Emik reacted to msimon3 in Gluten Free and Tics
For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started treating for PANDAS did we realize it could be Lyme disease. We had labs done and visited two LLMDs who both agreed it was Lyme and Ehrlichia.
Prior to treating for Lyme, we also took anti-histamines for rashes. Sometimes it helped and sometimes not. Topical steroids (e.g. Cortaid) always made the rashes go away. We saw a couple of dermatologists about the rashes, and neither could explain the rashes beyond eczema or mild capillaritis and neither suggested a bacterial infection.
The biggest problem I see with Lyme disease is the level of disagreement and lack of education in the medical community. Most practitioners who do not specialize in Lyme are relying on guidelines for clinical diagnosis that are now decades old and proven inaccurate in the majority of cases (evidence of tic bite + annular rash = maybe it's Lyme disease). With all due respect to your pediatrician, unless they stay current with Lyme disease research or specialize in tick-borne infectious disease I would disqualify their opinion as well intended but relatively uninformed. Instead, visit an ILADS affiliated LLMD with your medical history and get a clinical exam. If the LLMD thinks it will help, or you want reassurance (as we did), blood tests can be done to look for antibodies to the Borrelia bacteria and other coinfections.
Another big problem with Lyme disease is the lack of accurate testing -- there is no definitive test for Lyme disease. There are 36 known species of Borrelia bacteria, with over 300 genetic variants seen across these species. Most tests look for your antibodies to one or more proteins of a single species (burgdorferi) and single variant (B31), and these tests are not perfect and sometimes show false positives or negatives. There are more accurate and expensive PCR tests that look for bacteria DNA itself, rather than your antibodies, but these tests may show false negatives due to a lack of enough bacteria in the blood sample. Basically, a positive or negative on a single test isn't going to tell you definitively if you have Lyme disease or not, and for that reason Lyme disease is diagnosed clinically. In our case, we had Western Blots from Labcorp and Igenex that both indicated Borrelia infection, and additional tests from Igenex that indicated Ehrlichia as a coinfection. These tests supported the clinical diagnosis that we had Lyme disease. Many LLMDs will test using the Igenex Western Blot as it tests for two variants (b31,297) rather than one.
Emik reacted to logismum in Gluten Free and Tics
I'm agreeing with what the other ladies have said re gut health etc at least this was really important for my son. we did a anti candida diet and anti fungal and now do a daily probiotic. It's good to look into every area of health that you possibly can. My son also has issues with having heavy metals present so we are currently slowly removing them.
so i'd say def investigate
- Allergies and not just food ones
- Gut health
- heavy metals
- Any other possible health issues ie pandas/lyme (for my son we found out he has Pyroluria)
My son is also colour/additive, gluten, Cows milk/butter, egg and corn free as well as some other things.
His tics are also 95% improved since they came full on in January this year. His sister just said to me yesterday "Remember when Logi had tics?" I thought that was a good indicator into how much things have improved. Really only i notice the ones he does have as i'm looking/documenting.
I highly recommend getting Sheila's book if you haven't already read it. Amazing info on getting the investigating happening and some really inspirational stories!
Best of luck
Emik reacted to cara615 in Gluten Free and Tics
Is it possible that she is not 100% dairy and gluten free? I ask because we too saw amazing improvement when we removed dairy, gluten, corn and sugar but we did not see it until 100% of the offending foods were removed so even a tiny cracker with dairy in it would cause the symptoms to show themselves.
We also did a 6 week antifungal regimen with grapefruit seed extract to kill yeast. This was helpful as well. in addition, we give our son a methyl B complex and NAC (N acetyl cystiene) which is an amino acid.
We see a holistic physician and discovered that our son had a corn, gluten and dairy intolerance as well as yeast and a methylation dysfunction. That is why we add what we add as far as supps go. We also go glutamine and probiotic for gut health.
Emik reacted to my2sons in Gluten Free and Tics
Emik, it' s intetesting that your daughters tics began when she turned 9... my son's tics started days after his 9th b -day and so did his cousins. I have also read of others saying this. Hmm. Our progress with diet and tic improvement has been similar to Cara's but maybe slower and more gradual. But my DS is older so he has had more time to create the gut damage so it makes since it would take longer to heal. I read on the Web where a docyor advised a mom that neurological damage caused by gluten intolerance or celiac takes the longest to heal. It can take a year to 2 years to heal...longer if the damage is really bad. We just hit the 4 month mark and we are at about 95% improvement.
Emik reacted to ilovedogs in Gluten Free and Tics
Just wanted to chime in about the onset of tics that's being discussed here. My son started tics the day he turned 9. It was like someone just flicked a switch. He's going to be 15 in the fall.
Unrelated to the gluten issue, I just want to encourage the parents here to educate their children. As my son got older we talked about his tics and his ADD and anxiety issues. I've gotten him help when he wanted it and backed off when I needed to. But, the best thing for him was for him to know other kids with tics and for him to be able to explain it to his friends. A new friend of his at tennis wanted to know about his eye rolling and thought my son was doing it on purpose and said it was weird. My son explained it was a tic, along with a few others that he has going, and told the boy about how it's almost like blinking your eyes where you do it but you don't have to think about it and you might even be able to stop it for a short period of time. His friend was grateful for the explanation and apologized for what he said.
We have also been lucky enough to homeschool but my son does attend classes at a co-op two days a week and he's made sure his teachers and classmates know what his deal is. They're all very supportive and his tennis friends leave him alone because he's ranked 5th in our section in the nation and top 200 in the country and I guess he gets some respect from most of the tennis kids here. He has lots of friends in tennis all over the country, some of whom also have TS. I watched him have a conversation with his friend from Washington, DC about their tics and how it affects their tennis. They bro hugged each other afterwards.
Anyway, that's my lecture of the day, LOL! Just want to encourage everyone. You all are wonderful parents for looking after your children's needs, spending the time and money researching, and then taking the efforts to do dietary changes, etc. I think parents of kids with any issues like TS, ADHD, OCD, learning disabilities, etc are super parents!