DS doing great!...visits with DOCS B and L

[Fixit]

I hope this doesn't undo where we are now..please cross your fingers as you read this!!!!

 

Well Ds is doing great…we ended a taper about 2 weeks ago and I would say he a solid 85% better, maybe more..95% …trying not to jump the gun.

I finally felt confident 2 weeks in, it was working…but we had the screech try to come back and a little accidents but was waking up and catching himself and changing underwear …so we added again the vanco and diflucan….accidents stopped immediately!!!

We did see some saw tooth even with the taper. He also has another loose tooth 2 days before end of taper.

 

On the last day..of taper it seemed like the motors were gone…still some vocals…not screech but raspberries…if motor ….sooooo subtle

Saw doc b day after taper ended..We were there for 2 hours and he only did one raspberry the whole time…..

 

Again…doc b is lovely…is ready for ivig when I am…wants ds on abx daily(scott only pulsed with 1 time a week at 500mg zith) doc b order 250 daily…

Doc b also wants to do allergy shots…still have questions and concerns…..as ds is not 100%...i am worried that allergies will just push on the gas peddle as we are still in coast mode(not in a good way…just the engine is running and we are sitting in neutral..with a slow roll….not engaged in drive..nor are the brakes firmly in place)

Doc b said dopamine1 is agonist and dopamine 2 is antagonist….can someone explain that???

 

The next day ds had some huffing…pushing air out…some head twist…(tried to console self as reading too much into it…I did see sawtooth to get to the point we were at)

So then we started the daily zith 2 days after seeing doc b..2-3 days later Monday 8/2…even better…motors really so minor and vocals almost gone!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

We see doc L on Tuesday 8/3..couple raspberries in morning…go to her office …I am almost concerned she won’t see anything…as it is so minimal now…and it is easy for ds to hold in..

Apt was at 2…she didn’t see us till 2;30..then she had a couple of calls that were 20 min each…then ds came in office at 3;30-4….she was great with him…as she stared at him..he did a couple jaw stretched he tried to mask into a yawn…and then when he walked down the hall he tilted he head 2 times…that was it….(so add in stress of waitng, tired, hungry, nerves.)he did great.

I told her I didn’t’ come last November when I did oringal camk test as ithought she wouldn’t believe me..she said at 105 he still had a dopamine 1….thats for the ticcers…the first 2 numbers she correlates with ocd…dopamines with tics(ds first 2 numbers on both draws were not elevated)..i expressed my concern about not leaving anyone out because the camk number is not “high enough”..i stated if it’s not normal…it’s not normal….she smiled.

We sat and were not sure what to do at this point…he was/is so good…..she said I could still see further recovery form the steroid up to a year out?!?!?!?....healing takes time!!!!!

She was adamant that 500mg zith once a week was not enough and would need to be on 250 mg daily till he is in his 20’s!!!!!!!!!!!!!!!!!!!!

She is also ready to do pex/phereis and I she even offered ivig if I wanted….if he relapse, we go!!

 

Am I being stupid for not doing something right now….waiting for a relapse?????

 

 

We discussed how the main docs on this just have different protocols…and she and I agree that there should not be a one size fits all protocol…some kids just need abx..some need pex..some ivig..some phesersis and steroids …and some, any combonation there of….

So that should make everyone feel good….at least doc L feels like we do!!!!

 

8/4/10 day after seeing doc L..best day ever since our onset 4/6/09…no vocals..loses that second that evening…1st molar

 

Next day another day of sawtooth…maybe it’s the lost tooth

 

Friday 8/6/10 call steph2 to update and ask about our office hours….she suggests that in the mean time I add back LDN as I took him off because of the taper…he was doing great…and I did see another improvement a couple of days after adding the zith and then I felt like we plateaued again…

So I did…next day was good..but we in car on final drive home to ga from va….tired blah blah…..

Sunday 8/8/10…no tics!!!!!!

Monday 8/9/10 first day of school …no tics!!!!!

Tuesday…some he twists at night..could be that moppy hair cut that all the boys have…and that Justin beaver twists his head….

Wed…..a couple twists….and one nod…triggering a tic???..scott smith says tics can become habits like the ocd can…some aurghs..playing x-box(some break throughs)…stops when he stops x-box(I only let them play 1 hour on wed, 1 hour sat and 1 on sun)

 

Things look good this moring, i didn't see anything…….no one would probably pick up on anything unless they are familiar with tics…so that is good…(maybe not even you guys).BUT I want it GONE!!!!!

Please pray,hope,good energy….that this sticks and I see the last little bit go away and continued healing….

 

Current protocol

Am

Azith 250 mg

Levoxly 25 mg

50 mg spironolactone

Buffered c 1000mg

1000 mg fish oil –equal epa/dha

PM

2 mg LDN

Probiotics….better absorbed at night when most digeestin happens

1000 mg borage

.5-1 mg melatonin depending..or none

[EAMom]

Wow! What great news!

 

 

What is LDN?

 

So, Dr. L. seems to have had a turnaround with Azith! That's good. (She used to be anti-azith.)

[Fixit]

Wow! What great news!

 

 

What is LDN?

 

So, Dr. L. seems to have had a turnaround with Azith! That's good. (She used to be anti-azith.)

 

Thank you Eamom!!!!!!

and as per something you said...i think kids should be on abx for awhile before doing a burst or a taper..

and thanks for your supportive words as always...

