HELP PLEASE!

[906bell]

I posted for help on the PANDAS forum yesterday but thought I might try this forum today after reading more. Right before my son turned three he became a different child melting down over how we walked, talked, etc. He started preschool and was selectively mute despite having excellent language skills at home. Shortly thereafter tics started. We started having 'cycles' of 1-2 months of my son barely being able to function due to OCD type behaviors to my son 'returning' to his old self (overall). About 6 months after all this began he was dx with a rare parasite. He took abx and again 'returned' to his old self. He was given the dx recently of Tourettes, OCD and anxiety but I feel like our 'cycles' are not typical. I then heard about pandas and our pediatrician is going to test ASO and antiDNAse B. I guess my question is to those of you who have dealt with something similar...

1. Am I on the right track of looking into pandas?

2) Could he have other problems with immune system, etc and could the parasite or parasite tx be a red flag for something else?

3) What type of doctor should we see? WHO can help us? We have seen psychologists, pediatricians, neurologists. I am at a loss of where to look for help and what to look at, ask for, etc.

[JuliaFaith]

rare parasite.

DS13 was diagnosed with PANDAS and treated for a 'rare parasite' that is in pools, rivers etc. He never progressed with abx or steroids like most "PANDAS" patients. After trying that treatment for 6 mos. and reading the forum on here I decided to take him to see a lyme doctor.

 

At the first visit (before tests etc.) she told us that he probably had lyme. By the 2nd visit all the tests along with the diagnosis pointed in that direction. We are now in the 3rd month of treatment and I am so glad that we went to the lyme dr. She is an ND but insurance covers most of the visits. Insurance does not cover the natureopathic meds. but those can be run through an HSA plan, if you have one.

 

The head dr. (MD) in this office believes that the high amount of parasites (worm/microscopic parasites) are the main cause of the body breaking down and causing all kinds of symptoms, including auto-immune disorders. He thinks that by treating these parasites that the body will eventually begin to overcome the high amount of parasites and start getting rid of them on its own and heal itself (depending on damage that has already been done).

 

Just another viewpoint. Hope this helps. All of this just makes sense and, for me, made it easier to understand what we are up against in the battle to heal.

 

Best wishes.

[906bell]

Thank you for sharing your story/information and responding!

[sf_mom]

You are on the right track investigating PANDAS (auto-immune) and MCIDS (multiple chronic infectious disease syndrome).

 

I have a 6 1/2 year old boy who was diagnosed with PANDAS in August of 2009 and then Lyme in August of 2010. I have three year old twins that were thought to be PANDAS (lacked sudden on-set but something was wrong) and were diagnosed with congenital Lyme in September of 2010. My older son also had a intestinal parasite that was not resolving when he was treated for PANDAS, once we started following Lyme protocol it cleared almost immediately (48 hours). All three children have made huge strides towards recovery.

 

Your son symptoms do seem similar to our twins. Selective Mutism is a documented symptom of Lyme just google 'Dr. Brain Fallon and Selective Mutism' and something should pop up. Our Daughter had one word at 2 1/2 years and that was up. She is now talking in full sentences 'although with a slight lisp' that we believe will fully resolve with treatment.

 

I highly recommend you investigate all possible infecting agents to understand the potential cause for your son's illness. LLMDs are typically of great assistance in properly ruling in or out infections.

 

Good luck, Wendy

[kmom]

SF Mom,

 

A friend whose DS 2.5 yrs. old was dx'd w/ Autism. She adopted him from Ethiopia back when he was under a year old. He's non verbal and has some other autistic tendencies. She recently took him to a DAN Dr. in NY and the dr. has dx'd him w/ <her words> "a genetic mutation in his MTHFR gene and some inflammations in his blood (we don't know from what but the Dr. suspects his gut and intestines). The MTHFR gene makes the MTHFR enzyme which combines w/ B12, folic acid and some other things to get methlation started. About 1/4 of population have some type of genetic mutation (some a single mutation, some double) but they find a high percentage of autistic kids have some mutation." Is this by chance the same mutation you are talking about? I have wondered if Lyme has played a role in this child's delayed development. This mom is working overtime to help her son. She felt lost to start since she has no family history records b/c of the overseas adoption. He's a smart boy but just can't communicate well. Although, from all the supplementation they started and G & C free diet, he did finally catch onto sign language which is making things easier. Didn't mean to hijack this post. I figured I'd post rather than PM in case this info we share can help anyone else.

 

Thanks!!!

[sf_mom]

I would definitely have her investigate Lyme induce Autism http://www.lymeinducedautism.com. I know our Dr. has helped many Autistic children and has gotten them talking and off the spectrum. This child is young and symptoms could easily turned around if it is Lyme. I would recommend her seeing an LLMD. Nancy D could probably point you in the direction of a great Dr. for Autism/Lyme in New York area.

 

-Wendy

[kmom]

Thanks Wendy! You are always so helpful and kind! I'll pass this info on tonight! It's weird. This mom is actually my cousin's cousin. So we're not related but we have known each other since children. The strange part is that my cousin has MS, my other cousin (one w/ MS sister) had arthritis growing up and is getting tested for Lyme now, I have Chronic Lyme and now this child ASD and gene mutation. Our one common ground is that we all vacation and have vacationed since children at our cousin's wooded lake house in upstate NY. I know there are so many places to get bit by an infected tick but I always wonder if that is a hot spot.