Am i missing something, need affirmation?.

[Fixit]

I need some hand holding…again. This is a long one if you can take reading all of it.

Any thoughts, even if not popular, are welcome. We are all on a journey.

 

Lets start with easy/good stuff.

 

DS4…still in remission?….still has tag and sock issues…but that has been as long as I can remember.

He was 75%tile in height until 1 ½, when he brought home myco p from day care and that is the exact time ds12 started this 3 year journey.(ds12 typical panda till that time…tics/abx/remission about 12 times)

Ds4 was on abx and steroids at that time for a couple months, that was 3 years ago.

We are working on his height since he had dropped below the 25th %; nystatin gave him a good growth spurt and armor for low t3.

We are reevaluating another round of nystatin.

 

Ds 9 was exposed to strep, the mom let me know as a heads up, thankfully. 3 days later ds9 says mom my tics are back….started on zith and tics gone in a couple days…ran a full 2 week course of zith.

His tic either looks like a guy is going to blow a trumpet, or like a kissy face.

2 weeks post stopping zith tics came back. We started amox and again tics gone in a week, ran the full course as usual. 2 weeks after stopping, tics have now returned. Restarted amox a couple days ago…tics are almost gone again and we will run it for a full month this time. So, on the bright side he is in remission while on abx?

 

Here we Go…..DS12 (b-day Feb 2012).

As mentioned we have dealt with pandas since age 3.

I was fortune until 9, to get complete remission.

DS has horrible allergies and we started shots 9/2010 with dr b in ct, at a super low dose. We hope to be on maintence in about a month.

DS prior streps would all be during the school yr, exempt one summer episode.

But his allergy symptoms were debilitating by the end of Feb. every year of his life. I think he would always get another infection in March because of the constant head congestion just letting things fester.

 

Though I was aware of my ds strep/tic correlation by the time he was 3, I didnt find pandas until he was 5. Prior to 5 I investigated allergies. I had heard, and I had seen DR Rapp on a TV show…dont remember which one. I knew that my ds could fit into this correlation between allergies and his tics.

Dr Bradstreet has a blog and he shows how Rapp correlates allergens very similarly the way that strep reacts in certain kids (pandas like)

Here is the link

http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/

 

 

Besides the weekly allergy shots..ds is on singulair 5mg.

He is 100lbs

According to ds, his tics are going up about a ½ every 2-3 days.

Pollen count for Atlanta area is as follows, todays 2979

F27th 25 F28th 4 F29th 9 M1st 67 M2 102 M3 64

M4 33 M5 104 M6 40 M7 54 M8 67 M9 115 M10 51

M11 79 M12 142 M13 98 M14 209 M15 552 M16th 2979

 

 

 

I gave him allermax today.

Should I up the sing to 10mg

I cant keep him in a bubble…or can i.

 

 

To correct myself his 1st molar is NOT all the way in…another 33-25% to go

2nd molar 20% out.

One of my Dans says this is definitely an open source of infection.

 

Here is his current list of meds..

Dan just added AMox and flucozle for one week , as of yesterday, to address mouth bacteria.

 

Azith 250 mg

Doxy 200mg

Levox 25 mcg

Tagament 800mg (secondary use, anti-inflammatory/allergies?)

Singulair 5mg

 

Rotating every other week

 

Bactrim ss tab bid

Flagly 250 mg

 

Really concerned about ds gut. Though no known issues as of yet.

I give a 5 bill pearl in a.m. with abxs

And then a pearl and another 50-70 bill of probis at bedtime.

 

Yes at one point band 39 ind

Many months later, just trying to rule out lymes, 2 out of 3 dot blots positive

Months later he got an 80 on IFA B burgdorferi …… =or > 80 positive…so I guess he is/was pos

Cd57 was 16 last year when he was 11

 

Myco p iggs always in pos range…igm in normal range

 

We started azith 8 weeks ago…he was just on doxy and flag every other week

Then added Bactrim the week before last….this is his 2nd bactrim week.

 

 

What am I not thinking of????????????????????????????

Tagament gave him a nice softening and when we doubled it was even better.

We had a nice improvement just on doxy after about 14 weeks…once last summer that lasted about a month(90-95% or better) before he got a salavery glad infection (from fixing a cavity)….and another few weeks in January before molars started(same thing 90%ish).

 

Any thoughts on it being herxing?

Any thoughts on controlling allergies?...I mean really what else can I do.

Thoughts on the molars?

Ive been trying to maintain BBB with turmeric and garlic.

 

He had pex late summer after back to back salivary infections (dont know if a week or 2 post abx was enough time to do pex) pex made things worse.

Started doxy about 10 weeks post pex, at the beginning of October 2011.

Did not get better till 12-14 weeks of doxy…if pex helped I cant necessarily correlate it.

