Back from the Dr... too much information!

[matis_mom]

Well, we saw Dr. Zachrison today, and boy was she ready for us. She did a thorough physical examination and found all joints are swollen, his ears are still swollen (possibly still not fully healed after tonsillectomy), and she was very concerned about the heart murmur, which to her does not sound inocent at all.

A little scary, to tell you the truth. But, her breath of knowledge was very reasurring. She is running a ton of tests (again) including testing for heavy metals, parasites, possible food allergies, etc. Her theory is there is something preventing the antiobiotics from doing their job... she did mention biofilm. We also addressed the enuresis, and yeast as a possible cause, so she put him on Nystatin. She added a series of homeopathic drops to deal with everything from strep to candida.

She wrote six pages of notes explaining the whole thing as she went along, and she truly listened to what I had to say (since my son does not complain or talk much, he tends to minimize things). She ordered and ultrasound to check bladder and prostrate, as those are places strep likes to hide. Her thinking is antibiotics get blocked by absesses (tonsils would be an example, but those are out now), so we need to look at other places where there may be an absess. Besides all the bloodwork and ultrasounds, we are taking him to the dentist to have his teeth checked not just for cavitities but also for possible absess under the gum line.

Part of me felt like saying "why don't we just try a stronger antibiotic?" but I think they really are trying to be gentle on kids and get to the root of the problem. At this point I am more concerned about rheumathoid arthritis than I am about the OCD part of this whole thing. Has anyone else had such big issues with joints? Have they resolved?

She said that they try to follow the symptoms, rather than get stuck on the initial diagnosis. Yes, we know he has strep/PANDAS, but now the more pressing issue seems to be RA/RF, and what other factors are contributing (heavy metals, yeast, mold, exposure, etc)

But, she did mention zithromax as the next step if this round of cefuroxine + vancomycin doesn't do the trick...

 

After all that, doing the labs, and buying all the supplements, I was saw exhausted I called home and asked my husband to cancel the appointment with Dr. Latimer tomorrow. I feel we have a good action plan and a long list of things to do, and seeing another doc tomorrow would just be too overwhelming. Plus, it's just another out-of-pocket expense which we really cannot handle.

 

Well, that is for now, I better go to bed...

 

Isabel

[Stephanie2]

Isabel,

 

Is Dr. Z a DAN doctor? Her "action plan" sounds great! Would you please share with me what herb drops she prescribed? We went that route to kill strep at one point but it did not work (but I have spoken with women who have had success with that). We have tried Oil of Oregano and Biocidin. With both of them, it worked for a couple days (I saw a major improvement in pandas symptoms) but then the effect wore off and he went into a tailspin so I had to go to the abx. I would love to get him off abx one day, though and try the herbs.

 

Stephanie

 

Well, we saw Dr. Zachrison today, and boy was she ready for us. She did a thorough physical examination and found all joints are swollen, his ears are still swollen (possibly still not fully healed after tonsillectomy), and she was very concerned about the heart murmur, which to her does not sound inocent at all.

A little scary, to tell you the truth. But, her breath of knowledge was very reasurring. She is running a ton of tests (again) including testing for heavy metals, parasites, possible food allergies, etc. Her theory is there is something preventing the antiobiotics from doing their job... she did mention biofilm. We also addressed the enuresis, and yeast as a possible cause, so she put him on Nystatin. She added a series of homeopathic drops to deal with everything from strep to candida.

She wrote six pages of notes explaining the whole thing as she went along, and she truly listened to what I had to say (since my son does not complain or talk much, he tends to minimize things). She ordered and ultrasound to check bladder and prostrate, as those are places strep likes to hide. Her thinking is antibiotics get blocked by absesses (tonsils would be an example, but those are out now), so we need to look at other places where there may be an absess. Besides all the bloodwork and ultrasounds, we are taking him to the dentist to have his teeth checked not just for cavitities but also for possible absess under the gum line.

Part of me felt like saying "why don't we just try a stronger antibiotic?" but I think they really are trying to be gentle on kids and get to the root of the problem. At this point I am more concerned about rheumathoid arthritis than I am about the OCD part of this whole thing. Has anyone else had such big issues with joints? Have they resolved?

She said that they try to follow the symptoms, rather than get stuck on the initial diagnosis. Yes, we know he has strep/PANDAS, but now the more pressing issue seems to be RA/RF, and what other factors are contributing (heavy metals, yeast, mold, exposure, etc)

But, she did mention zithromax as the next step if this round of cefuroxine + vancomycin doesn't do the trick...

