Strep exposure - rough couple of weeks

[mama2alex]

We've had a very rocky couple of weeks. Went on vacation with another family and they were kind enough to bring their sick 4 year old along. After she'd coughed in my husband's face and at the dinner table, I said something and the mother claimed the cough was old and she was fine (it was a very wet cough). Then on the way home they had to make multiple stops b/c the kid had a stomach ache (very common for little kids with strep, according to our doc). But at the time, we had no idea she might have strep. Three days later (back at home), we were all sick. Two days later, dh had a positive rapid strep and was so sick he had to have IV abx and steroids. And they put me on abx even though my rapid was neg and I wasn't as sick as DH. The LLMD didn't change any of ds10's meds, b/c his rapid strep was neg and his only physical symptoms were slight cold symptoms and fatigue for a day. But starting last Friday we saw him getting more OCDish and controlling. Anxiety started increasing and he wouldn't go to class all this week. He was panicky and hitting himself, yelling, hit me, grabbed a knife once, a lot of the old scary stuff we hadn't seen in months. I am exhausted and disheartened. I had hoped that the improvements we saw with the Lyme/Bartonella treatment would hold and he'd be protected against strep, but obviously not. After another call to the LLMD this week to let him know ds was continuing to spiral down, they prescribed 10 days of cholestyramine. This is a drug for lowering cholesterol levels, but the LLMD said it would bind with and remove neurotoxins. It scares me to give him this, but we are going to trust. Has anyone else ever heard of this drug or given it to their child??

 

Also, would be interested to hear if other Lyme/coinfection kids have reacted to strep and had an exacerbation when they were clearly improving on Lyme treatment.

 

Also, has anyone else told their friends about their child's autoimmune issues only to have them ignore you and bring their sick kids around like its nothing? I am so mad about this! They wouldn't even take their daughter in for a strep test after we told them what happened. They tried to claim we caught it from the motel room we stayed in the night before we met them!

[KeithandElizabeth]

YES!!

 

We have had regressions all along. At one point in time my son was 96% better and then he got a mycoplasma infection which set him way back!!! This was followed by a couple of viruses which set him slightly back and then WHAM, another huge setback with a staph infection!

 

So, I do think that staph, strep and mycoplasma can create big setbacks and for some children, viruses, stress, etc.... can create little setbacks.

 

I think that these children need to get rid of the big infections and then spend some real time healing before they no longer respond to other illnesses. Our LLMD said that we should not expect our children, or adults for that matter, to be at 100% when done with treatment because there is nerve damage healing involved once all infections are gone.

 

It is so painful for the whole family when we experience these setbacks and my heart goes out to you!

[Suzan]

I'm so sorry this happened! My dd was recently exposed to something and caught a virus. She really did back slide for a few weeks but she did get back to her new normal. Right now, I'm taking her off her abx for her retest next week, and she is backsliding now to. But I know she will bounce back since she's finally on the right medications.

 

I hope you all get better soon and find things evening out quickly.

 

Susan

[justinekno]

My husband takes this drug for another reason but I know it's something he has to take a couple of hours away from any vitamins or antibiotics because it does bind everything. It's primary function is to bind the bile from the blood and help remove it from the body. I have read that it's being used more and more for detox which I can see why. If you're nervous about using it, can your LLMD suggest a more natural way of detox? Our LLMD suggested chlorella but I haven't read up on it. I hope he feels better soon.

 

 

After another call to the LLMD this week to let him know ds was continuing to spiral down, they prescribed 10 days of cholestyramine. This is a drug for lowering cholesterol levels, but the LLMD said it would bind with and remove neurotoxins. It scares me to give him this, but we are going to trust. Has anyone else ever heard of this drug or given it to their child??

 

[mama2alex]

Thanks for the words of support ladies. Justine, this is the most worrisome part of giving him this drug at this point. He eats and takes vitamins/medicine all day long (or so it seems!). It's hard to keep this medicine separate at all, let alone by hours. I'm making it top priority to keep it away from abx and probiotics and am worrying less about the rest of the supplements. I'm going to see how he does over the weekend and then maybe call our LLMD on Monday and see if we can switch to something else. He's already on a pretty good detox protocol, but maybe they felt he needed a "big gun" for a few days since things spriraled so suddenly and significantly.

