MLee

Hi Cary! How is you DD doing? Thanks!

I haven’t heard about essential oils and their benefits. How do you apply them? I’m so happy for you that the essential oils are working! Regarding food, we had a naturopath doctor (ND), do a food intolerance test. It is a simple blood test that tests for food intolerances (IgG). The test she ran was FoodStats Antibody Assessment by US BioTek Laboratories. It tests 96 foods. Gluten, dairy, eggs and sugar are big ones for us and it helped to removed them. Keeping a food diary helps too and writing down reactions to food. You’ll hopefully start seeing a pattern with some foods. Gluten takes awhile to get fully out of the system. We are watching salycilates too. Epsom salt foot soaks or baths help. We also have just started seeing a functional neurologist and they have been giving my child exercises. It seems to be helping but it’s too early to know for sure as it’s only been a few weeks. For us, it’s been a multi-tiered approach based on things I’ve read on this wonderful forum

Hi Cary, How is your daughter doing?

Thank you. Do abx help with inflammation issues or is there another way to address? blood draws are very stressful for ds. We even go to the Children’s hospital and it is still difficult. the PANS/PANDAS doctors want to run a large quantity of blood tests and it’s impossible sometimes to get it completed.

I gave my DS (9) Advil last week for 3 days for some pain he had. During this time I noticed he had a very large reduction in tics. Given this, what should I do? He tested negative for strep. I just want him to try a round of antibiotics but am having a hard time figuring out how to get it. All the doctors want to do more blood tests. It's frustrating. He really gets upset when having blood draws. Help!

509Momof2 I empathize with you. My DS is 9 as well and has tics that started this year. We are working on diet to help. I too am worried and sad. I hope the school year started off well for your son. Sarah I really took your response to heart. Thanks for taking the time to write it. So many good points.

This is a wonderful post!! Thank you. How are all your kids doing?

Any recommendations? Thank you!

@shelly76 How are you doing? We are in the PNW as well. What doctors have you gone to...I'm just always looking for new options. This is such a difficult journey for our kids and us trying to help them. I am always hopeful that the next doctor will help and then I'm disappointed. I'm never sure when people say their doctors helped and prescribed different things to whom are they going? MD, ND, psychiatrist, DO, etc? Where do people find the most success?

Thanks! We are seeing a ND in a few weeks! Hoping they can help! Thank you both for your responses.

Hi! Can you still have PANS/PANDAS with a negative strep culture? My DS is exhibiting symptoms this last year and I am thinking it could be PANS/PANDAS. We go to a PANS/PANDAS doctor in a few weeks. Before his flu shot in Sept 2017, he had nothing. After his flu shot he developed minor tics, behavior issues, handwriting decline, leg pain where he has to lay down due to the pain. This all started after a flu shot in Sept 2017. Help...any thoughts? Thanks in advance! Feb 2017 – Had cold with ear pain. Would wake up at night due to the ear pain. Went to the pediatrician and they gave topical pain drops. June 2017 – Had severe sore throat. Sore throat started 4 days prior. Temp 99-101. Malaise, and tummy ache too. Rapid strep came back negative Later June 2017 - Still had sore throat. Longer throat culture came back negative. But DS felt sick for a while longer. 9/7/17 - Sick with fever and vomiting 9/11/17 -Flu shot September after flu shot – Head twitch starts and wheezing. Behavior issues. Handwriting begins to decline. Food intolerances. October 2017 - Sick not feeling well 11/15/17 - Sick not feeling well 12/15/17 - Sick and vomiting 12/25/17 - Sick and vomiting 1/28/18 - Sick and vomiting February – tested for food intolerances. Came back intolerant to many foods. This seems to be a development since the flu shot as prior to that he had no food issues. March 2018 – Red rash appeared below belly button. Very tired. Upset stomach. Eventually went away Since March we have gone GF/DF/egg free and low salicylate

Thank you!

Thanks for the update! So glad to hear that almost all tics are rarer and intensity is quite low. We've been going on vacations this summer as well, as I get really stressed that the change in environment, routine and some food will cause issues. I understand. I'm hoping your vacation goes well and that the tics won't elevate.

How long was your son on high dose antibiotics?

Any detox ideas other than epsom salt baths? My son reacts to the sulphur.

I have wondered this too about the yeast imbalance. Have you noticed a difference in your DS when yeast is controlled? What causes a yeast imbalance?

Thanks! Was this a naturopath or family dr or pediatrician? Trying to figure out to whom I should inquire. Was there a test for this?

What was the yeast treatment?

My child (9) has a high tsh and will go to the endocrinologist in 1.5 weeks. He needs thyroid medication. My husband and I are both hypothyroid. My husband is on Synthroid and I am on Armour. I’m hoping my son can be put on Armour! I know I feel so much better on it over Synthroid. I’m encouraged that your child is on Armour. Was it hard to get the dr to prescribe to a child? Thx!

Hi Vittorio, did you find help with your test results? Did one provide more helpful then another?

Things seem to slowly be getting better. He got sick so that set us back a bit. We are on track now. We have adjusted the diet and are waiting slowly for the gut to heal. He's been a real trooper. Since he is intolerant to gluten, wheat, garlic, citrus, dairy and eggs, I know it can take awhile to get the gut back in sync. He's been tested for strep and it's negative. I think we are going to get a CBC panel done and one other test. I have to check. We are also doing a probiotic and natural calm. His tics are head twitch (like flicking his hair), eye roll and throat clearing or humming. I feel like the head twitch and the eye roll are getting better. The throat clearing/humming is slightly better. Is there something that works better for vocal tics? Overall he is looking healthier! I look back at photos from this winter and he had such dark circles under his eyes and he was tired. His color is back and the dark circles are going away. So, as I was thinking back to this fall, I think my son's flu shot may have triggered his head tic initially (1st tic)? Has this happened to anybody before? We've never had an issue with vaccines before. But, now that I know he is intolerant to eggs, and I believe there are some eggs in the flu shot, this could have overloaded his system? What can we do?

Hi! if your child did CBIT behavior therapy, how old were they? We met with a psychiatrist that is trained in CBIT. It was an evaluation appointment. My son is 9. She was on the fence about if he was too young. I haven’t cxl’d the next appointment which would be an actual therapy appointment. If we cxl, it takes a long time to get another appointment. Hiw old was your child?

Bernerchiro, What a wonderful update! Thank you for keeping us updated. How encouraging to see such wonderful results. We just started a dairy, gluten, egg, citrus elimination based on IgE blood test results. I’m also watching sugar and sals. If you find any great things at WholeFoods that work, would love to hear. I spend so much time reading labels and going up and down aisles! By chance, is your son on a probiotic? What kind did you choose? Hope things continue to go well for your son!

Looking to go the natural route. I tried a probiotic my nutritionist recommended and it was allergy free but I stopped bc it seemed to increase tics. We just found out my son has dairy, egg, citrus, wheat and gluten intolerances so we have made diet changes. His gut needs healing from the gluten. What are some natural probiotics that would work given his food intolerances? also—should I wait to use natural calm until his gut is healed? thanks!

1/2 a scoop.