lmkmip67

Does anyone have a link to Dr. T's facebook page? I can't seem to find it.

That is interesting. Something to keep in mind for sure. we go for another IVIG in two weeks so I am going to take some more notes from these posts and discuss with dr. B. Yes, we have done Igenex testing. I will also ask the neuro about the other drug and see what he says.

Yes, Ian is getting HD IVIG. Yes, we have tested for everything with Dr. B, even Lyme twice. I honestly feel like we are doing everything we can. I do know that SSRIs can cause certain things in kids, but we started him very low and are going very slow. Our Neurologist is great. He doesn't seem depressed what so ever. He has nights when he will cry over his OCD, and feel sad about it. But he had that before we was even on prozac. He doesn't mention anything even remotely suicidal and he actually has a very intense fear of death, that seems to be the basis for a lot of his fears. But again, we see the neuro in 3 weeks. I will be discussing all of this with him. He started prozac because we had no idea what else to do to help him. Therapy is great, but he wasn't able to really focus on it. Dr. B was perfectly fine with us trying this short term.

Ian is going into his 6th week with a low dose of prozac, 5mg. It does seem to have helped his mood quite a bit, he isn't as argumentative as he was. But I don't really think it is doing much else so far. the OCD is the same. He always has fears of many things, but it seems the intrusive thoughts are worse lately. He also has the urge to confess all the time, things he did, things he thought he may have done, and just every thought he thinks may be bad. lately he thinks things and feels the need to tell us. I guess that is good, not sure. He also sees a therapist and we see her on Thursday. He doesn't seem depressed, but he is insecure from all of this. This morning he told me the OCD was making him think about killing his friend's family, but then told me he knows he doesn't want to do that, but doesn't know why the OCD is telling him he wants to. He will also say the OCD makes him think thoughts about kissing, (he is so anti girl, and he seems truly disgusted by the idea of girlfriends, etc, but that seems pretty typical 8 year old boy), etc. I am going to talk to his therapist about this on Thursday again, but the thoughts are what really bothers me. To hear him say things like that really scares and worries me. Not so much that I think he could do anything, he is a the sweetest boy really, and a really good friend. The thoughts bother him something terrible too. I guess I worry more the confessing may require him to say something like that to his friend or in school, and someone will get the wrong impression or not realize he has OCD related to PANDAS. I need some reassurance and other's experiences in dealing with this. I don't know if we need to increase the Prozac, or what. We see the neurologist in 2 weeks for an update appointment. Please someone help me deal with the worry all of this causes me. can kids with these thoughts ever try to act on them? or decide the thought is a good one, etc? I don't know what to say to him about these thoughts. I try to say that thoughts are just thoughts, they are not harmful or dangerous and that they are not who he is, that we all have thoughts and to not fight them and just let them go. All that is really hard for an 8 year old to understand thought....And I am so very worried.... (we are going into out 7th IVIG with Dr. B and have had all the testing, we are still working on finding out the underlying reason for his PANDAS). Thanks!!!

We don't have a psychiatrist , but are seeing a neurologist at Children's in Waltham. He is starting Ian on prozac, low dose right now. He is up and up on all the PANDAS knowledge (doesn't treat it, but is up on the research, etc). If that sounds like something you would interested in, I can PM you his name, just message me.

My son is working through the body rash with Fifths right now. It seems like it has caused him to flare a bit. NOt sure as he is very itchy from it and that can make anyone cranky. But he has been more moody, OCd has been a tad worse and a vocal tic surfaced again. The only thing I can think of is the Fifths.

Thanks. Sounds like it might help him. Anything over 1 mg makes him very emotional and angry, so I think I want to try and stick to 1mg for now. We shall see. I will check out the drops.

I am sorry for asking more questions. I am curious if there are any melatonin supplements that are time release? Ian is going on 9, all of 60 pounds and does ok on 1mg, but more is too much for him. He tends to do ok if I give him one about 1/2 hour before bed, which is around 8:30. But he tends to wake up a couple of hours later and he is a mess. Crying, needs to watch his Nook (netflix) to settle down, etc. A few times I have given him another 1mg melatonin right then and he soon will sleep with no issue within 20 minutes. So I am wondering if there is a good supplement for children that is time release. He has bed time issues with sleep and will be up to 11 or later otherwise. He can swallow small pills, but something the melts or under the tongue would be great. TIA! Lisa