 

ldn is low dose naltrexone...originally designed for drug rehab/withdraw....there has been great results with it for MS!!! another auto immune disease.....stops it in its tracks...

 

i'm not too familiar with her prior thoughst on abx..did she only like aug....did she prescribe till children reached adulsthood prior.....

 

i thought she and doc k only liked azith and were neg on augmentin xr till worrieddad asked about it for his dd..(per saving sammy)

[thereishope]

Glad to hear things are going well! I have read LDN is good for Rheumatoid Arthritis as well. Mercola strongly suggests it for RA.I've posted questions for him about PANDAS/PITAND before and they either get deleted or avoided...

Edited August 12, 2010 by Vickie

[Phasmid]

YAY FIXIT! I guess you fixed it!!! I was wondering what was going on but didn't want to call. So happy he's doing so much better.

 

Mary

[Kayanne]

Fixit,

We were in Dr. L's office at the same time....small world. Was your son sitting on the floor? If that was him, he is really cute--gave me a few good smiles!

 

EAMom,

Dr. L suggested azith to us the last 3 times we have spoken to her...but when I tell her my location (4 hours west of Pittsburgh area), she always agrees with my concern about the resistant strains of strep...I also get the impression that with her all cards are on the table, and that she will do whatever it takes.

[EAMom]

I think Dr. K. likes reg. Augmentin (not XR).

 

This thread (from a while ago) is why I got it stuck in my head that Dr. L. is anti-Azith. http://www.latitudes.org/forums/index.php?showtopic=5046&pid=35503&start=&st=#entry35503 But, obviously she rx's it! Nobody at the time, really knew why she said "no child should be on Azith.".

[EAMom]

Glad to hear things are going well! I have read LDN is good for Rheumatoid Arthritis as well. Mercola strongly suggests it for RA.I've posted questions for him about PANDAS/PITAND before and they either get deleted or avoided...

 

Who's Mercola? (And how dare he delete your questions!)

[peglem]

Fixit, on the LDN- are you doing the cream/lotion (whatever it is that you do on the skin) or oral administration? We did a couple of months of LDN last summer, but stopped when the strep came back (we were on a lower dose of abx back then). We were actually prescribed through the psychiatrist, but she had not used it before and is not familiar w/ using the low dose. I think I saw some good things, but w/ all the other things we were trying- I wanted to avoid other variables. Nobody seems to know how it would affect the immune system of someone who is getting monthly IVIG...

[Kayanne]

Glad to hear things are going well! I have read LDN is good for Rheumatoid Arthritis as well. Mercola strongly suggests it for RA.I've posted questions for him about PANDAS/PITAND before and they either get deleted or avoided...

 

Who's Mercola? (And how dare he delete your questions!)

Dr. Mercola has his own health website, and he sends out email updates...I still get them in my inbox, but I stopped reading them....it is typical sales tactics...create a health crisis, and then at the end...WOW, I just happen to sell the BEST product out there for this...LOL! Agree with him or not on some of his stances...I don't think he will address PANDAS because he doesn't have the PERFECT product for treating it...in fact he is pretty anti-antibiotics.

[thereishope]

I read his facebook page. He doesn't "do" PANDAS probably because, like Kayanne said, you need antibiotics and he doesn't want to endorse antibiotic use. I'm the lone one that will comment....if you have an infection, put your child on an antibiotic. However...when I do reference PANDAS/PITAND to a status update of his, I usually get a couple "likes" from fans. So, there are people out there who would want to learn more!

[Fixit]

Glad to hear things are going well! I have read LDN is good for Rheumatoid Arthritis as well. Mercola strongly suggests it for RA.I've posted questions for him about PANDAS/PITAND before and they either get deleted or avoided...

 

I'vs also seen stuff with ldn and crohn's!!!!

[melanie]

Thrilled sounds like you have got a handle of this.I know how good it feels when things are good.He deserves to be well.Hope and pray its over,finally over!!!Keep posting

 

Melanie

[Fixit]

Fixit,

We were in Dr. L's office at the same time....small world. Was your son sitting on the floor? If that was him, he is really cute--gave me a few good smiles!

 

EAMom,

Dr. L suggested azith to us the last 3 times we have spoken to her...but when I tell her my location (4 hours west of Pittsburgh area), she always agrees with my concern about the resistant strains of strep...I also get the impression that with her all cards are on the table, and that she will do whatever it takes.

 

NO WAY!!!!!...yes that was him on the floor...bored to tears...but being so good with his silly putty..and thank you...i think he is really cute too!!!! and has a nice smile!!!!

 

that was me checking up on him..(i didn't take him in as there was so much and i think it gets to him).as doc L took anohter long phone call...not mad...so glad she didn't just up and quit.....but i think at least one call was about some of the sad stuff she's had to deal with..

then that was my 75 year old aunt who came in with my 3 and 7 year old....as they were waiting in the car...i figured 1 , hour and 1/2 movie should cover the time i needed, but stuff happens

 

i agree with your statement

[Fixit]

YAY FIXIT! I guess you fixed it!!! I was wondering what was going on but didn't want to call. So happy he's doing so much better.

 

Mary

 

Thanks...i hope you are right...still a couple of air pushes(out of his lungs)..right now as he got off the bus...and asking how he can earn a dollar.

am i asking too much for all of it to be gone 2 weeks after a steriod taper????

 

HOw is your guuy doing now that the taper is done??????