lmkmip67

I just had a strep test done last week and it was negative (had a sore throat and i always jump to test). it ended up being a slight head cold that Ian got as well. Our first all school year.He really hasn't been sick at all for months and months. No one really has in our house. Hubby hasn't had a thing and we are the only ones in the house. His sister is at college so hasn't lived here in months. She has been here to visit, but not to stay. I can ask hubby to have the doctor at work give him a throat culture.

Seeing Lauren's story on the Today show is what caused my son to be diagnosed, or I would never have gone down that path. So thank you for sharing your story with the public even though I know at times it must have been SO hard to deal with all of that. I have learned so much through this journey and the biggest lesson is to not judge. No one knows what we deal with until they walk in our shoes. I hope they can find some help for those poor girls. I see their struggles in my son. Even though his tics are gone for the moment, the OCD lingers like a big black cloud. I will be following this story on the girls. Maybe this will bring some much needed attention to this disorder! I hope it offers help for them all, too. For there to just be an answer, is a huge step in the right direction. The psychiatrist pissed me off. Good for the one girl that stated she had tried all kinds stuff, and that she is more stressed from all of this than ever before. I hate media doctors that just pick up info before a show and think they know it all.

First of all, I am sorry to just vent here. I am so deflated with what we are dealing with I don't feel I have much positive to add to many threads here as I feel kind of jaded. I just talked to Dr. B on the phone as he was making the rounds in the IVIG clinic. My husband and son are down there getting his 5th. we have seen no improvement, retested for Lyme and all. Dr. B said he will do what we want, obviously. And if we want to take a break, he will not argue. But he doesn't think we should throw the towel in yet. The retested Igenex results were even less positive than the last time, so it really makes me wonder if I should bother with Lyme at all. I just don't know what else to do. We are waiting on some blood work to check co-infections again. Dr. B also upped Ian's dose today (hubby was thrilled with that, means a couple extra hours there today). During all this Ian's OCD has gotten worse. We are seeking therapy for him and a neurologist appointment in Feb. If I saw some improvement I would so fine with doing this. But I don't. I see him getting worse. His brain is overrun with all the fear, worry, etc. he is on two antibiotics and there seems to be nothing that helps. Tics he had early on went away, but those went away before IVIG. The Igenex results are so negative I don't know if Lyme is even a concern. Dr. B doesn't think it is from the test results. And I have to question dropping $$$ on a doctor for Lyme if I see no positive results at all. But I have to help this kid, he is miserable. Ok, sorry for venting yet again. I watched those girls with the tics on the Today show this morning. I feel so badly for them and hope they can get some help. I know the hopeless frustration they are feeling. There is no doubt there is SOMETHING medical going on with Ian, too. He does flare when exposed to things. But traditional treatments here are not working either. So frustrating.

I am not sure there is one standard answer. I know when Ian had really bad tics, a few days of Motrin seemed to really knock them out. As did a taper of steroids later. So I am not sure it was due to the antibiotics. But in general his tics left in about 5 days once medicating with Motrin or steroids.Now this did not cure the tics, they did come back once he flared with exposure to illness. But they have since subsided and disappeared. I just can't say what it had to do with because of all the different things we have done, including IVIG.

Thanks for the input, everyone. That makes me feel a lot better about trying something when we do get in with the neurologist. Nothing is an emergency here. But he has slowly gotten worse OCD wise over the past year, and we do need to keep trying things. I do believe that is next. I will keep trying to update as I know it is helpful to others as well.

So true. I think the each kid is so different and so is each treatment path for each kid. It seems there are no rules, really. What works for one, may not work for another. And when what are doing isn't working, as a parent, I am going to try another path to help my kid. We all are. Some experiences may be bad with SSRIs, but at some point it may be necessary to try them, and I think we are there right now.I wish we weren't. But antibiotics and IVIG have not helped us.

Thank you, Nancy! That really helps me. I worry so much about him, so hearing that it may be helpful is really uplifting for me. I want to see what the neurologist says, but I am open to a low dose and see how he does.

