Beata J

Hello everyone I am one of the confused parents that don’t know what to do. I’ve researched options other than medication, but didn’t pursue it. My son was taking Tenex for about year and ½ and it just didn’t work as well anymore. He was in such condition that he couldn’t function with his eye blinking and rolling up, weird trunk movements that in desperation I put him on Abilify in addition to Tenex. The starting dose is 2.5 mg, a dose for a 5 yr old child, he is 13, 5ft. 6 and within 24 hrs the tics were gone! He felt great. He is participating in a study and his blood is drawn every 3 months to see if there are any changes, height and weight is taken. So far no weight gain and no side effects. The possibility of TD scares me to death, but I don’t know what to do. I have another child with cerebral palsy and between all of them it is very overwhelming. My son feels good, he doesn’t want his tics to come back. He used to be very hyper and now he is calm, serious. I don’t know if this is his personality or the medication. He’s becoming a man and it is hard to tell. How do I take this med away? I just don’t have the courage to do so.

Hello everyone, I took your advice and researched the DAN providers and came up with a few that look promising. I would like to ask for your advise, which one I should consider. One of these doctor’s specialized in neurology and psychiatry, but does not provide any other testing or detoxification. The other one provides the testing and specialized in developmental pediatrics and medical acupuncture. I also found one doctor that actually was a co-founder of the DAN project (no details on treatment though). I copied their posts and would really appreciate your input. I am scared to begin this treatment as much as I am scared of keeping my son the meds. There were no side effects at all for now, and ticks are practically non-existent, but a long term of Abilify (TD possibility) is out of the question. I try to observe his reqctions to food and noticed that he reacts to blue coloring , he gets eye ticks. But he loves his sweets. I would really appreciate your opinion, since most of you had plenty of good and bad experiences. Beata J. ***************************** Stephen Cowan, M.D. Specialties: Developmental Pediatrics, Medical Acupuncture Vitamin/mineral supplementation: Yes Essential fatty acids: Yes Gluten and casein-free diet: Yes Diet avoiding food allergens and yeast: Yes Feingold diet: Yes Digestive aids/Probiotics: Yes Colostrum: Yes Transfer Factor: Antifungal pharmaceuticals and nutriceuticals: Yes Secretin: Heavy metal detoxification: Yes IVIG: Antiviral medications: Yes Other: Acupuncture Approx. time spent on initial consultation: 1 1/2 hrs. Approx. time spend on follow-up consultations: 30 - 45 mins. DAN Conferences: Chicago (1995), Boston (2002) ********************************* Jay Lombard, M.D. Brain Behavior Center Specialties: Neurology & Psychiatry Vitamin/mineral supplementation: Yes Essential fatty acids: Yes Gluten and casein-free diet: Yes Diet avoiding food allergens and yeast: Feingold diet: Digestive aids/Probiotics: Colostrum: Transfer Factor: Yes Antifungal pharmaceuticals and nutriceuticals: Secretin: Heavy metal detoxification: IVIG: Antiviral medications: Approx. time spent on initial consultation: 45 mins. Approx. time spend on follow-up consultations: 20 mins. DAN Conferences: Dallas (1995) ******************************** Sidney M. Baker, M.D. DAN Conferences: Co-Founder of the Defeat Autism Now! (DAN!) Project

Jennifer, I am new to all this, so forgive me if I sound stupid. All of the testing was done by what kind of doctor ? I am new to this, just recently contacted this forum and learning a lot. I found an Integrated Medicine doctor (Dr.Ali) that I remembered reading about in one of the Latitudes issues. I read about all these diets, testing but I don't know if my son would cooperate. He likes sweets and junk food too much. Well, I will appreciate your input. Beata J.

Just what I was looking for. Thanks. I just have a question, any idea what should I look for when choosing a doctor? Any advise?

Did any of you used to give your children medication before switching to the alternatives? Who recommends all of these supplements because dosage also counts, right?

Unfortunately, it is hereditary. My husband (not diagnosed) is suffering from variety of tics. CP stands for Cerebral Palsy. My son is on Tenex for about 2 years. It helped for a while, and helped his mild ADD a lot. No OCD. He is taking Abilify for about 2 months now. The dosage is very low, but the positive reaction to this med. was almost instant. I refuse to give him more. It is a temporary fix as far as I am concerned. His tics are extreme blinking and jaw opening (at the same time) body movements and vocal sounds (although not much recently). Actually his psychiatrist recommended flax seed/fish oil, or rather said it is OK to take it, considering there were some rumors about its benefits. Can’t say if it is true, my son forgets to take it. I need to find natural or environmental doctor. Any ideas? NY area. By the way, what kind of doctor is allopath? Never heard of it.

Thank you for the information. I will check out the forum. I’ve heard about Bonnie Grimaldi’s treatment. Is it safe to take so many supplements? Did you consult with anyone before you begun? Of course, my son’s doctor didn’t recommend it when I mentioned this treatment, just flaxseed. His regular allergy tests came out negative. My son, also in 7th grade, has no side effects to his medication yet, and it works for now... What is very intriguing about the HNI treatment is the fact that using FDA approved medication in very small doses, this treatment is supposed to restore the blood flow to the brain and improvement is supposed to be PERMANENT. There are also no side effects and nobody was ever hurt by his treatment or gotten worse. I think it is mainly used on stroke patients. What I feel uncomfortable about is that it is 5K (2 weeks + additional 2 later on) and they are located in Florida, and we live in NY. I think patient should be closely supervised while on any kind of medication. I didn’t feel this treatment was right for my other child who has CP. I don’t think I can deal with more medication for very little progress. But in case of TS, it might be a different story. On the other hand, there are plenty of crooks, even doctors, who just look for an opportunity to abuse our need for help and our desperation.

Hello Everyone, My son is 12 and right now on a 5mg dose of Tenex for his ticks and in desperation, we had to put him on this new medication Abilify, only 2.5. He was so bad, that attending school was very hard. We didn’t know what to do and it was the best way to help him, for now. I do not want him on this medication for a long time, since like any other anti-psychotic medications, there are some serious risk. I am sure most of you know what it is. Well, I found this new institute that claims that by restoring blood flow to the brain, it can help people with TS, CP, autism, learning disabilities, etc. www HNI.online.com. Has anyone tired this program. It is costly. Beata J