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Indigo

Advil

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I've read here that Advil has helped with PANDAS symptoms...do you all think this is safe to use on a regular basis? Dd has been really struggling in the past week after coming off of the prednisone...it has been so hard to watch! And hard to deal with! I gave her an advil last night when she was so angry she couldn't talk at anyone without screaming. This morning she is much calmer. She is still on clarithromycin...our next step was going to be IVIG but when we went on Sat. to get a blood test to test for the IGA allergy and get her strep titers again and test her thyroid, she was so ballistic we couldn't get it even with three people holding her down. It was awful! There is no possible way we will be able to do the IVIG. Someone told me that singulair has been used to treat her son's PANDAS...has anyone else heard this?

 

And whoo-hoo to a new forum just for us!!!! :wub:B):D

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Hi Indigo,

 

you might check with your doc since dd was on Pred. so recently. I know it isn't safe to give pred. and NSAID's at the same time (too hard on the stomach) and am not sure if they recommend waiting a bit once off pred to go onto Advil (let me know what they say, I'm curious). We gave our dd (45-50#) 200 mg advil every morning for about 2 mo. (June, July). This was okay with our pscyhiatrist...had another patient on this and was fine. (We checked with her since dd was on 10mg Prozac as well and were concerned if they were okay to give together.) Dd had no problems...and I'm guessing we could have done it 2-3x daily, but that was the routine we got into and dd improved on it (and Azithromycin).

 

Gi upset concern was the reason we didn't give advil 24-7 (it's supposed to only last 6-8hours)...we figured we'd want it working during daytime when dd would be eating/interacting with us. I actually think it would be fine to take even 2-3 daily if taken with food. When our dd needed it the most, May, early June, she wasn't eating all her meals and I was nervous about giving her doses on an empty stomach...although it never seemed to cause a problem. If your dd is really bad, IMO I would be okay doing 2-3x daily, at least for a week or so, if she isn't taking the meds on an empty stomach. (But, check with your doc b/c of the pred.)

 

Did they use one of those EMLA patches to numb dd's skin before the blood draw?

 

Where are you going to do the IVIG?

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Hi Indigo,

 

you might check with your doc since dd was on Pred. so recently. I know it isn't safe to give pred. and NSAID's at the same time (too hard on the stomach) and am not sure if they recommend waiting a bit once off pred to go onto Advil (let me know what they say, I'm curious). We gave our dd (45-50#) 200 mg advil every morning for about 2 mo. (June, July). This was okay with our pscyhiatrist...had another patient on this and was fine. (We checked with her since dd was on 10mg Prozac as well and were concerned if they were okay to give together.) Dd had no problems...and I'm guessing we could have done it 2-3x daily, but that was the routine we got into and dd improved on it (and Azithromycin).

 

Gi upset concern was the reason we didn't give advil 24-7 (it's supposed to only last 6-8hours)...we figured we'd want it working during daytime when dd would be eating/interacting with us. I actually think it would be fine to take even 2-3 daily if taken with food. When our dd needed it the most, May, early June, she wasn't eating all her meals and I was nervous about giving her doses on an empty stomach...although it never seemed to cause a problem. If your dd is really bad, IMO I would be okay doing 2-3x daily, at least for a week or so, if she isn't taking the meds on an empty stomach. (But, check with your doc b/c of the pred.)

 

Did they use one of those EMLA patches to numb dd's skin before the blood draw?

 

Where are you going to do the IVIG?

 

Hello EAMom,

Just wondering about the EMLA patch. This is the first time I've heard of it. My dd had a horrible time with her blood draws, and no one mentioned this? What lab did you go to, and did it really help with your dd?

Thanks again!

Peggy

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Hi Peggy,

 

Our ped told us about them years ago...we used it when dd was 3 and she had a blood lead test. We ordered the patch online (didn't need a precription) and applied it before we brought her in for the blood draw. It has to be on the skin a certain amount of time (I think 1 hour?) for it to take effect. If you leave it on too long (more than a couple of hours?) you might get a little skin irritation/redness.

 

They also used them in the hospital (LPCH) on dd last March. In that situation, the hospital (or maybe it was the phlembotomist?) provided them.

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Hello

 

Have you thought of omega 3 for it's anti-inflammatory effects if your not already using it..here's a quick link

 

http://www.sciencedaily.com/releases/2006/...60404085719.htm

 

loads out there if u do a search.. everyone probably knows this already but thought it worth a mention.

 

We try and avoid omega 6 as there would appear to be more than sufficient in most diets and it has a pro-inflammatory effect and add in a good quality omega 3.

