3bmom

We will have to get a new insurance too. Our DS Dr and another specialist said Obama Care will not allow psychiatric diagnoses to be treated medically ie getting antibiotics etc. The "standard of care" is to be separate based on coding. The FDA is also trying to pass laws against prescriptions from Canada. Anyone have any expertise?

I second Rowingmom!

My heart breaks for you because that is the same path that landed my DS (11 at the time) in the hospital. You are stuck between a rock and a hard place and LLM is right.. Tough love. My son was on prophylactic antibiotics and was secretly not taking them. Later he said they were "changing him". He wouldn't eat any "growing food" because he didn't want to be tall and only ate junk. My DH and I were contaminated. He lost 35 lbs which led to the hospital which gave us parenting lessons. Our Dr told us in this inflammatory state he could get type one diabetes and we had to remove dairy immediately. This was for a child who snuck out of the house after 9:00 to get a milkshake. Clue number1. Morphine effect. We told him we love him, have to be good parents and no dairy. We did keep sweet cereal for transitioning. Dairy alone took the edge off especially the abusive language. I always kept my keys on me and walked out when he got ugly. I left a lot! The food he is eating is adding to inflammation. It is like putting out a fire with gasoline and water. We did it slow but each item removed is one more irritant off the brain. When we got the results of blood work we showed him in black and white he had infections. He was extremely angry but it helped. We said you have a broken brain and you would think we we were terrible parents if we didn't fix a broken arm. We also took away games and computer and he had to earn time. He only took two pills antibiotic and antiviral. 3x a day. Did you check HHV 6 ? 3 days later he improved and kept on improving. 2 months later we added SSRI for more blood to the frontal lobes as indicated from neuro spect scans and have been stable for 2 years. It was the hardest time of my life and some days I wondered if I would make it. You can do it! One hour at a time becomes one day and than a week. We are all here for you. Hang in there!

Yes Rowingmom! The more I learn the more I am blown away! I have always blindly trusted. Now I am angry that our children are science experiments and over 64 countries have protected their citizens and children but the US has not. In the last few months China, and Japan have refused shipments of GMO food. Mexico stopped all growing of GMO crops effective immediatelyI. I hope awareness will tip the scales. Meanwhile we can still choose organic but our kids are losing their childhood and paying the price.

I would try to find a more knowledgable Dr. PANDAS is multifaceted and very grey in its testing. Most Dr want a blood test to be definitive with a definitive treatment. Also PANDAS has exploded just like Autism and ADHD since the beginning of the 90's. These disorders are very new in the medical timeline and something most Drs have not seen before and are having difficulty wrapping their head around it. I look at it as an onion. Each layer of inflammation you address that is a little less inflammation on the brain. Infections, viruses, environmental toxins and diet. Especially diet. We changed our wheat in the 80's and in the 90's started genetically altering our food. It is not coincidental that GMO food which our immune system does not recognize came on the scene the same time as all these brain disorders.

I met a nurse who has had great success with fecal transplants for C diff. Sound gross but makes sense. You are transferring a whole colonization of good bacteria improving the gut. Always wondered if this would help behaviors. Have you addresses diet? Since we started genetically altering our food the immune system never can rest. I think this is the first domino.

Did you test for viruses? If they remain high the immune system can't catch up. Have you addressed diet? The food in our diet that has been genetically altered (GMO) automatically creates inflammation making the immune system work that much harder. Think of it as running a Marathon with weights on your ankles. When we finally addressed diet ( it didn't happen overnight) the antibiotics/antivirals were able to do their job and we became stable. Good Luck.

I missed a few pages when I answered the above post. Sorry! Glad you found a Dr willing to look at everything. Two things hit me when I read everything. We found a lot of our bumps were from diet. Even this week we had a grumpy morning which can be usual for a teenager but then found out he ate pizza with friends the night before.... Dairy, wheat, yeast and nitrates in pepperoni. Huge piece of the puzzle. A lot of countries label food from the US and some ban it. The other thing is after 6 years of living and observing PANDAS I strongly suspect one of my DS classmates is a carrier. The 3 major flares over 6 years they had class together daily. You said your sons tics are always worse by Friday and there is a child who has a brother with PANDAS. By any chance has the mom tested the non PANDAS child? It might be a long shot but everyone in the family should be checked. Glad you are doing so much better!

The moms here have such great advice. I just want to say strep is not always present in the throat or hides there extremely well. We only had one positive swab and never have had a sore throat. It also likes your sinuses too. Your mommy instinct is the best. I understand your Dr wants that definitive test but clues like ibuprofen are invaluable. Don't forget viruses too... The PANS piece. Once we treated the virus HHV 6 he could get rid of the strep.

