datagirl

My son was on Concerta for several years. It's so hard when you begin to be unable to distinguish the illness effects versus the medication effects! I took him off Concerta this summer and finally normal bedtimes were restored!!! My son couldn't get to sleep or stay asleep on Concerta and all day long he would barely eat until dinnertime. Then he was famished, and would have to eat a second dinner before bed or else he'd wake up hungry shortly after finally falling asleep. He was so skinny that it looked like we didn't feed him properly. Once off Concerta, he gained 10 pounds in a matter of a couple weeks and looked healthy again. The Concerta often worked unpredictably and usually wore off before we could even begin homework. On Concerta, rages and meltdowns ensued almost every late afternoon/evening and were lengthy events. Now off Concerta and trying Intuniv but the benefits first seen may have waned, and he is tired during school and often taking a nap (8 years old). Still have behavior issues, which improved greatly during a recent round of antibiotics following exposure to a sibling with strep. By the way, we had depression issues, elevated fears and emotions on Concerta/Ritalin, etc. The depression issues may or may not be medication-related. The elevated fears and constant crying meltdowns, etc though have subsided since stopping Concerta. Good luck. It's so tough to find the right balance for daily living and long-term success!!

Just sharing this in case it is useful to someone...I wasn't aware and stumbled upon this. I guess PANDAS has been listed as a covered condition for IVIG for some time. Soooo frustrated that my company is switching away from UH before we can get IVIG. Aaarrrgghhh! https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Drug%20Policies/IVIG_policy.pdf Anyone with tips/advice on getting IVIG covered with Humana or AnthemBC?

Hi Darla, I deal with a lot of explosive behavior/low frustration tolerance with my son, who is 7. I also read Greene's book, and it is helpful. I've sought out a DAN doctor though, who did quite a bit of bloodwork tests. You should also read the book "Healing the New Childhood Epidemics" by Kenneth Bock. I couldn't put it down. The story of a little girl in there fit my son's behavior to a "t". A few days later we got the blood results back and my son had strep titers off the charts, just like the girl in the story. We are still working on trying to treat that (a disorder called PANDAS). Good luck, and hang in there...many people don't understand how it's soooo much more than just ADHD and soooo exhausting and stressful. Jen

How long was your son on the 250mg dose before going to 500 mg of zither? How old is your son and how long do you suspect PANDAS was present before starting zither? My son is on a lower dose just over a week now and I haven't seen any improvements yet. In fact we have had an exacerbation lately.

YES!!! I was talking about the same thing today. Yesterday I was in tears standing outside my son's door as he raged, cussing, screaming, threatening, throwing things...then he heard me sniffling and asked who was doing that and he was suddenly sorry and calm and sweet. I commented to his dad today that he can sustain like an 80% level of aggravation/irritability for infinity but sometimes just going all the way seems to be what brings relief. While I'm VERY relieved that the calm happened, I'm also very saddened to think about what he goes through. It has been the Roughest 2-3 weeks we've had in a long time. My son is 7. I hope some other parents have some input!

You should also read the book by Kenneth Bock - "Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies." I found a DAN doctor from the Defeat Autism Now website and that has been my starting point. I believe in focusing on the health of the immune system, so I second the other poster that recommended finding an immunologist. Good luck, and trust your mommy gut!!! It's sad how often the little idiosyncrasies or symptoms are ignored by regular doctors and only the big symptoms are treated. I believe is often the unusual symptoms in the collection of symptoms that help us solve what's really going on. Maybe I've seen too much of the House tv show!? By the way, anyone know how to get a hold of those writers? Wish we could get PANDAS as an episode on House to increase awareness!

Hi, my nerves were frazzled when I wrote the other night, so I hope I didn't come across as harsh. I can't even imagine doing so many activities, because with three boys and as a single parent for 5 years, I had more than pushed our limits having all 3 of the boys in baseball. The baseball schedules here are rough....nights when we were at the ball field for games until after 9pm on a school night! We had baseball 6 nights/days a week, and often overlapping games and practices in different places. Baseball was rough on my 7yo...in fact he so badly requires ADHD med during the day and that would wear off by practice time or game time. When the medicine wears off, or before it starts working in the morning, my son is almost non-stop verbal (and hyper to go with it), and loud at that. It could be complete nonsense over and over. Since my son has been symptomatic for so many years, I've never been able to seriously consider all the activities I'd like to be able to see them do. I am glad you got to see your son in the play! I decided to not even stress my son out with it this spring - just played hooky for the play, pretty much. It was just too much stress for him and thus the family. I know that all that dedication you showed to helping your child achieve will be just as useful and well served as dedication in helping him to heal and be the best he can!! We have just started on the zithro, so I am still in the "waiting for results" stage!! Boy, I hope he gets some relief soon! I also took him to a chiropractor yesterday. I keep digging for root causes. His immune system seems to have been dysfunctioning from birth basically, with prevalence of ear/sinus/eye related infections and issues from month one. Well his neck was really out of alignment, which can affect the CNS, so is is going to get adjustments several times a weekly to try to correct that and rebuild his neck muscles. We have been on the zithro for only 3 days - I will let you know when/if I start seeing results. The doctor didn't indicate a change in dosage for the maintenance, just a change in frequency to once weekly. I'm not sure if this is the recommended or best maintenance routine, though. I am concerned about the potential for C. difficile. Did you know that CDAD (clostridium difficile associated diarrhea) can present up to two months after taking zithro? Better to be safe than sorry if you suspect issues, because then I think you will need to get another type of prescription for that. Personally, I would absolutely recommend a high-quality probiotic along with any antibiotic routine. My doc prescribed 20 billion CFU, but I know others recommend more. I personally avoided a probiotic with streptococcus haemophilus in it. Also, personally, I think activated charcoal pills are one of THE BEST things I've ever discovered! It is great at binding nasty things to it for elimination from the body. I have taken it when a stomach illness has started to hit, and when I thought I was going to be violently sick for days, I was able to nip it within hours, for the most part. Must be careful though because it will absorb the good stuff to, so probably best to take at night well after any/all meds/supplements. My DSO also took it when he was very sick with what he thought was food poisoning and got better that day. As far as checking pH levels, I purchased strips at a Health Foods store. I don't know how valid the urine pH test is though, and haven't heard anyone else mention it. Vaxa makes a Buffer pH product that I sometimes take...and I notice I feel less achy in the morning when i have been taking it and my pH is less acidic. Let me know when you start noticing improvements! We've been on zithro a few less days than you are, and I am anxious for results! I hope your little guy feels better!

