pmoreno

If you mean the scans - they will have to give her a sedative intravenously to make sure she is completely still. As far as the neuropsych testing - it will be things like - speech and language, motor skills, cognitive testing, etc. However she tests out - that's where she will be at this point. It will be interesting to see at what level she is functioning right now. She is doing better with her obsessions and anxiety - but her academic abilities aren't what they were before. I'll post again and update when she's had these.

Finally - we're making some progress. I got a call today and Dr. Chugani at Detroit Children's Hospital is going to include Gaby in his research study so she will have 2 possibly 3 different scans which won't be charged to the insurance company, but will be free of charge. The important thing is that we might get some answers. They are going to call me back on Monday to actually schedule these. Also the psychology department here at UM called me today to say that they would like to do a whole battery of neuropsych testng.

Gaby had complained recently about some internal rectal itching and she has been extremely giggly. The ped thinks its pinworms and it could be - have to see if I can visualize by checking at night. Also could be yeast (symptoms similar). However, I checked on the internet to find out more about parasites in general and apparently when you have a compromised immune system, you are more susceptible to parasite infestations in the gut (some of which can apparently travel to the nervous system and cause parkinson's like movements) - depending on the type of parasite some can cause brain fog, dark circles under the eyes and sleep disturbances. The toxins that are released from the wasteproducts of these parasites can cause bloating and weight gain and other unpleasant symptoms. They also cause an inflammatory response (which of course in our kids can get everything stirred up). I've decided to do a parasite cleanse with natural ingredients (fresh ground cloves - can't be already ground from the grocery store-have lost their med properties, black walnut hulls and wormwood). I think I may buy this with the ingredients already put together because I want to be sure that I get the amounts right. One brand I found on line is called Clarkia Parasite cleanse and they have doses listed for children based on their weight. It's about $25, but I'll check at my local health store to see if they carry anything like it for less. The worst that can happen is nothing. There are no side effects. Apparently the walnut hulls and wormwood are deadly to adult worms and the cloves kill the eggs. This covers a wide variety of parasites - not just pinworms. I've also read that pomegranate juice several times a day can kill tapeworms and 1/4 cup finely ground pumpkin seeds can kill other types of worms. Just to be on the safe side, I might do this - as I said, it can't hurt. The only thing to watch out for is allergies to walnuts. They recommend that they drink a lot of water during this time to help eliminate the dead parasites.

It seems that more boys have problems with this than girls (in the PANDAS population). The fact that some behaviors get better and some get worse after IVIG makes me think that it has a lot to do with receptor sites. The IVIG mixes things up a little and as the IVIG is competing for receptor sites along with the original antibodies there will definitely be some change. For us it meant an immediate cessation of tics. But then later a few other odd behaviors crept in that hadn't been there before. If you've already ruled out all possible physical causes (like diabetes or urinary tract infections), then it's most likely a compulsion that will be there for a while. Sometimes abx will help (so if he's not on them yet, try them). But as others have posted here, even with the abx, you still get behaviors breaking through because of exposure to antigens. It may be a matter of waiting it out for this compulsion to subside. My daughter's compulsions are different, but they have subsided after a couple of months.

Since Gaby had a pretty good response to the IVIG initially, but afterwards did not recover as well as would be expected, Dr. K felt that she might have been better off having received the higher dose of 2g/kg vs. the 1/5g that she received. If I were a parent going into this for the first time, I would definitely want the 2g rather than risking having to repeat this. Pat

As many of you know, Gaby was on augmentin daily since IVIG in October. She had some really bad flares in December. We took her off augmentin and put her on azithro. The agitation continued and worsened so much so that she needed an aid with her in school at all times. She yelled out frequently about white dots or lights in front of her eyes and hit or kicked at them, scaring the other kids in class. For over 2 months she continually asked certain questions over and over and expected an answer every time and would get very angry if not answered or was re-directed. Her titers are always outside of the normal range, but never sky high. A few weeks ago I took her off antibiotics. She's still on basic vitamins (folic acid, B12 inject., MVI, vit E, monolaurin, probiotics- for a while yet) She has been gradually getting better to the point that I have to really think if she said something repetitive today. I think she might have said a couple of times "what happened?" about nothing, compared to several times a minute of irrelevant questions within the last few months. No mention of dots or lights or outbursts for at least one and a half weeks. Her sleep is still disturbed (wakes up around 4:30 and will stay awake) but at least its not night terrors right now or constant talking while she's awake. I don't know if it's related to the antibiotics or maybe just coincidental. I do know that last year her symptoms very gradually started getting better in the middle of February and then slowly dwindled away to nothing by end of April. Maybe that will happen again this year. Maybe its the fall and early winter that holds the worst in store for her (with viruses, etc). I guess I'll have to wait and see. We have a PET scan scheduled at Detroit Children's hospital on the 26th of February. - Am really looking forward to seeing those results. I thought initially it was supposed to be a spect scan, but found out since that they want to do the PET instead. My thoughts are with all who are having bad times right now and am hoping that it will get better soon like it has with Gaby lately. Pat

