peglem

Well, that might explain some of the symptoms you've been seeing.

Do you think he's cranky because of the medical effects of the treatment, or just because he's bored and tired of being there?

Thanks for the link. I've never really thought about it before, but I think you're right. Somewhere in her journey Swedo was put on the defensive...kinda like parents of PANDAS kids when we can't find help. I wonder how open she would be to help.

Yes, every 3-4 weeks. Have you guys quit IVIG, or will that continue post PEX?

Thanks for keeping us posted. So glad things are going well!

I don't know if there is a connection between fungal/yeast infections and histamine, but these anti-acid drugs work by blocking histamine receptors (H2, in the digestive tract) that are responsible for triggering acid production. So, not necessarily proton pump malfunction-

Prayers from here. Can't wait to see improvements!

My thoughts- do full treatment dose until symptoms subside and then cut down slowly until you find the lowest dose that keeps symptoms away. We've done "pulse dosing" with zith and have found what works with my 115lb kiddo is a loading dose of 500mg/day for 3 days, then 500mg every other day to maintain tissue levels. Dr. L told us 2 years ago that 500mg daily is quite safe and used frequently for pediatric AIDS patients.

My oldest (not PANDAS) son had febrile seizures as an infant and toddler. They were very scary. I just gave tylenol around the clock at the 1st sign of illness. He outgrew them by about age 6. Prophylactic sulfa drugs were tried, but he developed an allergy to them. That being said, I'd get his thyroid gland checked out and check for thyroid antibodies as well. Thyroid hormones are supposed to control the rate of temperature rise and the body's adjustment to temperature fluctuations.

We get 1.5g/kg every 2-3 weeks. About 6 months in we began doing 1 day infusions and my daughter tolerates it very well. The infusion takes about 6 hours. That being said- they do begin the infusion very slowly and do gradual increases- checking continually to make sure she is handling it okay. I think the 1st infusion at least, should be planned for 2 days since you do not know yet how well he will handle it.

Doesn't the "N" stand for neuropsychiatric? I thought the tics fell under neurological.

The risperdal sublingual tabs- as low as .5mg did work well as a rescue med as long as we didn't use it too much. Also, have had rx'd diazepam (valium) for several years now, which is fairly fast acting- does not need to build up in system.

Yeah, it seems crazy to want your child to have positive test results...But, you're not really wanting your child to be sick...you already KNOW he's sick. You just want some evidence of illness that the doctors will find more believable than "mom knows."

Well, we've got other issues besides PANDAS, but we've not really had any success with psych meds at all. Okay, I take that back- risperdal helped initially, but I think that was just because it finally helped her to get some sleep. A few months down the road, I think it made things worse, or at least stopped making things better. For awhile we used the melt in your mouth sublingual tabs for an "as needed" rescue when she would have fight or flight, self injurious, aggressive, ragey episodes. It worked pretty well for that, except she'd kind of go through withdrawal as it wore off. Ultimately, it seems the psych meds made it confusing to know if the symptoms were PANDAS or med side effects.

We did this several years ago. My daughter was 12 and weighed @65lbs at the time. I believe its called pneumovax and its used as a test because they have standardized response rates. I looked up the vaccine at the time, before it was given and if I remember correctly, it did not contain any adjuvent or toxic ingredients. The doctor took a baseline measure of the (I think it was 23?) strep pneumo titers before the vaccine. Then 2 or 3 weeks later took another titer check to measure the immune response to the vaccine. There was hardly any response- so we actually revaxed and there was an adequate response the second time. My daughter did not suffer any adverse effects. But 2 1/2 years later, the titers were again non protective, and that played into our finally getting IVIG. The doc may need some evidence of immune malfunction to get insurance to approve IVIG.

Yeah, our problem has been that professionals keep sending everything to behavioral health instead of figuring out the medical stuff causing the behavior. This was so refreshing! And, I think the neuro was thinking that if the naproxin (or ibuprofen which we use instead sometimes)doesn't help, its not a regular headache. It was very exciting to see Allie get some relief when we used it.

