purple66p

I take NAC. Vitamin C is 3x amount of NAC. It is to prevent kidney stones.

I'm a little confused as to what is the difference between tics and compulsions? My son has a lot of hand motions (almost like he's conducting a choir), but also table taps and half standing up then sitting down. He says that he has to do these things, as I'm sure most of you are familiar with, but isn't able to state what would happen if he didn't do it. Are these motions tics or compulsions, and how can you tell the difference? These motions have really ramped up over the weekend and yesterday. He was out of town 3 days last week at a school camping trip (Yeah! First time to stay away from home!!). When he got home, tics were much worse. However, he finished his antibiotic (amoxicillin, 30 days) just before going on the trip, so I can't tell if the ramp-up is from going off of antibiotic or a response to the stress of the trip. I feel like I'm in a holding pattern. We sent off blood yesterday to Dr. Cunningham so I'm eager to see the results. We have appointments the first week in Oct with a neurologist and then with the doctor that identified Pandas as a possibility (high strep titers) but only prescribed doxycycline. I asked for augmentin at the next appt but got amoxicillian instead. Now, after reading the forum and lots of articles, I will be better prepared for my augmentin argument!

Many psychiatrists (my son's included) do not look for causes, such as an autoimmune reaction to an infection, but rather just find a label to slap on the kid. Then they have a list of medications that they can throw at the child because that is the "treatment." They are consigning kids to a lifetime of symptom management, not recovery. My 13 year old son was "diagnosed" as bipolar and OCD at age 7. (Age 7!!) We've been traveling the medication merry-go-round for 6 years. I wish I had known about PANDAS and medical causes for "mental illness" earlier instead of wasting half of my son's childhood.

Definitely a problem for my son as well. He has extremely slow processing speeds (< first percentile) and poor short term memory. One of the most frequent triggers for an explosion is "forgetting what I was about to say [or do.]" This happens several times a day. He also complains that "my brain is not recording this." I think that is his description of brain fog.

I am so thankful for this board! It is so nice to "talk" to people experiencing the same issues. Every box that comes into the house has some super-important, imagined use for some vague time in the future. However, we solved this one! One of my son's chores is to take out the garbage and recycling. Getting paid $5 a week is a great motivator to take those boxes out! If we give my son some kind of excuse to let go of a compulsion it sometimes helps.

We've just been invited to join the Cunningham study and I'm wondering how everyone went about getting the blood drawn and prepped for shipment? Were you able to go to a commercial lab and have them do it without a doctor's orders? We live in central Texas and there is a lab called "Clinical Pathology Labs." Has anyone had luck with them? My mom is a clinical lab manager, but she lives 800 miles away! I am eager to get the results. We have an appt with a neurologist coming up in early October and I want all the information ready and waiting! So far all we have are ALL the symptoms and positive strep titers (with no known strep infection.) CJ

Mine did, too, this very morning before the first day of school! I share your joy. He also let me cut his hair last night, which is often a huge battle.

I have read that fish oils have an immunosuppressive effect. I am concerned that my kid is immune compromised and doesn't fight off infections (such as strep) properly and that, while the short-term anti-inflammatory effect is helpful, it may in the long run reduce immune system function. I keep vacillating on whether or not to use fish oil supplements. Sometimes I think the Internet just causes more confusion! There is so much information out there and sometimes it's hard to filter out what studies are the most important and relevant to our situation.

Is this a blood test different from a CBC? My son's hemoglobin, hematocrit, and RBC are all low. I've been watching them drop steadily over the last 4-5 years, but this last test is the first where it dropped below the normal range. When I brought it up to doc last week, he indicated that it should go up as his immune system recovers and didn't recommend iron supplementation at this time.

Wow! Too many to count. Here's a partial list: OCD: Never let the microwave timer go off! Separation anxiety: Since he sleeps on a mattress on our bedroom floor, let's just say we visit the spare bedroom a lot. Anxiety: Stairs are good exercise! Tics: Corner table at restaurants keep from disturbing others. Scheduling: OT, Speech, Psychologist Sensory: Always have a plastic fork handy. School$$$: Started private school last year because public was just beating him up too badly. (This one really bums me out because we're having to cut back on how much we help our 2 kids in college. They'll pay for this with massive loan debt after they graduate.) I could go on forever...

My son was prescribe Prozac for severe depression. He reacted horribly to it--lots of anger and out-of-control behavior.

