Getting worse and worse....

[lmkmip67]

I am sorry, I just need to vent. We are 1 1/2 weeks from IVIG #3. I realize healing can take time, so I don't expect huge strides overnight. But I also don't expect him to get so much worse. This week his OCD is at an all time high. He is focusing on the weather 24/7 (fear of thunderstorms) back to long wiping, arguing and meltdowns galore, tics. His vocal tic isn't too bad, but he has started snapping his fingers. Last time things started to get better around 6 weeks post IVIG. This time they are getting worse. No one that I know of is sick around him, not here at home or at camp. Nothing has changed, we just got back from vacation last week. we only went an hour away to the beach. I can't keep trying to figure out WHY or I will go batty. I will be talking to Dr. B about lyme some more. But after fighting with him for 45 minutes over 20 minutes of reading, him losing tv and having a crying fit in his room for 20 minutes, I have to admit, he is not improving. Sorry to vent, just has to get it out.

 

Lisa

[LNN]

Lisa,

I'm really sorry you're in this place. I get it. The lyme diagnosis is best set aside until you see Dr B and get a copy of your labs. But there are lots of days between then and now, so let's assume for a minute it is lyme. If so, what you're seeing is a herx. And the best way to treat a herx is with detox. It's what I wished I'd known about after my DS's IVIG. You can post on the lyme forum for a wider range of ideas, but for starters, I'd read up on milk thistle (do not use if your son is allergic to ragweed - it's the same family). Here's a good link milk thistle There are caveats - if you take certain medications, milk thistle can change the rate of liver processing and cause certain meds levels to elevate higher than intended - so do look for the list of contra-indicated meds - but it's unlikely a child would be on them.

 

For brain fog, many use alpha lipoic acid or glutathione. To soak up toxins out of the GI tract, clay (liquid or you can get it in capsules but you have to take lots of 'em), charcoal (useful but soaks up a lesser range of toxins) or chlorella (really effective stuff but you need to take lots of it - like 10 little pills/dose 3 times a day), as much water as he'll drink, and make sure he's having daily BMs to get junk out of the body.

 

And of course, good ol motrin. If you don't like using motrin, curcumin is an anti-inflammatory, but it doesn't touch symptoms in our house. Unfortunately, time is the thing that is needed most. But we've found detox to be hugely helpful to get through bad times. Keeping you in my thoughts.

[lmkmip67]

I will try to keep that in mind and see if I can get some milk thistle. He doesn't display any allergies to rag weed as of yet. I will see if I can find one of the other things as well. can't hurt. Thanks!

[kimballot]

I want to ditto LLMs idea about herxing and detox. My son had a horrible exacerbation after his first IVIG. I really did see a difference when we used charcoal regularly (which is difficult to do becuase it has to be 2 hours away from antibiotics and probiotics). WE also started B vitamins, which helped, and Coq 10, which helped - and all of these were recommended by the lyme doctor. FYI - we did do pretty exhaustive amounts of lyme and coinfection testing and he came up negative all around. Nonetheless - the supplements she suggested did help!

[JAG10]

Lisa,

 

What is ds's current abx regimen? Something is causing his uptick. Is there room to increase the abx dose or change to a different one before you go back to Darien? If your boy is one that doesn't swab/culture positive or show typical signs of illness to give you a clue, sometimes the only way you'll know if it is an infection is by response to abx. Viruses totally stink, but usually there are some symptoms. Have you tried emailing the nurses? If you decide to give that a try, keep it short and sweet with one or two main questions you want them to run by the doc. If he's in camp, he's exposed like in school, no? Just because you aren't hearing about circulating infections doesn't mean they are not present. Heck, I'm floored when my own in-laws fail to let me know and I have to stumble upon the Augmentin in the fridge! It's actually to the point where I find myself doing an abx surveillance everytime I go into someone's kitchen! My SIL has discovered my youngest nephew needed 4 different abx to clear strep. She wasn't going back to the doc's because my nephew was still symptomatic either; she only took him back because of my girls otherwise she wouldn't have realized what difficulty he was having clearing the infection. I definitely have one eye on that boy!

 

If you get the doc to increase his current abx or change to a different abx before you go back in a couple weeks, and there is no change, that is still valuable information, no? Idk, it can't hurt to run it by them.

 

Sorry

Jill

[lmkmip67]

That is a good idea. I will drop them a quick note. Couldn't hurt. He is on Augmentin twice a day. I forget what dosage that is, but it is treatment dosage as if he had strep. Thanks!

 

Lisa,

 

What is ds's current abx regimen? Something is causing his uptick. Is there room to increase the abx dose or change to a different one before you go back to Darien? If your boy is one that doesn't swab/culture positive or show typical signs of illness to give you a clue, sometimes the only way you'll know if it is an infection is by response to abx. Viruses totally stink, but usually there are some symptoms. Have you tried emailing the nurses? If you decide to give that a try, keep it short and sweet with one or two main questions you want them to run by the doc. If he's in camp, he's exposed like in school, no? Just because you aren't hearing about circulating infections doesn't mean they are not present. Heck, I'm floored when my own in-laws fail to let me know and I have to stumble upon the Augmentin in the fridge! It's actually to the point where I find myself doing an abx surveillance everytime I go into someone's kitchen! My SIL has discovered my youngest nephew needed 4 different abx to clear strep. She wasn't going back to the doc's because my nephew was still symptomatic either; she only took him back because of my girls otherwise she wouldn't have realized what difficulty he was having clearing the infection. I definitely have one eye on that boy!

