Longterm antibiotics...yeast concern

[peagreen]

We just got my daughter's CamK score which put her well into the PANDAS range (165). Her behaviors are mild at this point, though she does have worsening behavior following illness, and had a major regression at 4 months old after being sick. She is now fairly typical, but because we were testing my son, who has more severe issues, we tested her as well. What's odd is that my son had a low CamK score (118), and very low neuronal antibodies, even though his issues are much more severe. Still, I fear my daughter may be a walking time bomb.

 

My question is that my kids' doctor is suggesting antibiotics, which concerns me because both my kids have major yeast issues. I can't imagine what will happen with their yeast if we go on longterm abx. Even withoug antibiotics my kids have yeast issues, despite lots of probiotics and even antifungal medication. What do you all suggest?

 

P.

[peglem]

I think you should get immunology workups for your kids. A properly working immune system should be able to resolve yeast issues w/o intervention- IMHO.

[mama2alex]

I agree with getting an immunology workup - I think any child suspected of having PANDAS should have one. Also, the immune system is definitely what keeps yeast at normal levels in most people. Sometimes (possibly always??) underlying the immune system issues is heavy metal toxicity - have you had them checked for this?

 

My son has had yeast issues since he was a baby as far as I can tell (we discovered it through at DAN doc at age 3). How old is your daughter? Is she taking probiotics or medications for it? Also, why is your doctor recommending antibiotics? Does he/she think your daughter has a current strep infection? I don't think a high Cam Kinase score necessarily means a current infection, but others can correct me if I'm wrong about that.

[EAMom]

I suspect this kids that have high CamK scores but minimal symptoms have a closed blood brain barrier. Buster has posts on this scattered about. Here is one http://www.latitudes.org/forums/index.php?...art=#entry46251.

 

Yes, I do think that the key is whether the blood-brain barrier opens or not. I think you need all three events:

1. The initiating strep infection,

2. the unusual immune system response,

3. and the breach of the BBB.

I think we'll find lots of kids get #1 and #2 without having #3. With respect to controls, I too think this is the area that will need careful study. Right now we have numbers but no clear understanding of what the number means. We might be measuring a side effect rather than a cause.

 

Perhaps your dd's bbb temporarily opens or becomes leaky after illnesses leading to PANDAS symptoms.

[dut]

I agree with EAmom about the BBB. Our dd's CaMK score was 165% when she was totally symptom free in between episodes.

[peagreen]

Thank you all for your comments.

 

My son has had several immunology workups over the years. He always has low IgA, low IgG (IgG1 subclass), fails ALL pneumococcal strep titiers, and fails to make an antibody response to Candida. All of the three immunologist asked us to re-vax, then check titiers again. Since we didn't feel this was safe, they basically told us they wouldn't go any further with us...ALL THREE!! Our new ped is trying to get us in with another immunologist she has faith in...it's been frustrating!

 

We've been working with a DAN doc since my son was 14 months old, which was when he was diagnosed on spectrum. We have checked him for metals several times over the years, and have not been able to get a result that would compel us to chelate. He was only vax'd up to a year, and only rec'd thimerasol in one vaccine (hep , and though I wouldn't doubt that the metals in that vaccine are causing him issues, I'm confused by the fact that my daughter, who is unvaxed, also seems to have yeast issues. It makes me think that there may be some other factor involved, like the XMRV virus that everyone is talking about, which is causing immune dysregulation.

 

My daugther has not yet had a full immunology workup, but some immune labs have been done, which resulted in normal (but on the low side) IgG levels. Since she is unvaxed, and only just turned 3 years old, I don't know how much we would learn from checking titers, but hopefully if we can fine a good immunologist, we will learn more about her immune system.

 

So, I agree that my kids have immune system issues that are causing their yeast issues, but my question is, what can I do about it? I also have concerns about IVIG because of the possibility of contracting as yet unknown infections. Until recently, the XMRV virus wasn't known...a Retrovirus that causes acquired immune issues like the AIDS Retrovirus.

 

I'm really at a loss for how to help my kids!

 

 

 

I think you should get immunology workups for your kids. A properly working immune system should be able to resolve yeast issues w/o intervention- IMHO.

[peagreen]

One more question: Our DAN doctor said that he didn't feel that IVIG would help with yeast issues. Does anyone have any experience with this?

 

 

 

Thank you all for your comments.

 

My son has had several immunology workups over the years. He always has low IgA, low IgG (IgG1 subclass), fails ALL pneumococcal strep titiers, and fails to make an antibody response to Candida. All of the three immunologist asked us to re-vax, then check titiers again. Since we didn't feel this was safe, they basically told us they wouldn't go any further with us...ALL THREE!! Our new ped is trying to get us in with another immunologist she has faith in...it's been frustrating!

