nicklemama

You need to check ferritin levels. My son had a lot of fatigue. Everything was a chore for him, at 5 yrs old. We found very low ferritin levels, then we found Lyme disease. I also discovered I had lyme after I developed severe fatigue.

Very common. Our son started sleeping in our bed and it lasted two years. His behaviors were normal one minute and off the wall the next. It's a very hard disorder to understand, let alone cope with. My husband finally got on the band wagon and when he did, things were much better. Our son followed the rules when he could and did his daily chores when he could and when he couldn't they all went out the window for the sake of everyone's sanity. You'll get there. I've been at this five years. It gets better. It really does. Our lives have returned to normal and our son just got back from 5th grade camp where he spent the first three nights ever away from family. He had a wonderful time at an outdoor education center with every fifth grader in his school sleeping in a dorm full of bunk beds and being responsible for all his own stuff. Unthinkable just a year or two ago.

That's the $64,000 question. My son got strep this summer while on treatment dose Augmentin and Biaxin. A round of Keflex cleared it up. His allergist was shocked. Enough so that he ordered some immune testing. IgA, IgE, IgM and IgG and subclasses. IgA turned up to be slightly low. We are now watching that. Titers were checked for diphtheria and tetanus and both came back in the post vaccination range, so his immune system is functioning and has made antibodies to vaccinations that he had long ago. He's nearly 11.

You've just answered the question yourself in your post. Sudden onset, gets better with abx, a plethora of symptoms all at once. That equals PANS.

You are. In my 5 years of experience with this, you are the ONLY one who absolutely has your child's best interest. You may make a few wrong turns. You turn back and take another path. It's all you can do. No one has the perfect road map to success. Go with your gut.

My pediatrician was of no help. I took DS to a PANS specialist out of state and paid out of pocket. We found someone in state to help but is not an expert. She doesn't take insurance either. Its all been worth it. My son is doing very well. We had an HMO when this all started. We dumped the HMO when the next insurance election came around. Still, many PANS docs don't take insurance. I can submit the bill after I pay upfront and get 60% back after I meet the deductible. Everyone wants a doc that takes insurance. My husband finally came to the realization that it wasn't happening. I could not get prescriptions covered under the HMO but they are all covered now that I have BCBS. All the lab work is also covered under BCBS. If you can switch out of an HMO, that's my advice.

I have Lyme disease. I can tell you that brain fog, memory and word recall problems are a part of lyme. I don't have bartonella, so I can't comment on that. I have had major improvement since starting abx treatment for lyme. It's been 8 months and I have significantly improved but I'm no where near back to my old self.

It's a perfect storm of something going on. How do they know it's not a mutated polio virus? I'm also very suspicious of flu vaccines (with good cause). My friend had Guillen Barre a week after giving birth to her first child after a c section. She had plasmapheresis and has recovered. After 12 years, the only lingering effects are some facial muscle weakness around her eye. I remember she called me to come over a little over a week after the birth. When I got there she was upstairs lying in bed, very weak but didn't want to alarm her husband. She described what she was feeling and told me she needed me to go home and start googling. I didn't come up with Guillen barre because she failed to tell me it started in her feet and was moving up. I thought she might have MS. At any rate, her husband took her to the doctor and she was admitted after she started choking on nothing but her own saliva while talking to the doctor.

Absolutely, says the mom who was told her son suddenly was bipolar w/ aspergers as a side dish. Funny how it happened so suddenly after flu mist. He was not tested for an infection for one year. Funny how it all went away after antibiotics and ivig.

Oh my, this paper has described a PANS kid.

Some PANDAS kids may have celiac or gluten intolerance but they all do not. My son has been tested and he's negative.

My friends and aquaintences are already thinking I'm going over the edge. PANDAS/PANS, vaccination, lyme disease. I had to defriend someone on Facebook when they asked me for proof that the FluMist caused my son's first PANDAS episode. How the am I going to bring this up now?

Think I'm going to be sick.

Amysash- that was a treasure trove of citations. THANK YOU!

Guillan Barre is a complication of vaccines and specifically the flu shot.

Has the CDC been contact to see if one of their epidemiologists can make a connection with either the CO or CA cases? I think that needs to be done so any successful treatments will be shared if this is the same illness.

Oh, geez. So sorry. I would not do less than 30 days of doxy and if I could get it prescribed for 60 days, I would do it. I've also been here since 2009. Bummer. Its taken a lyme dx to finally get somewhere.

I had NO idea this was an Indian company. I had been using mino made by Watson and Target just went to this. I am going to get a new script from my doc when I see him next week. I do not trust these Indian companies.

My son had the Igenex while on two abx too.

Yes, stress can bring out tics. The only symptom my son has right now is eye blinking tics when he's stressed.

You don't need for all of them to be out of range to have PANDAS. It's giving a picture. If you google, you can find info on what it means for an individual one to be high. My sons D1 and tubulin were high, as was the CamKII.

My experience has been that IVIG is not lasting. My son has never had a known tick bite. We found out last year that he was positive for ehrlichia and anaplasma. You don't get those without being bitten by a tick. This year, his Igenex was positive for lyme. IVIG did not make it worse. It justdidn't last. I never in a million years would have thought my son had lyme. However, he never tested positive for strep, so that explains it. We are 5 years in from his original episode.

Wonderful. Gives me hope for my son. He's quirky and smart and beyond his years in many ways. He endured a hellish fourth grade last year due to bullying. I just had a meeting with his teacher this year and I think we are on to an easier year. I can at least hope. Its nice to know that it can turn out well for our kids.

Can you give us the link so we can read the entire abstract?

When he was really young, hitting, kicking, scratching, biting, head butting, spitting, pinching or trying to. We were able to hold him safely most of the time. As he got a little older and in elementary school, he added swearing to the mix, even though he used some words we know he did not hear from us. Telling us how much he hated us. We were terrible parents. Haven't seen that level of anger for several years now, thankfully.