 

If you get the doc to increase his current abx or change to a different abx before you go back in a couple weeks, and there is no change, that is still valuable information, no? Idk, it can't hurt to run it by them.

 

Sorry

Jill

[lmkmip67]

I heard back from the nurses. They stay to stay on course and talk when we come in. And that he could have been exposed to strep that I was not aware of. The issue I have is if he was exposed after these treatments, then they obviously aren't doing much. But time well tell.

[JAG10]

Ok, I would journal or chart his behavior daily and try to use some kind of numeric judgement to make it as objective as possible. It really, really does help when you are trying to determine what the heck is going on with your kiddo. If numbers don't work for you, list out all his possible behaviors and rate si-slightly improved, I-improved, NC-no change, SW-slightly worse, W-worse...something like that. Tics are easier to measure objectively as well. You will feel better prepared with data.

 

This brings another thought I have had about strep exposure and ivig treatments at the Darien center..... those kids are constantly cycling through the one bathroom there between the IV and the dextrose drip. I'm kind of phobic with the hand sanitizer after handwashing once back in our cubicle when we are there. Jeez, I never used to be a germaphobe!!!

We are there week after you this next time. Your husband got my dd's lunch last time we were there, so sweet! I never know if I'm not being friendly enough or respecting folks' privacy

 

Hang on...

[lmkmip67]

Ahhh, that is you! I know, I feel the same way. I never know if I should say hi to someone or respect their space. Your are right about the bathroom. I am going to arm us with hand sanitizer next time as well. I do, but don't always chase him with it, i will more next time. I have been journaling by the week, your right, that is very helpful. that is how I also know he is worse, and getting worse, than last IVIG. thank you for your input!

[tpotter]

It is possible that your son picked up something somewhere. It doesn't have to be strep once the autoimmune problems have started. Even a cold, allergies, or really anything can trigger it. Several years ago, we were told by Dr. K. to go back on full strength abx when there was an upsurge in symptoms (unfortunately, we were never able to decrease the abx, because my DSs would always get sick.)

 

If your DS is on a prophelactic dose of abx, I would suggest upping the dose if possible, plus I ditto LLM and Kimballot about detoxing.

 

If you continue to have problems after several IVIGs, consider the possibility that there are still other infections that you haven't found.

[lmkmip67]

It is possible that your son picked up something somewhere. It doesn't have to be strep once the autoimmune problems have started. Even a cold, allergies, or really anything can trigger it. Several years ago, we were told by Dr. K. to go back on full strength abx when there was an upsurge in symptoms (unfortunately, we were never able to decrease the abx, because my DSs would always get sick.)

 

If your DS is on a prophelactic dose of abx, I would suggest upping the dose if possible, plus I ditto LLM and Kimballot about detoxing.

 

If you continue to have problems after several IVIGs, consider the possibility that there are still other infections that you haven't found.

 

I don't think so. He has no symptoms of anything. Nothing at all, except the OCD, moods and tics. he is on a treatment dose of abx already so can't really increase. I am wondering if he was exposed to strep and I just don't know it. He is out of camp and we are home all next week so we are going to focus on rest and calming him down a bit. School starts in two weeks and we have a treatment next week. I will focus on detoxing as well, then see where we stand. The antibiotics have never seemed to make a different in his symptoms either. And we have tried three kinds and combinations even. I do feel we are trying what we can if it is just PANDAS. It might be telling if he doesn't improve after this 3rd, so then I will look at other infections. THough I think Dr. B really does look at co-infections, at least he seemed to order a lot of tests. I will research it further, however. Thank you!!

[momaine]

It is possible that your son picked up something somewhere. It doesn't have to be strep once the autoimmune problems have started. Even a cold, allergies, or really anything can trigger it. Several years ago, we were told by Dr. K. to go back on full strength abx when there was an upsurge in symptoms (unfortunately, we were never able to decrease the abx, because my DSs would always get sick.)

 

If your DS is on a prophelactic dose of abx, I would suggest upping the dose if possible, plus I ditto LLM and Kimballot about detoxing.

 

If you continue to have problems after several IVIGs, consider the possibility that there are still other infections that you haven't found.

 

I don't think so. He has no symptoms of anything. Nothing at all, except the OCD, moods and tics. he is on a treatment dose of abx already so can't really increase. I am wondering if he was exposed to strep and I just don't know it. He is out of camp and we are home all next week so we are going to focus on rest and calming him down a bit. School starts in two weeks and we have a treatment next week. I will focus on detoxing as well, then see where we stand. The antibiotics have never seemed to make a different in his symptoms either. And we have tried three kinds and combinations even. I do feel we are trying what we can if it is just PANDAS. It might be telling if he doesn't improve after this 3rd, so then I will look at other infections. THough I think Dr. B really does look at co-infections, at least he seemed to order a lot of tests. I will research it further, however. Thank you!!

A good LLMD will be able to sort out infections based on symptoms and exposure, despite possible negative test results. As you know, these tests aren't very sensitive and can be false negatives. I've no regrets in adding an LLMD to our team, despite the costs. I only wish I'd done it sooner.