Dr.s still not believing Abx have done something

[LindaMW]

Well it has been 8 months that we have been on this ###### of a roller coaster ride. My son did a 60 day course of abx in March and April and May and was 100% improved but the doctors still are not believing that had anything to do with it. One exception being our psychiatrist who does see the difference and agrees with us.

 

Today we had our regular 10 year check up but we followed up on this with the pedi. This pedi believes in PANDAS but will not give anything to treat it unless there is an active infection. One thing he did tell me and this was the first I heard this, he feels these children already have the tendency to have OCD and that the strep triggers it to become active. From everything I read I have not seen that. If anything I understood it to been the bodies reaction to the strep and OCD was the symptom because that was the part of the brain that was being attact. Am I not understanding something? Has anyone else been told this?

 

Now that it has been about a month since he has been off the abx, I have seen some OCD and aggitation coming back. It has not been too bad, but it is there and my son admitted he has been feeling it too. Again, where do we go with this? The psych feels he does not need to see him because we got our answer with the abx.

 

One thing that I felt was huge in improvement was when my son told me his brain did not feel BLAH anymore. That in its self says so much and the psych agreed. But when I mention it to the pedi they don't seem too impressed.

 

By the way, Pittsburgh sucks when it comes to understanding this. So much for our wonderful city being tops in the medical field.

 

 

Linda

[peglem]

The "old school" thinking on tourettes syndrome and OCD is that they are conditions that are exacerbated by stress and illness. It sounds like that is what your pedi thinks as well.

 

Would your psychiatrist be willing to rx abx?

[Dedee]

Your best bet is to stop messing around with trying to convince your doctor and go see a PANDAS specialist. I spent to much valuable energy trying to "convert" non-believers. My experience has been to put that energy into a travel plan and go see someone who knows what they are talking about. There are several great specialist so hopefully you wont have to travel far. Get your antibiotics no matter what you have to do. You know what is best for your child.......You are his Mother......Don't let any Doctor try to convince you otherwise. If your physician doesn't listen to you as the "expert" on your child then you are seeing the wrong physician. Keep up the good fight. It's worth it!

 

Dedee

[LindaMW]

My husband and I thought the same thing about the psych prescribing abx, why not? That is something we want to talk about with him. Unfortunately our next apt w/him is the end of July.

 

I also said that our next stop was out of state to one of the drs listed that support this, especially since we saw results w/abx.

 

I am still amazed how they just do not see it. What is so hard for the medical world to figure out? They can figure our cancer and all those other horrible illnesess, but they can't understand streph? Meanwhile there is rheumatic fever, st. vitus dance all brought on by streph.

 

Thanks for your replies,

Linda

[EmilyK]

Your situation sounds like ours. It is frustrating. I'm on a wait list with one PANDAS specialist and booked for Sept. with another but I want to get my ds to someone now rather than have him start another school year in distress. At least summer vacation has started so I'm hoping that stress relief will be a little help. Hang in there and trust your instincts.

Emily

[cobbiemommy]

My husband and I thought the same thing about the psych prescribing abx, why not? That is something we want to talk about with him. Unfortunately our next apt w/him is the end of July.

 

I also said that our next stop was out of state to one of the drs listed that support this, especially since we saw results w/abx.

 

I am still amazed how they just do not see it. What is so hard for the medical world to figure out? They can figure our cancer and all those other horrible illnesess, but they can't understand streph? Meanwhile there is rheumatic fever, st. vitus dance all brought on by streph.

 

Thanks for your replies,

Linda

Try to call the doctor and ask for a refill prescription for the antibiotics. State your case, remind them that it worked before and you see the symptoms building again since your child has been off abx. The most the doc can say is no. Meanwhile, get to an expert who really "gets it".

[Ozimum]

Hi,

So feel for you and your DS. My son and I have a code for when he begins to flare...on a scale of 1-10 and 1/2 to 1 is reasonably normal, if he gets to 2 or 3 we're off asap to our integrative doctor who is our local backup for our busy DAN! dr. Both doctors understand that we need to head off the autoimmune part of this and will prescribe an antibiotic. Thankfully DS manages with one or two courses and he's more or less back to baseline. We now have a presciption at hand at all times just in case. Meanwhile we are pulling out all stops to get him as healthy as we can and have been through the gammut of a gut healing diet and supps - he's doing well, but the real test now is getting through the upcoming strep season here.

If I were you I'd be getting the earliest possible appointment with a PANDAS dr, as well as trying to find an integrative dr near you who will help. Be prepared to shop around. I had to change our family dr and actually interviewed the dr we see now to make sure he was on the right wave length. Good luck!

[ptcgirl]

We all know and can relate to how frustrating it is. Sounds like u r on the right track getting to a PANDAS/PANS dr ASAP. Good luck and remember you r not alone.

[tpotter]

I totally agree with you getting to a PANDAS specialist ASAP. Realize that you may convince your dr otherwise, but s/he is also under pressure from the AAP to NOT prescribe abx.

 

That being said, I would suggest that you print out copies of the Columbia (2010) mouse study, and the Tel Aviv (2012) rat study. Both show that strep antibodies (not just the strep itself) causes OCD and tics. The Tel Aviv study demonstrates behavioral, pharmacological and immunological abnormalities to strep.

 

Finally, you can also give tell him that Dr. Murphy is starting an abx trial (using azith specifically), and that there is an ongoing IVIg study with the NIMH/Yale.

