trubiano

Peglem, another friend of mine had a similar situation with her son hurting himself. She finally gave in and started giving him clonidine and in about a months time he stopped. It helped with the ADD and tics he was having also.

Thank you emma1! This really makes me feel better. He doesn't act on the thoughts he just keeps telling me over and over he wants to do them, so it helps knowing he shouldn't hurt himself. Where do you get you inositol, is there a brand I should look for?

Hello all! I read often, but post so little these days. My son is in one of his OCD/spacey modes this month. I have been doing the diets, fish oil, vitamins, and PCN for over a year and the tics THANK THE LORD are gone. We just deal with this darn OCD/spacey stuff now. Here are my questions. 1st: His OCD involves doing something that will hurt himself such as, touching a fan while it is running, putting his fingers in the car window and rolling it up, and wanting to open the car door while we are driving. He has been really good and telling me about his feelings and not acting of the impulses, but I'm afraid for when he gets older. Will he be able to control himself and what if these urges turn into hurting someone else? My 2nd question is what are all of you doing for the OCD? Sometimes it is like my son is in a druken confusion. He asks weird questions over and over and is so forgetful. Is there something I'm not giving him that maybe you are that works? I am trying to stay away from the clonidine our doctor keeps trying to push on us. Thank you for any help!! I am so happy I found this site so soon in my son's issues. I know all the support I have gotten has helped him recover.

We have only been dealing with PANDAS for a year and the antibiotic, fish oil, and multivit have been very helpful. I was told by our neuro that PANDAS was a pediatric issue and that once he reached 18-21 years things should be over, BUT they can not tell us for sure. As for school I went in to the teacher in the beginning of the year with the PANDAS print out and told her if she noticed something was off at times this is what is going on. I had to go in and talk with her again 6 months later when he was having a huge flare up. He was getting in trouble with his focus issues and OCD behavior, so I reminded her that positive reinforcement was needed, not punishment. I would be concerned that your PED isn't willing to help. They should be giving you the antibiotic and monitoring labs. The psychologist was good for a few visits to learn coping skills to the behavior, but why keep going after that? Maybe others continued, but I felt like once we lerned how to overcome his OCD feelings when they came therapy wasn't needed. Dr Murphy in FL would be a good person to go see. She will give you everything your PED needs to continue treatment and maybe then you doctor will feel comfortable with what needs to be done. One last thing that will always help is this forum! We are all here to help one another!

I also was offered anti-depressents for the OCD/emotional issues and my ped neuro wanted to give clonidine to help relax tics and basically mellow his moods. I didn't go with any of thoose routes. The infectious disease doc wanted to do the same. I can only tell you what has worked for us. I'm in GA and took my child to see Dr. Murphy who helped, but I already went in with so much knowledge from the wonderful people on this site that she really didn't have much more to offer me. Get the antibiotics, supplements, and for my child we learned great coping measures for the OCD/emotional outbursts by going to see a psychologist who taught him how to fight his urges. The PANDAS symptoms still come and go, but if I look back at how he was this time last year it is 100% better!

Me too!! I found it for $55.25 with free shipping. Anyone find it cheaper? Also, it says it has probiotic and the Omegas in it. Does that mean I should stop giving the ones I am having him take?

Hi Pat! The answer to your question is yes, except we have been lucky to not have a vocal tic. The tic comes the same time every year. It lasted a little longer this year than normal. I did take him to an allergist where we found out he was allergic to grass and molds. They wanted to do allergy shots, but I'm afraid if he starts them the tic will get worse, so I have been looking for something to help(no luck yet). We did try Zyrtec, but it made him very mean and I also read on here that it can cause tics, so I use benedryl when needed. When my middle child first started getting sick(PANDAS) they wouldn't believe me that something was actually wrong because his brother had tics and they said it was genetic and probably allergy related also. I'm at a loss on what to do with him. With my PANDAS chid I have been very lucky to get the PCN daily and his OCD/focus/emotional issues come and go every few months. Trying to help my older child with the seasonal tics is my main concern this month!