Wornoutmom (love the name!): No, we're fair-skinned, live in an extremely sunny area, and my son is a little chunky but not extremely overweight. His body does not appear to be converting the sunshine to vitamin D. Momoffive: I'm not sure about the cream. The way it was described to me is that the vitamins are not absorbed right in my son's gut and therefore directly through the skin is better. Of course, that makes no sense for Vit D! The cream does include methyl folate, B-12, and B-6, all of which are supposed to help with methyation and that way boost his immune system. The way I understood the "alternative hypothesis of vit D" is as follows: Rather than low vit D being a cause or contributor to chronic diseases such as autoimmune disorders, it is an effect of the disorders. (Correlation rather than causality.) The body reduces 25-D (the one we usually check) but increases vit 1,25-D. It does so to better fight off infection because vit 25-D is really a steroid. In the long run, steroids make autoimmune diseases worse, but in the short-term improves symptoms. Short-term studies show improvements of autoimmune with Vit D supplementation, but proper long-term studies have not been done. If anyone understands this better, please correct me! I believe this is also the assumption made in the Marshall Protocol for treating Lyme disease. I believe those on that protocol avoid the sun and foods that are supplemented with vit D. For those with concurrent Lyme infections, do any of you use the Marshall protocol? Has it had a positive effect on PANDAS? It's so hard to understand what is the best treatment for our kids and I don't want to do anything to make it worse!

Two questions: 1. What fish oils do you get your kids to take? I think we've tried about 10 different kinds and all have been rejected for taste or texture or fishy burps! Do you know of any companion foods that mask the flavor? Part of the problem is that my son is vegetarian and won't even try fish even though the rest of the family eats it. Has anyone had luck with flax seed oil? We have put that into smoothies in the past, but I never saw any positive effect so that has kind of tailed off. 2. I've see a little discussion about vitamin D here lately, so I'm curious about the other kids' levels. My son tested extremely low--15 nm/dl on the 25OH-D test. That surprised me since he had been playing outside quite often--usually without sunscreen--before he had the test. (We live in central Texas. Plenty of sun!) We are giving him 5000 iu of D3 daily as well as a vitamin cream that absorbs directly through the skin. How many folks had kids with really low Vitamin D? Do your kids play outside? Has supplementation helped? Also, someone gave me this article about vitamin D which has me worrying whether we should supplement it at all! http://autoimmunityresearch.org/transcripts/AR-Albert-VitD.pdf

Thanks for the article! I'm at a loss & don't know what I should do...Do I keep trying the amoxicilliln for 30 days, wait another 30 days for an appointment, then push for the azith?? I can't say if we've had any changes in the last week--maybe fewer temper explosions and slightly reduced tics but that might be the hydrocortisone or oxytocin. We started so may new things at once! I think I was overly optimistic about recovery once the problem is identified! From reading all these post, it looks like it will be a long road, but I do feel much more hopeful than when we were told that he has bipolar disorder and would have to take psyc meds for the rest of his life.

Can someone please explain what the clavulanic acid does exactly? My son's doc only prescribed amoxicillin (500 mg, 2xday) for 30 days. Are we wasting our time?

We've been taking the stairs for so many years now that I've just decided to embrace it as extra exercise. I don't even ask about the elevator anymore.

Hi Braveheart, I think we may be seeing same docs. Please see my post earlier today under "questions for doctor." We had our second appointment yesterday and are treating much more aggressively. Your post heartens me that some of the things we are trying might help! My son has been ill for 6 years and I'd love to "get him back." Please keep us posted on what works well and what does not for your son! CJ

Hi everyone, and thanks for the responses. Here's an update: We saw the partner of the previous doctor, and this guy seems to be fairly aggressive. 1. New antibiotic, amoxicillin, 30 days, 500 mg 2x/day 2. Add antivirals, Acyclovir now for 4 weeks; Amantadine starting in 3 weeks for 4 additional weeks (one is for DNA viruses and one is for RNA viruses) 3. Add hydrocortisone, 10 mg in the am, 3 weeks 4. Continue with B-12, methyl folate, B6, D. Add more vitamin D (5000 iu)(His D3 levels were EXTREMELY low despite playing outdoors all the time!) 5. No change is psyc meds (Abilify and Lithium) I don't think he had an adverse reaction to these when we started them years ago, but any good effects were only temporary. I think it might be prudent to stay on them for a while longer and doc didn't mention changing at this point. He did mention that lithium is an anti-viral. We have lowered dose on both of these over the last 4 months. He had a really, really bad reaction to eliminating Abilify a few years ago. 6. No new testing at this time--we'll do that again in 2 months. 7. Oxytocin for mood regulation. Has anyone tried this? I figure it's harmless and worth a try. I'll let ya'll know how it works. 8. Diflucan for yeast after antibiotics are finished. I also have him eating a couple of probiotic yogurts a day, and probiotic capsules when I can talk him into it. Kid is rattling with all the pills! I also have an appt with a neurologist in mid-Oct. It took me 6 months to get an appointment! My understanding is that this guy is open to PANDAS. Hopefully he won't be mad about me going ahead and starting treatment with another doctor. Whew! My husband and daughter had all kinds of questions for me AFTER I got home. Of course, I hadn't asked them all...they should have gotten them to me earlier or come along. My daughter especially wanted to know exactly when he would be better (as if the doc could predict that at this point.) She's living at home and starting at Univ. of Texas in the fall and wants some peace and quiet to study!

