the autoimmune reaction that causes the neuropsych issues. As others have mentioned, you brought up steroids (and yes, steroids can make lyme worse if there is lyme), luvox can make symptoms worse (SSRI's can too, and so can other psychotropic drugs). I would highly suggest that you test him for multiple infections (I would suggest strep, since you know there was exposure, lyme, co-infections, viruses, parasites, c-diff, giardia, and h-pylori.) I would also suggest that you check his methylation abilities (MTHFR gene mutation might play a role in how your child's body deals with infection, pyroluria, and more. The NIMH website makes it clear that PANS may not just be about strep.

 

I know you will be doing the IVIG, and personally we had that done, as well...it certainly took the edge of things for our boys. But, that being said, if there are any other infections and/or environmental triggers,and/or metabolic issues, he will continue having problems until they are treated.

 

Good luck. I'll keep him in my prayers.

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DS 14 is stuck in the bathroom crying hysterically. He's stuck trying to avoid the OCD. He has been there for 8 hours. The last hour he has been crying like crazy. He was in total avoidance of EVERYTHING the past month (hardly going to the bathroom, no showering, teeth brushing). The past week he has been in a much better mood, we believe due to steroids (we went from a burst to a taper). And today he thought of showering after the bathroom and then this crying started.

 

We signed off on doing IVIG 2.5 weeks ago and we still don't have the papers signed and ready to go.

 

What do you do with a child stuck in the bathroom or the house? Thank goodness our other two kids haven't woken up and our neighbors (we live in an apartment) haven't called the police, but this not a way to live.

 

Would there be any reason to go to a hospital? I know you hear crazy stories like in Boston, but at least we could run more bloods, etc.

 

Sorry, feeling like we lost out way.

 

T.Anna

DS 14

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DS 14 is stuck in the bathroom crying hysterically. He's stuck trying to avoid the OCD. He has been there for 8 hours. The last hour he has been crying like crazy. He was in total avoidance of EVERYTHING the past month (hardly going to the bathroom, no showering, teeth brushing). The past week he has been in a much better mood, we believe due to steroids (we went from a burst to a taper). And today he thought of showering after the bathroom and then this crying started.

 

We signed off on doing IVIG 2.5 weeks ago and we still don't have the papers signed and ready to go.

 

What do you do with a child stuck in the bathroom or the house? Thank goodness our other two kids haven't woken up and our neighbors (we live in an apartment) haven't called the police, but this not a way to live.

 

Would there be any reason to go to a hospital? I know you hear crazy stories like in Boston, but at least we could run more bloods, etc.

 

Sorry, feeling like we lost out way.

 

T.Anna

DS 14

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I would avoid taking him to the hospital.Took my dd in the same state, wouldn't leave house, severe anxiety. Took hours to get her to the hospital which was what her doctor recommended, and we were questioned for eight hours. Will never do that again ! Most doctors don't know what PANDAS looks like when its at its worst.

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Thanks. Yes, I've wanted to tests him for gene mutations. He does also test positive for mycoplasma and coxsackie (sp?). He tesred negative for Lyme on the various "dtandard tests. His second blood test had shown that mycoplasma went down with all the meds, but strep had actually gone up. I'm also curious since he has contracted a fungus from wrestling, I would test him for candida too (in case it was from the meds). But I think that it will be a long time before he re-enters society and can go get another blood test at the lab, I am, probably unwisely, putting a lot if hope in the IVIG to help kick start his body and then the other pieces (meds, CBT) will have more if an effect???!

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Thanks. Yes, I've wanted to tests him for gene mutations. He does also test positive for mycoplasma and coxsackie (sp?). He tesred negative for Lyme on the various "dtandard tests. His second blood test had shown that mycoplasma went down with all the meds, but strep had actually gone up. I'm also curious since he has contracted a fungus from wrestling, I would test him for candida too (in case it was from the meds). But I think that it will be a long time before he re-enters society and can go get another blood test at the lab, I am, probably unwisely, putting a lot if hope in the IVIG to help kick start his body and then the other pieces (meds, CBT) will have more if an effect???!

If you need a blood test- see if you can get the draw on IVIG day, before they start the drip. He'll be jabbed anyway, so 2 birds with one stone.

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