 

If I am treating lymes/myco p, I am expecting too much at 5 months into it.

We did solely doxy till late Nov/ December when we added flagyl every other week.

End of Dec added Tag

Beginning of Jan added zith

Feb upped tag

1st week of March added Bactrim every other week

His eyes are mostly always dilated.

 

Cigna covers pex for pandas, not ivig.

Should I do at least 1 ivig?

He is 12, and thinking I might have to pay out of pocket.

I hear ivig is only temporary fix until next exposure?

Does ivig help with allergies?

I mean if it helps that, allergies are a huge part of ds problems.

 

Im running out of fight. I am tired of being sad and worried. I want to be done.

 

Ds tics were 6 yesterday and his tics are a 6 ½ today.(they might even be worse then that)

It pains me so much to see him this way. His tics are like full body convulsions. Kinda start at his hips and roll out to a full head whip, gapeing his jaw.

I see people stare at him when we go out. And they wonder what i wrong with him.

He is so normal to me and the tics are only something interrupt the moments of him being NORMAL.

Of course there is physical pain as well.

 

Thanks for reading this.

Edited March 16, 2012 by Fixit

[smartyjones]

oh fixit -- you're making my head spin -- i'm sorry!!

i don't want to send you in any wrong directions -- have you investigated viruses? have you discussed with your DAN that angle? i think that has been a big component for us.

[patric]

Hi fixit,

I am so sorry to hear of all of your trouble. I can only answer from my own experience which is to get the ivig and pay out of pocket if you have to. I know others may disagree, but it made a world of difference for my son! He no longer tics, or has any other pandas symptoms unless followed by an illness. But that can be treated and is never as bad as before ivig. In my understanding, the younger they are the better, so that is why I would do it sooner than later. It completely transformed my son from having almost constant tics, rage, separation anxiety to where he wouldn't leave our side, to a completely "normal" happy and healthy 8 year old. I feel like I am always posting about this, but it really has made a tremendous improvement and has given us our son and our lives back.

I wish you all the best! My thoughts are with you and your family!

[trggirl]

I would be looking at the Singulair first. There have been reports that it causes tics.

 

 

Thanks for posting Patric. I always like to hear people's success stories.

Edited March 16, 2012 by Trg girl

[Fixit]

Thanks for all the replies.

 

Thanks for saying Im a good mom. I know it sounds silly but those kind words do reach across the internet. I am not fishing for a compliment right now, but in truth, I feel like a failure. I hear of others getting their kids to recovery and I am still trying to find my kids locker combination. And now I feel like a complete moron after reading about singulair. I did look up the side effects and neuropathy didnt come up. I keep an eye out for depression and rages. One of my DANS was the first to suggest singulair, followed by my immunos advise, both of my neuros know about it. Can someone please come here and kick me!!!!! If it is from the singulair, will it resolve……being hes 12???? I do believe there can be side effects not listed. My thyroid gets affected by drugs that say they do not affect thyroid.

Ds has been on singulair for more than a year as his allergies are so bad, and we had tried everything. I do think the allergy shots have helped, since he would be almost non-functional by now.

I was only giving him ½ a pill for a while, but since allergy season is here I was giving him the whole thing, 5 mg.

Do I have to wean him off…1/2 pill for a week or so…I WANT to stop singulair today.

 

I will up the allermax and add more quercitin…as I think the allergy shots have us in an ok place.

 

 

We need to check his liver enzymes soon and will be checking the MTHFR gene.

 

He is on a multi…I used to do separately…but after seeing lyme dr in md…he suggested 1 multi vitamin so he can cut down from 30 pills or more a day to 25ish????

I wonder since its one multi if I should supplement with more b6 b5 b1 again…..

 

I have ds taking idebedone/ubiquinol, and D3.

 

After reading the great article someone posted about GABA, I thought we should give it a try. I found this product and thought it had a good combo of things and the Bs that ds would normally take.

http://www.iherb.com/Rainbow-Light-Busy-Brain-Release-60-Mini-Tabs/29974?at=0

my dan thought it looked pretty good

I tried it first, Wednesdayish. It is nice.

So I started ds on it Thursday….I dont think this has anything to do with anything…as his tics have been increasing like I said and I started to write my post prior to ds coming home.

 

When I can fit it in during the school week (ds is gone from 8 am to 5pm with just school, no activities) I give burbur, or thistle (I know it is a ragweed, but wonder if it helps like a sublingual would, cant say things are worse when I do give)

On the weekends I try to get either activated charcoal, bentonite clay or a drawing formula in for detox. After a big argument I can get him into a mag/baking soda/apple cider (for the last 10 minutes) bath once a week.

 

I just looked my washer and the soap dispenser does need to be cleaned which I thought of before Christmas but never did. And in our bathroom I see a weird line of mildew way up high, in a small vaulted area.

