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Trishb last won the day on June 25 2016

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  1. My DS has Lyme and coinfections so he is on a lot of medication and supplements. He is used to taking them directly from the bottle and not the pill box. I organized everything to not make it complicated for the staff. The last time he missed doses of his medication his OCD increased and his health was set back. It has been a long year because the school has been so focused on my son and this trip. I just couldn't believe that they did not make sure his medication wasn't taken and the Principal's attitude was extremely disappointing. My son is typically great about taking his medication, but not from a pill box.
  2. I am writing to get your opinion. My child just went on a 6th grade class trip to New York City. There are only 8 kids total with 2 chaperones. From the first day of school I was contacted almost weekly about my child's OCD issues and they were concerned about all his food allergies for this trip. My child worked very hard to get a good handle on his OCD issues and by the trip I wasn't even cocerned anymore. The school had several meetings with me about these issues. My issue is when my son returned from his 5 day trip the only day of medication taken was on the first day. All of his pills were left in his pill box. I am obviously not happy with the school. I wrote an email stating I took his pill box out and all the pills were left in it. This was the Principal's response who was one of the chaperone's. First, overall, DS12 had a great week. Both K and I saw DS12 taking his medication-sorter out at the appropriate times during the day. He had it with him at all times. K asked him if he was taking his medication and he said yes. I cannot say we watched him take the medication. We assumed because he said he was taking the medication and he had the sorter out at the appropriate times that he was taking it. Again, he had a great week. If you have any thoughts please share.
  3. I took our child to Rogers Memorial Hospital and it is an amazing program. This was one of the best decisions that our family made. The doctors and staff are excellent. The one thing that made this program successful is that the parent(s) are involved. When we first started my son had about 32 OCD issues, by the time we left it was down to 2-3. With 1 being still a big one, but they taught me how to help him. My husband stayed home with our other children and I was in FL with our son. We left the program in July of 2016. The program taught me not to make accommodations to enable his OCD and how to do exposures with him and talk about his OCD together. He still uses the skills they taught him. If you are able to go there I would highly recommend it. Please feel free to message me any questions.
  4. For my son an infection can trigger a tic. Have you had your son checked to see if he has a sinus infection? A high strep titer can make him tic (ASO, DNAose, Mycoplasma). When your child has a lot of environmental allergies they can have sinus issues. One thing that has worked great for my son and has cleared his nose is using essential oils. I bought on Amazon an essential oil nasal spray bottle. You can put either saline water, or filtered water with a pinch of salt with 4 drops of lavender, 2 drops of lemon, and 2 drops of peppermint. You can have him do 2 sprays in each nostril in the morning and at night. The other thing that made my son tic is food allergies. My son has a lot of food allergies but the ones that make him tic are soy, gluten, msg, preservatives. Have you had food allergy testing done? At first I just did an ellimination diet for 6 weeks I removed all major allergens then reintroduced them. My son would tic after eating wheat pasta, pizza. The funny thing is he has never tested positive for a wheat allergy. His doctor said he has an autoimmune reaction where his body is thinking gluten is an infection and starts fighting it. When doing the elimination diet I gave him soy ice cream. I first eliminated gluten, and dairy. Fifteen minutes after eating the ice cream he ticked. My son also ticks to preservatives. (Sodium Benzoate, Potassium Sorbate, Polysorbate, BHT, rbst). I hope this helps.
  5. Hello. No matter what your child would benefit from CBT. Rogers will give him the coping skills for his OCD and teach you how to help him. I have been on this PANDAS journey since 2011 and I wish we came here when his OCD first got out of control. Although the OCD is infection driven as the kids get better and the behaviors either stay the same or get worse - that is what they are behaviors. They need to know how to handle their OCD. I feel they think their alone and no one understands. There are so many kids with OCD who have the same issues. When you arrive they have you and your son make a list. They start with issues that are a low anxiety and work up to the higher ones. They are totally in tune with your child and they will address things head on which is what you want. All the doctors are wonderful. I have met several patients that either had Lyme or PANDAS. Hope this information helps!
  6. My son is only on antibiotics and for supplements probiotics, curcumin, and slippery elm bark. I did meet parents who had to put their kids on medication and some of them chose to use a company that will tell you which medications would be best for your child. I am not sure if it is done through blood work or saliva. I know the test is $1700, but the company allows you to pay monthly if need be. A few of the older children told me that they were on the wrong medications and after doing this test and having the medication change they felt so much better. All I can say is that I wish we did this program years ago. I know it is a sacrifice, but my son walks around now like a normal kid. This program has given me the tools to know how to help him with his OCD. We are almost at the end and the therapist at Rogers tackled the bathroom OCD which has been an issue for us since 2012. They told him that he has been in the bathroom long enough and if he doesn't get out they are not afraid to come in. He came out and was extremely anxious because he didn't finish with whatever ritual goes on in there. He was pacing in our room and his therapist spoke to him and was teaching how to calm himself down and why. His therapist stayed 35 minutes after the program ended because she wanted him to know how he should feel and he could do this. Having her do this helped me to know how to handle this if it happens when we leave. Since Friday he has been doing great all weekend. Also this just doesn't happen suddenly with tackling an OCD behavior your child has had for awhile. This has been a gradual process over the weeks where they first started with limiting toilet paper. On the first day we started Rogers, my son was crying because he told his doctor that the bathroom OCD was not an issue for him. He didn't need to get rid of it.
