lmkmip67

I am trying to figure out my 8 year old son's Igenex results. It states negative. Yet some look positive or unsure. the ones I don't understand are IgM 30 kDa + IgM 31 kDa IND IgM 39 kDa IND IgM 41 kDa ++ IgM 83-93 kDa IND IgG 18 kDa + IgG 30 kDa + IgG 31 kDa IND IgG 34 kDa IND IgG 39 kDa IND IgG 41 kDa ++ Thanks for any insight! Lisa

I was JUST reading about that book and I think I may have it even. I am going to read it and hope it offers some ideas. Thanks!

I have been so busy lately with school starting, our son in hockey and running my business. But I wanted to stop by and update, also have a few questions. I hope everyone is doing well, but i know every day is a challenge at times. Ian is 8 and we are 4 weeks out from the 3rd IVIG. We have seen NO improvement. He is the same, if not worse, when he gets a cold. Dr. B suggested testing again for lyme through Igenex. we did a few months ago before starting IVIG, but there were a couple of inconclusive bands, I guess. I do have the results here now, so if anyone knows anything about specific bands, I can certainly tell which ones they were. Anyway, we are scheduled for IVIG #4 in about 4 weeks, but were told to wait until just before to get the additional blood test done for lyme. I guess IVIG can affect the results? SO we will do that. But the issue is Ian is just no better. A year ago he was diagnosed with PANDAS and we tried three different type of antibiotics. There was slight improvement on those, but not a lot. So then we decided to go the IVIG route. The issue is he seems to be the same, or worse, than when we started. We saw some improvement after the first IVIG, but then nothing after the second and third. I am kind of lost as to what to do next. Days are so hard with him. He has OCD, tics, etc. But the worst lately is the defiance and the way he talks to us. I am not sure how to curb that. it is embarrassing. I do time outs, take away privilages, etc. I also understand that some of it is impulse control this kids can't help sometimes. So I will talk to him later or at the time of and tell him that isn't appropriate etc. But it doesn't seem to help. We still do antibiotics and I do Motrin when it is bad. But he still has a huge issue with arguing, defiance and attitude. I think I could handle things if it wasn't for that. SO I guess my question is two part. Does anyone have any helpful tips for handling the defiance and disrespectful way they talk to us? And what should I be asking Dr. B this next time? What else should we be looking into? I know he did a co-infection panel. Everything else seemed fine at the time, except perhaps the two inconclusive bands for lyme. I just feel like I need some direction here as I am about at the end of my rope. I know it has been a hard week for him, and me. But I need to feel like there is some hope. Right now with the IVIG not working, I am feeling pretty darn hopeless. I am sorry for not being helpful lately to others. I will try to read more. I just felt all my reserves are used up and haven't had much time or energy to read. Thanks! Lisa

Thanks! We just got internet back this morning so I will take a look at the PMs. I appreciate it!

Got it, thank you! Anyone else have any ideas locally?

It didn't appear anyone asks over on the Lyme board, and I posted on another Lyme board, but no one has answered. So I figured the PANDAS board would know. lol Ian is 8 and I think may benefit from a LLMD on board at least for one appointment. I found a couple of names at Children's but wasn't sure how good they are.... I also have to find one covered by insurance. there is no choice in that matter. I am fortunate that Ian's IVIG is covered, but the travel expenses and now a #$300 fee are not for each trip we take every 8 weeks, so anyone else we see has to take insurance. thanks!!! Lisa

I am thinking it would be a good idea too see a LLMD, yes. Now to find a name of a good one in Massachusetts. I can't drive much more than I am to CT.

Ok, that is all good to know. Thank you for the info. Hmm, so wondering now if I should wait or not... I am not sure what bands as I forgot to ask for a copy so have to call tomorrow and have one faxed to me. But he is retesting the IgG and the IgM. Are those specific bands? Or are there bands within that? they were both indeterminate.

Well, I have to get the test results from before sent to me, so I will ask again if it is going to impact anything with just having IVIG. I don't want to waste an additional $200 if it isn't a good time.

He's done that b4 - not sure why. You could run it a couple days before the infusion (before you leave home). Ian clearly has PANDAS anyway. he has all the classic symptoms. He may have a co-infection with Lyme, I suppose. But he is PANDAS, too.

We get IVIG every 8 weeks, so that doesn't sound like that will work well. If that is the case i wonder why he ordered those two tests again....

We just got home form Dr. B's infusion center and did tell Dr. B that Ian has made no progress since the 2nd one, and is indeed worse. A small virus could be part of the increased tics and OCD this past week, but he still felt that Ian should be doing much better. He brought out the Igenex labs again and said that the Lyme Western Blot IgM and IgG were Indertminate, which I guess means there was something, but not enough to register a positive. The test was done in February so he wonders if it was very early. I find it odd Ian would have been bitten by a tick in January or Feb since we live near Boston and we were under 3 feet of snow. I thought I would past here though and ask what this might mean? I will start some reading on the Lyme board. But figured many PANDAS parents here are familiar with the IGENEX testing and may have some insight. He wants us to retest now (which kills me since we will now have a $300 fee at the infusion center every visit as well, costs going up and up). So I guess I will wait and see what the new test results says. But are the old results of any significance? And if so, I guess I need a good Lyme doctor that will work along with a PANDAS doc, and need them near Boston or Metrowest Boston. Oh, and Ian is on Augmentin, treatment dose anyway, will this mess with the test results? Thanks! Lisa

