Quick intro

[KTM]

Hi everyone. Google searches have brought me to this forum several times since my son's strep infection in January of this year. I haven't done a lot of reading but I have found some helpful information. I've also read some things that really scared and depressed me as well as things that I think would be helpful if I had more knowledge. I joined this community today seeking the knowledge to help my son.

 

The strep infection in January brought on the first tics and exacerbated many other symptoms that we now know were present very early in life. Amoxicillin helped, but he got a rash. He took Cephalexin until the end of March. There is major improvement since the crash during the infection but it is still worse than before it happened.

His pediatrician is good. He had one visit with Dr. Kovecevik. He has not been officially diagnosed with anything. I'd like to know more about the diagnosis process. How important is it to have an official diagnosis? We know.

 

We've always eaten healthy foods. I'd like help learning how to identify foods that may bad - intolerance. We're also interested in learning more about essential oils. Controversial I'm sure, but has there been any related discussion about cannabis?

 

Also controversial and the main reason I joined today. Vaccinations. He is due soon. There were notable changes after his first injection of MMR and varicella. I don't want to do it.

 

I need to know more. I want resources. I know there is a lot of information on this site. I plan to read it. Can someone please point me towards the best stuff to get started. I'd also greatly appreciate any direct responses to the topics in this post.

 

Thank you. Although I wish I didn't have to be here, I'm glad there is a community like this to be a part of.

[cynditk]

Please do not vaccinate any more. These kids have immune dysregulation which vaccination makes a lot worse. These are the kids who get the adverse reactions to vaccines, and it appears to be cumulative, every one impacts the immune system adversely and can set off a cascade of inflammation that is impossible to shut down.

 

Cannabis greatly helps my son deal with Lyme symptoms, mostly pain. I don't think he would need it if it weren't for the chronic pain he lives with.

 

Please find a local doctor who is PANS literate. I think there is a site- PANDAS network- that has a doctor's list. Beth Maloney's site Saving Sammy also has one I think. Specialists are fine but you also need someone you can see regularly.

 

Most PANS kids are on prophylactic abx. Some have had success with various forms of alternative treatments. High dose IVIG has worked for some also. Every kid is different and you will need to try different things and see what works for yours. Also some respond well to ERT at places like Rothman, usually once the infections are being addressed.

 

Welcome and best of luck to you!

Cyndi

[mama2alex]

Hi and welcome to the group! I'll give you my take on your questions and I'm sure others will chime in with great ideas.

 

Diet - you can do an elimination diet to see what he's reacting to, but this is very hard, especially with kids. There was a mom here a long time ago who's daughter had a very severe case and they basically brought her back with a very strict diet. Her forum name was pixiesmommy I believe. Otherwise you could eliminate the most common allergens one at a time and see if he improves - gluten, casein, corn, soy, sugar.

 

Vaccines - their are a number of kids here who either had their initial sudden onset right after a vaccine or relapsed after one. If he's already had a reaction in the past, I'd hold off at least until he's well. You can get a personal belief, religious or medical exemption, depending on what state you live in. NVIC lists them by state on their website. He may already have immunity from the first vaccine - you can check titers through a blood test. Also, if you search this forum for "vaccines" you'll find many conversations about this topic.

 

As for "best stuff" you can start with the pinned threads at the top of the list - "helpful threads for PANDAS" and "helpful threads for Lyme and associated infections." Even though he had an obvious reaction to strep, don't ignore the Lyme info assuming it doesn't apply. Many parents have found Lyme and co-infections to be an underlying cause (requiring different medicines than strep) even with an obvious strep trigger. Other than that, read read read and follow your intuition - search for more info on any topic that catches your eye. Every kid is a little bit different.

[LNN]

omg - I remember Pixie's Mom! Her daughter was a very, very severe medical situation - had a feeding port directly into her abdomen because she reacted to so many foods.

 

I second mama2alex's advice on where to start. I will also tell you that you should consider what kind of treatment approach you prefer to follow. Dr K is very mainstream and has a rather narrow protocol. Once he feels a child has Pandas, he will prescribe antibiotics for a period of time but then if a child continues to have flares, IVIG is the only treatment he advocates. For some, this seems to work. But for others, this protocol misses the mark and other integrative approaches - or tests for infections beyond strep - give better results.

 

So if you're inclined to work with someone who goes from A to B, then Dr K may be your answer. If you prefer to brainstorm or consider multiple variables, then you may want to work with someone else. www.pandasnetwork.org lists Pandas doctors by state on their website. But most vary in what they look for and how they treat. This is like dating - there is no "best" doctor. Only a "best" doctor for you. So give some thought to what you're looking for.

 

Vaccines are a very personal decision. You might find this article helpful http://latitudes.org/defense-andrew-wakefield/

If you do vaccinate, make sure your child is healthy and you may also want to consider the suggestions in this article http://www.livestrong.com/article/284264-supplements-to-build-immunity-for-infant-vaccinations/

 

I don't think you'll find essential oils or CBD oil controversial here. But I also can't recall a lot of discussions on them either. There's a search tool in the upper right corner - you can look there. Or sometimes I get better/faster results if I go out to google and type "essential oils acn" or "essential oils latitudes" and that will pick up threads from this forum plus the other latitudes forums (tourette's, OCD, et al).

 

One final thing in case you aren't already - make sure you're giving probiotics while your son is on antibiotics - and give them at least 2 hours before or after you give antibiotics.