hi everyone, I'm new

[Titan]

Just introducing myself. I am a mom of 5 kids ages 3, 7, 8, 10, and 11. My 7 year old son has a tentative diagnosis of PANDAS, and we accidentally uncovered celiac disease, and anemia.

 

He was diagnosed with Anxiety Disorder, nos, parvovirus and influenza b, in Jan 2013 and my husband, myself and my youngest all got strep the same week. 4/5 kids including my son were identified as "carriers" by March, and were not treated until the beginning of May when my son changed.

 

Initial symptoms were extreme anxiety, panic attacks, a blinking tic, daily pee accidents, and sudden academic decline in reading/writing and math. Brought him to his pediatrician armed with some PANDAS article I stumbled upon. She agreed to treat the strep with 10 days of Augmentin. Siblings were treated as well until everyone swabbed negative.

 

Initial labs revealed likely celiac disease (ttg of 62), repeated two more times, both positive. He goes for a small intestine biposy next week.

 

His ASOT was 625 (may), 432 (june), and 257. Was sent to a neuro who ordered an EEG (mildly abnormal), lumbar puncture (I'm looking at a copy of the results but can't really understand them.) MRI of his brain was normal. He's anemic, and often has low wbc as well.

 

By June he had lost the blinking tic for the most part, and started clicking his tongue. Then talking in his sleep, hearing voices, major major memory loss, and sensitivity to sounds (June/July). Seperation anxiety has set in, and last week he was diagnosed with low working memory and written output disorder. He has daily hour long rages and I have no idea how to help him.

 

Tomorrow is the first day back at school. I have no idea how this is going to work. He is now starting 2nd grade and can't read or write anything except his name. A year and a half ago he was above average at school and now he is at a pre-k level.

 

He hides under his desk covering his ears and screaming/crying, he smashes his head on things on purpose. I had a "falling out" with our neuro and now I have 13 pages of csf and blood results that I can't interpret.

 

All anyone has been willing to offer us is prozac, which we have been declining so far, but we are getting desperate and I'm not sure what to do next. We are in Canada and have less PANDAS friendly resources here that the US I think.

 

Thanks to anyone who got through that novel. I'm just looking for any and all advice anyone can offer.

 

-A

[3bmom]

Hello, I am a newbie but not to PANDAS. We have been on this journey for 8 years. Most of that time I was the Dr. After being told we were beyond their ( the Drs scope). I am computer, Facebook, blog challenged spending to much time reading about the immune system. I did post what has helped us but in response to an anorexia parent if you want to read it there. We had that issue too along with a lot of the same symptoms you are experiencing. Hang in there. 3bmom

 

Did you do viral titers too with blood work?

[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

[mama2alex]

Welcome! I just wanted to let you know that if you post on the PANDAS/PANS (Lyme Included) forum, and say in the subject line that you're from Canada, I think you'll get a lot of help. There are several members on that forum from Canada, and they can direct you to the doctors most likely to actually help you.

 

In the meantime, I would read as much as you can on that forum. You can do a search on any word/topic that interests you and find all the threads discussing it, with the word itself highlighted in the body of the posts.

 

I'll say up front, you're in for a tremendous amount of work, but you CAN get your son well.