Lost - Not sure where to turn

[pandakid11]

Hi

We are lost on where to turn and what treatment our son (age 11) should be on?

 

Symptoms:

Shakiness (Baclofen helps), unless he is jolting (anti-biotics seem to control this part).

Stomach pain - Severe (always hurting, always nauseated) - takes OTC stuff to help plus promethazine

Fatigue

Pain - comes in waves all over (SED rate is normal, however)

Startle response is severe - just calling his name can cause startle response, fear in face from being scared.

Emotional at times - will cry over nothing. Never had this prior to getting sick.

ASO is high - despite anti-biotics

 

So, what do we do to help him? What doctor? We are going to a pediatric rheumatologist next week for another opinion.

We have ruled out tumors etc via MRI scan, EEG. He has normal EKG, no murmurs.

 

Thanks for all help.

[MomWithOCDSon]

With the high ASO and stomach pain, it makes me wonder if maybe there might not be strep in his gut? Though we never tested our DS specifically for strep in the gut, I'm pretty sure it was part of his PANDAS; his titers remained high for an extended period, as well, despite a lack of classic strep symptoms (no sore throat, no fever), and he'd complained about gastric issues off and on for years.

 

Are you using probiotics? If so, what kind(s) and in what doses? While some folks advocate hefty probiotics, especially during antibiotic use, we found that too much made DS bloated, gassy and uncomfortable. But once we backed off a little and found the "magic" level, he seemed to benefit.

 

You might also consider using some bentonite clay and/or charcoal for helping absorb some of the stuff the antibiotics and/or probiotics are killing off. We still use bentonite periodically.

 

As for the emotional lability (crying over "nothing"), I can completely relate there too. My DS did that off an on (don't mean to scare you) for months during the depth of his illness. But really, it's pretty understandable if you can separate yourself from it a bit and look at it objectively. I mean, if your gut was hurting you 24-7, and maybe you had some fears and/or anxieties you couldn't articulate or even begin to identify because your brain is in almost non-stop "fight or flight" mode, you'd be touchy too, eh? Plus, I don't know if your DS is beginning the puberty thing, but mine was at 11, and hormones on top of all the other stuff can absolutely wreak havoc.

 

Have you tested for co-infections (lyme, etc.)? The fatigue and pain might point to some other infectious trigger besides strep, and those could certainly contribute to the PANS/PANDAS, too.

 

I would stay with the antibiotics (have they made a dint in any of the behaviors and/or pain, or is it just as bad now or worse than it was before?), and I would get to a PANDAS-savvy doctor and/or a DAN! or LLMD to help with the investigation as to what might be behind the gastric and pain issues.

 

Hang in there!

[bigmighty]

Fatigue, pain, and exaggerated startle response make me thing of epstein barr virus. I have a friend who has it and these particular symptoms are quite pronounced. Also, sometimes with EB, titer scores are high and remain high. Not saying that it isn't PANDAS. Just that you might want to look into the possibility of EB, as well. So very sorry this is happening to your child.

[pandakid11]

HI

And there is not much you can do for EBV, is there? This just bites. I am so tired of him being sick everyday and

watching him suffer. Just not fair.

Take care

 

 

Fatigue, pain, and exaggerated startle response make me thing of epstein barr virus. I have a friend who has it and these particular symptoms are quite pronounced. Also, sometimes with EB, titer scores are high and remain high. Not saying that it isn't PANDAS. Just that you might want to look into the possibility of EB, as well. So very sorry this is happening to your child.

[bigmighty]

HI

And there is not much you can do for EBV, is there? This just bites. I am so tired of him being sick everyday and

watching him suffer. Just not fair.

Take care

 

 

Fatigue, pain, and exaggerated startle response make me thing of epstein barr virus. I have a friend who has it and these particular symptoms are quite pronounced. Also, sometimes with EB, titer scores are high and remain high. Not saying that it isn't PANDAS. Just that you might want to look into the possibility of EB, as well. So very sorry this is happening to your child.

 

It'd be pretty easy to have the docs rule it out. At least you'd know for sure. And, if it is EB, the vast majority of people get better with a few months of R&R. At least you'd know what you were dealing with. What docs have you all seen, so far, and what have they tested for?

[Kiera]

FYI- promethazine is also used as a sleep aid so may be contributing to fatigue.

[hugs2day]

PANDAKID11,

I am so sorry your son is so sick. How long has your son been on antibiotics? Which one? I know at one point you mentioned he would not take the antibiotics because his stomach hurt too much so I was thinking maybe you need to give it more time or maybe needs higher dose. Can't say for sure. He does sound like he has PaNDAS but maybe other comorbid conditions as well like EBV.

 

The stomach problem is puzzling. My kids get stomach problems but they pass once the PANDAS symptoms have been managed with antibiotics. Does he vomit a lot or just have nausea? Some other post yesterday mentioned a form of encephallitis that had symptoms of vomiting.

 

I know your son saw an LLMD did he test for viruses and infections? Yeast? Clostridia?

 

There seems to be a lot going on with your son for him to be this sick since November. I hope the doctors keep looking and figure out something soon.

 

Also by any chance is he getting in his 12 yr molars, the bacteria released during tooth eruption is partly strep mutans. My kids react to that dramatically.

 

So much to think about I know but if you would like to please share a little bit more about what his current treatment plan is then maybe some more experience forum members will have some suggestions.

Take care.

[tpotter]

PANDAKID11,

I am so sorry your son is so sick. How long has your son been on antibiotics? Which one? I know at one point you mentioned he would not take the antibiotics because his stomach hurt too much so I was thinking maybe you need to give it more time or maybe needs higher dose. Can't say for sure. He does sound like he has PaNDAS but maybe other comorbid conditions as well like EBV.

 

The stomach problem is puzzling. My kids get stomach problems but they pass once the PANDAS symptoms have been managed with antibiotics. Does he vomit a lot or just have nausea? Some other post yesterday mentioned a form of encephallitis that had symptoms of vomiting.

 

I know your son saw an LLMD did he test for viruses and infections? Yeast? Clostridia?

 

There seems to be a lot going on with your son for him to be this sick since November. I hope the doctors keep looking and figure out something soon.

 

Also by any chance is he getting in his 12 yr molars, the bacteria released during tooth eruption is partly strep mutans. My kids react to that dramatically.

 

So much to think about I know but if you would like to please share a little bit more about what his current treatment plan is then maybe some more experience forum members will have some suggestions.

Take care.

 

 

I would definitely check for c-diff and h-pylori with the stomach pain. If not that, it could be strep or other things, but you don't want to leave untreated c-diff and h-pylori, so it's really important to rule out.)

 

Probiotics with abx is a must...and good ones.

 

If it is EBV or another virus, your doc might want to try valcyclovir. We also take some natural supplements.