lmkmip67

Thank you! That worked! We have our appointment and are on the cancellation list. I feel good about getting this moving.

Thank you! I could not get that up for anything. That is the one I saw before.

Is it Dr. Jones? I can't find an actual web site...I swore I saw one at one point but can't find it on Google...

WE talk about them as Dr. J, Dr. B, etc. I can't find him on Google, lol. Thanks! Lisa

THanks, everyone. Thanks Kara, I got your PMs and will be in touch! I think he is learning and I totally love him. My frustration isn't with him at all, just wishing I knew more earlier. I think we all have that frustration at one time or another. He is helping us figure out this puzzle. Looks like it just time to find the next piece.....

Wow, I didn't realize he was that much. There is a local one I have thought about calling that is less and I have heard good things about. I hate to make it seem about money, but with job uncertainties right now, I just can't take that kind of funding out of pocket until we know more. I guess I can make the appointment and then cancel if I have to. If he is booking out until March, maybe I can figure something out by then or we will know more job wise. I hate thinking I am making my son wait for something that could help him, but basic necessities have to come first at this point until the job issue is settled. I feel like I try and try to help him, yet I keep getting backed into a corner.

The drive wasn't too bad, the wait was awful, 2+ hours. not good for a hyper 9 year old boy who is afraid of blood work. But we made it. Then 3 hours home. Anyway, so we are at a fork in the road again. The IVIGs did nothing, yeast treatment did nothing. Antibiotics do a little, and the prozac helps the OCD, yet causes ADHD symptoms. So we were stumped. Today Dr. B looks at Ian's Igenex tests from 1 1/2 years ago, and says, "Yes, they are negative according to the CDC, but to me these would say positive." Huh? Well, I hemmed and hawed for the last year to make an appointment with the LLMD, Dr. B said he couldn't say I should since Ian was negative. But then today he says, yes, I would say this could mean something. I like Dr. B a lot. Even though we wait so long there for our appointment. I know it is because he is so busy and trying to help so many. I just wish he would have said that when the test results first came back. I should have made the appointment myself anyway, but I didn't. So now I feel it is the necessary next step. WE just found out DH is going to lose his job. We don't know exactly when yet, they are not laying off exactly, so he is not sure about severance, etc. Or if he will even get any. Unemployment will barely cover our mortgage. I own my own business but it has really covered the extras like all the medical treatment, travel expenses, etc. plus hockey fees, vacations, Christmas, etc. Now it will have to go to pay the important bills. So I have no idea about health insurance (not that LLMDs take it anyway) but I sure know I can't afford these huge fees they charge at the first appointment and for tests, etc. So on one hand I am a bit irritated he didn't say something earlier, when money wasn't an issue. But on the other hand I am hopeful. Maybe this can help Ian finally. The antibiotics still keep the tics away. So something is going on. Other co-infections aren't an issue according to blood tests. So this seems the logical path. I am going to have to wait a bit to see if we find out job info before I can make the appointment. Uggh. It is never easy and we can never get a break. Does anyone know about how long it is to get an appointment with Dr. Jones? And could anyone tell me what to expect with the first appointment? I can't fund tons of supplements right now, to be honest with the unknown....Does he require more tests that are out of pocket? Or will he go on the Igenex so we don't have to do that again? Thanks! Lisa

This is so wonderful to hear! I came on board here two years ago. I needed to hear a hopeful story today, for sure. I am at the point with my son, wondering if we will ever figure this out and have answers. I will keep fighting for him, as you did for your son. Thank you for the wonderful update! Lisa

I think it makes perfect sense that symptoms may flare during times of anxiety or excitement. You have to think of the symptoms of anxiety and excitement, increased heartbeat, increased blood flow, adrenaline rushing through the body, etc. What actually happens to the body is basically the same, regardless of WHY, anxiety or excitement. Saying that, my son definitely flairs when he is excited or anxious. Tics especially.

DS, 9, was diagnosed ADHD just last week and we are on day 3 on Concerta. I do not believe we will be sticking with it. The first day he was SO tired. Yesterday, still really tired and dizzy. Oh, and GRUMPY, very angry. Last night he was awake from 1-until he went to school. I am trying today since they were out the last two days for conferences. A friend convinced me to give it a few days, but each day brings side effects that are not good. Not sure why it keeps putting him to sleep during the day, he is on the lowest dose, there is nothing lower. I Just don't think it is the right medication for him. I am looking toward lowering the prozac he is on instead, or trying another SSRI. THat does help a ton with the OCD. But can cause AHDH type side effects too, I guess.

OH good! I need to get a refill faxed. I knew they were down so waited.

Interesting. I will check out the link. I don't notice him clasping his hands, no. THanks for the replies!

Thanks, Linda!

Thanks for that info! And very true. I think that is one reason it is a good idea for us to see another doctor in addition to Dr. B. The one I am thinking of, i believe, will look at these things as well.I am looking forward digging into some of this a bit deeper.

I just got home from Ian's IEP meeting today. We were talking about the hyperness, impulsiveness, lack of filters, etc. Some of the changes they have seen seem to coincide with when he want on Prozac. They do comment the OCD seems to be a big change, much less. But all the rest is much worse. So while it seems to be helping the OCD, I am wondering if any others have seen ADHD type of issues on prozac? The OCD is so much less, but this isn't good either. Oh, and the tics are still around. I am waiting for the augmentic refill from Dr. B, as i know they had no power or phone for a while. The end of this week will be my two week test. His OCD has ramped up a bit, tics back, mood stinks, etc. But I am most curious about the prozac.....