I do plan on having a meeting with her soon as I need to either find out if she is willing to be on this team, or not. Ian has a great PANDAS doc, neurologist and a therapist on board. I feel like we are at least working on things from a few directions. But his pediatrician has always made it clear that she isn't really on board with PANDAS and frankly, she doesn't seem that interested. I am going to give it one more chance by sitting down and talking to her directly about this. But once that happens, I am likely going to have to find someone that is invested in this. I can't travel an hour for pediatrician, I need someone close so when he is sick I can take him in. Someone that works with our local hospital. But I am not sure how to go about finding one? I can look over lists and lists of Drs that practice around here, but I don't physically have the time to go through and meet with each and every one. I can't take time off of work to search endlessly. So how do you go about finding someone that will be on your team, without having to sift through 10s of hundreds of doctors? Lisa

Huh, ok. I will take it as a good sign then. I wasn't aware it could pop up weeks after, but I am all for being positive! he also just started on a low dose SSRI, but that was almost 2 weeks ago, also. And he has not had any side effects from that, either. So I doubt it was that just out of the blue. he said it felt like the one he gets after the IVIG, so I will assume it is a good sign. thank you!

The nurse called from the school today and said Ian had a pretty bad headache. I even talked to him on the phone and he was clearly irritated by it as he even stopped playing soccer during recess. So I know he wasn't trying to get out of anything or wasn't nervous about anything, he said he didn't know why. Is it possible for a headache to pop up this late after IVIG? He had a slight headache the day after, but so far in all 6 treatments has never has more than that. Lisa

Oh yeah, more days that not, lately, I want to escape. I am hoping spring helps when we can get outdoors more. But it has been such a mild winter anyway. I just get tired of all of it some days. Not whining, just letting you know you are not alone. we all have those days. ((hugs))

Ian goes back the very next day. He doesn't usually have any side effects except maybe a small headache. So he is on the bus and raring to go!

first of all big hugs to you! I know how hard that place is. It sounds positive that you are seeing some glimpses. It also sounds very likely this could be PANDAS, but keep working towards a diagnosis. You will find the answer and your not crazy. This is often a puzzle, and many of us are still trying to find the right pieces. In the meantime one book that is very helpful is The Explosive Child. Many recommend it here and it can help in coping with the rages. It isn't a cure, but I find if I feel like I at least have some tools, it is easier to cope. Also, take time for yourself when your husband is home. It is very important to have time away from them to recharge. Lisa

nope, not at the same time. I give the Aleve over night, then Motrin during the day.

Thanks, LLM. That helps a lot. Yes, he has named the OCD "Dumbo." I will check into that book. We have a couple, but not that one. He seems to attach onto whatever he is learning about at the time, so while I know some of it is normal, he does obsess about it more than his friends. It really is bothering him a lot, to the point of crying it is driving him so nuts. So I hoped to find some things to help him gain some control. Our therapist doesn't seem all that useful, frankly.

Yep, he is on antibiotics and has done 6 IVIGs, so we are aggressively treating it. We are trying the prozac in a low dose to help with the OCD while we figure out all the pieces of our puzzle. I like the worry box idea. What i mean by he confesses is he will confess his thoughts because he feels they are wrong. He seems obsessed with kissing lately. He is an 8 year old boy so does not love girls. He things all that stuff is still icky. But he seems to obsess about kissing thoughts, for instance. He thinks it is wrong, so he tells me about it over and over and over, in an odd fast talking, mumbling way, almost. HE confesses other things too like a friend at school fell on his arm while they played soccer at recess. Ian ended up piling on top of him trying to get the ball. He felt all day that the sore arm of his friend might be his fault (it wasn't and the friend was fine). But he had to confess that he wasn't sure if it was his fault, he didn't think so, but maybe, etc...on and on.

Ian (8) has been really struggling with inappropriate and intrusive thoughts (many of a physical nature as far as kissing, parts of the body, etc). He has others too such as what color people ( they have been learning about slavery in school). The fact is he seems to attach to all kinds of things, these are just the things lately. He feels the need to constantly confess his thoughts. We are in therapy, but all the therapist tells him to do is to talk back to the OCD, tell it to go away, etc. But I think the thoughts come so fast and furious he isn't really able to do that at 8. Does anyone know of any techniques that are helpful with this type of thing? He is young, but not too young. He is clearly upset by these things, and feels the need to tell us all the time. I am at a loss. I am going to try to dose around the clock with Motrin and Aleve for a week or so. That is all I can think to do. Unless are there any natural supplements that are helpful? He is starting on Prozac tomorrow actually, but that takes a while to kick in. I just need some ideas on how to help him.....

