lmkmip67

I have heard mention of Dr. Michael Jenike and of some work being done at Mass General with PANDAS. We are currently traveling to CT, but treating the OCD locally. We are not seeing much improvement from the treatments based in CT, so it has prompted me to look more into treating the OCD as best we can at the moment. That led me to the page on Mass Gen web site and they said they are treating PANDAS (I still have no doubt infection is a component for us). So I was curious if anyone has any information on what is going on at Mass Gen for PANDAS? Any one doctor actually treating it? If I missed news on this, I was most likely trying it ignore the PANDAS monster for a few months and throw myself into work since Ian is stable at about 50%, just not near 100% like I would like to see him. Thanks for any info! Lisa

I found it! This one would work so great because I could stay with my BF or my Aunt for the week with Ian. It talks about a week long, 10 hours a day, program. http://www.ocfoundation.org/uploadedFiles/Intensive_Treatment_Programs/Minnesota%20-%20Stephen%20Whiteside.pdf

I have heard mention of a few intensive CBT programs around the country. I know in FL there is a 3 week one. But I saw mention of a 1 week one in MN? Does anyone have any info on that program? Also any other programs around the country, say in New England/Boston area? I think this could be of great help to Ian at this stage... Thanks so much! Lisa

I would contact the special education department of your school and request getting him tested. My son is on an IEP (his OCD drives him nuts enough that he has trouble focusing). They tested him and he has been on the IEP for 3 years. He will be up for testing again next spring. At that point they will need a diagnosis of some sort to keep him on. He tests average in everything, but up until now they use the term "developmentally delayed" to have him on the IEP. After 3rd grade I guess there needs to be a formal diagnosis of some sort. So we got a letter from Dr. B of the PANDAS diagnosis and from our neurologist with an OCD diagnosis. That is all they will need. His accommodations are more academic, however. But either way, IEP or 504, I believe you have to contact the special ed department and request testing. I don't have much experience with 504s though.... Lisa

So I wonder why it wasn't brought up earlier that we should be getting frequent blood work done? Ian has gone for IVIG every 8 weeks for over a year now, and it wasn't mentioned until the last time. the issue is Ian and needles. this will be our last IVIG since we are not seeing benefit from it. I see slight improvement on Augmentin, but not enough that he doesn't freak out and require up to 3 people to literally hold him down and those people may get bruised in the process. So I guess we will really have to talk to Dr. B about it since there is no way he will deal with that every month. I have my list of things to try and homeopathy is quickly moving up the list....sigh....

Even every 2 months would put us back at this next IVIG. They started calling me literally 2 weeks after then last IVIG and mailed the orders out 3 weeks after. They were not testing liver function, they said they were testing white blood cell count, even though his last results were normal....

I can understand needing to keep an eye on something like that if a drug has the potential for certain side effects. But every few weeks seems a tad much. Unfortunately if that is what is required, we will have to find a new antibiotic or another avenue to try. I guess I will know more when I talk to Dr. B.

I am so confused by Dr. B's office lately. Ian is due for a refill on his Augmentin. The called and said they were mailing an order for more blood work. He had the bloodwork at the last IVIG in May that Dr. had done at his lab. All was normal. Ian has been an on antibiotics for 2 years. His basic tests for white blood cell count were perfectly normal. Now they office says they will not refill the script for Augmentin until they have updated blood work even though his results were normal literally 6 weeks ago at his last IVIG. He is having his 9th in two weeks. He has a huge needle phobia, so blood work is not a picnic for him (he is going on 9, so too big to hold down anymore). So I call today and I guess the PA said finally that since his IVIG is in two weeks he can wait until then. I only talked to one of the nurses and she doesn't know why or whatever. Just stating orders. So I am really going to have to talk to Dr. B this next time as to why they are requiring retesting of the white blood cell count every couple of weeks or so for kids on long term antibiotics? My insurance is not covering it until we meet our deductible anyway. But I can't haul in this kid who freaks so badly every couple of weeks or so for blood work. If that is what is required to stay on antibiotics I am going to have to find a different route. Is this what other Dr. B patients are having to do, too? If they saw an issue, I can understand. Or even testing say every 6 months. but every few weeks? I am so confused. This will likely be Ian's last IVIG anyway as we have seen no results from it. Lisa

I think we all handle things in our way. I kind of can understand because if I sit here and read too long, or start checking daily, and submersing myself in this, I get anxious and just want to hide under a bed, too. I don't have the aptitude or patience to learn about all the science and everything that this COULD involve. I get overwhelmed, anxious, tend to tank and become depressed. I have to take in my information in measured doses too. Saying this, my husband handles it even less well. I think we all do the best we can. My husband takes it seriously but he can't research data for hours anymore than I can. Nothing against those that do. I just can't do it. So I say yes, take what he can offer. If your juggling a lot of doctors appointments, maybe have him take over some things around the house, or homework help, etc. Try to give him things that will lighten your load and help in ways he can handle. I can't talk to my DH about this for more than ten minutes either. His eyes glaze over. But I know I have my limits, too, so I understand. He wants to help. He took Ian to two IVIG treatments on his own because I had to work. But he can't really take talking to the doctor about this and prefers I do it, so I talk to Dr. B via phone during the treatment. It works. It isn't fair that it is all on one person. But everyone handles things differently so I think we just need to find what works for each of us. Maybe try to keep the bits of information down to 5 minute bites. There was a point when I told DH that it was not up to me to make HIM feel better when he felt extreme anxiety about this and that I needed some support too. I said we had to get some family counseling unless he could sit down and talk about this sometimes (our talks usually deal with the stress of having a PANDAS child, not really the science behind it because even I don't handle that well). It was rough at first, but he didn't want to take the time or extra expense for family counseling (we don't really have issues, but the stress from PANDAS was starting to take its toll) so he finally started listening when I needed support and stopped appearing to be the one that fell apart. This can be stressful though and if talking to someone for a few sessions is helpful for you and your husband, there is nothing wrong with that! Chronic illness in a family is difficult. I would try to sit him down and talk to him about how you need him to be more on board with this and be a partner in your son's care. It isn't all up to you. It shouldn't be. And you deserve some time when you can forget about this as well. I hvae learned my limits. I may not know all the science behind it (reading tons of studies gives me hives, I am just not a scientific mind), but I know I have to take time away from here, too. When I felt less overwhelmed I was also less irritated at DH for not taking more of a roll in this.

