3bmom

First off I agree with Mom of OCD boy, blood work is number one. I am a newbie to here but not to PANDAS and I am talking from my own personal experience. We have had both the overeating and weight loss of 30 lbs in two months for an 11 year old boy. Both improved in 36 hours with either and/ or an antibiotic, anti- viral, and a steroid burst. At 6 the week he got PANDAS, (no idea) I would call my husband over to look at our son literally shoving food in his mouth. You would of thought he had not eaten for a week. At the time we also regressed to stinging pains in penis and bed wetting. All ignored by Dr.s and therapists. At 11 the thought pattern was if I don't eat "growing food" I won't get to tall. He was eating a little but no healthy food. This led to losing 30lbs and aggravated the problem since bad food increases inflammation and we ended up in the hospital. From this journey for me I learned over eating was probably caused by a hormonal inbalance of Leptin, the receptor that tells you you are full or inflammation in the brain responsible. Still don't know about the genital pain but have met a few moms who did the penile scope on their boys to no avail. Comes with the disorder. When he was 11 with anorexia too, beforeI got to an immunologist due to wait list, our pediatrician gave us a steroid burst. 36 hours huge drop in OCD and able to eat normally. Lasted about 6 weeks and then it came back. Finally at the immunologist, our Dr. Does everything slow and methodical. As a mom watching your child disintegrate this is very difficult but it does show you what is working. Blood work was done for multiple infections and allergies. Took 5 adults to hold him down. Fortunately the Dr. Was willing to work with him or he would be in a home. First thing addressed was diet. No dairy! Very adamant since in this immune state his Dr. believes you now have a predisposition for Diabetes. Not easy, my son craved ice cream, as in multiple times a day. I learned what they usually crave is what you need to take away. Fun! The immune response gives you a morphine like feeling giving relief to the anxiety until the next hit is needed. I found this to be true for every food he craved. The difficult one was corn because the blood panel said there was no allergy. Thru another mom I learned about GMO'S and over 90% of corn has pesticide built right in. Two different types, one blows up the stomach of bugs, what does it do to our gut? The other is systemic, can't wash off,and is a neurotoxin and endocrine disrupters. When I switched to organic corn we lost the craving. Same with soy. I have become a detective. Diet was difficult and didn't happen overnight..lots of stevia for sweetening and organic chocolate. I would say at least 6 month transition with more cooperation as he feels so much better.. Our Dr doesn't do Gluten Free or rice because he sees it still irritates the immune system so no wheat or rice and whatever is flagged on blood work panel. We do blood work every 6 weeks to look at antibodies. He has done immunology for 30 years and saw this made a big difference. Then we taught him something new! My Pandas son started doing the Paleo/ caveman diet because that is what his big brother at college was doing and it was cool! Being the information junkie I have become I read everything and it's suppose to be very helpful for immune issues by rebalancing the body to it's more natural state from years ago. Needless to say my son's allergy numbers went from life threatening to completely normal! His Dr. now puts all patients on Paleo but allows the kids 2 slices of very white bread or white rice once a day. Less reaction and kids can have a sandwich or wrap at lunch. We don't have celiac so I would ask your Dr first. There are cookbooks for kids that has helped. Maybe we can do a section on recipes for smoothies etc. I have found a little bit of beet hides spinach by making the smoothie bright red. I have also paid him not to drink a gatorade at sports since there is flame retardant in it not to mention corn and dyes. He regained all the weight but in muscle and looks and feels great. Then his Dr. addressed each infection. We had strep, mycoplasma pneumonia , Herpes virus 6. I think possibly Lyme but his Dr doesn't address that. That's why I am here. He is back on honor roll after losing ability to read with comprehension. Math is a little slower. Most important he has color back instead of that pasty white and is enjoying his friends and family again. A word of caution. Tread carefully and slowly, watch how you present changes. You don't want your child obsessed with worry about poisons in their food. Making it a healthy transition for the whole family is better and if you don't buy it it will at least cut down on their exposure. Because of awareness a lot more is available such as non GMO and organic potatoe chips, corn chips and popcorn. The author of Saving Sammy met a curious Dr. Who did blood work on all of his patients on the psych ward. Guess what....infections were found on a majority. The psych ward is the worse place for my son because if a person is sick they will trigger him and make him worse. Same with airplanes! At a conference a Dr. Found this hard to believe until multiple parents told them they had the same experience. It makes sense if you think about times when you sit next to someone who has a cold. If you didn't get sick it is because your immune system did its job and revved up and got rid of the germs. Our kids immune system revs up too but since it is dysfunctional more inflammation is created in the brain and we get more OCD, ADHD,Tics etc. Since we are on prophylactic antibiotics and anti-virals this has not been an issue and all his titers are in normal range. I would like to learn how to eventually get off them. An interesting FYI when you get flack about antibiotics at least i do....20% of antibiotics are from medical sources and the other are pesticides such as Round Up (patented as an antibiotic ) and food sources. Hope my journey may connect some "dots" on yours. 3bmom