I have to admit, I was shocked when I read how much you pushed your seven-year old son to achieve. Really bewildered! BUT you must NOT let yourself get overwhelmed with guilt - you must be strong to care for your son. You must not shrug it off and accept that as your son. You must be the fighter and disregard what other people might say or think. Mothers know their kids. Mothers know when they change and mothers (dads, too!) fight to restore their kids health, happiness and well-being. I think that almost everyone with a PANDAS kid can find a reason to feel guilty. I myself should have persisted against the doctors before, or had time/diligence to find a DAN doctor before now. I went over 5 years knowing "something" happened when my son was about 18 months, but just got the PANDAS diagnosis about a week ago. I look back through my son's medical history and lament over numerous things. But I spend much more time looking/searching for ways to help him! I think our doctor is much more reserved with the azithro dose that most that I see on here, which I am concerned about. She first prescribed 5mg/kg body weight, which I think is not enough. The zithro insert itself doesn't reference 5mg/kg dosing for kids in our age and range - the recommended dosages start at 10mg/kg. I also read that a double dose is used the first day and then regular dose subsequent days, but all of those are 3-5 days usage only. Our doctor prescribed 2 full weeks of zithro of daily doses, then weekly for 3 months. I, too, would like to hear more from others as to what dosing amount and schedule that have found effective, as well as what has not been effective. Interestingly, I also read in the azithro insert that pH affects the performance of the antibiotic. Anyone on the board here testing their child's pH levels? I know I run acidic normally, but my son has fortunately been on the alkaline side when I've checked him lately. Good luck, I have a 7 yr old son as well!

Just curious - anyone else have an increased incidence of Ringworm in their PANDAS kid(s)? My PANDAS child seems to get ringworm every couple of months while the rest of the family does not. Seems unusual, and a sign of something? Anyone else see the same thing?

In Texas, you can claim exemption for "reasons of consience, which may include a religious belief." You request the forms from DSH and checkmark the vaccines which you exempt your child from. The form must be notarized.

I love the Symptomology Whack-A-Mole phrase! So fitting of what I think a lot of us go through! So happy for you that you are off the prescriptive psych meds! Boy, do I hope I can say the same next year!!!!

Oil of Oregano, along with Pau D'arco, are very common in herbal anti-candida supplements. I took an herbal anti-candida myself and wasn't familiar with the Herx reaction, and couldn't figure out why I was so sick for almost 14 days...until I figured it all out. Apparently I was taking too much at once. Nonetheless, indicates that it works!

I couldn't agree more about wanting the software to track behaviors, etc. Since we keep adding supplements, and see the ups and downs, it's often hard to tell what all is going on. There is an iPad/iPhone/Net app called MyNetDiary that has helped me some, but it doesn't have plotting for behavior. Maybe if more people requested it from the developers, we'd get somewhere. You can track all the food intakes though, and I add supplements as a custom "food" so that I can track the time it was taken. You can also track hours of sleep and other things.

Keeping my fingers crossed for you! What Zith dose did you start out with? We are about to start zith to treat PANDAS. Dr. prescribed 1-1/4 tsp 100mg 1x/day for 20 days, then weekly dose for 3 months. My son is 7, weighing just under 48 pounds. Anyone have any dosing advice? DS was also constantly on abx from birth through several years for ears and upper respiratory infections - never seemed to clear up well.

I hope things are getting better for you! My son completely lacked impulse control, especially disregard for safety. Vyvanse didn't do us any good. We've been on just about every ADHD med there is over the course of a year and a half. He would also go through cycling of rages, and there was nothing we could do except let him cycle it out. His eyes would be completely dilated as well. We just started seeing a DAN doctor and found out my son has PANDAS. Have you had his Strep B antibodies tested (ASO and AntiDNAse)? Other infections can cause similar issues. If the TS and OCD was sudden onset, you'll especially want to have it checked. Blessings to your family, I know how worrisome and exhausting it is!