We had IVIG in Oct. and had 80% reduction of symptoms. right away. gradually she started having issues again and things escalated quite a bit within the last month or two - most old behaviors are gone (including tics), however she started a new behavior in December where she started asking questions over and over again (usually the same one), and she started yelling out about white spots or dots or lights in her visual field and would hit at them. Thank goodness all of that has almost gone away. She does occasionally during the day ask silly or inappropriate questions, but not to the extent of last month where it was many times in a minute. Focus and attention is definitely not what it was prior to the onset of all symptoms last year. She needs an aid with her in school and academically she is about 1 1/2 to 2 years behind. You still can't have a totally normal conversation with her or read a book to her because she will interrupt constantly by talking about something or asking something that's irrelevant. I think that the changes in behavior have to do with what part of the brain is affected at any point in time - issues involving receptor sites and neurotransmitters, etc. Pat

Thanks, I'm going to try and get one of the others though. I'm driving myself crazy worrying about all of this, being 6 months pregnant isn't helping. I would just feel better knowing he was already on the abx known to work better. Anyone know if it's a problem to switch abx midstream like that though? Wonder what the doc will say about that.... Yes, I've often wondered if stopping a particular abx before the end of its course could create some resistant bugs. Even though you are starting a new one - they may be specific to different ones. You'll have to ask the doctor about that and hope that you can trust his judgement. I would probably do what PEGLEM suggests - finish up the abx and retest. My heart goes out to you and others on this forum whose children have the frequent urination problem . We haven't had that yet (and hope we don't) - it seems like it has to be one of the worst.Pat

\ I think I must have gotten the pine bark confused with willow bark (if you look up willow bark it is very high in salicylates and is contraindicated in young children because of the association with reys syndrom) I checked again and it doesn't mention anything about the pine park - just willow. Sorry about that. It is fairly expensive though and I am thinking that you might be able to get the same effect from these tart cherries for a lesser cost. I did buy some cherry concentrate at Meijer's today in the refrigerated fruit juice section. It cost 8.99 and it makes quite a bit of juice when you reconstitute it. It contains 50% montmorency cherries and 50% balaton which is supposed to be a good combination. It tastes sour, but is a good thirst quencher. Pat

Gaby still has not returned to the repetitive questions or obsessive thoughts - but this afternoon she started laughing spontaneously which lasted right up until she fell asleep. I guess in the grand scheme of things it's better than crying or yelling, but why does it always have to be something?

I ordered some OPC-3 for my elderly parents after I read your post and I do believe it could be a good thing over the long run (for adults that is). I'm not sure about kids because I thought that I read something about it containing natural salicylic acid which is like aspirin and young children are at risk of reyes syndrome from that. Not sure if its a legitimate worry, but since I don't know, I didn't want to risk it - if there's anyone out there that can tell me otherwise - I'd be glad to hear it. thanks, Pat

