nicklemama

What is more amazing is that pediatricians (and doctors in general) are so reluctant to give our kids abx but farm animals are the primary users of abx and then we eat it in our food. Oh, the irony.

I will echo Dedee, your grandson most likely has OCD as well. The rage is a dead giveaway. I didn't realize my DS had OCD either. OCD does not always present in typical fashion in children. After I read the book Freeing Your Child From OCD by Tamar Chansky, I had a long list of obsessions and compulsions I recognized in my son, who was a huge rager. In the beginning, he had no tics. It took 6 months of untreated PANDAS before the tics showed up. My DS had raging when an ocd was interrupted.

Linda- There is hope....lots of it. My DS went a full yr w/out treatment or diagnosis and the rages were the worst part. We put him on lamictal to help w/ the rages and it did help, but this was before diagnosis. His anger and irritibility went way down after he had been on treatment dose abx for a while. It takes time for the abx to work. 7 months after diagnosis and starting abx, he had IVIG. Today, he is off lamictal, still on abx and no rages. Anger and irritibility only pop up occasionally, when he is in a flair. It is not too late. Call and see if you can get into the NIH study. Came back to add, you are right, there is NO reasoning w/ a raging child. You just have to let it run its course after it has started. My son had no infections that we knew of, at the time of diagnosis. His PANDAS was missed by a lot of doctors.

The only help I've gotten is from PANDAS experts. I've not had an appt w/ a skeptic but I got absolutely no help from any of the doctors we've seen, outside of Dr K and Dr T.

I'm sorry things are bumpy right now. I've been there. I remember before my DS was diagnosed and while he was raging at us, wanting to just get in the car and drive away and never come back. It was only a thought but I thought about it more than once.

Congratulations!!!!!! Having a PANDAS son who's illness was set off by FluMist, I would recommend reading Dr Bock's book Healing the Four Childhood Epidemics and I would heed his advice on vaccinations. I would do things totally differently, vax wise, if only I'd known.

My DS was diagnosed w/ Sensory Processing Disorder many months before PANDAS. He was a sensory seeker in that he was hyper, threw himself on the floor, ran into us full at full steam, touched everything, licked everything, smelled everything, and was dangerously thrill seeking by climbing as far to the top of our tree as he could get. He broke many, many small limbs. He also had OCD, severe separation anxiety, emotional lability, sleep disorder, tics, etc.... I think many of our children have sensory difficulties w/ PANDAS. It wasn't the worst of his symptoms, though. The OCD and anger/irritibility, raging was what was driving us to try and figure out what was wrong w/ him. My DS's OCD was not as pronounced as the anger/irritibility. Little did we know, the anger/irritibility was from being interrupted in his OCD's. There were many obsessions and compulsions we did not recognize as OCD until after the PANDAS diagnosis and reading Tamar Chansky's Freeing Your Child From Obsessive/Compulsive Disorder.

I don't know about a link but wanted to tell you I had a cat w/ stomatitis. There wasn't much to be done back then but give prednisone and amoxi. She lived to be 16 and died of cancer. I don't know what they recommend now but if i had it to do over, I'd have requested they remove all of her molars and maybe all of her teeth. It was kind of an 'out there' thing to do way back when in the mid 90's.

We went by Dr K's recommendation and that was to get back to school as soon as he could. DS had IVIG on Thur and Fri, was sick w/ vomiting and headache on Sat, headache on Sun, and went back to school on Monday. He did not have any problems.

I would see an allergist and confirm those allergies by testing. That appears to be 3 classes of abx. The option list is getting short.

We have BCBS PPO in Michigan. Doesn't require preapproval here. It has covered DS's one IVIG. I believe his diagnosis is/was post infectious encephalitis, but don't quote me.

I'm also thinking its not a true allergic reaction but a Herxheimer reaction to killing off bacteria, and maybe other things. I would keep giving the azith. My DS had a herx to amoxicillan when he was 3 and we thought he was allergic. When consulting w/ a PANDAS dr, he felt it was a herx. We decided to try Augmentin (its made of amoxi)for PANDAS when he was nearly 6 and he's had no further problems and no rashes or reactions of any kind.

You can call labs like Quest and LabCorp or call your insurance company. Your doctor should know which labs to send the blood. Most doctors favor certain labs. I've never had a doctor send out to a lab that wasn't part of my insurance plan. Have you never had blood work sent out before?