 

We've been working with a DAN doc since my son was 14 months old, which was when he was diagnosed on spectrum. We have checked him for metals several times over the years, and have not been able to get a result that would compel us to chelate. He was only vax'd up to a year, and only rec'd thimerasol in one vaccine (hep , and though I wouldn't doubt that the metals in that vaccine are causing him issues, I'm confused by the fact that my daughter, who is unvaxed, also seems to have yeast issues. It makes me think that there may be some other factor involved, like the XMRV virus that everyone is talking about, which is causing immune dysregulation.

 

My daugther has not yet had a full immunology workup, but some immune labs have been done, which resulted in normal (but on the low side) IgG levels. Since she is unvaxed, and only just turned 3 years old, I don't know how much we would learn from checking titers, but hopefully if we can fine a good immunologist, we will learn more about her immune system.

 

So, I agree that my kids have immune system issues that are causing their yeast issues, but my question is, what can I do about it? I also have concerns about IVIG because of the possibility of contracting as yet unknown infections. Until recently, the XMRV virus wasn't known...a Retrovirus that causes acquired immune issues like the AIDS Retrovirus.

 

I'm really at a loss for how to help my kids!

 

 

 

I think you should get immunology workups for your kids. A properly working immune system should be able to resolve yeast issues w/o intervention- IMHO.

[peglem]

One more question: Our DAN doctor said that he didn't feel that IVIG would help with yeast issues. Does anyone have any experience with this?

 

I don't have experience with it, but wonder if its the low IgA that is causing the yeast problems? IVIG wouldn't help IgA levels. Just guessing on his thinking there. IVIG would help with low IgG1, though.

Also low IgA is a risk factor for autoimmune disorders.

[Ellen]

Has your DAN doc ever tried Nystatin for the yeast issues? If not, it might be worth a try.

 

Ellen

 

Thank you all for your comments.

 

My son has had several immunology workups over the years. He always has low IgA, low IgG (IgG1 subclass), fails ALL pneumococcal strep titiers, and fails to make an antibody response to Candida. All of the three immunologist asked us to re-vax, then check titiers again. Since we didn't feel this was safe, they basically told us they wouldn't go any further with us...ALL THREE!! Our new ped is trying to get us in with another immunologist she has faith in...it's been frustrating!

 

We've been working with a DAN doc since my son was 14 months old, which was when he was diagnosed on spectrum. We have checked him for metals several times over the years, and have not been able to get a result that would compel us to chelate. He was only vax'd up to a year, and only rec'd thimerasol in one vaccine (hep , and though I wouldn't doubt that the metals in that vaccine are causing him issues, I'm confused by the fact that my daughter, who is unvaxed, also seems to have yeast issues. It makes me think that there may be some other factor involved, like the XMRV virus that everyone is talking about, which is causing immune dysregulation.

 

My daugther has not yet had a full immunology workup, but some immune labs have been done, which resulted in normal (but on the low side) IgG levels. Since she is unvaxed, and only just turned 3 years old, I don't know how much we would learn from checking titers, but hopefully if we can fine a good immunologist, we will learn more about her immune system.

 

So, I agree that my kids have immune system issues that are causing their yeast issues, but my question is, what can I do about it? I also have concerns about IVIG because of the possibility of contracting as yet unknown infections. Until recently, the XMRV virus wasn't known...a Retrovirus that causes acquired immune issues like the AIDS Retrovirus.

 

I'm really at a loss for how to help my kids!

 

 

 

I think you should get immunology workups for your kids. A properly working immune system should be able to resolve yeast issues w/o intervention- IMHO.

[Suzan]

We have yeast issues too and take caprylic acid, Candex and probiotics daily to try to help and it does seem to help. Our Dan! has also put them on prescription yeast meds at times to help when it seems to get worse. I think the benefits of antibiotics far outweigh the risk of yeast at this point. I never would have thought that pre PANDAS.

 

Susan

[matis_mom]

We just got my daughter's CamK score which put her well into the PANDAS range (165). Her behaviors are mild at this point, though she does have worsening behavior following illness, and had a major regression at 4 months old after being sick. She is now fairly typical, but because we were testing my son, who has more severe issues, we tested her as well. What's odd is that my son had a low CamK score (118), and very low neuronal antibodies, even though his issues are much more severe. Still, I fear my daughter may be a walking time bomb.

 

My question is that my kids' doctor is suggesting antibiotics, which concerns me because both my kids have major yeast issues. I can't imagine what will happen with their yeast if we go on longterm abx. Even withoug antibiotics my kids have yeast issues, despite lots of probiotics and even antifungal medication. What do you all suggest?

 

P.

I am sorry to hear about your daughter, at least you know now...

I would go ahead and do the antibiotics, I agree the benefits outweigh the risks.