She sounds so much like Ian! lol Ian does the thing too when he has to do something one more time or I have to tell him a million times before he will stop. Drives me batty!

Interesting. That is it exactly. he thinks it, he says it. Amazingly Ian has more friends than he has time for now. He is more social than anyone I know, so far it doesn't seem to be affecting his ability to make friends. he can be very rude with us. I have friends that tell me their child of the same is is like that too, but I just think it is different. I have worked with kids my whole like and I just feel some of his behavior is not as it would normally be, if you know what I mean.

I know my son, Ian, is very highly functioning even with PANDAS. But sometimes it is hard to pick out what is PANDAS and what is IAN or just an 8 year old boy. Does anyone else deal with their child having impulse control issues? Ian will just say things without thinking sometimes. He is also a comedian, by nature. I know that is all Ian. He likes to make other kids laugh. Sometimes he gets hyper and will just say things without thinking. he hurt the feelings of one of his friend's on his hockey team tonight when the told him, "Oh yeah, well Cole is a better goalie than you!" And I know Ian, he didn't mean to hurt his friend's feelings. It just comes out sometimes. We talked about it and he felt really bad, will apologize at the next game. But I do wonder if it is the age, or the PANDAS sometimes. He will also do things if he thinks it will get a rise out of his friends. He is a good kid though,and a very good friend. He just doesn't always think.... Lisa

I just saw this but unfortunately I have to work. I hope it is a good day! I will try to catch up with everyone next time. Please post if anyone decides to do another get together before the next meeting!

I think I am out, too. Boo! Hubby did something to his tooth and has to go to the dentist this afternoon so I am on duty for the birthday party my son is invited to. I really hope to make the next one as I have been trying for about 3 months. If anyone gets together at any other time during the month too, just to chat or whatever, I would perhaps be up for it! I hope it is a good meeting today! Lisa

5mg is extremely low dosage! Not sure I would judge response on this amount.My son has been on 20 mg for nearly a year and it really helped his OCD- it takes 2-4 weeks to kick in. Not sure I would abandon Prozac just yet without increasing dosage first to note response. well, he never had episodes of sadness like this before or the 20 straight minutes of sobbing from the core of his being saying he wants someone to just kill him. So that really does scare me. He would get frustrated with his OCD before, but never sob like that. And he gets sad for no reason, really quiet and down, which he never would do before either. I am watching him closely because of the potential for side effects and I do notice these as new things.

I just thought of something. I give Ian melatonin at night. That is when his sad times seem to happen, when they do. I wonder if there could be any reaction to that and the Prozac? When he took too much melatonin he used to get very agitated even before Prozac. It just occurred to me , so I am curious....

Good idea, thanks!

Thanks, Nancy! Yep, I am so thankful he is knowledgeable about PANDAS so he was fine with me cutting the starting dose in half (that is where we are now) and waiting the full 10 weeks to check in I feel like he is on our team so I am sure will be helpful. He even emails back personally, imagine that! Our pediatrician pretends we don't exist, I think. lol But the part I love the best is he is totally open with conversing with other doctors on the team, and taking their input into consideration. I think the meds can help Ian, we just need to find the right one. it is just part of the coping strategy we are dealing with now. I will keep the lexapro in mind, too and see which one he prefers.

Thanks for the feedback! I will maybe ask for Celexa to try in him. We have done the just PANDAS route for 2 years, and just felt he needed something to help a bit with the therapy and all. He is a jumpy kid by nature,, so not sure if he is worse that way or not. I do keep an eagle on his emotions, too. So that is why I want to mention this to the doctor. He is totally on board with PANDAS (doesn't treat, but doesn't poo poo it, knows a lot about it) so I am sure he will be very willing to work with us.

I posted this in the OCD forum, too. My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much. Lisa

My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much. Lisa

I did get some earlier by writing to the nurses. They mailed them. Lately though the only way I get anything is when Ian goes in for IVIG and I request it then and there. :-/ I requested a letter for the school that would qualify Ian for his IEP next year, and it took them 6 weeks and I still didn't get it. He went this week for treatment and we got the letter day of. So I am not sure how to accomplish it except to keep bugging them. Try calling and emailing, I guess.

Hi Kara, I tried to message you but I think your box may be full. I think I can make the next one, I am hopeful! lol

I won't be able to make it that far on Wednesday but I hope you all have fun. Post if you decide to do it again. Just a rough day with work and all, and it is an hour or so from me.

Maybe! It would just depend on when and where. I am in central MA.