Is your daughter taking 1/2 dose in am and 1/2 dose in the pm as suggested? I want to order the intrakid, but my son takes PCN 2x daily and it says not to take any meds until two hours after taking the intrakid and I'm worried about his PCN schedule since he is in school. I wondered if your daughter took the whole dose at one time and if it gave her a tummy ache or anything? Thanks!

myrose: My older child has a seasonal tic issue. About two years ago we were sent to an ENT after taking several medications they couldn't get his stuffiness to go away. A CT did show complete blockage in his sinuses. The ENT did a nasal culture that came back with a bacterial infection and once he was put on the proper antibiotic we have not had an issue with blockage anymore. He does have seasonal tics due to allergies that I wish I could find something to help with that!

Bonnie: You mentioned your friend uses an allergy med to help with tics? Can you find out what it is?

I finally got a PED who is willing to help!! She has agreed to do allergy testing with his yearly blood work and I need to know what I should have her test for other than the normal food panel. He is a PANDAS child and still has some confusion issues/constant rash all over his body. I think might have something to do with allergies? Any ideas what to ask for??

If you are able to, keep giving the penicillin. It took about 6 weeks before my son stopped ticcing completely. I kept telling them they needed to give him something stronger because it didn't seem like it was working, but it did and still does. I pray it will help you too. I was very scared and frustrated in the beginning. Every doctor just kept pushing medications on us because they had no clue what to do. Finding this site was a Godsend. We are all here for you.

We have been really careful with buying to many things. Our psychologist told us if something new is coming in something old needs to go out. I have let him list things on ebay and drop things off at our local Goodwill. I thought it would be hard, but when he gets to take his money earned to the bank and put it in his savings it excites him. I do not complain about taking him to buy more webkins or books because then I would be complaining about him behaving and focusing that week. The only time I am giving into his wants are when he is changing a behavior for the better.

So far so good!! We went with the positive reinforcement and I'm sure your children are like mine and they collect everything! So, we tried two different things and it is working. If my son gets his table work done with in the 30 minutes they are given he can pick a book from his favorite series to read at his desk the rest of the class time. I went and bought the whole series, so he was so excited to have the collection! Then for at home, if he finishes his table work everyday, on Friday I told him he could go and pick out a new Webkinz toy. This excited him so much that I can't get him to stop looking on the computer planning which ones he is going to get every week. I just pray this keeps working until summer comes! I saw our Ped today and she is willing to do a "food allergy" test on him. Is there something I should ask for or will this cover everything? Thank you again for all your help.

bmom: You got it right! My 8 year old started having a neck/head bob 3 years ago in the summer and it lasted until around November that year. The doctors told me it was a childhood tic and he would grow out of it. When it stopped we were so happy and never thought about it again until it started the very next year, same time. Again we were told it was a childhood thing that would just come and go. It wasn't until my 5(6 now) year old started with all the weird behavior and tics that I started to question things. My PANDAS child started in Feb last year and so I was lucky to have all that info when the tics started again for my older son. I took him for allergy testing(against doctors ideas) and he was highly allergic to golden rod, grass, and molds. July-Dec is when they are all blooming and growing the most down here! They wanted to start him on allergy shots, but I'm afraid if we inject him with the things he is allergic to it might be even worse. So... I have been looking for something he can take that will help with the allergies during that time. I have tried some things our naturopath gave us, but they didn't help at all. I really believe both my children have allergy issues I don't even know about yet. After talking with my mother she all of a sudden remembered that I was highly allergic to all foods, even her breast milk. She said until I was three she had to special order rice milk for me and that chicken and green beans were the only table foods I could tolerate. It's funny she never thought to tell me this before! So, I'm getting an appointment for all my children and getting some food alllergy testing done.

kkver: Zyrtec has been known to cause tics??? My oldest never had a tic just allergies and was on Zyrtec for a year. The next year is when his tics started. This makes me very sad to think I might have caused this.