Well, I don't think it was really off label- she saw in the office a meltdown that looked to her like my daughter was in pain. For @ the month prior, my daughter had been having these spells where she was screaming and thrashing about and it looked like pain to me too, but since she can't talk... Anyway, the neuro prescribed it, thinking that if it worked, then she would know if it was pain or not. We have 12 low doses to use for the month. I called to clarify "as needed" (cause it seemed like she needed more than 12 doses because this was happening a few times a day). We were told we could give a dose, then if she needed it 2 hours later, another dose, but not more than 2 doses a day and not more than 3 doses/week. The good news is...she hasn't needed it after those 1st three doses in the 1st 2 days (those 3 doses combined were just 3/4 of the maximum allowed in 1 dose). So, I guess it broke the cycle! My daughter is already on rx naproxin, which was not preventing these. The neuro did say to continue the naproxin, and use the imitrex if that is not sufficient.

Here is a link to a study done in Turkey including the treatment of 4 young adults who were not treated in childhood. http://www.turkpsikiyatri.com/C18S3/en/therapeuticResponse.pdf

I know this wasn't addressed to me, but... I wasn't offended. Honestly, we've been at the point a few times where placement seemed like the only viable option. I just can't do it. I can't give up trying. I AM afraid, and its not so deep down. I feel like I'm racing the clock as my time on this earth grows shorter- who will care enough to keep trying for my child? I pray that I have enough time to get her to a place where others can care for her so I can die in peace.

I do feel this way sometimes. Right now my goal for my daughter is to keep her out of group homes. Try to increase quality of life. It does suck to be me...very painful to see my child suffering so much, knowing that something could have been done to help, if only somebody had known what to do. But, The brain does continue to learn, to lay new pathways. Its not completely hopeless...just very difficult. Yes.

When this forum began, I was struck by the similarities between the symptoms people described for PANDAS and what I knew about autism from many years already involved with that community. When PANDAS was discovered in my daughter, I sought to understand what exactly PANDAS was doing to her brain. The info I was getting, while not conclusive (but the opinion of Dr.s Cunningham and Latimer, as related to our pediatrician), was that the antibodies were causing false signaling in the basal ganglia, but not destroying tissue. Then, looking, in hindsight, at my daughter's abnormal development (she was my 4th child and I've taken courses in early childhood development, so know what should have happened), it just makes sense that the pathways and connections she was making were grossly affected. She was not treated until she was over 10yrs old- very little normal development occurred- so baseline is still pretty wanky behaviorwise- I think that's because she doesn't have the pathways laid down to revert back to. I think (just my opinion) that if you get it later, you'll still have to deal with whatever erroneous pathways and connections have been made during an episode (like residual OCD), but the older pathways are still there and can be accessed and restrengthened. Also, if you look at the function of the basal ganglia- sensory signals coming from the body go through it to the brain and the basal ganglia fine-tunes or modulates the signals going back out to the body to act upon the incoming info. So, you can see how false signaling in either or both directions could really mess things up. Just take handwriting for instance, the visual signal goes through the basal ganglia (as well as the touch sensation of fingers on pencil/paper)and the signal from the brain responds with instructions of how far and what direction to move the pencil, how tightly to hold the pencil, etc. The basal ganglia simultaneously compares the incoming and outgoing signals and adjusts the outgoing signal to match the incoming. See how this could mess up a child's handwriting during a PANDAS episode? But, what happens when the child tries to learn to write during a PANDAS episode? My guess is the brain lays down some pretty bizarre learning/memory pathways. When the episode is over- the child with previously normal pathways, has those to go back to. But the child with only the bizarro pathways has nothing to go back to.

RDI, Relationship Development Intervention rdiconnect.com A coach teaches you how to very deliberately guide development in your child in a natural developmental progression and monitors progress.

I would try valerian root for anxiety. Its an OTC supplement and is very relaxing.

Sorry, I'm in a kind of doom and gloom situation today. Didn't mean to bum anybody out. Here's the hopeful piece: People's brains continue learning (building new pathways and connections) all of their lives and there is a program out there that specifically addresses missed development. We started down that path but can no longer afford it. Once Allie is 18 we should be able to start again.

Well, I don't think IVIG is by and large a cure for autoimmunity. That being said, PANDAS seems to disrupt the same neural pathways that are affected in autism. Treatment that addresses autoimmunity in autism (if that is the root) addresses the autoimmune problem, but it does not correct faulty development. Children who had normal development(built regular neural pathways) and then are stricken with autistic like symptoms have those developmental pathways in place for when they recover and often are able to pick up where they left off. But, if a child is stricken w/ the autoimmunity before the normal developmental pathways are built they develop abnormal pathways as a result of the disruption and have no "normal" to fall back on. This is my theory, based on what I have learned about child development and what happens in PANDAS. I do think my child's autism was caused by an unrecognized, untreated immune problem that began in infancy or maybe even in utero.