That is great! We are treating it now. WE haven't discovered any, but Dr. B thought it wise to try it. We are on day 4. We haven't one diet or anything yet. But one thing at a time.

Thanks, everyone! He has been on combinations of antibiotics in the past, a few different ones. His last round was 3 different ones over a course of 8 weeks. It did nothing, at all, that regular augmentin seems to do. He has tried different antibiotics, too alone, and in combos. But Dr. B doesn't really treat Lyme, so I am thinking it may be a good avenue to explore even with the negative (according to the CDC) results. I do think sometimes our answers are more clues than real answers, so I will keep digging!

If anyone is following my posts, I am doing that test with Ian (9) taking him off the antibiotic for a couple of weeks. He also had 8 IVIGs, with no result that we could see. The only thing that helped any is the prozac helped bring the OCD down. Well, since going off of the antibiotic his tics are back big time, and some of his compulsions are back as well. I was almost convinced he was not dealing with PANDAS, frankly. Now while I do not like seeing him like this, obviously. Part of me is a tad giddy. Those that are trying to find the solution and reasons behind things for their own kids will understand. It does give me an answer that we are dealing with some kind of autoimmune issue, or inflammation since he is dealing with this again. We are also treating yeast right now, but only on day 2. So, my thought on this whole thing is that indeed the IVIG wasn't helping. THe antibiotics he have been on helped some, but not enough after being on them for two years. Despite the fact that he tested negative, twice, on the Igenex Lyme, I am now thinking a Lyme connection may very well exist anyway. Something is in the way, but it is clearly autoimmune. Strep is going around his school too right now. I am going to make an appointment for the LLMD I have on my list to call. This little test at least, I feel, gives me a direction to go. We need to keep digging. Acceptance isn't where we are at. I was ready to accept he just had OCD, but with the change in his mood, tics and compulsions off the AUgmentin, it is clear something is truly going on. It also means I may eventually find the issue and be able to help him! I was worried he would be dealing with actual OCD for the rest of his life. But this may still be the right path after all. Just need to keep digging! I know it is odd that this makes me a little happy. I just felt at a dead end..... Lisa

I agree with everything that Nancy has said. Our neurologist is very PANDAS savvy and was fine with starting my son on a low dose of prozac, 5mg. We left him on that for 2 months before upping it to 10. And we have left him at that level for now. He is tolerating it well. There is some talk of maybe upping it a bit this next appointment in Feb. He is also in intensive therapy, and the prozac has helped quiet the OCD enough that he can work on that better than without meds. If we up it, it would only be another 5 mg. Our neurologist also feels children should only be on it for a couple of years as they work through therapy and get a handle on the OCD. We will be going into one year in a few months. So, it has helped my son to an extent. It does nothing for tics. I think the way to go is low and slow. I was open to trying it because he was still struggling and we needed some relief. It doesn't mean he will be on it for life. But quality of life is important.

I suppose it could be a tic, but it is only triggered by someone doing something first. It sure is confusing sometimes trying to figure out what is what.

Interesting all around. This is the ever changing disorder, I will tell you that!

Ian's latest compulsion is to copy sounds or gestures that we make. Not everything, just things like clearing the throat, or copying us if we scratch our nose, or something like that. It appears to be limited to those types of things. It is drying me batty, but I think it has turned into a compulsion he can't help. He is a goofy kid anyway, and loves to be a comedian, so I think he used to do it on occasion just to be silly, like copying things we would say, etc. But now if I clear my throat or sniff (often since I have cold) he does it right after. Maddening but I was just curious if anyone else has noticed anything like it. It is constant and even during homework or any time, so I really don't think he realizes it...

We have done a few combos with Augmentin, Azith, Bactrim, plus couple of others. But I will be careful how long we test this for. Thinking only a couple of weeks at this point.

Ok, so clearly maybe it is necessary yet. I don't mind so much keeping him on one. I feel I can keep tummy issues at bay with probiotics. I am going to continue the experiment for a couple of weeks, and see if the OCD ramps up at all, too. I am glad that others have seen similar reactions. It makes me feel like at least I am not crazy. It seems we are still dealing with PANDAS then, and just have to keep finding the missing pieces of the puzzle...

Long story short, Ian has had 8 IVIGs, and many other antibiotic combos, steroids etc. We are at a stand still with treatment and I was seriously ready to just consider that Ian has OCD with a side of ADHD. But we are taking a break from the augmentin (on our own, Dr. B didn't tell us to test it) and the vocal tics are coming back. SO what could that mean? No other PANDAS treatment has made any dent or had any result except augmentin with the vocal tics. We tested for lyme and both times were negative, but I am still open to exploring that with an integrative doctor in a couple of months. I am just really wondering what the significance of this could be? Dr. B doesn't have an answer, just said, then lets keep him on it, it is helping something. Obviously, but what? Since we haven't treated for Lyme at all yet, I am not sure what drugs are used. Is augmentin used? I am just wondering what else it is used for that can cause tics, because there is obviously some very real connection there. Just trying to figure out this little piece and how it significant. Lisa