  7. Hello Everyone. I took my son to Roger's Memorial Hospital 5 1/2 weeks ago. My son was bit by a tick in April 2015 and November 2015. Both ticks had Bartonella but he was not being treated for it. In November, he developed severe OCD symptoms after the tick bites. His doctor put him on antibiotics and tightened his IVIG treatment. Usually he always progressed with IVIG treatments but there was no getting him out of this storm. I read on Latitudes about a mom who took her son to Rogers for treatment with his OCD and was 100% ritual free. My husband and I decided to try it. We felt that although he has been on antibiotic treatment for Lyme and Bartonella and elevated strep titters since November that maybe he is doing all these behaviors because they are now a habit. My son would take 20 minutes to walk into his school class because he would walk back and fourth and then finally would walk through the door, this also went on in the home when crossing different types of flooring. He would be in the bathroom for 1- 11/2 hours ritualizing, continuously walk up and down the stairs, writing and erasing. Sometimes it would take him 45 minutes to take his clothes off because he would take them off and put them back on. I am so happy to say that all of these behaviors are gone. It is amazing to see him walk around and not repeat any steps, put clothing on with no issues, writing again with erasing. The doctors at Rogers are absolutely amazing and address the rituals and the cause of them. This has been the best decision we have made in our child's health. Roger's has given my son the tools to handle his OCD and the parent is involved in the treatment. I feel confident on not accommodating my son and reassuring him and know how to do it in a loving supportive manner. For our family it was hard to know how to help our son with his OCD. Now we have the tools. This program is well worth participating in.
  8. Hello. I have two children who have Lyme and Bartonella. They are being currently treated, but my teenage daughter is still having joint issues, I noticed a rash on her leg and it is not itchy. If she plays in a soccer game at the end her knee might hurt for 2 days, or has back pain. She also said her ankle hurts too. I am looking for another opinion. Could you PM me with experiences and names? Thank you!
  9. You can have a compounding pharmacy make the medicine. That will eliminate preservatives and dyes.
  10. Your son may have a sinus infection. You can order an amber glass nasal spray bottle and fill it with saline water, 4 drops of lavender, 2 drops of Frankincense, 2 drops of Meleleuca and 1 drop of Copaiba. You can find this info on Pinterest too under essential oils. You can order these from Young Living. Another company that is good is Native American Nutrtionals. My child had a sinus infection for months and antibiotics wouldn't clear it. This nasal spray did.
  11. I would get a second opinion from another ENT. My doctor said to think of the tonsils like an air condioner vent and they trap and hold the bacteria. My ENT performed a lot of tonsillectomies for Dr. Keissling's patients. I asked him how those patients were after the surgery. All he said was I saw them for the follow up and that was it so he assumed things were getting better.
  12. You can also try going to a Naturopathic Practicioner. I took my child today because his tics have increased this week. We have a conventional doctor but my child is allergic to preservatives. I really liked this person and she recommended Vitamin C, Meriva, Omega 3, Acetyl-L-Carntine and Xlear nasal spray. That might be an economical route for you to try. She eventually wants to work on my child's allergies. Just make sure it is someone who has a good reputation in your area.
  13. There is. Company Seagate Products that makes a homeopathic nasal spray with olive leaf extract. My friend told me about it because my son is allergic to preservatives in medications. By what you describe it does sound like you do have environmental triggers but seeing you can't get tested you will have to try and calm down your immune system. One thing you can look into is essential oils. My child has tics and was getting frequent headaches. On Facebook there is a site The Oily PANDA and a lot of parents use oils to treat their kids. They make up a blend for allergies and for other symptoms. On that site I asked about tics and headaches. I was told about 3 different oils and I chose Vetiver because a study was done but it was for ADHD. I asked the mother who told me about it if her child's tics decreased and she said at first she used it for ADHD but after 2 weeks tics were gone. I have been using this oil and Sweet Marjoram which also helps with tics. I put each in a separate roller ball with a fractured oil. I ordered Sunflower oil for my child because he has a coconut allergy. I also ordered Breath Ease because he has allergy and sinus issues and diffuse it at night by his bed. I ordered these products from Native American Nutritionals. They also have a supplement you can read about which is called Defense that is suppose to calm down your histamine response naturally. You can also try for 30 days going gluten and dairy free and then introduce gluten to see how you feel, then wait a week or two and reintroduce dairy. They are imflammatorues so changing your diet might also help. My child's big trigger is gluten and soy. He did not test positive for wheat but when he eats gluten he will tic. His doctor said his body thinks gluten is an infection. Hope this helps!
  14. I went to an Enirnomental Allergist and he wanted to do 4 seperate days of testing for 3 hours each visit. I just felt it was too much for my son. I do go to an Allergist in CT and he performed the food allergy test and my son had several food allergies. After that he then sent out blood work to measure his antibodies to the food allergens. I haven't met with him for the results yet, so I can't give you additional info. We performed the Environmental Allergies in 2012 and my son had severe allergies. We did allergy shots for 2 years, but had to stop because he would tic after the shots and that shouldn't happen. I did see the shots help his health issues where his nose was not stuffed all the time. The Environmental Allergist does test for a lot more foods. I first did an elliminaiton diet with my son and once I reintroduced foods I could see how he reacted. Although he did not test positive for a wheat allergy he does react to gluten. His doctor said that in some kids their body thinks of gluten as in infection, so my son tics after he eats gluten. Soy was also a big allergen and he tics immediately after eating it. I hope this helps!
  15. What State do you live in? If you live in the New England area there are several doctors here?
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