Am i missing something, need affirmation?.

[philamom]

I buy advil- not sure why- but I really mean it interchangeably with ibuprofen....

The reason I ask, whenever I give my daughter (10) a Motrin tablet (200mg) she fares well, but not so good when I give her a Junior Strength Advil "ages 6-11' tablet. Well, I just looked at the bottle and the junior strength advil is only 100mg - so now it make's sense.

For some reason, Advil works better on myself.

 

Thanks.

[Fixit]

hi. I am so sorry. I can hear the worry in your words.

 

first thing I noticed is you are giving probiotics with abx. Thats not going to work. When given at the same time the abx kill the probiotics so you are just wasting it really. give them spaced out 2 hours. I dont think thats causing the tics or anything.

 

but having chronic lyme myself- I bet he is herxing. You just started doxy right? in my experience I start herxing days 3-10 on it. remember herxing causes neurotoxins and makes symptoms worse. I dont know much about allergies, or singulair.

 

I would put my money on a herx. It SHOULD calm down.

I have been treating lyme 5 years, so you should prepare yourself for the long haul

herxing can happen anytime you change or increase abx. Also lyme cycle is monthly. A lot of lyme patients have flare ups monthly.

 

I know thats hard to hear, but you are a good mom and you are NOT ALONE! there are 2 products that might help. they are made by nutramedix I believe, parsley and burbur drops. they are supposed to help clean up the toxins and help with herx.

 

You might be able to buy them online, but certainly talk to his doctor.

 

Thanks bulldog..i didn't mean to leave anyone out....

I will try to keep better notes on any cycles...i havent been able really find a pattern, yet, ....but honestly, after 3 years of hard core, research, notes 3 to 4 times a day etc and still ney saying docs, traveling the country with 1 to 3 kids to have docs i can work with....and then the younger ones coming into panda dx...i'm just burnt....i am trying to reorganize and get ready for the battle again, no matter what i am fighting or searching for.

 

I do have an herbal blend of parsely and garlic combined. i may have to research why i bought that...

I have so many supplements, i let other parents try what i have to see if they might find benefit for themselves or their kids(stress, add, allergies) i'm alsmot ready to open my own herbal store

 

5 YEARS!!!!!! If that is what it takes...as long as i can continue to see improvement.

I would like to pick your brain some time.

 

On a good note..today is an o.k. day...so that is a little relieving.

Edited March 19, 2012 by Fixit

[P_Mom]

Hi Fixit!

 

personally, I would stop the allergy shots. I am not sure what your doc, or any doc says, but, the jury is still out on all factors at play in PANDAS. You have seen improvement with abx...you have seen improvement with steroids....these are anti-inflammatory and immune modulators. Allergy shots are constantly stimulating his immune system, regardless of the low dose......immune stimulation is what we need to avoid. My ticcer son is 12 also. He is a major allergy kid. His blood allergy tests revealed he was allergic to EVERYTHING they tested for.....save one strain of mold. I mean everything....I think there must have been 50 or more things on that test. We control his allergies with Claritin ....or sometimes zyrtec...and nasonex. He does fine on these and it controls his stuffiness...especially the nasonex.....that has been great for him. I, personally, would be way, way too afraid to do allergy shots on him....no matter what the doc said. No immune stimulation thank you....and I am sure you know that allergies are essentially an autoimmune disorder.......so why shoot these kids up with allergens and stimulate/provoke their immune dysfunction? I know, I know....it is supposed to be helpful for them in the long run....however, our kids are not the norm and should be treated differently. Just my opinion. Best wishes!

[EAMom]

Dr. Murphy (at the IOCDF conf) said Singulair has been linked with ocd...another reason to stay away from it.

 

How about flonase (steroid inhaler)?

 

Also, xlear is good for sinus problems.

[Fixit]

Hey P.MoM.. I am so glad things are still going so well and under control for you. I'm not sure if you had been around as i took a long break from the site. I needed to step away. And luckily we had some really great times, some downward spirals, some pretty good times again and more spirals.

 

Yah...idk know about the shots.

heres the thing...he is about 4-6 weeks(i hope) from maintainence. it would almost seem like not taking the last class to graduate from college. I can't say i've ever noticed a flare from the shots. Trust me i was Freaking out at actually thinking i might do this to him. I spoke with momMD(not mdmom, 2 different people) about her child's terrible reaction to them. She too consulted with some of the top panda drs before doing it.(as did i). He had be tested 2 seperate times a couple years apart by 2 different drs. the 1st one was not aware of pandas. Anyway, both upon doing the skin pricks did not wait longer than couple minutes(as opposed the standard 15-20 minutes) to give some type of benedryl to ease his instant swelling, and reactions. the drs were shocked at his system

 

Ds was in an ok state at time of first shots and i might almost say, but can't promise, that he almost seemed a smidge better 24 hrs after getting the 1st couple shots.

NOw as the doses are getting higher, i wonder if you could be right. That the concentration is too much, we have to split a particular shot into 2, so that is 4 shots all together because of the swelling. even though we back down a dose sometimes because of his reaction..

 

the last couple of days he does seem a little better.???? Could that be from backng down the singulair and then coming off it completely, dr said it will take a week to leave his system, as it takes a week to build up.

maybe i'm not getting the full bang out of coming off, as we had another breaking day for pollen of 9000plus.

I am also doing some advil with him for a couple days to get as much as i can out of this betterment.

 

We go for another shot tomorrow..i wonder if the weekend will be worse? Or as the count comes down, better?

 

I also added in the last week, the busy brain formula, with gaba and theanine..i tried it first as usual, and it does take the edge off w/o sleepiness, and i actually feel more clear, as i am not worried that i am not worrying enough

 

Oh and ds just said he has another loose tooth,,so that, plus 2 molars that don't want to seem to completely come out.

 

 

So after that long dissertation...,sorry...how are your sons allergies doing? Is he symptom free. Or at least he is not having a "flare" from the pollen?

This is the first year DS can see, breath, not choke, stay upright and walk, during allergy season...really so great..only the last 3 days, with the unpresidented pollen counts, did he have itchy eyes one day, and 2 days of a little snot.

Last couple of days i did have him do a nasal rinse with distilled water and a rinse i got from the herbal store