Still don't know what to do... HELP!

[matis_mom]

Hi all,

 

By now you are all probably sick of hearing my story... But here we go again, I just cannot decide what to do.

 

We were working with an MD/Naturopath since July. We have seen improvement, but neurological/behavioral symptoms are still there, especially after a flare-up when my non-pandas daugther had strep.

 

We saw Dr. Latimer last week, she recommended high-dose Augmentin + 1-month of steroids. I filled the prescriptions but could not bring myself to start the steroids until after our follow up at our other doc.

 

We went for a follow up with our naturopath today, to get the result of all the latest tests (some of which I had already gotten a copy of and brought to Dr. Latimer). Strep antibodies are still high, and it turns out there is a bit of a heavy metal issue. Lymes and Bartonella came back NEGATIVE, although there is a minute amount of antibodies present (no enough for a positive or equivocal result). Dr. still thinks this is simply because his strep is so off the chart. At the end of the appointment I brought up our visit with Dr. Latimer. They clearly said DO NOT GO WITH THE STEROIDS. They are just a patch and you'll be back to square one in a few months. He has had strep for probably 1 to 2 years, and it will take another year to clear it, but they are confident all of the other issues will resolve when we take care of the strep.

 

So, my husband and I do not know what to do. I just put in a call to Dr. Latimer, to ask specifically if it's safe to do steroids if there is even a small chance he might also have Lymes. My husband is trying to understand this and help me make the decision, but it's hard to relate all the in-and-outs, all the individual variations, what works and what doesn't for certain kids and not others, etc. He is under a lot of stress at work and studying for an exam too, so I really cannot ask him to drop everything and spend hours researching this (like I have, and I still don't know what to do!). But neither one of us is a doctor, and the two doctors we have consulted are proposing different courses of action (although at least they agree on the diagnosis!!!).

 

So, I don't want this to turn into a big conventional vs. alternative debate on this forum, but I would like to hear from those of you who have been dealing with this for a while, as far as what long-term results you have had one way or the other.

 

We could go with Dr. Latimer and see good results in a month (or not), and then have it come back worse (or not), or we could stick with Dr. Zackrison and go the slow and steady route, but really one way or the other we don't know which will be best for him. There is just no telling how he will react.

 

We are trying to do right by our son, but just cannot seem to decide one way or the other. Since the last flare up things have settled a bit and he is getting through the day just fine, needing a little help to shorten his rituals, so it's not like there is an impeding crisis.

 

I some much appreciate you all lending an ear and sharing your experiences!

 

Isabel

[matis_mom]

I forgot to mention, Dr. Latimer said that the steroids where not only to get him back, but also to see if he'd be a candidate for IVIG, and she was also looking at his IgA numbers to see if we could use that to help with insurance coverage... So I got the impression she's definitely considering doing it sooner rather than later...

[thereishope]

Sorry. I know you've probably posted this, but I can't keep track of everyone.I have to refer back to my own journal entries to keep track of my own story. Does your son have tics? Have you tried Ibruprofen? If so, has it helped? Finally, how long has it been since you started treating the strep in the first place?

[matis_mom]

Sorry. I know you've probably posted this, but I can't keep track of everyone.I have to refer back to my own journal entries to keep track of my own story. Does your son have tics? Have you tried Ibruprofen? If so, has it helped? Finally, how long has it been since you started treating the strep in the first place?

Very few tics, only when tired/on exacerbation. Have not tried Ibuprofen. Have been treating for strep since July.

[thereishope]

If you've been treating the strep since July and have seen progress, I don't really see any harm in soley trying the Augmentin first if you are leary about the steroids. Honestly, if he's had strep for possibly 2+ years, it will probably take longer than 4 months to get back to baseline. Are you wanting to get IVIG? Did the naturopath give you a specific reason not to do the steroid besides that is may just be a bandaid? The reason I ask about the tics is because of the concern if there could be a "double diagnosis" of TS and PANDAS and the concern that a steroid could them worsen tics.

 

I say voice your concerns to Dr L, ask if she ever considers doing IVIG w/o a steroid burst for comparison and take it from there. What is the naturopath's opinion about the IVIG?

 

Personally, I would at least do the Augmentin.

[matis_mom]

If you've been treating the strep since July and have seen progress, I don't really see any harm in soley trying the Augmentin first if you are leary about the steroids. Honestly, if he's had strep for possibly 2+ years, it will probably take longer than 4 months to get back to baseline. Are you wanting to get IVIG? Did the naturopath give you a specific reason not to do the steroid besides that is may just be a bandaid? The reason I ask about the tics is because of the concern if there could be a "double diagnosis" of TS and PANDAS and the concern that a steroid could them worsen tics.