 

He went in to school for a few hours yesterday and of course none of his worst fears came true, so I think we are over that hump. Still somewhat anxious at bedtime and somewhat moody, but right now I think I see improvements happening.

 

The worry is crushing. I'm so glad to have this group to turn to for info and support.

 

Thanks again!

 

My husband takes this drug for another reason but I know it's something he has to take a couple of hours away from any vitamins or antibiotics because it does bind everything. It's primary function is to bind the bile from the blood and help remove it from the body. I have read that it's being used more and more for detox which I can see why. If you're nervous about using it, can your LLMD suggest a more natural way of detox? Our LLMD suggested chlorella but I haven't read up on it. I hope he feels better soon.

 

 

After another call to the LLMD this week to let him know ds was continuing to spiral down, they prescribed 10 days of cholestyramine. This is a drug for lowering cholesterol levels, but the LLMD said it would bind with and remove neurotoxins. It scares me to give him this, but we are going to trust. Has anyone else ever heard of this drug or given it to their child??

 

[dut]

Hi - we "had" friends that did this to us too.. my PANDAS dd7 can react to any illness and our 'friends' were aware of this and would say yes they were healthy only for both kids to be coughing and spewing phlegm when we would meet up. The final straw was when they came to our house for a xmas thingy 5 days before xmas. Another family with small children were there too. After an hour or so and we were sitting down for food the father announced he didn't want to eat 'cos he still felt ill.... ill?

 

Both he and their kids had been vomiting the day before - great, thanks.

 

All four of my family and all four of the other family came down with really bad gastro.

 

Needless to say they got a phone call and we haven't seen them since. My dd kicked off 'cos she really liked their little boy but I told her friends don't do that. All it takes is a heads up, you can always rearrange.

 

I'd ditch those friends if I were you.. friends show consideration and respect.

 

Can you tell I'm still angry?

 

I get that sometimes people don't get the importance 'cos they don't live it but if you've made it clear to them, I believe, they should respect your wishes even if they don't understand the seriousness of the situation.

Edited March 5, 2011 by dut

[Suzan]

Oh I forgot to mention, I take cholestyramine in the powder form and my dd9 takes it in a pill form. I give it to her as soon as she gets home from school and then no other pills until 6:30 (usually 2 hours in between). I take mine in the morning 1 hour before other pills and food. I guess it's working...???

 

Susan

[matis_mom]

We've had a very rocky couple of weeks. Went on vacation with another family and they were kind enough to bring their sick 4 year old along. After she'd coughed in my husband's face and at the dinner table, I said something and the mother claimed the cough was old and she was fine (it was a very wet cough). Then on the way home they had to make multiple stops b/c the kid had a stomach ache (very common for little kids with strep, according to our doc). But at the time, we had no idea she might have strep. Three days later (back at home), we were all sick. Two days later, dh had a positive rapid strep and was so sick he had to have IV abx and steroids. And they put me on abx even though my rapid was neg and I wasn't as sick as DH. The LLMD didn't change any of ds10's meds, b/c his rapid strep was neg and his only physical symptoms were slight cold symptoms and fatigue for a day. But starting last Friday we saw him getting more OCDish and controlling. Anxiety started increasing and he wouldn't go to class all this week. He was panicky and hitting himself, yelling, hit me, grabbed a knife once, a lot of the old scary stuff we hadn't seen in months. I am exhausted and disheartened. I had hoped that the improvements we saw with the Lyme/Bartonella treatment would hold and he'd be protected against strep, but obviously not. After another call to the LLMD this week to let him know ds was continuing to spiral down, they prescribed 10 days of cholestyramine. This is a drug for lowering cholesterol levels, but the LLMD said it would bind with and remove neurotoxins. It scares me to give him this, but we are going to trust. Has anyone else ever heard of this drug or given it to their child??