About candida, maybe try different probiotics? Threelac is expensive but very effective, it might take a high dose for a while and then move down to a maintenance dose.

And of course, stay off sweets. You are probably are doing this, and I know it's soooo hard with kids, but if you keep feeding the beasties, it's a losing battle. Drinking tons of water helps too. Or it may be just a matter of taking stronger antifungal meds (although I understand some can be hard on the liver), but maybe just something to get the upper hand on the problem and then move to maintenance.

[Stephanie2]

Over the summer we got the yeast under control with Diflucan and 2 probiotics. Then in August Pandas hit us really hard and he has been on antibiotics ever since. Yeast has been a constant battle ever since. Here is what we have done:

 

Diflucan (on and off)

Probiotics: S. Boulardii and Culturelle (1 capsule of each, twice a day, last dose right before bed and away from antibiotic)

Antifungal rotation: Oil of Oregano, Biocidin, Pau D'arco (switch every 4 days)

Nystatin 100,000 iu 3 times a day

Phenol Assist (by Kirkman Labs) 1 capsule with each meal (I don't know why this works, but it does seem to blunt the effect of a high carb meal)

 

Things did seem to improve when we recently added the Nystatin and Phenol Assist, but it seems that I have to constantly change things up to stay on top of the situation!! Hope this helps!

Stephanie

 

 

 

We just got my daughter's CamK score which put her well into the PANDAS range (165). Her behaviors are mild at this point, though she does have worsening behavior following illness, and had a major regression at 4 months old after being sick. She is now fairly typical, but because we were testing my son, who has more severe issues, we tested her as well. What's odd is that my son had a low CamK score (118), and very low neuronal antibodies, even though his issues are much more severe. Still, I fear my daughter may be a walking time bomb.

 

My question is that my kids' doctor is suggesting antibiotics, which concerns me because both my kids have major yeast issues. I can't imagine what will happen with their yeast if we go on longterm abx. Even withoug antibiotics my kids have yeast issues, despite lots of probiotics and even antifungal medication. What do you all suggest?

 

P.

[smartyjones]

i have not used this but found it interesting. . . on the main page of this forum, there are old posts from Dr. Jacquelyn McCandless, author of Children with Starving Brains. I was reading throught them one day and she recommends a homeopathic liquid called AquaFlora. I think the webpage is aquaflora.com - you can google search it.

 

when my son first started with symptoms, we were investigating yeast as the culprit. once we discovered pandas and he was on abx, he was also on nyastatin b/c i said i was concerned about yeast. our ped told me that if he personally goes on abx, he also has a regime he uses of diflucan and nyastatin. i don't think it's something he widely prescribes with abx but is certainly agreeable if the patient brings it up. (i seem to somehow remember that i read somewhere that when abx were first widely prescribed, nyastatin was also recommended to go along with it - no matter who or what the reason).

 

my son is on a homeopathic protocol and has had a mild relapse. i wasn't sure if it could be yeast related and asked about aquaflora. our dr suggested another remedy that is not as strong to start with. i don't actually know what role yeast plays in everything. it is obvious he is in some state of dysbiosis but i don't think i believe yeast is the cause of the problem.

 

we're now going back to a stronger strep remedy with the fungal one in the background.

[peagreen]

You know, we've been in the yeast battle for almost 7 years now, and have tried all of the things you all mentioned. Some helped for a while, but nothing helped for very long. At present my son is on a special diet, two Rx antifungals (Amphotericin, and Ketoconazole) plus lots of probiotics, caprylic acid, etc. He seems to need all of this to stay functional. But even with all this, he still shows yeast overgrowth on his labs. And, whenever anything impacts his immune system (like a virus), his behavior becomes very sensory seeking/defiant/unfocused/loss of tone, and I'm not sure if that is from more yeast growing, because the immune system is even more distracted, or if the behavior comes from more of a PANDAS type thing. It's strange, though, because he can be great one day (like yesterday), and a nightmare the next (like today).

 

I'm exhausted and oh so tired of all the medical mysteries and confustion we all deal with on a daily basis. I just wish there were concrete answers.

 

Thank you all for your input! You're a great group!

 

Paula

[sf_mom]

One thing that Dr. K told me that has always stuck with me......... That so many kids have secondary issues/illnesses as a result of PANDAs. Our son has had terrible cradle cap. It was so bad we had him using a special shampoo and conditioner. About a week after our son's first IVIG it completely disappeared almost over night. Thankfully, it has not returned. Solve the underlying immune issues and I'm positive you'll see improvement with the yeast issue.

 

Couple of things that were mentioned by Dr. K or the nurses OBSC.

 

- Mouth Sores

- Eczema

- Allergies

- One child had a feeding tube in 'misdiagnosed'.... When the child started feeling better I understand he no longer needed the tube but administer medication through it because he didn't like the taste. Eventually, the tube came out.