 

I say voice your concerns to Dr L, ask if she ever considers doing IVIG w/o a steroid burst for comparison and take it from there. What is the naturopath's opinion about the IVIG?

 

Personally, I would at least do the Augmentin.

Thanks Vickie, your opinion is very helpful. That's what I was thinking of doing, particularly because our naturopath suspects underlying Lymes, and steroids could have very adverse effects if he does have Lymes. The few tics/tourettes he has, Dr. Latimer noticed, but did not seem concerned about. I am leaning towards doing just the Augmentin for now and see. Maybe I will add daily ibuprofen to bring down the swelling and see if that helps the bedtime anxiety.

 

Did anyone here see improvement on antibiotics ONLY? Wasn't that Sammy's case (I still have not read the book!), it just took a long time? I am asking these questions not only for myself, but to try to paint a clear picture to my dh, who just wants his son to get well soon! I now one way or the other, from reading other people's experiences in this forum, it will take a long time, and we will see some bumps along the road.

 

Isabel

[lismom]

If you've been treating the strep since July and have seen progress, I don't really see any harm in soley trying the Augmentin first if you are leary about the steroids. Honestly, if he's had strep for possibly 2+ years, it will probably take longer than 4 months to get back to baseline. Are you wanting to get IVIG? Did the naturopath give you a specific reason not to do the steroid besides that is may just be a bandaid? The reason I ask about the tics is because of the concern if there could be a "double diagnosis" of TS and PANDAS and the concern that a steroid could them worsen tics.

 

I say voice your concerns to Dr L, ask if she ever considers doing IVIG w/o a steroid burst for comparison and take it from there. What is the naturopath's opinion about the IVIG?

 

Personally, I would at least do the Augmentin.

Thanks Vickie, your opinion is very helpful. That's what I was thinking of doing, particularly because our naturopath suspects underlying Lymes, and steroids could have very adverse effects if he does have Lymes. The few tics/tourettes he has, Dr. Latimer noticed, but did not seem concerned about. I am leaning towards doing just the Augmentin for now and see. Maybe I will add daily ibuprofen to bring down the swelling and see if that helps the bedtime anxiety.

 

Did anyone here see improvement on antibiotics ONLY? Wasn't that Sammy's case (I still have not read the book!), it just took a long time? I am asking these questions not only for myself, but to try to paint a clear picture to my dh, who just wants his son to get well soon! I now one way or the other, from reading other people's experiences in this forum, it will take a long time, and we will see some bumps along the road.

 

Isabel

 

We are only doing antibiotics right now. My son is 12 and main issue is tics and minor emotional/anxiety. We are on month 3. This is our second round. Had an explotion over summer, still reason unknown. At the point before worsening he was 95% better. Upped the zithromax and got through H1N1 and he is still healing. I think this can be a longer journey than we think. I think it will take at least a year before he is baseline depending on viruses he gets. At this time he is to on the mild side for ivig even though I think it would help things faster. Our insurance doesn't cover much of anything and he has no difficiencies.

 

I also was scared and have not tried steroids because I know it can worsen tics if part of our pandas is ts. I also noticed that sugar and anything processed made things worse. Kathy

[thereishope]

My son improved on antibiotics only w/ the exception of a 5 days steroid burst during his second exacerbation. He was very bad off. There's a whole thread dedicated to those who did abs only. If you want me to pull it up, let me know.

 

To give you an idea, my son's 3rd strep induced strep exacerbation was antibiotics only and took 5 months to get back to baseline. That included residual OCD we had to take of and the strep was detected very quickly.

 

I would also give Omega 3's and DHA to help the brain as it heals. I continue to give it even though he is doing well now.

 

Just be open with Dr Latimer. She'll understand.

[Megs_Mom]

We saw improvement with Steriods, but so far only did the burst for 5 days. It only helped for the time frame that she was on it - but I do understand that it has helped other children longer term. We would do the steriod in a heartbeat if she ever got really bad again. I'd do almost anything at that point.

 

However, my question is why your neuropath suspects Lyme? That is not a casual diagnosis, and if he really suspects this, he should immediately be referring you to one of the experts in Lyme so they can do testing. Most Labs have a REALLY high rate of false negatives. You don't want to do steroids if he has Lyme. Did you tell Latimer about this suspicion? If not, then call her & explain this & see what she'd recommend doing next - maybe she will send you to a Lyme expert.

 

I would not hesitate for one second about the antibiotics. I waffled on this for a while (I was a little earthy about antibiotic abuse) and am very sorry that I let her suffer for one day longer than necessary. Meg's OCD was pretty dramatic, but we had so many PANDAS naysayers around us that it was hard to make the call. I will never suffer from that insecurity again - she gets antibiotics for as long as she needs them. We continue to see improvement - lately, I have been noticing that almost all of her sensory issues are gone. I think she had these since she had her first incident at 3 - but SID remained. I just thought that was how she was, and got her tools to deal with it. But with antibiotics, this seems to be resolving as well. She wore a hooded sweatshirt for the first time - I think ever - yesterday!