I'm new to the idea of my son having PANDAS. He has been being treated for bipolar and OCD for 6 years. We have recently changed from a psychiatrist to a biomedical doctor because he wasn't really getting any better with psyc drugs. The doc is at Neurosensory Center of Austin and is the one who proposed PANDAS as a possibility. We saw him ~6 weeks ago. A rundown: 1. He did the strep titers and they were higher than the upper range, but not by much. My son has never had a strep infection that we know of. However, he has had problems with one ear for years that his pediatrician never could figure out how to get rid of--blamed it on allergies. 2. He started antibiotics 4 weeks ago, a type of Tetracycline. 3. He also started "methylation support" supplements. (Methyl Folate, Methyl B12, B6, Vit. D) He seemed to start sleeping better immediately after starting these. 4. No great changes in behavior (still yelling, temper tantrums, mostly in the evening), tics, or obsessions. Questions I have for the doc: 1. Why not the standard antibiotics for PANDAS? 2. I was a strep carrier as a kid. Should I and the rest of the family be tested? (Side note: I had step throat not long before my son's symptoms started.) 3. Should he start prophylactic antibiotics? 4. Can we try a steroid burst? (As I understand it, this should be 5 days + taper.) Are there other questions or ideas that I should propose? Thanks for sharing your experience. CJ

I just want to encourage everyone to go ahead and get the counseling that you need. (And possibly antidepressants or supplements, if necessary.) It has helped me tremendously. I went into therapy and told the therapist that my goal was not to ride the up and down waves that my son rides. I needed to disconnect my mood from my son's so that I could respond thoughtfully and calmly. I'm not saying that I'm always as calm as I wish I could be! But, it has helped. I understand what you mean about school starting back! The exposures as well as the stress to "appear normal" is so hard on our kiddos. My son is usually so wiped out after the school day. Ugh. I hate homework!

I'm so happy to hear about your positive results from antibiotics! You son sounds soooo much like mine. He was diagnosed with bipolar and ocd at 7 yrs old and now he's 13 as well. He acts like he's 8 or 9, and plays with younger kids in the neighborhood. He's been through so much pain at school because of the kids in his classes picking on him and making fun of him--the girls were the worst! His lack of social understanding, obsessive talking about topics of his interest, as well as constant tics are hard for other kids to understand (especially middle schooler's!) He recently had a complete OT evaluation and his physical development (motor skills, strength, balance, writing, etc.) just kind of stopped at 8 years old. Once we get his symptoms better under control (we're 30 days into antibiotics now) then he's got a lot of catching up to do. We just found out that he's been accepted into a school especially for kids with learning disabilities, and I am hopeful that he'll make friends there with kids more like him. Does your school have a social skills class? Perhaps he could meet some kids there. I hope your son has a much better school year!

My son has been on all the antipsycotics (it seems)as we thought this was bipolar disorder. We started with Riperidol, and it had an immediate positive effect. However, effect started wearing off..increased dose...increased dose...until we finally changed to another antipsycotic. Next time: Abilify. Again, immediate positive effect...wearing off...increase dose...rinse and repeat. Then we tapered off Abilify and on to Seroquel, then Geodon. Going off Abilify induced a psychotic reaction--very ugly. He was suicidal, angry, and barely coherent. He missed a month of school. Back to Abilify...positive effect...wear off...increase dose...rinse and repeat. Now that we are thinking it is PANDAS, we're tapering off Abilify--very slowly this time--and pursuing this as a biological disease, not psychiatric. It is painfully hard to get off of these meds without inducing a bad reaction, so be cautious. Also, my son has changed from being a thin kid to overweight, and craving food--mainly carbs--all the time. Also, extremely bad reaction to Prozac. Won't go there again!

My son's tics have definitely gotten worse over the last year. We're 3 weeks into antibiotics and, if anything, they are worse. I know we get a lot of strange looks when we go out to eat! I've noticed that they come and go during the day, but haven't been able to identify a trigger or pattern. Unfortunately, he can't take Ibuprofen because he is on lithium. Maybe one day we'll be able to wean off the psychiatric meds. My son has been in psychological therapy for 6 years...sigh. We mostly work on anxiety and behavior in the hopes that reducing anxiety will reduce OCD and tics. The thing that has helped most lately has been starting OT and learning some relaxation techniques there.

Thanks everyone for all the info. Dog in question recently had antibiotics for skin--can't remember what but it was darn expensive! We'll keep and eye out, but have the rest of the humans in the family tested first.

We had to take our dog to the vet this morning and while we were there, asked for a group A strep culture. The dog has terrible skin problems--bacterial and fungal infections. :-( This is the second time this summer we've had to treat her. The vet stated that dogs could not harbor strep A. Does anyone have any additional information, or should I just not worry about the dog for now? Thanks!