Dr T initially diagnosed our DS. He had IVIG in Chicago last May w/ Dr K. We have been giving DS Florastor (Saccromyces boulliardi) since Dr T started him on biaxin in Oct 2010. He takes one capsule, twice a day. We've had no stomach issues. DS is currently still on the augmentin that Dr K prescribed post IVIG. Prior, he was on azith prescribed by Dr T after a couple of months on biaxin. He's done really well. Each dr has his/her own protocol. Sometimes you have to take the best of several to make it work for your child.

Your son has been sick for a long time. A few days of abx and steroids is not going to be transforming. It takes time to heal from PANDAS. Its two steps forward, one step back. This is to be expected. Its a waxing and waning disease. The reason the doctors insisted your son was bipolar is his reaction to SSRI's. Psychiatrists believe certain reactions to SSRI's are caused by bipolar. My DS was prescribed Celexa at age 6.5. He became suicidal on it. PANDAS kid don't typically respond well to typical use and dosages of psychiatric medications. Hugs to you. Its been a long road but now you are on the path to healing. Just don't have expectations of dramatic changes too soon. One day at a time. You are in good hands w/ Dr B.

Insurance paid. Caution- Make sure to request a copy of the results be sent to you directly from the lab when you have the blood draw and then check to make sure the lab has done all the tests requested. It has been my experience and a few others, that sometimes the lab does not do all the requested tests, for whatever reasons. Some of the tests come back quickly. The more unusual ones take longer.

This is exactly how our son was before abx and IVIG. I think its OCD but I'm not certain.

Don't know about the brain histamine but but DS's IgG subclass 4 was high when checked about 1.5yrs ago by Dr T. We found out recently that he has significant allergies and he's on an antihistamine (claritin) and he's doing really well. I was told by Dr T back than that IgG subclclass 4 being high related to allergies.

DS has no deficiencies. He had/has high IgG subclass 4. He's had IVIG and doing very well. We have not retested him. He has been found to have environmental allergies and recently started on allergy meds. I was told the IgG 4 being high is related to allergies. We are currently waiting on the results of food allergy testing.

Absolutely better after IVIG. I'll try to keep this brief and concise. Had symptoms of PANDAS for 1.5yrs, w/ the last yr having every symptom in the book. It was awful. It seemed severe to us, but he could go to school and function. At home and socially, it was a nightmare. Started w/ OCD, anxiety, severe separation anxiety, sensory issues, sleep disturbances, etc... then developed tics. Mild symptoms started after a double ear infection and then abated. Had FluMist about 9 months later and he had overnight severe exacerbation. Remitted. Came back after another double ear infection. No remittance. Finally diagnosed. Abx for 7 months. Improved about 70%. After IVIG 10 months ago, we saw 90% improvement. Had flairs while sick this winter and reacts to strep exposure. Had allergy testing. Started allergy meds about a month ago. He's about 95% now. Doing better than we ever hoped for.

I have been taking minocycline. I saw my Dr today and he just added azith. My IgG has dropped from positive to equivocal after 6 months of minocycline.

I would not do it. My DS's PANDAS was set off by FluMist. I have been told by Dr K and Dr T that my DS should not ever have any more vaccines. Too risky.

I'd be really certain that it wasn't less going w/ your traditional insurance route. It is for us. We have a $2400 deductible. The difference between the standard lab charges and what our insurance allows as a charge is huge. DS had over $2000 worth of lab work done, according to the lab, but the lab was only allowed to charge us $150 and that went toward our deductible. We have BCBS PPO. Our insurance company contracts w/ labs and sets the amount of allowable charges for each test.

I have/had high mycoP IgG. I am being treated for it w/ minocycline. I've been on minocycline for 7 months. My last blood draw the IgG titers dropped to equivocal. I have rheumatoid arthritis believed to have been caused by chronic mycoplasma infection. My IgM titers are negative.

I believe it. My DS snored something terrible until he was diagnosed w/ PANDAS and put on abx. Snoring started around age 4 or so. PANDAS started at age 5. Diagnosis didn't come until he was nearly 7. He has also been recently diagnosed w/ environmental allergies and we've started treating that. The food allergy testing isn't back yet.