The thing that all of these kids have in common is a sudden onset of odd behaviors and symptoms which vary among the kids and can change at various times in even the same child. During one episode you might see more tics and compulsive behaviors, the next time less of that and more raging or mood swings. What they do not have in common is what works to diffuse these behaviors. If you look at some of the old posts here, you will see that everyone has their own version of which antibiotic helps their child and which one definitely doesn't. It's never the same. The reason is that not all of the children react to the same antigen. Some react only to strep (and sometimes to specific strains of strep) and so they seem to do better on zithro. Some (like my daughter) react more to the herpes simplex virus, but can also react to strep and some other minor viruses. Parents have had good luck with keflex, penVk, some with augmentin, zithro, etc. Because each child is so different in that respect, it's almost like a trial and error. If one abx doesn't work, you try another one. Unfortunately if the child reacts to more than strep, then you will see the behaviors even when they're on abx, and then you have to guess at what the trigger is at that time. Since almost anything that produces an inflammatory response in the immune system can trigger this, it is really hard to narrow it down. As the body's defenses are stimulated to attack the antigen, they also attack self - in other words neurons (primarily in the basal ganglia, but also in a few other structures of the brain). Depending on what area of the brain is attacked - will determine what kind of behavior changes you will see at that time - whether its movement related (tics), OCD behavior, or mood swings. Sleep seems to be compromised in most of the kids. None of the doctors (even those very familiar with PANDAS) will tell you that there is a cure for it. IVIG helps some kids (and a lot of it is dose dependent), plasmaphoresis has been helpful, but is more invasive. Many kids outgrow it by puberty, but I have read accounts where it goes beyond that into the teens and early adulthood. I pray that there will be more research on this in the near future to come up with something that definitely will cure this, but I think that not enough people are even aware of how prevalent this is becoming. Everyone still talks about it as if it were so rare and there's apparently not enough interest among researchers to do anything about it. If the general public were educated about this, more parents who have not had the good luck to find these forums might come forward and if all were heard, it could bring about some change in how we are treated by the health care community. (anybody know how to get in touch with Oprah?) In the meantime, while we are waiting for the immune system to fix itself, we have to deal with the symptoms. Most of the mainstream docs will simply point you towards a psychiatrist because if they don't have a cure - they say it's psychosomatic. You will see from earlier posts here that most of the psych drugs will have an opposite effect on these kids. In other words - those meds designed to tranquilize or calm an individual actually get these kids agitated (I've had that personal experience with several of those drugs with my daughter). In desperation you may find yourself trying some of them and hopefully you might find one that gives you some relief with your child - some people here have done that. I always worry about long term effects and try to find something that will do the same thing without all the negative feedback. The DAN doctor that has been very supportive throughout all this recommends a combination of 5HTP (for the first 2 weeks), then adding inositol. 5HTP helps the body to make more serotonin, then inositol helps the body to utilize it more effectively (it lifts it off the platelets where it is stored). The combination of these two is supposed to help with sleep, OCD and anxiety. Ultimately that might help with moodswings and anger too. In this respect it works a lot like prozac but without the side effects. Pat

Gaby has had a series of very good days lately. Don't know what to attribute it to - maybe just part of this cycle. I did increase her monolaurin to 2 capsules (one in AM, one in PM) to give extra support against viruses. Also she had a sniffly nose 2 days ago and I started giving her daily doses of extra vitamin C (not in tablet form -doesn't seem to work), but in a crystal powder form that you can get in health food stores - one teaspoon gives about 5,000 mg., mixed with orange juice. It's pretty bitter, but she does well with meds. Anyway, if you mix it well in less liquid - less for them to swallow, then chase it with a nice big glass of regular juice - it may have worked because she didn't go into a full fledged cold at all - as a matter of fact, all her cold symptoms are gone. In addition, large doses of vitamin C are thought to be a good natural chelator of toxins.

Her behavior is so very much like my daughter Gaby's was last year when she first started this. Since then her symptoms have changed and she has gotten better, than worse again, then better. Don't believe your daughter when she says other kids are starting trouble or that the teacher is mad at her about something. My daughter used to be completely convinced that her twin was touching her food and making it taste bad so she wouldn't eat. She also said that her twin was being mean to her. She was so convincing that if you weren't right there and saw that it wasn't true, you would definitely believe her. Your daughter believes whatever it is that she is saying, but it most likely is not true.

When you say he needs that much to keep it under control - do you mean that if you were to remove it - he would have a lot of symptoms? - Does he become dependent on it? When he takes it, does he have any OCD at all? thanks, Pat

I don't know if you read one of my more recent posts under Gaby - nightmare, but I mentioned talking to the DAN and what recommendations he made on inositol dosing and a couple of other things, but anyway - he said to start with 2 capsules (2 gms each) twice a day for a week, then up to 4 capsules (which is a total of 8gms) twice daily (16 gms). We actually have the powder form which is 700 mg. in a 1/4 teaspoon, so one teaspoon would be 2800 mg (so roughly 2 1/2 teaspoons twice daily). it doesn't taste bad mixed with juice. I got it on line through New Beginnings Nutritionals. Pat

