laure Posted June 9, 2011 Report Share Posted June 9, 2011 My daughter is almost living in the garage right now. All of her school supplies/sports equipment and apparel/instruments cannot come in the house, or then the house becomes contaminated. Only she can touch these things, and then she showers after any necessity to touch them. Every day a new thing takes residence in the garage. Also now she is worried that the outside of her mouth is contaminated, which is a little scary, so she is placing pills carefully inside her mouth without touching her lips...so if this extends to food, which she has mentioned in a passing way, we could be in big trouble fast. I give her 1 advil in the AM, and it seems to help, but would love to give them morning, noon, and night. Not sure of adverse affects, and also stomach issues, since she is on 4 abx. (Hopefully balanced with 400 billion probiotics, 10 bentonite clay pills). Any suggestions? Link to comment Share on other sites More sharing options...
sf_mom Posted June 9, 2011 Report Share Posted June 9, 2011 Temporarily using Ibuprofen is fine. It is not a long term solution though due to potential side effects. We also use periodically for rages and it helps tremendously. -Wendy Link to comment Share on other sites More sharing options...
ShaesMom Posted June 9, 2011 Report Share Posted June 9, 2011 Temporarily using Ibuprofen is fine. It is not a long term solution though due to potential side effects. We also use periodically for rages and it helps tremendously. -Wendy Ditto! We used temporarily for awhile and also had good success. Link to comment Share on other sites More sharing options...
LNN Posted June 9, 2011 Report Share Posted June 9, 2011 We were in a bad place last summer post-IVIG and out of desperation, we did motrin every 6 hours, up to three times a day for 8 weeks. Not something I'd recommend, but we were desperate (and at the time, thought it was "turning of the pages" so didn't pursue alternatives with the doctor). As we wait for an upcoming LLMD appt, we're again needing an anti-inflammatory, but this time, giving 125 mg aleve in the morning and if needed, once more in the evening, tho I try no to. (aleve lasts longer - can give 125mg @55lbs) We also give milk thistle for liver support. Like I said, not at all ideal. But sometimes getting thru the day is a huge task. Link to comment Share on other sites More sharing options...
laure Posted June 9, 2011 Author Report Share Posted June 9, 2011 We were in a bad place last summer post-IVIG and out of desperation, we did motrin every 6 hours, up to three times a day for 8 weeks. Not something I'd recommend, but we were desperate (and at the time, thought it was "turning of the pages" so didn't pursue alternatives with the doctor). As we wait for an upcoming LLMD appt, we're again needing an anti-inflammatory, but this time, giving 125 mg aleve in the morning and if needed, once more in the evening, tho I try no to. (aleve lasts longer - can give 125mg @55lbs) We also give milk thistle for liver support. Like I said, not at all ideal. But sometimes getting thru the day is a huge task. thanks for the suggestions. I am upping the frequency today....just too many tears to handle. I have milk thistle but was holding off on trying it because I was afraid of a herx-type reaction...not sure it could get a lot worse here though. Any negative experiences for you? Link to comment Share on other sites More sharing options...
LNN Posted June 9, 2011 Report Share Posted June 9, 2011 thanks for the suggestions. I am upping the frequency today....just too many tears to handle. I have milk thistle but was holding off on trying it because I was afraid of a herx-type reaction...not sure it could get a lot worse here though. Any negative experiences for you? I never felt a herx experience from milk thistle. It only seems to help DS feel better. I started taking it as well and my body just feels like it runs a little smoother. Nothing I can put a finger on - just feel "lighter". I feel a little sluggish if I skip more than a day or two. I am on the look out for something "better". Right now, we've stopped tindamax because it was too much and the herx and related inflammation seemed to trigger two months of Pandas stuff. That has finally settled down. But I know we'll need to push ahead, so we're going to need some sort of inflammation management. On the agenda for our LLMD appt in two weeks. Link to comment Share on other sites More sharing options...
laure Posted June 9, 2011 Author Report Share Posted June 9, 2011 thanks for the suggestions. I am upping the frequency today....just too many tears to handle. I have milk thistle but was holding off on trying it because I was afraid of a herx-type reaction...not sure it could get a lot worse here though. Any negative experiences for you? I never felt a herx experience from milk thistle. It only seems to help DS feel better. I started taking it as well and my body just feels like it runs a little smoother. Nothing I can put a finger on - just feel "lighter". I feel a little sluggish if I skip more than a day or two. I am on the look out for something "better". Right now, we've stopped tindamax because it was too much and the herx and related inflammation seemed to trigger two months of Pandas stuff. That has finally settled down. But I know we'll need to push ahead, so we're going to need some sort of inflammation management. On the agenda for our LLMD appt in two weeks. I remember you listing milk thistle on the thread about supplements that were crucial to your treatment. It sounds like it cannot hurt, and I am afraid of any liver/gut damage. My dd10 is now 7 months on 4 abx, so there could be a lot of issues right now, really no idea why we are in such a horrible spot. We see Dr. N Tuesday, praying for some answers. Link to comment Share on other sites More sharing options...
philamom Posted June 9, 2011 Report Share Posted June 9, 2011 Since your appt. with Dr. N is in five days, you may want to hold off on adding anything until you see him. Good Luck! Link to comment Share on other sites More sharing options...
dcmom Posted June 9, 2011 Report Share Posted June 9, 2011 Laure- I am so sorry. There is a thread on the pandas forum you might want to look at.... It is about helping anxiety. Momwithocdson said she has used one valerian root capsule in the am to calm things down. I just ordered some to give it a try. Am thinking if it could calm things down a bit, might be more benign than advil. I do worry about the cumulative effects of all these meds on the body Maybe this could help hold you over.... I will let you know how it works- I plan on a trial over the weekend, and then will see how it works for school next week. Link to comment Share on other sites More sharing options...
smartyjones Posted June 9, 2011 Report Share Posted June 9, 2011 Also now she is worried that the outside of her mouth is contaminated, which is a little scary, so she is placing pills carefully inside her mouth without touching her lips...so if this extends to food, which she has mentioned in a passing way, we could be in big trouble fast. i certainly hope it won't get into food issues for her. just in case, bed bath and beyond has a chopstick like plastic thing that is a combination of a large clothespin and chopsticks -- very easy to use and may be acceptable to her if she needs something to help eat. we found them after my son had food contamination issues and got them just in case but now they use them for fun. please keep me informed about the appt. i'll be very interested to hear how it goes. good luck. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now