New Member from Northern VA - 8-yr-old PANDAS child

[cmilton]

I have an 8 1/2 -year-old son who has been struggling with PANDAS a very long time. We got a firm diagnosis when he was 5, when overnight he developed debilitating OCD. Our pediatrician tested him for strep, although no obvious strep symptoms existed, and he was positive. The antibiotic helped decrease the symptoms, but ultimately he had to do CBT to learn to live with "sticky hands." That year, he had repeated strep infections, and we only knew it due to his odd behaviors - frequent urination, licking his hands, spitting on his hands, etc. By October (he was diagnosed in January), we had his tonsils removed, to prevent reinfection. He seemed okay for a while, but soon enough the strep started coming back periodically. Fast forward to a year ago this past August - our pediatrician tested him for strep after he had started spitting, afraid that he had accidentally contaminated his mouth. His sleeves were covered with spit, because when he was inside he knew he couldn't spit on the floor. He also killed a bird. When I asked him why, he claimed it made him feel powerful. That strep test turned positive overnight, and the doctors never informed us. From August 2012 to February 2013, our son had a raging strep infection, which eventually led to psychosis. I took him to a neurologist during that time, who claimed not to "believe" in PANDAS, and who sent us to a psychiatrist. During this period of time, phobias and nightmares started taking over his life, to the point that he was shutting down. He started acting more and more autistic, although he had never been diagnosed as having autism. We went to the psychiatrist, who prescribed ADHD medication, which made him violent, and that is when things really deteriorated. He threatened to kill us and himself, and he started beating me on a daily basis - hitting, spitting in my face, cursing at me and my husband, and acting insane. When we finally took him to the pediatrician in February, they admitted their mistake and put him on antibiotics, which caused a remarkable decrease in behaviors. It did not fix the problems, however, and several doctors later we finally got to Dr. Latimer in Bethesda, MD, who gave him IVIG almost immediately. The IVIG made him worse before he got better, and he spent some time in the psychiatric hospital. At that point he was jumping out of the moving car, jumping in front of moving cars, and doing all sorts of dangerous things. We had to send my toddler to live with my sister for safety reasons. My son did improve, however, to the point where he was calm, happy, loving, conscientious, and we had a beautiful month with my real son. Today he is battling strep again, and once again he speaks of suicide and harming himself and us, his parents. It is heartbreaking. He has now contracted strep two times while being on increasingly powerful antibiotics. We are fighting with insurance to get the IVIG as soon as possible.

[3bmom]

I send out hugs to you. I truly don't understand what is happening to this generation of children. I am a bit older and one of 4, husband 1 of 6 and grew up in neighborhoods with even larger families. Children like ares' would not of been "overlooked". Sorry very frustrated to see another family in pain.

 

We have had a similar journey but have not done IVIG. Hospital gave us parenting lessons instead. We did find a Dr and our son is doing great. Sick over the weekend so on alert, so far so good.

 

From what I have heard you are with a fantastic Dr. Did he have any viral, mycoplasma or Lyme? What about diet and allergies? Our allergies were life threatening and we had no idea. We do Paleo/ caveman which a parent posted a great link under nutrition. Just eliminating dairy will bring down the rage and violence. There are rat studies showing this when I did research.

 

Grain also effects this since it has been genetically altered in the 80's. creating inflammatory proteins in the brain. A neurologist has written a book called "Grain Brain".

 

The next thing is we went organic with no GMO. His allergies then dropped to normal in 6 weeks.

 

Some here have had success without diet, our Dr will not take you as a patient. He has done immunology for 30 years. We addressed diet, next virals, strep kicked out easily then, and still have low mycoplasma. Mycoplasma is starting to drop as I address mycoplasma in me. We also are on prophylactic abx, virals. He takes an SSRI which is why I came to this website. He was not put on it until he was stable. Our Dr uses it to keep enough serotonin around for tryptophan to have kids back into normal sleep patterns. My son no longer is pale despite skating outdoors, dark circles are gone and he wakes up easily excited for school again.

 

Hang in there. Try to find 20 min for yourself. Hard but essential considering the stress of being on high alert. Please consider the dairy. 3bmom

[PowPow]

There are many people from the northern Va area. (including me!)

I am sorry you are having such trouble again, but it is great that he had such a positive response to IvIg the first go - round.

Are you able to consider t & a?