 

He may not admit to you that he "gets it", but the fact that he treated your child this long is really quite a big deal, because it took us 4 years to even get a dx (despite suspecting something of the sort was going on), and then DS only got abx sporadically for the next year from a supposed PANDAS specialist until we finally got to several great docs.

 

I agree that it is quite absurd that these top medical places around the country just refuse to accept, but now it's time to just move on.

[LindaMW]

Thanks for all your help and advice everyone.

 

I have been working on improving his diet, with probiotics and yogurt daily, fruits, veggies, dark green leafy salads and protein. Plus he is taking a multivitamin and omega 3 daily. Two of the drs recently told me they don't know if the probiotics are really all they say they are. Why do the want to discourage and say that, when I have read numerous articles about the positive affects of probiotics. We are stil doing them and eating the yogurt, it cannot hurt.

 

I forgot we also have an apoinment with a developmental pedi that the psych recommended coming up. I am going to see where that will lead and see if she will help, if not then I will seek out of state help.

 

Like EmilyK said, it is summer and I want to get this controlled before the stress of a new school year starts. He missed two months of school this past year until he got the abx. I do not want that to happen again. Plus the fear of a new school year and all the germs that come with it.

 

Linda

[peglem]

You might want to go ahead and get an appointment with a PANDAS doc- most are booked months out. You can always cancel it if you feel you don't need it as the date approaches. But, if it turns out you do need it, you won't want to wait another couple months to finally get there.

[Fixit]

OH PLEASE..Do NOt Get Me Started!

Peglem is right.

So when i told them i can see what is triggering the "TS" i was told,,,,these are the words the dr used, and i can feel the steam coming out of my ears now..."he could have just as well had pizza the same 3 times"..(i figured out the tic/strep correlation by the 3rd go round..as ds would be 100% tic free after 10 day course of abx)

 

I am trying to stop myself from going on with the above story.

But my new line to dr's is something like

if you are so smart to get your phd, why aren't you smart enough to listen to someone who is actually witnessing what is happening?

that is why drugs get put on and taken off the market...patient info and response(sometimes unexpected reactions) to medication !!!! i personally had nothing to loose by telling him this since they will not help anyway. Pans is getting wings and i still tell drs our story wether they believe me or not in hopes that it might be the one to change their narrow thinking.(ps they are just cattle, they are not researchers as we parents are...they are regurgitators, drinking the cool-aide, just spewing out info that they are allowed to say. and are not allowed to listen to mere personal experiences, unless you are in a focus group....that is the only time your experience/information is real to them)

 

Seriously, i am really trying not to go on and on about how stupid many drs actually are(in all fields, not just pans).

 

Now, to what is working for my ds9. DS12 still in 3yrs flare. DS4 in remission, other than why is he still not growing, and it might be related to pans..idk

Anyway, since he is 9 going on 10, i feel that these preteen years have more hormones going on than we realize. And that is why, other than repeated infections, most pans kids get into long term flares around this age. If i see a couple days of something that looks pansy...i give ds9 ole, monolaurin, oreganol and garlic. All 4 at one time, only once a day. I also up the zinc for a while, though i am giving him an extra zinc about once a week. DS12 did not have mthfr mutation..i am guess neither do the other 2 boys....but they were not tested. I have been at his hard core for more than 3 years and doing other research and protocals for 7 years before that (when ds12 would remit with standard abx course). (i was spoiled in his complete remissions and prayed as he got close to 9years of age that it would continue but no such luck...maybe too many episodes). Give probiotics almost every night to ds9 but definitly at times of natural protocals.

DS9 has not had the numerous episodes that ds12 has had and hopefully i will not have to go through all of this with him..and maybe that is why i am gettting some good response to the naturals for him. I continue protocal for a full week to 2 weeks after pans symptoms stop.

 

Again, once these kids are triggered, though they may not be getting an actual infection(maybe he is just getting run down), the exposures are triggering him and i want to squelch it before he gets too run down and it does become an infection.

i hope that explains what might help if you don't think it is a full blown, rampit infection.

 

Maybe you could try something like this for you child if you are seeing a minor flare.

 

Sorry for the soap box.

[sosudden]

FIXIT, I FEEL your steam too!!! So frustrating!! My 9y/0 daughter had to go 4 days without antibiotic (started vomiting and became green/yelow on augmentin) until I could get a doctor to call in Zithromax for her!!! :(

No one local that I have found...

Traveled to Chicago for IVIg with Dr K in February...

Helped tremendously!!! Until June 5th :( Went swimming in big public pool and within hours of getting home she was BAD?!?! THEN 2 days later still bad, sore throat, huge fever blister, yellow spots all over her swollen red tonsils :( Took her to pediatrician who knows her diagnoses (did not diagnose her BUT I am keeping him in the loop whether he likes it or not;). Her rapid strep was negative - doctor refused to send off for culture or draw any labs?!??!! It was just treated as an "OH WELL.." grrrrrrr!!!!!

OMG and her pupils were HUGE 2 nights ago

And food fears (anorexia) coming back....

Time for my silent scream "AHHHHHHH!!!"

OK.

HUGS to all the amazing PANDAS parents and the BRAVEST kids in the world!!!

[ajcire]

Fixit.. ah yes.. the example I was given was... if your kid is wearing a red shirt and falls out of a tree and breaks his arm... it doesn't mean it was because he was wearing a red shirt...