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Something you have to be careful with w/ all drugs is to be sure you're not overloading the liver or kidneys. Check with the doctor who should know which medications are cleared through which organ. If your child is already on a medication that is cleared by the kidneys, you may want to avoid more meds that are cleared by the kidneys, for instance.

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Yes, I was interested in trying Omega-3's as well. Unfortunately the pills were way too big and scary looking for dd. I bought a liquid version but that didn't fly either. I do try to buy products that have omega 3's in them (unfortunately dd hates fish) and have recently starting sneaking flax seed meal in to the kid's smoothies.

 

Re drug interactions...yes check with your doc in regards to other meds dd is on. I remember there was something about Ibuprofen and SSRI's but dd's psychiatrist wasn't worried about it and we encountered no problems. IMO, advil is pretty safe stuff esp. given at recommended doses...but it doesn't hurt to double check with your doc.

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Nordic Naturals make a children's fish oils DHA/higher then EPA 100% artic cod liver oil. They are tiny capsules . Flavored strawberry. I break them open and put them into my baby's milk. I am trying to help her with speech delays. My son has a hard time smelling them because of sensory issues though. These are very good for the brain. The exact kind were recommended by Dr. Murphy. Also she wanted us to use NAC http://www.americannutrition.com/store/NACpg.html and daily vitamins with B6. Also she suggested Coromega as a probiotic. She said Monolaurin was okay and Zinc. She suggested Augmentin or Omnicef during strep episodes for 3-4 weeks. She did not recommend long term prophylaxis. When he is worse to culture him and the household. She said tics are common and they do no harm, that kids outgrow immune deficiency and to use cognitive behavioral therapy. Hope this helps you.

 

We did do the diet GF CF diet for six months and I saw he was no better, attention was worse and the teacher started to bring it to my attention. I wish he would have made the progress. We tried everything from many supplements and , detox to restricted diet. I wish we had the success others here have found on the diet.

 

Michele

Yes, I was interested in trying Omega-3's as well. Unfortunately the pills were way too big and scary looking for dd. I bought a liquid version but that didn't fly either. I do try to buy products that have omega 3's in them (unfortunately dd hates fish) and have recently starting sneaking flax seed meal in to the kid's smoothies.

 

Re drug interactions...yes check with your doc in regards to other meds dd is on. I remember there was something about Ibuprofen and SSRI's but dd's psychiatrist wasn't worried about it and we encountered no problems. IMO, advil is pretty safe stuff esp. given at recommended doses...but it doesn't hurt to double check with your doc.

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Michele,

What was it about your sons raspy, hoarse voice that had Dr. Murphy concerned?

Have you tried the NAC?? Any success??

 

Also, I think you may be confusing the Coromega as probiotic....Coromega is Omega 3's......did she recommend a particular probiotic?

 

 

Thanks!

Kelly

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Yes you are right she did suggest Coremega as a fish oil. Some here have since said it contains some bad ingredients. I did use a box of it for him and it lasted a long time. You are right, I think the pharmacist suggested Culturelle which you could buy at the drug store as a probiotic. We did use it too for awhile. Plus I think she suggested using a probiotic like Natures Way primadophilus chewables in a flavor like cherry. Thanks for clarifying. I have used NAC and NAG for him and myself for my joints. I am planning to get the vitamin C chews today with vitamin D. I believe they are choc flavored. Since he is having a flare up I am going back to the supplements. I am sure it will be a long winter of illness and I need to get his immune system up. I will use the Monolaurin again also. Have you heard of the supplement EMPower plus fromTruehope.com. Another PANDAS mom felt it really helped her child. Also she used olive loaf extract. She told me Andrew is having sensory issues from his illness which are affecting him and that is causing him stress and thus the cracking. She suggested the sensory techniques such as brushing, compressing joints and swinging and jumping. Also she felt his voice was raspy and gruff. She said maybe he was struggling to get out the words/delivery. However I think that is just his voice and nothing ever came of it. I have never taken him to an ENT though to check either just the school specch path. checked him out. He was fine according to her.

 

Michele,

What was it about your sons raspy, hoarse voice that had Dr. Murphy concerned?

Have you tried the NAC?? Any success??

 

Also, I think you may be confusing the Coromega as probiotic....Coromega is Omega 3's......did she recommend a particular probiotic?

 

 

Thanks!

Kelly

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I think ibupfophen (in advil) can impact liver and have other side effect after long term, regular use, so do check with your doc on this

 

 

 

i believe my MIL was also told it weakened bone? but not sure on that

 

I see on drugs.com they also caution re heart etc

 

http://www.drugs.com/advil.html

 

I use it rarely but do find it relieves arthritis pain better for me than tylenol

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  • Help us learn if blood type has a correlation with PANDAS/PANS   33 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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