The new therapist we are seeing does specialize in OCD and knows of PANDAS very well. But she really thinks Ian would benefit from a low dose of something that traditionally treats OCD. Being only 8, I am not sure. I am not against it, but not sure I am for it yet either. Has anyone else tried medication for their child's OCD? What was your experience, positive and negative? We are going into our 5th IVIG (if this one does nothing, like the rest, we will be taking a break after this one). We are also going to try the LLMD route and are seeing a neurologist next month. So we are trying many avenues. But the therapist just felt that he has so much going on that he could really benefit from some medication to calm the OCD a bit and help him work on skills and tools. A part of me wonders how a PANDAS kid will react. But then again, traditional PANDAS treatments aren't working for him anyway, so.....why not try it, I wonder? Lisa

ERP was my requirement! lol She does it, so I am good. But we will see. I ONLY looked into therapists that offered that. And only child psychologists that specialized in OCD. So I feel like I filtered out a lot to start. And I have a couple more lined up if . she doesn't work out

Oh yes, I have been the therapists before myself a couple of times. that is why I am trying this one and we are on a waiting list with another one, too. If one doesn't work out we can try the other one. But we have to start somewhere.

We have held off until now, but Ian clearly needs some support help, as do we. I spent a good deal of time research psychologists locally that specialize in OCD and found one that appears to have good ratings and can take us next Thursday. She was very nice on the phone, so we shall see. He previously did see a therapist about 1 1/2 years ago for the OCD type issues. But she was more of a family therapist and eventually even said she couldn't help us. So I am hopeful that this will provide us all with some tools. Has therapy helped anyone else?

Huh. I totally didn't think about Motrin. I just picked up a huge bottle at BJs of the dye free stuff as we were low. I will start tonight!! I have done it in the past and it has helped tics immensely! I have some Aleve, too! I will give 1/2 at bed time and for school tomorrow and see how it goes.

Thank you! It helps to hear it sounds like I am on the right track. I am kind of beside myself with worry over this. I swear this disorder causes parents to become OCD too over some things. sigh....I hope someone else can chime in, with something similar. His dad is on board and always has been, so that is good. it is always something with this disorder.

I know there is a thread about discipline in general, but I have a specific issue with Ian. he is 8. And his main issue is OCD. But he can also attach to behaviors. He has a couple of friends, twins, at hockey, his age. They have "loose" parenting. Their dad laughs at a lot of what they do, they are goof balls. So is my kid and he is so drawn to them. Anyway, at hockey they have been saying things like, "hot sexy chick, kiss a hot sexy woman, etc." They laugh and dare other kids to say it to someone. My kid has no clue what the language means, either do they. He went a long with it at hockey. We talked to him that you do not speak to women and girls that way, don't do it again. But he has attached to it and is now bringing it to his bus, school and friends. He even tells me because he can't stop himself from telling us what he does, which is good. but still. He was telling me he was daring his friends to say that to a girl on the bus yesterday. Now he has been spoken to about it, and all of that. So he had his warning. Yesterday when he told me, all electronics were taken away and he has lost the privilege of playing with those other boys after hockey (DH often lets him stay after and play at the rink) until he is able to control his own filters and know when to not go along with something, etc. The issue I have is how serious saying these kinds of things are and he can not seem to let go of it. I do understand they have trouble stopping some behaviors, but to me this has to be stopped NOW. I am hoping the punishment helps. But I am not sure how to get through to him. He has a touching compulsion, too. Between the two and the unsavory language he is picking up, I am really worried I am going to start getting calls from other parents or the school. He isn't usually a leader, but he will go along with something if his friends laugh, whatever it is. he isn't a discipline problem at school, he really is a good boy. But what do you do when there is something that has to stop? It isn't a tic that he can't help. It is a behavior that has to be put to rest. He often cycles through behaviors too so eventually it will pass, but I can not wait this one out. We are working on finding a therapist that specializes in OCD. But it is hard and I can't get in for a month yet, so I need HELP!