 

Thanks for letting me know that Im probably a juvenile on the lymes path, and need patience.

 

But now I am so worried about the singulair. Does anyone know if I am seeing something from it, if, when it clears out of his system?????

I guess I will never know if singulair was ever a culprit, as he has so many other triggers going on.

 

Found this on singulair…read the last of the set of 3 under this heading…it sounds like DS. One of his tics is always head involved.

Would you recommend a doctor for tic disorder?

Oct 2010

http://parents.berkeley.edu/advice/worries/tic.html

 

Does anyone have personal experience with singulair and tics and the tics getting better once stopping singulair?

 

If it is neuropathic, what can be done about that? Anyone have thoughts?

Sptcmom, do you have anything or suggestions that would help with neuropathy?

Also thanks for the confirmation on Bradstreet. I went to FL to his office years ago. Now that he is very close to me in GA, I have an appointment for the end of next month.

 

Regarding DS4….someone mentioned lack of growth due to lymes? I guess that could be. I was contributing lack of growth to the steroids he was on that then affected him somehow and maybe gave him yeast.

Now DH has had so many tic bites as kid he cant remember. I wonder if he passed it to me and I gave it to the kids. DH has not been checked for lymes. He does tic, but since long term abx, and tonsils out last year, he has been strep free for over a year!!!!! He cant remember not having strep at least 3-4 times a year, all his life. On a side note…dh went to doc last week for bronchial infection…dr said dont take abx script Im giving you,,,only if you feel you really need to fill it…but here is cortisol shot???? I wasnt there when it happened…on good note…he is almost tic free, if any…..!!!!!!!

I dont have high hopes and expecting a rebound.(dh are tics fairly mild)

 

Sorry if I ramble…once my mind settles down on one kid, it jumps to what I need to do for the next.

I love this board and all of our healthy discussions!!!

Edited March 17, 2012 by Fixit

[trggirl]

Fixit, please don't beat yourself up. We are all learning and figuring things out or we would not be here. And it may not be the Singulair. It's just one to look at. No personal experience using it. Hopefully someone will post.

 

I did want to comment on the multi as well as the product from iherb you posted about. And please understand we are struggling pretty hard ourselves so I really don't feel comfortable telling anyone else what to do because I sure don't have it figured out. BUT, from our past experience and having a ticcer myself, my daughter has never done well on a basic multi. Not only do they increase her tics, they also change her personality. So for what it's worth, I would probably stay away from the combination products and just try one ingredient at a time. We are in the process of doing that right now and it is amazing how the different B vitamins effect my daughter in different ways. She just can't tolerate some of them.

 

Hugs

[Fixit]

Fixit, please don't beat yourself up. We are all learning and figuring things out or we would not be here. And it may not be the Singulair. It's just one to look at. No personal experience using it. Hopefully someone will post.

 

I did want to comment on the multi as well as the product from iherb you posted about. And please understand we are struggling pretty hard ourselves so I really don't feel comfortable telling anyone else what to do because I sure don't have it figured out. BUT, from our past experience and having a ticcer myself, my daughter has never done well on a basic multi. Not only do they increase her tics, they also change her personality. So for what it's worth, I would probably stay away from the combination products and just try one ingredient at a time. We are in the process of doing that right now and it is amazing how the different B vitamins effect my daughter in different ways. She just can't tolerate some of them.

 

Hugs

 

Thanks that is a good thought and may i should go back to individual supplements...the thought of that makes me more comfortable.

I am trying not to worry about the singulair, and i very much appreciate you and others bringing to my attention.

[bulldog24]

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.

[bulldog24]

also if your dh has bronchitis, your son could be reacting to that. I am hoping he didnt listen to the doc and took the abx. In my opinion its not likely your hubby gave your kids lyme, If you have lyme it could be passed thru placenta. You dont need to remember the tick bite or get a rash I didnt. I sure hope you get tested, but dont forget you all are together and exposed to ther same stuff like ticks,

[dcmom]

Hey Fixit-

 

Sorry I have been meaning to post.

 

I will just give you my opinion, from what we have done/ dealt with.

 

I can really comment on the pandas, only. My kids did have some positivity on a lyme antibody test- but at this point we have chosen to believe this was either a past infection or a false positive. (thank you- but I am not interested in commentary on the moment on this, only sharing for Fixit's sake).

 

My kids are relatively reactive to illness or illness exposure. We don't have seasonal allergies- however I know they can be triggering.

 

From my perspective what you are missing, is what has been the key to our staying stable the last year plus....

 

Steroids and Ibuprofen.

 

My kids overcome illness very typically. What happens then, however, is autoimmunity is triggered. We see remission when we knock out this autoimmunity with immune modulation/ anti inflammatory. We usually try 5 days of fever-type advil dosing. If this does not work we move to steroids. During this school year, each child has had to do steroids once, after a virus. We DO NOT see improvement without one of these treatments.