Pmoreno- I think I have mentioned this with you in the past, but my dd also had HSV 1 lesions and has for long term. She was under a year old with her first outbreak and for some reason just could not shake it. She eventually went on long term prophylactic antiviral therapy with Acyclovir and has done amazingly well with it. She has been on it for years and every doc that I've dealt with keeps telling me that the drug has been around for 20 years with very little side effects and has an amazing safety record. My dd had cold sore outbreaks on her face about every 5-6 weeks and then started to get them in her eye and that is what prompted the prophylactic dosing as it can cause blindness (the leading cause!). When her pandas episode first began everyone, me included wondered if it was due to the acyclovir and she was taken off it only to have continuing pandas symptoms and then continuing outbreaks in her conjuctiva of her left eye. And actually many times over the years she has had several month 'breaks' from it to see if she would still need it, and yep, she still does. Anyway, after pandas came into our lives and when my dd first exhibited the symptoms many thought she was suddenly autistic at age 6...and someone at that time gave me a bunch of research papers and info and one of the things I remember reading about was Stan Kurtz's research with his child and others regarding antiviral therapy. I'd bet there is something about it on latitudes somewhere, I haven't done a search, but here is a website with some info I thought interesting and might be helpful to others as well. http://www.tacanow.com/medical/comprehensi...iral-autism.htm Anyway, I have often wondered about pandas being on the spectrum and how all these things come into play, but I have thought at times that my dd's pandas symptoms are not only strep induced but also HSV induced (at times, not always), as well as other viruses and bacteria that we all know our kids have issues with. Anyway, I have wondered if perhaps my dd's pandas type symptoms had been repressed due to already being on an antiviral long term ? who knows. Anyway, I wanted to pass that along to you. Good luck with the upcoming spect scan. Which by the way my dd had a spect scan too, prior to doing IVIg and it did show basal ganglia inflammation indicative of OCD. Well, like I told you before, I already knew she had OCD...I just wish we could find something that shows what the heck is wrong with their immune system exactly to cause all this mess to begin with. Anyway, I know I already told you that stuff privately but I figured I'd say it on your post since there are so many others out there needing all the info they can get. you, gaby and your family are in my thoughts. I hope you find answers soon. Amy: Thank you for that very informative article. I have to really give this some thought. If I go with the valtrex it means getting on an antifungal also and I'm not sure that I'm ready for that now - although I'm sure that there are probably some out here that have their kids on antifungals for the abx. I just got her gut straight - the last organic acid test came back great with almost no yeast or bad bacteria. I almost hate to throw things off again. But it may be something that I'll consider again down the road. I think that after the scan I will definitely give her the 5HTP and the inositol. This should help with the anxiety, OCD and sleep issues. The valtrex, on the other hand, could help with some of the immune issues and it sounds like you only have to do it for about 6-9 months. On some of the other topics you and others mentioned the fact that the kids seem to get worse when they go to school - so true! When I keep Gaby home for appts. or because she's not feeling well, or it's the weekend, she has many good or tolerable days, but when she goes to school, she has outbursts, more anxiety. (yet she wants to go to school so I don't think its because she's anxious about being there). I think they're just exposed to so much at school (can you imagine all the different viruses floating around on a given day with all those kids there?). As I've said before - it doesn't always have to be just strep. Pat