 

After all that, doing the labs, and buying all the supplements, I was saw exhausted I called home and asked my husband to cancel the appointment with Dr. Latimer tomorrow. I feel we have a good action plan and a long list of things to do, and seeing another doc tomorrow would just be too overwhelming. Plus, it's just another out-of-pocket expense which we really cannot handle.

 

Well, that is for now, I better go to bed...

 

Isabel

[sf_mom]

I too just got back from Immunologist today and he also mention RF regarding my son's friend due to the elevated Anti-DNase-B of 680.

 

Thought I'd post this:

 

Rheumatic fever is an inflammatory disease that may develop two to three weeks after a Group A streptococcal infection (such as strep throat or scarlet fever). It is believed to be caused by antibody cross-reactivity and can involve the heart, joints, skin, and brain[1]. Acute rheumatic fever commonly appears in children between ages 5 and 15, with only 20% of first time attacks occurring in adults[1].

It gets its name for its similarity in presentation to rheumatism.[2]

[smartyjones]

I too just got back from Immunologist today and he also mention RF regarding my son's friend due to the elevated Anti-DNase-B of 680.

SFmom - are you saying the immuno was looking at RF because of that anti-dnase number?

 

matis mom - so glad to hear you have a plan! please keep us posted on how it works out.

[thereishope]

I remembered reading about joint pain before in a thread. This is what I found...

 

http://www.latitudes.org/forums/index.php?...mp;hl=arthritis

[sf_mom]

Yes, for my son's friend Adrian....... not my son.

 

I too just got back from Immunologist today and he also mention RF regarding my son's friend due to the elevated Anti-DNase-B of 680.

SFmom - are you saying the immuno was looking at RF because of that anti-dnase number?

 

matis mom - so glad to hear you have a plan! please keep us posted on how it works out.

[smartyjones]

wow - that was my son's dnase # in june -- along with a falling ASO of 486. ASO fell from 598 in april, 898 in dec. anti-dnase was 480 in april. (anti-dnase was done at different labs so i thought that might account for difference)

 

he is doing very well behavior wise - which was main presentation of pandas. ped was happy to see ASO falling but did agree it was still high.

 

is this something i should be concerned about? i'd appreciate any thoughts/advice.

[matis_mom]

Isabel,

 

Is Dr. Z a DAN doctor? Her "action plan" sounds great! Would you please share with me what herb drops she prescribed? We went that route to kill strep at one point but it did not work (but I have spoken with women who have had success with that). We have tried Oil of Oregano and Biocidin. With both of them, it worked for a couple days (I saw a major improvement in pandas symptoms) but then the effect wore off and he went into a tailspin so I had to go to the abx. I would love to get him off abx one day, though and try the herbs.

 

Stephanie

Stephanie,

I don't think she is a DAN doctor, but she sure knows all about ASDs. She actually did mention the "A" word... ("he is not autistic, but he does present like a child in the autism spectrum", she said -gulp!) She put him on different homeopathic drops by a company called "Deseret Biologicals" One of them is called "Staph/Strep" We were discussing the possibility of their being a carrier in the family. She said if there is an a-symptomatic carrier, the drops would probably be all the treatment needed (trying to avoid antiobiotics so we don't start the whole yeast/candida cycle which is something that seems to run in the family). She also has him on silver, which is good for both bacteria and virus. All the other drops are mostly detox and address candida/fungus/mold, and support other systems. As for vitamins, he is taking something called "Multigreens", Kyo-chlorella, B-vitamins, and added those of Ds, and other supplements for thyroid/adrenal function.

This probably does not answer your question, though. My son is still on abx, the natural stuff is only "a complement to traditional medicine" (that's what says on her card!)

On one of the replies I got from and earlier post, someone mentioned the fact that even herbs can have side effects and interact with other drugs, so for now I am giving up anything outside what she prescribed. It's hard enough to keep all this different things straight and make sure they are all taken at the right time

The only thing I might add is Epsom salt baths, since not matter what the result of the tests are it is clear he needs to detox, and warm bath can't hurt anyone, I actually think I could use one right now to relax!

 

I thought I would mention she said for the rest of the family make sure everyone gets their daily probiotics, fish oils, and a small dose of silver.

 

Isabel