Have you heard of pyroluria? I know very little except it can be an issue in autism, anxiety, depression, alcoholism and Lyme.. Fits right in with pandas. They suggest zinc too!

You wouldn't be crazy to test for strep. We even tested our dog after I learned a couple of Pandas kids were reacting to their pets strep. May I suggest when they do blood work for strep titers they also do mycoplasma pneumonia especially given your history with mold. You can be asymptomatic, I was. Also HSV (herpes simplex virus) 1,2 and 6 can cause the same inflammation in the brain. My son's Dr. Has found this to be true with some Alzheimer's patients. Best of luck!

Thank you for the great suggestion of covering up the other math problems! The page is so messy since we lost some handwriting skills too. We are repeating Algebra. He was a year ahead so it won't make a big difference but his grades fluctuated so much we couldn't tell what he really understood and we wanted to make sure he has a solid foundation. Hopefully repeating he will catch anything missed and what comes easier will rebuild his confidence.

Thank you for your response. What is the Amsler grid? Is it a part of Irlen testing? We were fortunate a teacher was passionate about Irlen and she offered initial free screening and then a referral for confirmation. For the tics have you tried diet? Blood work should help point you in the right direction. Our tics were layered with compulsions and obsessive thoughts. They disappeared with valcyclovir since his blood work was high in viral titers, but before medicine we had improvement with no dairy.

Hello, I am a new member but not new to PANDAS. I have been on this journey for 8 years with my son. He got strep when he was 6 and changed overnight. We did the ER and he was whisked off to the psych ward. After many days they diagnosed him with severe OCD and PANDAS. They even videotaped for Teaching purposes. Gave me respirodal and outpatient behavior therapy. Later in therapy the doctor came to me and asked what I had done because he showed no signs of OCD and his tic was gone. He had been on a Z pack for an ear infection. Could of saved us so much grief if given earlier. We continued to bump along with a homeopathic strep pill ( pill has been discontinued), some changes in diet and a round of antibiotics whenever a flare arose. 5 years later we had a horrible flare and loss of 30lbs so we went back to the same ER but this time with his medical records. Wethought we would get either an antibiotic drip, steroids, or IVIG. Whisked away again to psych but now they ignored their own diagnosis and they refused to do any blood work! Released him 4 days later with us getting parenting lessons and cognitive behavior therapy if we could get him there since he would try to jump out of moving cars. That night I think he had a grand mal seizure. 2 months later and a lot of ###### ( besides behavior he could no longer read or write and math disintegrated) we got to a neuro-immune dr. He had strep, low titers,mycoplasma pneumonia , and HSV-6 (herpes simplex virus) titers 16X higher then normal! Also his IGM/IGE allergies were at life threatening levels. The Dr addresses everything one at a time so he can see what is working. Food first. No wheat no dairy. It was very difficult but we saw some improvement. Next when we went on the antiviral Valcyclovir in 36 hours we saw remarkable improvement. He then added antibiotic along with serotonin lifter. Because he lost his organizational skills Intuniv was added. He was back on honor roll except for math. Most days he is a joy to be with and I remind myself to cut him some slack since he is a teenager. I have joined for multiple reasons. I would like to learn to integrate natural medicines. Are there ways to help with Math besides tutoring? I found out I test positive for Lyme from the new culture test and what do members think of that test. How are they being treated for Lyme. I also would like to help others on their journey and give them hope. Sorry I wrote a book. Thought it would be better for understanding where I came from and what I have done. Thanks for listening / reading. 3bmom PS. I also have a son with dyslexia and Irlen. When he first put on his tinted lenses and read a paragraph I was BLOWN away! I still get chills. Now he is starting his second year in college. I saw that Helen Irlen is on your board. THANK YOU FROM THE BOTTOM OF MY HEART! Every entering kindergartner should be tested.