 

I don't know if this is really helping you, because I know that most llmd's will say steroids are contra-indicated in lyme, I don't know how much literature there is on that, however I do think it is worth investigating the possibility of this type of treatment if your child is in crisis.

 

My kids are ocd, not tics.

[philamom]

dcmom- do you use the adult dose when giving advil, or do you purchase the junior strength pills?

 

fixit- thinking of you!!!

[dcmom]

Philamom-

 

My kids are 8 and 11 (almost 50, and almost 90 lbs). I give them both the same dosage (probably need to check to see if the older can get more) which is one tablet (200mg) every 4 to 6 hours. Usually I end up dosing 3x per day for a flare up (breakfast, after school with a snack, and bed time). If the flare seems serious enough, I do this for 4 days, and then taper, another 2-3 days on 2 doses per day (morning and night) and another 2-3 days on morning only.

 

This has worked for us really well this year. In the past, I did not feel it worked. The key, I am thinking, is to hit any flare up immediately- that once the "horse is out of the barn" the advil won't get it back in, but can slow or stop any worsening. This has worked 3 times for each this school year. Once for each we had to then proceed to steroids- which, thankfully, worked.

 

I do think that there are larger doses that kids can take, maybe once, or for a day or two- but I would certainly consult a doctor for that.

[philamom]

Philamom-

 

My kids are 8 and 11 (almost 50, and almost 90 lbs). I give them both the same dosage (probably need to check to see if the older can get more) which is one tablet (200mg) every 4 to 6 hours. Usually I end up dosing 3x per day for a flare up (breakfast, after school with a snack, and bed time). If the flare seems serious enough, I do this for 4 days, and then taper, another 2-3 days on 2 doses per day (morning and night) and another 2-3 days on morning only.

 

This has worked for us really well this year. In the past, I did not feel it worked. The key, I am thinking, is to hit any flare up immediately- that once the "horse is out of the barn" the advil won't get it back in, but can slow or stop any worsening. This has worked 3 times for each this school year. Once for each we had to then proceed to steroids- which, thankfully, worked.

 

I do think that there are larger doses that kids can take, maybe once, or for a day or two- but I would certainly consult a doctor for that.

Do you have a preference to Advil? or do you mean Ibuprofen in general? Thx

[dcmom]

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

[Fixit]

Thanks dc and philamom,

 

I never say never to anything. After all the Drs that said what i had seen was coincidental 15 times, i can't dismiss any possible thoughts for the future.

With the burst we had a rebound

He does respond beautifull to tapers, to 95% for a few weeks...but things did come back slowly. I know 1 time when ds was 5 he received a steroid for strep wouldn't go away. We had to carry him to the er as his body was in such pain. BUt his tics and pain stopped when with the steroid and a higher, new abx

If DS did climb to above an 8 for more than a week, i think i would have thrown a steroid at him, just out of the humanity of it and so i wouldn't go insane.

 

I did cut the singulair to 1/2 for the last 2 days and i didn't give him any today.

 

So...i thought things seemed a little better.

But as some of you may know, you see one thing, the child feels another. And that can be in either direction.

I just asked him if he had a number for me....he said yah..6, no 5, no really maybe 4-4 1/2.

I thought things did have a pretty good betterment.

i asked him again, are you sure. Do you want to stick with a 5 to be safe...he said no mom, 4!!!!!!

 

He said things feel weird at school?????????????????????????????????????????????????????????????????

WHAT do i do with THAT peice of information???????

Do you think they don't keep the pollen out as well as i do?

THey don't clean as well as i do ?

MOld, other kids with illnesses, cleaning supplies?

What?

 

Do you think it could just be that the singulair is coming out of his system and he is just correlating it to when he was in school?

Do you think it is peer presure? 12yr old stresses?

He says things are just better at home.(but he loves school!!!)

 

I am not happy with 4,(i would say 5 1/2-6 at least) but it is better than 8. We have seen in the last 12 months 1 and 2s for periods of time.

I don't think i can home school...i can't even pretend i can think about that....OMG...but what a waist of possible recovery if i could possibly do that!!!

 

I just started some advil to see if i can get a little more out of what ever is happening. i gave a 100lb kid 2-200mg tabs....i think you can do this for 3 days?????

 

But if back to lyme thinking...we stopped bactrim on sat and started back to flaygl on Sunday..rotating the 2 every other week....idk

 

 

THey were off from school today.

So i guess we will see what tomorrow and the rest of the week brings..

i guess i should also call the school to see if any strep, mono, myco p kids were out of school.

 

on another note,

Not sure if anyone saw the news....Atlanta hit a record breaking high pollen count of 8164!!!!!!!crazy!!!!