Ready to buy meds online, can't get help.

[HopeforHealth]

My eyes are puffy from crying, I feel like my head is going to explode, I feel like I'm screaming at the top of my lungs and no ones listening. Our 4 year old son has many Pandas symptoms, but his ped is just shrugging them off, even though both of my boys ( youngest is 22 months and starting to show the same symptoms as older brother) have been swabbed and show nasal carriage of staph aureus. They both have frequent skin infections. Unfortunately I didn't link it all together until now, and ped won't treat unless there's an active infection. They both run low grade fevers all the time (which makes me think their body is trying to fight he staph, and when they get sick, their immune system goes down and they get impetigo or a boil and they usually have a few pimples on their skin all the time.) Their behaviour is pretty consistent, I don't notice flares, unless they e become so normal it's normalcy to me. Fixation on small objects, limited vocabulary(he's 4.5 and talks and has the development of a 2.5-3 yr old) clingy, withdrawn, stuttering, repetitive talk, paranoid of parking lots, grass, flies, has multiple meltdowns a day, like mother huge meltdowns, easily frustrates, trouble comprehending simple 1-2 tasks, fits of rage, does t easily transition to new tasks, displayed pupils, sore knees, lethargy, the list goes on and on. I can't get my ped to treat him or both, even though staph aureus is the culprit. I know it's risky to order meds online and to self treat, but I need to try something. SOMETHING. I believe either augmentin or keflex along with mupricin in the nose should eradicate it....I can't just let it be any longer....he's going for an assessment at a centre, but I fear they will just diagnose him with autism, adhd, or sensory processing. I'm afraid to bring up that I think it's pandas. I'm tired of talking and none truly listening or helping. I'm so defeated.

[dcmom]

Where are you located? You need a pandas doc to help!

[jan251]

Try to find a PANDAS doc.

 

Also beware of assuming only one particular germ is the problem. Consider the big picture: immune system health, methylation, etc., especially in light of the ASD-type behaviors. I think you are wise to consider that much of the behaviors might be PANDAS prior to getting assessments, though time is of the essence.

 

If you can't see a PANDAS doc soon, herbal options to treat infections are generally available over the counter, at your local vitamin store or amazon. That takes a good deal of reading but at least reading is something within your control.

Edited June 7, 2015 by jan251

[emst]

Sorry you are having such a rough time.

Great advice above.

If you can post about your location information soon that would be helpful. There are things you can do to help your family in the meantime. We had many frustrating conversations with regular Pediatricians that cost us a lot of lost time. Some people have has success with using catch phrases like "failure to treat" sometimes gets through to reluctant docs and gets them off their duff to either do a trial treatment of antibiotics or to refer you to a specialist.

 

Are you giving the kids any supplements or supports? one of our first moves was the antifungal parade (Sid Baker MD)

 

Interesting article here http://naanyc.blogspot.com/2011/05/dr-sidney-bakers-treatment-options.html

[mama2alex]

Some of the symptoms you describe are common to Lyme Disease and Bartonella, a co-infection of Lyme - especially the sore knees, lethargy and rages. Many kids with PANDAS/PANS have turned out to have Lyme and co-infections as well as other infections. These things rarely travel alone. I would encourage you to see a Lyme-literate MD. If you post your location, someone here can most likely refer you to a good one. Lyme doctors are now seeing a lot of PANDAS/PANS kids and are experienced at looking for ALL the infections and other issues that can contribute to this. They will address the staph, but also look deeper.

 

I can totally relate to how you're feeling. When my son was at his worst, I told my husband many times that I felt like I was standing in the middle of a crowded room screaming for help, but everyone just kept acting like they didn't hear me. But the people on this forum heard me and helped. We hear you too. Hang in there!

Edited June 7, 2015 by mama2alex

[MomWithOCDSon]

Sorry you're going through this. I don't know if it helps to know that so many of us have been in similar places during our PANDAS/PANS journey, and you are not alone.

 

I have to second the advice that you get to a PANDAS/PANS literate doctor, ASAP. With the behavior set you're seeing, it is very likely, IMHO, that your older DS is likely to be misdiagnosed by any practitioner not well-versed in PANDAS/PANS, further delaying appropriate and effective treatment options. This may be even more so the case for your youngest as, given the early stages of development thus far in play for him, many docs are likely to steer clear of any "atypical" treatment protocols out of concerns over misuse of abx, etc.

 

In the meantime, I would consider some herbal, supplementary and OTC medications to control inflammation and potentially even defeat the staph. Olive leaf and coconut oil are supposed to be anti-bacterial; look for a high olepeurin component in the olive leaf (18% to 22% is about as high as it gets over the counter, so far as I've found). Curcumin can be a powerful anti-inflammatory.

 

Both now and once you begin any abx, I encourage you to make sure and use a good-quality, multi-strain probiotic; many of them come in powders or capsules that you could mix into anything cold (yogurt, ice cream, applesauce) without destroying the beneficial bacteria. These will help protect your kids' guts during the rest of the treatment process.

 

Hang in there!

[pr40]

in your place, I would do what your headline suggests (augmenting, zythro is a usual combo) WHILE also trying to find a Pandas dr. I would also try to go back to the same or different local pedi and ask for comprehensive tests of titers for infections, including IGENEX lyme test.

is celiac possible? do autoimmune conditions run in your family?

Ibuprofen may be of some (little) help.

good luck.

[sarojane]

High CBD hemp oil has helped us a lot with anxiety. Garden of Life resveratrol made from Japanese Knot Weed and Boswellia for inflammation.

Oxylent powdered multi vitamins with SOD and epsom salt baths every other day help with detox.Taurine 500 mg 1 x a day for liver processing.

 

Lauricidin helps kill and inhibit candida.

 

GAPS diet may help.

[sarojane]

Tell your pediatrician that if you were able to you would go to STANFORD UNIVERSITY, where they know about PANDAS and have a department dedicated to treating the syndrome. Maybe they will realize this is a real thing, wake up, and help you! Sorry you have to go through this. It sucks.

[nicklemama]

I think you are in Canada. Let us know exactly where so we can guide you to doctors. Few of us have pediatrician helping us. Most of us go to doctors willing to help and that is where you need to head.

[HopeforHealth]

I think you are in Canada. Let us know exactly where so we can guide you to doctors. Few of us have pediatrician helping us. Most of us go to doctors willing to help and that is where you need to head.

[HopeforHealth]

I think you are in Canada. Let us know exactly where so we can guide you to doctors. Few of us have pediatrician helping us. Most of us go to doctors willing to help and that is where you need to head.

I am in Manitoba...newly moved aswell and have yet to even get a family doctor let alone a pediatrician. As suspected, after the assessment, our son was labeled with autism. It's an easy label to slap on and I don't believe it for a second. The chronic fevers and behaviours say much more to me.

[mama2alex]

I recommend starting a new thread with a title something like "Need PANDAS-literate/Lyme-literate MD in Manitoba." That way more people will see what you need right away. And if you see a doctor who knows PANDAS AND Lyme, you will be in good hands.