Yes. Lead, copper, arsenic. We even had problems in our area with percolate a byproduct of rocket fuel. Would love to know if they can test for this. If you read dr Perricones prescription for great skin it is no dairy, wheat or sugar all of which spikes insulin levels. GMO and Glyphospates have been approved in March for a substantial increase in spraying on food with a heavier toxic load for us. No testing was done for harmfulness to our health. Also please don't forget GMO food you can not wash off the DNA changes. I met a guy this week from England and he can't believe the US is 10 years behind on all this info... So sad!

Did you retest for strep? Viruses? It might not have been just the flu. My DS doesn't get a sore throat. I would also make sure the rash isn't Scarlet Fever. Good Luck!

Jaklo, I am sorry you have not had luck with DR. Goldberg. He saved my DS with PANDAS life. He had lost 35lbs in 2 months with eating issues and severe OCD. We took him to the hospital that originally diagnosed him 6 years prior to this terrible flare. They no longer "believed", refused blood work and gave us parenting lessons. By the time we saw Dr.G he had had 3 infections and life threatening allergies for 5 months. My DS was no longer able to do school work and was getting D's and F's. it took 5adults to draw the blood work. Most Drs with a wait list would of said good bye. My DS is an A student again except for Math, participates in school activities, regained his weight in muscle, no longer has OCD thoughts raging and has his confidence back. We are still on medication but have been stable for over 2 years with no flare even when friends are sick. Dr. G might not have all the pieces of the puzzles and I would like to eventually get off the medications that is why I am here but I do feel he very knowledgable and passionate for our kids.

I know it is overwhelming and a qualified Advocate will handle district calls, check on appropriate testing and hold your hand. They are there to get what is best for your child. When our school did testing for dyslexia they told me he was fine and tested average with no need for intervention. Later with independent multiple testing I found out he excelled in some areas and failed horribly in others showing deficits. Yes if you average this together he is average but it was not an accurate assessment. If you decide to do testing without an advocate get copies of all results and have someone knowledgable clarify results. I know parents in schools that look at all angles but from what you have mentioned I would be on your guard.

Have you been tested for virus or myco too? I had high myco and wonder if that set him off. Saw improvement after I was treated. We have been stable but every once in a while my DS can't sit next to me. Who knows??? Have heard this can happen with yeast too.

Thanks so much LLM. I know yeast is an issue for me and probably my DS even though his Dr said the blood work was negative. My older son battles with a rash that I think is connected. When he does the Paleo diet it is gone and when he slips it's back! I will take the molybdenum. I tested low in that. Maybe I won't feel so bad from die off. Has anyone tried the protocol that SF_Mom suggested? I was thinking about it. http://www.candidaplan.com/new/what_is_candida/%C2%A0

HHV-6 is as important as strep. Did he run those? What about EBV etc.. Viruses are as important as Strep! That is why the definition has been changed to PANS. I am sorry but my frustration is showing. Maybe yours were negative but I notice some get focused only on strep titers and I worry parents will miss an opportunity for healing. After my DS first flare with strep his immune system became dysfunctional and ANYTHING including a sick sibling, classmate, parent, babysitter, (have even heard about pets) will activate the immune system. The activation causes inflammation in the brain. Our white blood cells were not low but we found he had life threatening allergies with no physical symptoms. I think everyone's immune system reacts differently as it fights to regain balance.

That's awesome! When I went to the ENT last year to make sure I didn't have strep and mentioned PANDAS he kept me there for an hour asking questions. He said he should of paid me for the visit! He commented that a lot of times their hands are tied for doing a tonsillectomy because they need a Pediatrician referral. Makes me wonder if part of the increase in kids issues is do to a change in medical practices. Tonsillectomy's use to be routine for childhood.

I am so sorry for what you are going thru. I don't know why some schools are so difficult in addressing the needs of our kids. As parents we are going thru so much and need support and guidance not more hoops to jump thru. It's probably funding. I suggest a professional child advocate who knows the legal system. They know what is within your rights and what is best for your child. I think the cost would be worth their weight in gold. I spent hours studying dyslexia for my other son to get him help. I cross referenced all his teacher comments from k-4 with obvious reading flags. Brought in independent testing since they were lacking. My husband and I went into the meeting with the purpose of him getting help and specialized Dyslexia tutoring. All we succeeded was them agreeing he had dyslexia and a 504 with minimal accommodations. The paperwork we signed had denied crossed out and approved written in. They had made up their minds before the meeting! We got him amazing help with an "evidenced based " program and testing for Irlen tinted glasses. Our tutoring was at the time $75/hour for 18 months. Later talking with an advocate all of that legally should of been paid for plus additional accommodations we didn't even know about. I too loved our school and thought an advocate would of looked pushy. In hindsight for me it would of been so much better to leave it to the experts. Good Luck

We have the same issue. Tu4four said it perfect in a different post...they are angry just for our presence. When he was 6 he hid his behavior at the hospital for 3 days and then couldn't take it any longer. Five adults had to sedate him and then they believed me! I think it is just the peer pressure until the PANDAS pressure wins. Find someone to talk it out with. Our last flare at age 11 drained me and I went to a counselor. It really helped so I wouldn't be angry at my DS for the verbal attacks on me. Now we are stable and I get hugs. Hang in there!