 

A lot of kids get antibiotics for acne... our pharmacist reminded me of this & it rocked me - why are we treating skin and not brains!

[dcmom]

mati's mom-

 

Hi- we are on a steroid burst now, so I thought I would chime in.

 

I think, unfortunately, both docs might be right

 

Like many are starting to think about pandas kid- maybe your son does have an underlying infection. So- of course that needs to be treated. While I am all for the natural, do no harm way of treating illness- I can't help but think this is a situation that seems to need antibiotics. I mean, I think the invention of antibiotics revolutionized medicine for the good- they are definitely needed sometimes, not all things can be cured with a more natural route. So, I think there might be more harm in not trying antibiotics.

 

Secondly- if there are no tics, I would consider the steroid burst. While I agree it may be a bandaid that only lasts a couple of months (but hopefully not- some have found more lasting results)- wouldn't it be nice to have that symptom free time, while you are addressing the underlying infection? Of course, check with Dr L about lymes- I know nothing about that.

 

My dd is on a steroid burst now, after a flare up post H1N1. It stopped the flare in its tracks. Now we are tapering off, so we will have to wait and see how much time that has given us....

 

These decisions are so hard- best on whatever you decide- only you know your child, and I think you have to go with your gut....

[brooke]

I, too cannot remember if I already replied.

I am usually a big believer in alternative medicine. However, in this case, it does not seem the alternative doctor has a lot of experience with PANDAS.

I would definately advocate for the steroids as a trial. That is what we did and for Dr. Latimer, it was diagnostic that our son responded so well to prednisone. We could not stay on it because it made his heart race, but it lead us to decide that we needed to be more aggressive treating our son with PEX or IVIG.

 

Don't be afraid! I was there too and probably filled the rx and let it sit for weeks. Trust Dr. Latimer and talk to her about your fears. But I would not waste another day before trying prednisone. Do one at a time though.

Good luck!

Hope this helps!

[faith]

mati'smom,

just curious if you have been able to talk with Dr. L. about this, or are you waitng to do so? When I was on the fence about doing the month long steroid, I wrote her an e-mail with no replay and re-sent it 4 days later, again with no reply. I've held off on the steroid for now.

 

I don't understand about 'underlying lymes'.? have you had testing for lyme? if he's been tested and its negative, I'm not sure why the naturo would suspect he has it.

 

Faith

[thereishope]

When was that? Did you try calling the office?

 

 

mati'smom,

just curious if you have been able to talk with Dr. L. about this, or are you waitng to do so? When I was on the fence about doing the month long steroid, I wrote her an e-mail with no replay and re-sent it 4 days later, again with no reply. I've held off on the steroid for now.

 

I don't understand about 'underlying lymes'.? have you had testing for lyme? if he's been tested and its negative, I'm not sure why the naturo would suspect he has it.

 

Faith

[faith]

We saw her first on November 3rd. I called the following Monday, basically told the recptionist what was on my mind and to say i was sending an e-mail. no reply and I re-sent it 4 days later. I am confident about my decision, I just didn't feel the holiday season was the right time to do a steroid trial. I am notorious for doing things slowly in steps, sometimes I panic and want it all done NOW, but then I see its better to take it one step at a time. I'm confortable with antibiotics, but I havn't seen much of a change to sing about.

Faith

[matis_mom]

Thanks all for the replies! I put in a call to Dr. Latimer to ask if she still OK to do steroids if there is a suspicion of Lymes. I had brought this up at the appointment, but the test results are not that easy to read, all we could see was negative for this and that. However, looking at the results closer, there are minute amounts of IgG for Bartonella and Lymes, not enough to call it a positive. The thing judging by his symptoms, the "clinical" diagnosis is Lymes. And in any case those labs results are not 100% accurate... and there is also the fact his strep is so high, the body is only dealing with that at this point (strep titers are high, although they are coming down from the nos. we saw in July). So no one can say for sure he does not have it. We are surrounded by woods and see deer often, and we have pulled a tick or two. My husband had Lymes last summer.

 

Just to clarify, he has been on antibiotics since July. So we are definitely continuing with that, maybe changing the Cefuroxime to Augmentin.

He is also on Vancomycin (another abx, kind of clears out the gut), and Plaquenil (for the joint swelling).

 

I will wait for Dr. Latimer's call and see. At this point, I think I will give the antibiotics more time. Like a friend of mine put it, "what would be the risk of NOT doing steroids right now?" It seems at this point waiting is the safer option. What would I give to be able to look into the future and see how the options would play out!