Welcome! You mentioned your child had a temp and some sort of virus, did you test for strep? I have a PANDAS child who just started knodding his one day. With-in a few days it was 5-10 times a minute and I took him to the doctor. They said it was just a childhood tic and not to worry. In the next few weeks it got worse, he was very emotional, and could not even write his name anymore. They told me it was because of his tic and he was embarrassed that is why he was so emotional. I told her something was wrong and when she consulted with the head doctor they decided to do strep test(no symptoms) and it was positive! Long story, but tic is gone with the use of penicillin and other natural meds. Either doing a blood test or a swab I would ask, it can't hurt to try! We are all here for you. I know how lost you feel right now we have all been there and the only way our children are getting better is by is being so pro-active.

heveritt1: Thank you so much for your reply! I am so happy I found this board a year ago! I met with the school principle this morning and explained what was going on. The reading teacher my son is having issues with teaches in a very "old school" manner. If my son doesn't have positive reinforcment he shuts down and you won't get anything from him. The princple was very nice and seems like she is willing to do what ever is needed. She did mention IEP, but as a last resort. Like your child, mine is very smart and doesn't have a learning issue. He just needs routine and doesn't work well on his own. He needs reminding often to do his work. The principle is going to talk with the reading teacher and every other teacher that works with him in the future. She suggested we have a meeting at the end of the year with his 3rd grade teacher(she will hand pick) and then again when school starts so they can all be on the same page with his learning needs. I feel so much better. Thank you for the NutriADD idea. I will ask our natropath about it. Is your child on a daily antibiotic? My son's tics stopped about two months after he started it and only come back if he is off the penicillin. We just deal with the OCD/emotional/focus issues now thank goodness! I never had him checked for food allergies Do you think our doctor can test for those? I do have one more question for you. You mentioned giving yur child an "immune booster" I thought we weren't supposed to boost their immune sysytem since PANDAS was an auto-immune issue. Did the natropath start that or someone else? Thank you again for your help.

Sunshine!! I have started him on the gluten free diet. Out of my three children he is the only one addicited to breads/cereals so this is going to really hard. What is GABA? I'm going to google it, but is it something I should have my doctor test him for? Thank you for your reply. I keep coming back to this board becuase we are the only ones who know what each other is going through and the support is wonderful. My doctor is very understanding and will do what I ask, but has never had another PANDAS child.

Are tics your only issue? My son get's focus issues, OCD, and becomes very emotional while in an "episode". If you are not dealing with all the other stuff and the tics have gone I would just keep watching for strep.

I have another non-PANDAS child who has severe head/neck tics starting in July and lasts until December due to allergies. They gave us Zyrtec and a nasal spray, but it didn't help the tics. I want to get on top of this for next year so if you find anything that works please let me know! Benedryl helped with the red eyes and Epson salt baths worked to relax him, but the tics stayed.

Michele: How is OT helping your child?

bmom: what do you use instead of the Benedryl?

I just wanted to say that my son's tics have not come back in over six months! He is taking PCN daily and he started ticcing only once because he was off his meds for three days.(was at grandmas house and she forgot) I really think daily antibiotic is needed in our PANDAS kids.

Thank you so much!! I met with his reading teacher who is over 60 and does not believe in positive reinforcement and told me she didn't have time to keep re-directing him. When I handed her the print out about PANDAS she didn't even reach for it, I had to lay it on her desk. I'm setting an appointment up with the principle. This is something we will be dealing with for a long time and if I have to force the teacher to treate my son a little differently than I will. I had not heard of the 504 plan and will be bringing that question up at our meeting. Thank you again!! Have you tried any natural things to help with focus? He is doing so well in every other way I'm afraid to put something new in his system, but if it will help him I will.