Ian is going in for his 3rd IVIG this coming Monday. He has not been seeing any improvement at all this time and the last week or so has gotten worse. About two days ago he started to sound either congested, or hoarse. He is already on a full treatment dose of augmentin already, so I didn't think too much of it, just thinking it might be a virus. He has NO signs of illness except increased PANDAS symptoms and the hoarseness. So I think something is going on, but he has no fever, no runny nose, nothing. He is feeling just fine despite more tics, grumpy mood and OCD. We are seeing Dr. B on Tuesday after the IVIG, so I hesitate to drag him into the regular doctor for a simple virus, since he is already on antibiotics. Thoughts? It kind of explains why he is worse, but still after 2 IVIGs I would hope he would not react to illness as badly at this point. Lisa

Again, I can get in the mode pretty easily, so I have to consciously make myself think about and do other things. Quite a few years back I used to have panic attacks and anxiety issues, but I really learned to change my way of thinking and take more control of my thoughts. I slip sometimes, but I think this helps me know when I am getting in too deep and get myself back out. A change of scene and some time for myself is a HUGE help. heck, I will even go to a movie by myself. It is SO important. So if you are thinking about it all the time, I think you might want to try and get some time for yourself and change your focus occasionally. It does help the kids, too! I think being a caregiver of someone with special issues can be very exhausting. But taking it one day at a time and not forgetting to take time for yourself, and have fun, is very important.

I will admit I can get caught up in things so I do take long breaks from here unless I really need to figure out something. I do try to give feedback too, but I can't come daily and read about it all the time because I KNOW I can become obsessed. when I get that way I tend to develop a lot of anxiety, and the stress gets to me and I start losing sleep. So I have to stay away sometimes and not constantly dig into research and treatments. I feel I am treating my son, and trying my best to heal him, but I can't spend the whole day focusing on it because it isn't healthy for me and in turn not good for my son either. I do try to keep our lives as normal as possible and not freak out about germs etc. I feel I will do him more harm keeping him out of school or out of situations because I am nervous he will be exposed. So we deal with the flairs, I read once or twice a week, and try not to think about it all the time. I could easily get sucked in and I know that would be bad. Some may say that means I am not as dedicated to healing my son, but I do think I am doing all I can. I want him well more than anything but I can't let it rule our lives either. It is hard to find that balance and during flairs it is even harder. I am sure you are not alone! I just consciously have to avoid getting overwhelmed by it all. ((hugs))

Ok, yes, I need the results. I am going there in a week so will just get a copy of all his records. I have to for his pediatrician anyway. I know he did co-infection testing, but because I don't have the results, I am not sure what that included. I do know he said there were a couple of bands that were inconclusive, so said that might be something to look at down the road if IVIG wasn't giving the expected results. Thank you!!

We are going into IVIG #3 with no improvement as of yet, really. SO I think it is time to look at co-infections. I have not taken time to research what else I should be looking into yet. Dr. B did test for something, I just can not remember all of what they were. What would be helpful to me is if you all could tell me what types of co-infections I should be looking into, or at least making sure we were tested for. I was sort of a sheep just following what the doctor said and not paying a lot of attention to all the tests. I realize I have to, since we are not getting the desired result. I want to go into his office this next week with a list of things to ask him, and one is what else should we be testing for. Thanks you in advance as I know I have been posing a lot and venting lately. This place has been a godsend on so many occasions! Lisa

I believe we are heading into numerous IVIGs with Ian. Going on our 3rd and I haven't seen enough improvement that I think will be done anytime soon. I know many have had 1, 2, or even 3 treatments. But I am wondering how many have had more, 6, 10, or more. How often has your child received the treatments and what kind of a response does your child see? How severe was your child, how many treatments and where are they now? Sorry for all the questions. Sometimes I use the search function and don't find a similar question, so I figure I will ask it, it may help others, too. Lisa

Thank you all for your input! All the doctors we have talked to say the same thing, too and many have even suggested it.

Why would PANDAS not be life long? I think it has been widely believed to be a pediatric illness. Is it? I don't know. Not sure anyone really knows. My question is more about homeopathic treatments, if they have to be given long term, as in life long, to control this type of thing. Or if they person can be treated, get back in balance and not require more treatment.

I have used melatonin with Ian for a while now. It really helps get him to sleep and we avoid the nighttime rituals and meltdowns that can keep us up until 10 or after. I went to Vitamin World to buy the one that melts in his mouth and the store clerk told me it was dangerous to reply on melatonin for kids, that it causes their bodies to stop making its own melatonin. And if they knew it was for a child, they would not sell it, plus you had to be over 17 to buy it now...It caused me a great deal of worry. Am I doing harm to my son by giving him melatonin? I realize people can become reliant on things like this to sleep, even if they don't really become addicted. I only give me 1 to 2 mg (the pills are 1 each). he can't take benadryl really because it causes rages. Anyone have any input? Lisa

I just finished reading "Out of the Fog." Wow. My concern about homeopathic treatment is this something that they have to take for the rest of their lives to be "well?" I am very intrigued, and would gladly take this route if it is what Ian needs eventually. But it sounds like Dan in this book is still taking the remedy even as an adult. That, in some ways, scares me that this is life long perhaps.

I am so guilty of this myself. It is my quiet time, my down time. I don't always research, but I do fight going to bed when the house is totally quiet. I need that down time.

I am so glad you think this is a good idea! I know I could use a list to refer to now and then. My tip that helps with my 8 year old is to realize he is not functioning like an 8 year old. If I dial back my expectations a couple, or even 3 years, things work much better. I discipline as if he was a younger child and even talk to him as if he was younger. It makes me sad to admit, but it works better when I try to talk to him like a preschooler that wants everything their own way and who favors the word no. I don't talk in a cutsie voice, of course. But if I can convince him something is a good idea, or his idea, things go much easier. I also simplify any requests of him, giving him one bit of information at a time. Otherwise nothing gets accomplished. If I want him to get ready, I literally tell him to pick out his clothes. THen to put them on. Then to brush his teeth, etc. Tiring, but less tiring then yelling.