Thanks to everyone for the responses. I am going to take some notes and ask questions. I am waiting on an appointment with a local Lyme doctor that seems like she will look into some of these issues. We will start there, anyway. I do have a phone consult with Dr. B on Monday evening. I am looking forward to getting his thoughts on some of this. He always seems very interested and I am thankful for that. I feel any case that doesn't follow his expected outcome, is also helpful to later patients of his. I am sorry I don't post a lot in may threads. I am so busy with my own business and juggling Ian's hockey schedule (only thing he feels good about himself with), 3rd grade homework (they have a ton and he fights it nightly, we often spend up to 2 hours getting it done with tantrums,etc). I will update as I can only assume it might be helpful to others in their journey. I am thinking we are seeing some lyme issues. I live in the woods of New England. I have no doubt it is possible even with negative test results. So we will explore this next, along with bringing a neurologist on board and a child psychologist for the OCD. We are going to explore ERP therapy and see how it goes. Just PANDAS treatment is not helping, so time to explore!

Thanks, everyone. It is so hard to see them struggle so much. And I lose my patience too, many times. I feel like I yell too much, yet he feels so horrible. i feel I must be a horrible parent to lose my patience sometimes. It is just so hard. I am making those appointments today, so at least I will feel like we are taking a next step. I am thinking the Lyme issue is next...

He does. But at this point I don't think we are considering that. If we find down the road it might be a good idea, perhaps. I am thinking Lyme is a more likely route for us right now. he doesn't get sick hardly every, never has infections, etc. i will keep it on the table as an option if circumstances suggest we should.

He doesn't have a set number. I think it depends on the child and how they respond.

I agree. I am sure we are not the first to not respond to IVIG. But it seems most end up positive for Lyme. We are going the LLMD route next. Regardless. that was plan B and we have to now try plan B. Plan C would be homeopathy. One step at a time, I guess.

I thought I was doing the right thing seeing one of the leading professionals with this disorder. Yet I can't help my kid. I don't know. Even Dr. B seems totally puzzled. Great, we are the first case that doesn't follow the protocol, lol. I am going to explore an LLMD. I have to, right? I have to help my kid. I didn't go the Neurology route because it seemed so pooed pooed here, with pandas. But I have to go that route now, too. If they suggest trying some medication, I will do it. I have to help him. At least try. I am sorry to put down IVIG, it is a wonderful thing for some, it seems. Not for us.

Thanks, I tried to PM you but it said you couldn't get messages.

It is time to move on to plan B. We have done 4 IVIGs with Dr. B and Ian is worse than he ever had been. His OCD is starting to cripple him big time. There haven't been any tics. But the OCD is worse than I have ever seen it. There are no co-infections. Lyme was all negative. he should be a typical PANDAS kid. But antibiotics do nothing. IVIG has done nothing, almost seems to make him worse. I don't know what to do next. He is now moving into even numbers ok, not odd. Saying things twice, walking up and down stairs so many times, etc. He is crying tonight because he can't take it anymore. He says his OCD is driving him crazy. He is only 8, no kid should have to live this way. We have tried this route, but it is not working. Steroids seemed to help at first. We haven't done them lately except the dose with the IVIG. He is on azythromycin again, was before. We have tried 3 or 4 different antibiotics. Clearly this is not helping him. The tics were here earlier in the year but seem to have subsided. The OCD is 100 times worse. I am going to make an appointment with a neurologist because the PANDAS route is not working for us. I am not giving up on it, but I don't see the point in putting him through 2 days of needles and treatments when it does nothing. I should have seen SOME improvement from it by now. I may make an appointment with an LLMD as well, but not sure how good that will be since there is no issue with Lyme according to the tests.....we did the whole IGENEX work up. Sorry to whine, I just don't know what to do and I am so frustrated. Lisa

This is a great update! I am so happy for those seeing great improvement. I am keeping this in the back of my mind as we are not seeing much improvement with IVIG, and test negative for Lyme. Thank you for updating and sharing!

Last year it was about 3 weeks for us this time of year. I would make the appointment if you think you want to see him.

I think he usually suggests every 8 weeks. The number depends on your particular child. We are heading into our 5th in January.