qannie47

hrosenkrantz: I did not know. Prayers to you as well. That is wonderful news for you! Thank you for sharing. powwow: Thank you for sharing as well, and for the dr.'s name. I will pass all this along...

I reach out to this forum because of the vast numbers it reaches, as well as the inspiration I have seen it offer. Someone close to me has a family member whom was just diagnosed with Triple Negative Breast Cancer. She is a mother of 2, ages 3 and 6 months. Because of the nature of this type of Breast cancer, she is convinced she is going to die. It has spread to 1 lymph node. Do any of you know of anyone whom has survived this kind of Breast cancer? She needs inspiration. We just cant have her thinking this way.

I think that we parents have been conditioned to notice every little thing in the quest to heal our children. I think those little benign things often lead to a big aha, discovery. So thank goodness our radar has become so fine tuned. Interesting about the body odor.

Anybody have any thoughts as to why Omega and like supplements could cause tics in kids? Calling all Methylation experts.....

That is great news!!! With any luck we will become like our own mother's when our children get older and tell them that we don't remember if they "cried" much as babies!!!!!

Did they do a steroid IV during / before surgery?

A lot here report reactions to sugar and Pandas with their children. Mine does not. I read recently somewhere about how sugar and Pandas are not friends, something about it's effect on T cells...I read too much to remember where and when right now and exactly what it said...sorry. But for your child, it will have to be a parental clinical decision. Yes, their is definitely Lag time with flares. I have never read an explanation that fully explains wax/waning. I think there is a lot of good theories at best. My own experience and what I have learned is this: Sometimes the wax/wane is a part of recent flare. Sometimes is a whole new episode because your child barely recovered and was hit with new Illness or just exposure. Sometimes it is just stress because stress can turn on the immune system. When it comes to these wax/wane issues, what has helped me from going crazy is the understanding that anything that can cause an auto-immune response can cause little wax/waning or even a full blown flare. ABX: I would wait until he is non symptomatic and returned to his/her own baseline of normal for a couple of days. Is he/she on prophylactic dose? Yes, you can give Motrin with abx. As far as your own stress: Have a glass of wine...that is what I do... Best Regards....hang in there...

hrosenkrantz: do you know if the omega supplement contained ALA? Just thought I would throw that out there since when I checked my other omega supplements they also contained ALA. As I hoped, My ds was dramatically improved today with no ALA given this morning. Had a great school day as well. Past experience told me that it leaves the body very quickly, at least with my ds. Right as rain.

hrosenkrantz: do you know if the omega supplement contained ALA? Just thought I would throw that out there since when I checked my other omega supplements they also contained ALA. As I hoped, My ds was dramatically improved today with no ALA given this morning. Had a great school day as well. Past experience told me that it leaves the body very quickly, at least with my ds. Right as rain.

Vayarin: Interesting. I have had my non-pandas son on 5htp and the results have been rather amazing for him. 5 days ago, I added Omega3/Vit D to his supplement regime. While the ALA that is also in this supplement cause big tics in his Pandas brother, I have noticed a higher level of calm, lack of impulsive behavior, and even happier. I thought I was just imagining the positive change in him and truly did not attribute it to the Omega 3...perhaps it is making a difference in him. He is not off the wall adhd, so maybe the omega 3 supplement is enough for him. Thanks for sharing.

I get that, my ds would flush as well when he was doing nothing. That being said, he is not my Pandas child. I am glad though that you have found something that seems to serve as a for warning. For my ds, he will complain of a headache right across the front of his for head. Within 24 hours, his Pandas symptoms always start. You might want to think about using his flushing as a warning that a flare is possibly to start? Perhaps try Motrin and see if you can head off inflammation or prevent it from getting worse?

Have you had your neurotransmitter levels checked? I think I would also do the Cunningham's panel as well if you are going to consider psyche meds. I don't know a whole lot about it, but It seems to me that is looks at dopamine levels amongst other things... I tried 5htp (which increases serotonin) and it had no effect on my pandas ds at all. Not trying to persuade you in any direction, but thought I would share that. As I have read and cross read much material about Pandas, I cant help but wonder why serotonin is the focus. I admit I am no doc, but to me it seems that it is the dopamine that is the problem. Perhaps this theory has been addressed and put to bed by the experts and I missed it, but it is the dopamine that jumps out at me.... Has anybody used meds that specifically address Dopamine instead of Serotonin? I would love to hear feedback on that because I have always wondered about that... Dr. K, is of the opinion that too much Serotonin can cause havoc with Pandas....again, just sharing his opinion.

A comprehensive list would be helpful. Just remember, what works for one child could be detrimental for another. It is trial and error unfortunately. I know that when starting down the path 2 years ago, I was overwhelmed with where to start from a supplement point of view...perhaps someone in this forum would be up to the challenge of putting one together?

I have followed this dreadful story as well. I will be there in prayer.....

My Pandas ds has a twin brother. He flushed all the time. Especially when he was getting sick. One time the culprit was fifths disease. He also runs hot, both my kids do. Both have sensory issues and it seems that any parent I speak to with sensory kids reports children that are HOT. I have wondered if the anxiety that they can be under because of the internal mismanaged sensory input is the culprit. As we have reorganized his sensory input I noticed his flushing issues have diminished. I know that when I am stressed....I am hot.....just a thought.