Thank you for your updates, Stephanie! I still have your Dr's name filed away in case we decide to try this route. Eventually we may. I am so glad to hear you are seeing stable waters even this far out. I hope it continues for you! I understand having to enjoy your life. I find it hard to live on this board on a daily basis because I find I need to focus on regular life as much as possible, or I get badly depressed. It is about balance and you need to enjoy life! I appreciate the update, but am glad your too busy enjoying life to post much. That gives me hope!

We are heading into the same kind of issue. We will be starting a low dose of Prozac in a few days. I think it is fine to try a low dose SSRI drug to help. The thing with these drugs is there are so many out there. My husband tried a few SSRIs during a very stressful period in his life. A couple of them made him feel like you describe, kind of not caring, disconnected. He did finally find one (think it was Celexa) that he still felt things, but his mood was much better. If she is feeling numb and disconnected like that, she may just be on the wrong one. Just because one isn't working well, doesn't mean it isn't a good idea, you just may need to try others. I am not pushing medication like this, just saying it is relevant to try them, and you may need to try a few to find the right one. The great thing about medications like this is that you can do it as a trail for a few months, see how it works, and stop if it isn't working for your child. There isn't anything permanent about it. It took me a while to resign myself to giving Ian an antidepressant. But he is struggling right now and we have tried so many things. So as a trial, I am fine trying it. To me it sounds like you may need to try another medication. GL!!

Thanks, Jag10. Feeling so much better after being at home and getting the little bug tucked into bed. You are all right. I think it is time for me to take some time for myself this week and get a bit of a break. I was submersed in this stuff the past two weeks, with him being so much worse. Likely I am just overly stressed. Live and learn. I am not going to worry too much about more vaccines now, but just plan to hold off and see how things go this year.

Thanks, I will certainly email them and make sure. Louise said they only do them on Mon and Tue or Wed. and Thur. so I think it is ok. But I will email.

THanks, Kara and Colleen! I am realizing it is more my extreme disappointment in that we could have avoided it. Because your all right, it isn't my fault. Or anyone's really. Just something to look into, and your right, mayeb a reason now why it wasn't working. So many issues with this illness. I wish I was more helpful to some here. I just haven't had positive news to share much yet. Maybe my posts will at least be helpful in the long run if they are not seeing improvement. You never know. I don't know what I would do without this place though, I feel sane here. lol

Hi Linda, THank you for your positive words. You have so much more to deal with than I do, I should not whine. I guess it just gets to be a lot for all of us at times. I am glad to hear your middle son's numbers went down some, any positive news is great!! Yes, we will be there on the 7th and 8th (that Monday and Tuesday). Will you be back those same days? I have a huge preschool portrait shoot I do in May and if it is that week I may have to stay home. But I am not sure yet. I am trying not to beat myself up about it. I know I couldn't help it. I guess I am just disappointed too that something we could have avoided happened anyway. But going forward, I keep learning! In some ways it game us a bit more hope, too. I hope that you see some improvement soon with your oldest, too. I know how hard this is and you got it x3. Blessings to all! Yes, I am PMing you! Rich would love to connect with Steve. He also finds it therapeutic. He isn't online much so it is great if they can find someone to talk to as well. And thank you for being so open, I really enjoyed getting to know you guys and you have wonderful kids. All the kids are so awesome, it breaks my heart to see all our children dealing with this.

We just got home from IVIG #6. we have not seen improvement really. So we thought we might take a break. But talking to Dr. B today, we came to find out a vaccine that Ian got in Oct at his well kid check could be the issue. I am not sure how I never thought about vaccines, but I didn't. I do not recall Dr. B ever mentioning them to us in an appointment. My pediatrician is basically useless so she would never say anything against them. And I never thought about it. So when they said he needed the Hep A vaccine, I didn't think anything of it. I should have, but didn't. So I feel like a pretty shitty mother for letting him get it. The last two treatments really were useless then if this is indeed causing him to worsen, which he has. And it correlates totally with the vaccine. Sigh. So we are going to continue IVIG for now and hope this vaccine works its way out of his body. How long can it affect them, anyway? We are also going to try the low dose SSRI and keep up with the therapy. I think Dr. B thought I was careless for the vaccine, but I really never thought about it. Live and learn, but in the meantime Ian suffers. Not a mistake I will make again. But in the long run, do these kids need to stay away from vaccines for the rest of their lives? I just want him to be happy and healthy. That seems like such a big request these days. Lisa