Chemar, I found that article interesting but in the last 30 years there has probably been a reduction of alcohol consumption compared to the previous generations who didn't have any information on prenatal health. This doesn't account for the epidemic of neurological issues our children face now. I can only speak for myself but I know my mother and mother-in-law occasionally drank alcohol while pregnant. Between the two there are 10 children and not one with learning or social issues. If it skips a generation hmmm... Sorry, just playing devil's advocate.

I heard the girls Dr. T was treating were doing better. Of course they had infections with documented blood work and were being treated accordingly. A New York paper said they were improving because he was a nice Dr.. I have heard of 2 more cities with similar outbreaks but the stories seemed to get buried. So sad.

Lysine I believe is good for Herpes. Our DS 3rd flare had a lot of rage. You worded it so perfect...Just for being present. I had to call my husband and tell him. I would definitely have him run titers on Herpes 1,2, and 6. Herpes 6 was the monster in my DS. Valcyclovir was the magic. Our Dr. treats any titers 4x normal. He is at normal now. I have used GSE for MRSA and the culture came back clean. Could it have been die off the Liver couldn't clear?

Funny, I was just pondering the water question with my husband but from a completely different angle. We spent Thanksgiving in the Tahoe area and a friend who is a school nurse says she isn't seeing all these neurological issues in kids. She has been there for many years. I worked in my kids classrooms and saw a huge difference between my older sons and my youngest. At first I wondered if she was just missing the signs but then I wondered "What If". Has anyone researched areas with low changes in kids that are not following the rising curve? I thought about their water. Most Tahoe people drink tap and I have to say it tastes great. Is it replacing minerals we are deficient in due to changes in our food? I also thought about all the trees and are they purifying the air? They are not near agriculture either past or present. Lifestyle too with lots of interaction with nature. IDK I was tested high in copper which also contributes to rampant yeast. I also read copper plays a role in acne which my non PANDAS son had severely. He was diagnosed with Dyslexia and Dysgraphia. After many different attempts to get the acne under control without success I allowed him to go on Acutane even with all its issues. His acne cleared up and he LOST his dysgraphia! I even thought his notebook was his girlfriends. Water is probably a contributor. What filtration system do you use?

Beth was on the Doctors TV show with Sammy. I think they showed footage of Sammy's behaviors. Sammy made comments too. Your son being older might be able to take this in. Our son hadn't taken a shower either and his hair was matted like a homeless man and he went from an A student to D's and F's. Just going off Dairy allowed him to start taking showers again. 6 weeks on antibiotics and antivirals his grades came up except Math, wish I understood that. He then cut his hair short and emerged a new boy! Hang in there! Keep me posted.

Posted Today, 09:17 AM I am so sorry for what you are going thru. We all know what it is like to have your child's brain kidnapped. Would your son read "Saving Sammy", watch the episode of "Mystery Diagnose", or clips of Beth's interviews? She has a new book out which is a guide for parents that may help you. Unfortunately your pediatrician doesn't have a grasp on our kids. A lot of them are asymptomatic due to the dysfunction of the immune system. I would find a Dr. who is well educated in this area. Our son too spun out of control with his last flare and wouldn't go to a Dr. etc. We used a teenage transport service to get him to the hospital safely only to have them put him on a psych ward where nothing was done and he was released to us with parenting lessons. Needless to say he wasn't a happy camper. Our Dr. immediately put him on a diet that eliminated Dairy, Wheat and ALL Grains since corn is genetically modified and our immune system doesn't recognize it along with soy unless organic. Again it is genetically modified, GMO. Dairy has been shown to cross the brain barrier. If you google it you can read scientific studies from major universities. Any little bit will help with inflammation. It takes over a week for allergens to clear the body. It took 5 of us to get the blood work but I think him seeing in black and white that he had 3 infections along with life threatening allergies (no symptoms), opened a crack in the door for him to realized he wasn't crazy just very sick. Antivirals and antibiotics gave him back to us. Hang in there. You are not alone. Hugs! 3bmom Like This Quote MultiQuote Edit