anne

I should have said in my prior post that he has not been on any medication for tics for about 4 years now. Anne

Hi Fixit, I just wanted to let you know that our Neurologist told us that a high percentage of children totally outgrow or have a significant reduction of tics by early adulthood. Of course, when my son was your childs age I was in a total panic as well. My son is now 20 and doing great. If he tics at all it is really not noticeable. I never believed he would be basically tic free, but he is. Our son was the worst between 7-11. We did begin medication at that time, but I wish so much we had not done that. I just wanted to let you know that I was in your shoes at one time and can totally relate to how you feel. I want you to know, that yes they can and alot of times do see a reduction of tics with age. Take care, Anne

I also have no info regarding Minocycline and Pandas, but took it myself for 10 months for Rosacea. I had tingling and muscle spasms in my legs after a while, thought I was getting MS. Had tests and they were negative. Then came down sick with severe joint pain in my fingers, ankles, wrists, knees, etc. I was so bad I could hardly move. I went to the doctor and when they ran blood work they said I had Hepatitis! I was shocked. Started to google for info and came up with several hits for a side effect for Minocycline. I found out I had drug induced lupus and Hepatitis. I went off of the Minocycline right away, my liver healed quickly, but the joint pain is still with me. My rheumatologist said he has a few patients with this from the Minocycline, sometimes it goes away after the medication is not taken, sometimes it doesn't. I unfortunately have not had mine go away. I take Prednisone, Placquinal and Methotrexate to keep it controlled. It has been a nightmare actually. If I had known what could happen I never, ever would have taken it. If it were me, I would definitely only use this medication as a last resort.

Thank you Caryn and Pat for your responses. I'm going to give the kefir a try for the whole family.

Caryn and Pat, Could you both please tell me how much kefir you give your children? I have started goat milk kefir for the family and have no idea if there is a correct amout to give. The bottle says serving size 1 cup. I was just wondering how much you are using per person. Thanks, Anne

Bonnie, Please don't be disheartened. My son started with motor tics when he was 4. His tics reduced significantly from age 16 on. He is now 19 and pretty much tic free. The neurologist that saw him at 5 years old, told us he thought he would outgrow it by adulthood. I so wanted to believe him, but was so scared. So I am very happy to say that it can happen, the tics can reduce significantly or go away. Anne

dc mom, I am not knowledgable in pandas, I just have a suggestion for the panties issue. When my daughter was 4 she started yanking on her panties to try and keep them away from her private areas. I took her in and they had no idea why she was doing it. Out of desperation, I found she would wear her little brothers boxer underwear, the loose kind, not the form fitting ones they have now. I have to tell you I was so relieved when they worked for her. She loved wearing dresses so there was no problem with them bunching up under pants. I still remember we went on a trip to Hawaii, and when she wore her bathing suit, she had the crotch pulled down to her knees. I felt so bad for her. Luckily she got over it, but it took quite a while. Anne

Thank you for your reply! I will check with his doctor first. I'm hoping it will be ok to try it with the Lexapro. If all goes well then hopefully could get him off the Lexapro. Anne

EA Mom, Thank you for replying so quickly. My son has been on the Lexapro 10 mg for about 4 years. We did try and take him down off of it once, but he didn't do well at all. OCD was worse, he was anxious and irritated very easily. So we got him right back up to the 10 mg again. He said he never wanted to try going off of it again, didn't like how he felt at all. So, I guess I will check with his doctor about trying the Inositol with the Lexapro. Everything I have read on the internet doesn't say there is a problem, but still wouldn't be a good idea to not ask the doctor. What I am hoping is that the Inositol will work really well, enough to start decreasing the Lexapro without problems. Maybe it is wishful thinking on my part. I'll let you know how it goes if we decide to give it a try. My daughter who has some OCD is using Inositol the last few months, and has told me it works great for her. She isn't on any medications though. Thanks again, Anne

Cheri, What is your opinion on adding Inositol with 10 mg Lexapro? Everything I read didn't list any problems with it. Of course I am worried about serotonin syndrome. I don't think it would be possible with the combination of Lexapro and Inositol. I want to use it for OCD issues. What dosage are you using for your son. I was thinking of starting very slowly with 500 mg and working up if needed. Thanks, Anne

EA Mom, I wanted to ask you about your past reply--"prozac 10mg/ day (we tried to wean her off Lexapro due to serotonin syndrome in May". My son is non pandas, just motor tic disorder/OCD, he is almost outgrown it now as he is 19. Only issues with OCD left. He is on 10 mg Lexapro and works great for him anxiety wise and OCD wise. I wanted to try him on inositol as I have heard so many great things about it helping OCD. Everything I have read seems to say that taking Inositol with Lexapro should be safe. I am worried after reading a few things about serotonin syndrome. Did your child get that from just taking Lexapro? And what dosage was that? What symptoms did she show? It is all so scary reading about it, I want to try the Inositol but don't want to cause serotonin syndrome. Thanks, Anne

Mom 2ck, I can totally understand your frustration with trying to find an answer or help for your child. We reluctantly used risperdal for our son also. We tried food elimination, vitamins, etc and nothing seemed to work. The risperdal worked really well for our son, but he did have some weight gain and it just seemed to take his "fun" personality away, made him tired and sluggish. He has been off of it for a few years now, just graduated from high school and seems to have outgrown his tics. We didn't really check in to the side effects, just trusted what our neurologist said about the drug, but as we were taking him off of the drug I started reading more in depth and was so afraid something would happen to him before we got him totally off of it. The worst was tardia discanasia--totally wrong spelling I know. Thankfully he is fine, if we had to do it over again would never have used this drug. Yet I know that is easy to say now that he is totally fine. At the time I was such a nervous wreck and was running in circles trying to make everything right with him. I hope you find the help you are seeking for him. I remember what a hard time that was going through it myself. Take care, Anne

I have a daughter(no tics) who ended up with MRSA. She started getting spots on her stomach and legs. She went to the dermatologist and they did a biopsy of them and said they were MRSA. Gave her an antibiotic(she is allergic to most) that didn't help at all. However, they told her to use Hibiclens which is an over the counter wash, and it works great at controlling it. She also has a perscription they gave her that she puts on if she get any new spots. She also has it in her nose, and right now, they just tell her to use the Hibiclens wash. She has been doing really well and hasn't had a problem lately.

I just wanted to add that my son is 18, was diagnosed with not TS, but a chronic motor tic disorder at age 6. He started at 4 with shoulder shrugging, 2 years later was a bad head nod, and a few other tics. The head nod was what was the worst for our son as it hurt his neck really bad. We think his tics are family related. I was told that the tics are bad between 4-18 as that is when the dopamine starts up in their system and is out of wack. We tried environmental dr, did scratch tests for allergies, and eliminated bad food. It never really did seem to help. Unfortunately we decided to medicate him, which I regret to this day. I truly believe that all of the natural treatments can and will help if they are stuck with. My son has been off his medication now for 2 years, and is doing great. He has just a slight tic when nervous--looks to the right, and mild OCD. I was told by the neurologist that most kids get significantly better between 18 and early adulthood. At the time, I so wanted to believe him but just wasnt sure. So, I just want to give people hope here, that their child has a very great chance of no tics or greatly reduced tics after puberty. We have an appointment next week with a naturopath that is suppose to be really good, and he is going to be tested by IGG bloodwork for food allergies. I still believe that may be his problem as he has stomach issues. We still follow Feingold and love it.

I found the lab statement which lists the blood test as endomysial AB, IGA (reflexive). So, would the stool test through Entero Labs basically be a repeat test even if one is blood and one is stool? Not sure what to do. Please advise. Thanks, Anne