Alpha Lipoic Acid. I double checked with the pharmacist and he said ALA is Alpha Lipoic Acid. Yes, I am sure it is the culprit. When I started it this past fall, that was the first time I saw BIG facial/motor tics. When I removed it from his diet . They stopped in 24 hours. Then to make sure, I added them back in and in 24 hours or less...they reappeared. This time around, it was an accident. I bought the Omega 3 with vit D and failed to check what else was in it closely. It was the tics that caused suspicion. Sure enough...there it was ALA. I gave him these supplements in the morning,but not today. I recalled that in the past ALA left his system pretty rapidly and his tics stopped rapidly as well. This morning, I saw no tics or motor movements at all, although some might crop up during his day, he should be in great shape by tomorrow. I like the Omega 3 and Vit D3 because of the brain support/healing claims..... I also checked his other supplements that he used to be on, and low and behold, there was ALA in the another brand that I used to gibe him that was specifically OMEGAS/Fish Oil....so I now wonder if his FAll episode was being influenced by that as well. He was truly off the charts ##%%#@### I think that I am just going to stay the course of no supplements, since he seems to have done so well without any of them. I am pretty good on making sure his diet is well rounded. Perhaps just the multiple with extra vit c. I COPIED THIS FROM WEB MD: Alpha-lipoic acid or ALA is a naturally occurring compound that's made in the body. It serves vital functions at the cellular level, such as energy production. As long as you're healthy, the body can produce all the ALA it needs for these purposes. Despite that fact, there has been a lot of recent interest in using ALA supplements. Advocates of ALA make claims that range from beneficial effects for treating conditions etc...

AS shared, my ds has been doing well for some time now. I also shared that I realized that ALA causes vocal tics in my ds so I of course stopped. With his recent tonsillectomy, we were told to remove all supplements, even his multiple. He has done great. I thought it was time to start adding some back. So I was thrilled when I found an omega 3 supplement that also had d3 in it. It was a chewable by LIL Critters. Today, my ds was off the charts with motoric movements and a lot of vocal tics. Just came out of the blue. I thought perhaps he was reacting to a rather impressive bump on his head he received during gym today. I also decided to double check the back of his new omega 3 vitamins...sure enough....they have ala in them. Down the line, I really have to do the 23&me.

Oh this strange strange disorder! For the last 2 years, I have gone from being completely stymied as to why my son would wax/wane his way through life since this all started. 2 years later, time and education has lended itself to understanding all of this. My son has exhibited full blown flares that lasted weeks, popcorn flares that vanished in a couple of days, to intermittent flares that lasted only a couple of hours...For my son, it seems to be indeed true that a scrape on the elbow can express itself with Pandas symptoms for a day or 2. I have seen him react to stress and become symptomatic. By that I include even good stress....excitement over his birthday party, the idea of Christmas. I have seen him react and recover over and over again to cuts, emotional stress, colds, even allergies. What is very apparent to me is that once this disorder is tripped off, it has a life of its own. It just takes something to trigger the immune response. It seems that until complete recovery, when the BBB has healed, the T cells are no longer misguided, the T cells leave the brain, the brain and autoimmune system has matured, we can expect the wax/waning to be apart of his life. What I am grateful for is that we are not completely helpless. Things like motrin, abx, ivig, steroid, supplement therapy, proper diets, methylation, have allowed all of us to take some control over the situation. Thank God.

I agree. For example, ds with Pandas experienced no benefit from the supplement, 5htp, but his twin, non pandas, and a little add experienced great benefits from it. Better focus, less impulsive, and brighter mood. When I have read about the various neurotransmitters, it seems that too low/too high can cause the same symptoms. Also, I wonder if the key difference between a clear cut add or adhd issue and Pandas might lie with brain inflammation. If the brain is indeed inflamed, regulating the high/low of any neurotranssmiter, or manipulating the receptor sites might not matter, because the receptor sites will mess up the intake either or. So taking a something that increases or decreases transmitters would not help. That being said, i think adhd or add is just a symptom of what the real problem is....but I don't rule out different etiologies.

I notice when in a flare, everything goes downhill with my ds. It has got to be that when the brain/receptor sites are inflamed that it messes with the ability to focus. Memory issues must be at play here as well, and that can play a huge role is what looks like regression in math. I used 5htp with both my kids. My pandas child received no benefit from it. My non-pandas child, whom is a little add benefited greatly from it. It increased his ability to focus. Each child is different, so perhaps your child might benefit from it?

My son had white pathch's on his tonisls and tested negative for strep last year. He was diagnosed with Tonsilitis and had it for 6 weeks. Also, I am sure they sent it out to the lab, I believe they always do, so wait for that result. Does she have bad breath? Another indication that something is up.

For the record....I truly dislike your school...I agree with momwithocdcon Hang in there!!! Then I would go for the throat.

How about Dr. Najaar? I believe he is in your neck of the woods, and I have heard great things about him.

ibcdbwc, what allergy medicines have you tried? Different brands of allergy meds will do different things. For myself personally, most allergy meds will cause heart palpitations for me and cause me to feel like my skin is crawling. Check the label. Bennedryl is one of the allegy meds that don't have that affect on me. Also, I'm too tired to double check, just got home from work... but I think in the article that I posted, said that the histamine levels don't always translate to allergy problems. If not in that article, I read it in another related one talking about histamine and behavior...

actually, I was experiencing the same problem of being signed out....have not experienced it over the last couple of days though. This was from my laptop. I assumed it was my computer as I was having the same problem with my gmail account. Still having gmail issue.