 

Also, would be interested to hear if other Lyme/coinfection kids have reacted to strep and had an exacerbation when they were clearly improving on Lyme treatment.

 

Also, has anyone else told their friends about their child's autoimmune issues only to have them ignore you and bring their sick kids around like its nothing? I am so mad about this! They wouldn't even take their daughter in for a strep test after we told them what happened. They tried to claim we caught it from the motel room we stayed in the night before we met them!

Hi,

When my ds starting Lyme treatment two years ago, they did prescribe a drug called "Welchol", I'm not sure if it's the same your son was given, but it was supposed to soak up toxins (although the traditional use was also a cholesterol-lowering drug). They had him on that for months, and I don't think it made much of a difference, but it did not hurt him either. My point is just this: yes, it makes sense, and it's probably very safe if you are only doing it for 10 days.

[Familyof5]

My entire family takes this drug. Myself, husband, and three kids. Our immune systems are unable to breakdown toxins, so we take this regularly to keep us free from neurotoxins. I've been on it the longest (4 years). It is VERY safe, but you do need to space it between other drugs and vitamins. My doc regularly uses this drug for lyme treatment. He will also prescribe actos if die-off occurs initially when taking Cholestyramine. Watch out for die-off.

[sptcmom]

We've had several set backs due to Strep etc exposure. Inspite of precautions bordering on crazy at school, we've still had it and once at music school. We rotated abx once and it worked. We now just rotate the herbal and homeopathic protocol and that seems to halt issues but with herxing. I will take herxing over backslide anyday and we're making that our M.O. The rotation antimicrobial protocol is pricey but has been worth it so far. Figure we can cut back other places.

Curiously enough our LLMDs 1 and 2 both donot recommend cholestyramine for kids. Our LLMD 2 actually felt strongly about it being too strong for kids.We use microsilica rotated with bentonite clay for detox. Also chlorella and cilantro for different kind of detox. Each ofthese detoxes diff issues as a primary function which is what I like to pay attention to and accordingly rotate.

[susie]

We've had a very rocky couple of weeks. Went on vacation with another family and they were kind enough to bring their sick 4 year old along. After she'd coughed in my husband's face and at the dinner table, I said something and the mother claimed the cough was old and she was fine (it was a very wet cough). Then on the way home they had to make multiple stops b/c the kid had a stomach ache (very common for little kids with strep, according to our doc). But at the time, we had no idea she might have strep. Three days later (back at home), we were all sick. Two days later, dh had a positive rapid strep and was so sick he had to have IV abx and steroids. And they put me on abx even though my rapid was neg and I wasn't as sick as DH. The LLMD didn't change any of ds10's meds, b/c his rapid strep was neg and his only physical symptoms were slight cold symptoms and fatigue for a day. But starting last Friday we saw him getting more OCDish and controlling. Anxiety started increasing and he wouldn't go to class all this week. He was panicky and hitting himself, yelling, hit me, grabbed a knife once, a lot of the old scary stuff we hadn't seen in months. I am exhausted and disheartened. I had hoped that the improvements we saw with the Lyme/Bartonella treatment would hold and he'd be protected against strep, but obviously not. After another call to the LLMD this week to let him know ds was continuing to spiral down, they prescribed 10 days of cholestyramine. This is a drug for lowering cholesterol levels, but the LLMD said it would bind with and remove neurotoxins. It scares me to give him this, but we are going to trust. Has anyone else ever heard of this drug or given it to their child??

 

Also, would be interested to hear if other Lyme/coinfection kids have reacted to strep and had an exacerbation when they were clearly improving on Lyme treatment.

 

Also, has anyone else told their friends about their child's autoimmune issues only to have them ignore you and bring their sick kids around like its nothing? I am so mad about this! They wouldn't even take their daughter in for a strep test after we told them what happened. They tried to claim we caught it from the motel room we stayed in the night before we met them!

 

 

If you decided to continue the cholestyramine beyond 10 days, I would insist upon a cholesterol panel. You don't want a child to have a low cholesterol reading since cholesterol is vital to brain developement and function.