philamom

Mucinex is a expectorant that breaks up mucus/cough/congestion. You can buy at local drugstore in capsules, liquid, or granular packets (kids version). It does a great job at thinning mucus. With that said, I feel a little funny when using it. Same with my daughter. My husband has no problems with it. Given your daughter's sensitivity to most products, you may want to start at 1/2 the strength recommended for her age.

You might want to pm JuliaFaith. I know she has mentioned it a few times.

Thanks for sharing!

Could you guys please mention the age of the child when it was done. I'm wondering if there is an age when it's no longer recommended.

Already done. Good luck to your sister (and your family as well)!

Looking forward to the responses, as I recently met a local ENT that would be willing to do this for dd(11). He is very familar with PANDAS/Lyme.

My daughter has been dealing with a huge increase in her already troublesome stomach complaints. Had a few illnesses since Christmas. Received her labs today, and her Sed Rate is elevated again at 40. It was elevated in the 90's last year. Her d-nase is also elevated. Was just wondering if anyone else has elevated sed rate? This concerns me. Some other abnormal labs are high platelets, low iron and saturation, low neutrophils, low cholesterol, high triglycerides, positive ANA w/increased titer since last blood draw, abnormal specific gravity in urinaylsis.

Some folks here have sai there child has a distinct bad breath smell when they have strep. Have you had a throat culture done recently? May be a good idea (of course, a negative doesn't rule out strep). When my daughter was younger (before I knew about PANDAS) she at times would have distinct bad breath. The ped office always had an excuse for it- she's a kid, something she ate... Thinking back I realized it happened during times when she had strep. She also had numerous sinus infections when younger, but the breath smell wasn't always apparent during the sinus infections. Just something to consider.

What kind of dispenser is it? dropper?? thx

Hang in there mdmom! My daughter had a terrible increase of symptoms with her first few IVIG's. Maybe try some advil/motrin. Sending prayers!! also- are you sure he wasn't exposed to anything since the infusion?

How does it taste? Just got a call today that dd's levels are low - supplement with iron.

I'm hoping to as well.

My DD's have also had chronic sinus issues. One of DD's doctors told me that I think more than 2 sinus infections a year is abnormal and should have adenoids examined. I have not done anything about this yet for older DD because we have been embroiled in Lyme/PANS and since she is on constant abx has been better. I am taking DD3 to ENT to discuss adenoids and will post if I learn something useful. BTW I think the Doxy suspension was more expensive then capsules. My former au pair had either staph or MRSA (I wanted to throttle her for letting it go but that's another story) and they gave her 30 days of Doxy, it was much less than suspension like $40/$50 at CVS without insurance. Yes, I did a 60 day run on doxy capsules a while back and had no problem with coverage. My daughter no longer gets sinus infections since receiving IVIG. When she was a toddler she would get them every 6 weeks. Cat scans showed chronic sinusitis.

Hopeny- dd still has tonsils & adenoids. Thanks for the heads up on the cost. We have new insurance this year, so a little worried about coverage on everything. Our last insurance was pretty good.

Hopeny- I couldn't find it listed in the ingredients of Florastor?? Is it possibly a hidden ingredient in the fructose of the kids version? The adult version doesn't have the fructose in it though. Just curious.

I believe Mincocin is in the same class as doxy. You might want to check that out. I just went back on doxy. I hate the stuff, but I'd much rather take it in the winter than the summer. Yeah, I don't know why he thinks the Doryx may not cause the DILE reaction - something about being absorbed in small intestines. I may have gotten it wrong though, we only briefly discussed it. We are considering this at our next appt in 2 months. I forgot about the sun exposure issue though - that would be spring We can't make any changes right now - we are at a last attempt at getting her to school. I really hate this school vs health (treat) decision. I pushed her IVIG back to accomodate the school, and the last few weeks her fixations have returned.

Like I'm saying, it's all about the gut bacteria. Or, in the words of Dr. Alessio Fasano at the U. Maryland School of Medicine in Baltimore, "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including Crohn's and type 1 diabetes." We use prebiotics like galactooligosaccharides (GOS) and fructooligosaccharides to fix the intestinal tight junctions in our house. They seem to work well. As for the NIH budget, I recall the drug Celebrex earning Pfizer the same amount of money in one year as the NIH's National Cancer Institute's entire annual budget (4 billion dollars). The funny thing was, the drug worked no better than advil, motrin, aleve, or any other pain drug already on the market. Nor were side effects appreciably different. Incredible. What brand probiotics/prebiotics do you use? thx

What made you decide on two different types of magnesium?

I'm having one of those "I can't do this anymore" days, and then I remembered reading about this post the other day, but never had the chance to view it. Thank you! The boost I needed. I plan to share with my daughter tomorrow.

What is the difference between doxy and doryx?

Can I ask what the lupus-type reaction involved? After several months of pulsing abx, including minocycline, and reaching a wonderful low baseline, DD11 is having an increase in ticcing as well as symptoms of diffuse itchy skin in the evenings. Trying to figure out what is causing it. Her LLMD has discontinued all abx except tindamax and LabCorp is not allowed to run candida antibodies in NY state. We did liver enzymes today, so will know those results soon. Sorry, no experience with doxycycline. Have you introduced any new supplements? First, I should say that dd made great strides on the minocin (as part of an abx combo). She was on it for 8-9 months. Also, not 100% sure it was the minocin that caused the lupus reaction. Only way to find out would be to introduce it again - not willling to go there. labs: +ANA, +DNA AB (DS), high PTT LA Screen, high DRVVT screen, + hexagonal phase, elevated sed rate & c-reactive protein, elevated lft's symptoms: extreme leg/joint pain, fatigue, butterfly face rash, raynauds, cold all the time, couldn't be in sun, erythema nodosum

Make sure you separate the Florastor from the Nystatin & Diflucan. Curious- are you giving benadryl daily?

Our next move may be to put our daughter(11) on doxy - or something in that family. Our llmd mentioned there is one that is absorbed in the small intestines. She is only on Amox at this time (almost a yr now). We may also try Tindamax again. She can no longer take zith or minocin. Minocin may have caused a drug induced lupus reaction (which was reversed) and zith increases her chronic nausea. Is dorxy the one that is absorbed thru the small intestines? Also plan to make an appt. to see Dr O' in the spring and the USF program in the summer (for vomiting phobia).

Thanks for posting the link kimballot. I printed off the page explaining CVID. Interestingly, it mentions GI problems. There's been a lot of recents posts here on chronic stomach complaints. It also mentions Giardia Lambiaa, which my daughter had three years ago. She never swam in a lake, exc - so we wondered how she contracted it. "Some patients with CVID report gastro complaints such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss" My daughter also had chronic sinusitis since 18 months of age that has resolved with IVIG.

You might want to pm Familyof5, she has some experience with this. Good luck!!