Hello All! I just had a very informative phone consult with our biomedical doctor (DAN) in Florida and he has given me some good advice, as always. Since these consults are pretty darn expensive, I want to get the most bang for my buck so I want to be able to share information with as many of you as possible. Since Gaby has started with all the repetitive phrasing and questions within the last 2 months, it has been crippling for her. She can't have any normal conversations or learn anything in school because she is constantly interrupting with these obsessive questions. The doctor tells me that the OCD here is a result of the anxiety that she feels (especially from intrusive thoughts) and that the OCD behaviors are actually used as a coping mechanism. While we are waiting to do more immune intervention, we have to do something to quell her anxiety and get the OCD under control. It's seriously interfering with sleep too because she'll wake up in the night asking these repetitive questions. Here is what he suggests: (I know that some of you have tried 5HTP and inositol, but here it explains in what order to give them, dosing, and how and why they work) Traditional SSRI's (like prozac) recycle available serotonin and so eventually you get serotonin syndrome. That's why you don't want to go there. 5HTP is a precursor to serotonin and it does not prompt the body to use its existing levels of serotonin, but rather it prompts the body to make more serotonin. After about two weeks of taking it and having more serotonin available, then you can add inositol which helps to pry the serotonin off the platelets (where it is stored by the body). Some people actually have enough serotonin, but it's not being used efficiently because it gets stuck on the platelets - that's where the inositol comes in. These two natural products taken together can help to decrease anxiety and improve sleep. The dose he recommends is: 5HTP 50 mg twice a day for a week, then increase by 50mg every week until reaching a level of 200 mg. twice daily. The inositol - 2 capsules (2 grams each) twice daily for a week, then level at 4 capsules twice daily. He said that one should expect to see improvements in sleep within the first few days, but OCD improvements would take more like two weeks. I had asked him about the vitamin D controversy and he said that if a child has a normal vitamin D level, he doesn't recommend giving any more than 1000 mg daily as a supplement (if any). He is not a proponent for high dose vitamin D for inflammation because he said that if there are infections that are intracellular, vitamin D (which really is more of a steroid than a vitamin) will not be able to take care of that inflammation, but will just mask the symptoms. Therefore, if someone has such an infection, they may not be able to find out and be treated adequately. I asked him about valtrex since Gaby seems to have recurring oral herpes simplex 1 lesions. He said that if you give it at the first sign of tingling or itching, it shortens the course dramatically and can help minimize an immune response. Interestingly, he also uses it for children who have no history of herpes lesions for the purpose of pushing the body to produce more glutathionine. This is very important in maintaining a healthy immune system. He starts out for one or two months and if improvements are remarkable, continue for a full 6 months and then stop permanently. The dose is a half of a 500 mg tab three times daily (in other words 750mg per day). I asked about side effects because I've read some negative things about it, but he says that with that dose and for that amount of time, there is no real danger of anything. The bad news is that, like antibiotics, it can cause an increase in yeast, so an anti-fungal would have to be used in conjunction with it. I am considering this because it might kill two birds with one stone - increase the glutathionine and also act as a preventative for the herpes. Just not sure about wanting to deal with yeast issues again - so will give this whole thing some thought. We also talked about the benefits of doing the spect scan which we are anxiously waiting to have done. He said that it would show the areas of increased activity in the brain - would most likely show some inflammation of the basal ganglia and probably some abnormality in the anterior cingulate (which is the part of the brain responsible for the perservering - repeated questions or behavior). Knowing these things makes treating symptoms more accurate and also will show doubting traditional MD's and insurance companies that there is a physical reason for the behaviors. Greeneyes, I know that you're waiting to hear test results and other info about Children's hospital, but I did not hear back from them today. I will call tomorrow and will update you as I get the information. I hope that this information was helpful to some of you. (I know there's some old-timers out there who probably knew this already)

So sad for you. I just said a prayer for all of our children on this forum. Our daughter did very well last summer too, like your son. I believe it could be that during that time there are less viruses out there to assault their immune system. After talking to many doctors, the one thing they seem to concur on is that this is not just about strep. I know that we focus on that here - the titers and the antibiotics and all, but it is almost anything that produces an inflammatory response which then will start the anti-self antibodies attacking the brain. That's why a lot of people on here will talk about how they're trying various antibiotics and it works for a while, then doesn't seem to help - it's most likely because with some flairs it has nothing to do with strep, but viruses - which don't respond to antibiotics. We did IVIG with Dr. K in October and initially had a really good response. After a while, it seemed like we were slipping back to square one. Having talked to doctors and other parents (some using IVIG for PANDAS - some for autism) it seems that the IVIG always helps for a while, but the effects are not always permanent. Dr. K seems to think we could have benefited from a higher dose, although we were already at a high dose. He may be right though. Other parents have used lower doses more frequently and usually see some benefit after each infusion. Its probably the only treatment (outside of plasmaphoresis) that is working to try to correct the problem with the immune system. Some of the other things out there just help with the symptoms - and sometimes you have to just do that. The IVIG can be so expensive if you continue with it (especially since insurance companies aren't usually very cooperative).

It seems that there are a number of antibiotics that are effective against strep and there is great controversy among the doctors as to which one they feel is best. With so many to choose from, why go with something that is usually used as a last resort. It's kind of like killing a fly with a baseball bat when a flyswatter would work just as well. On the floor that I work here at the hospital I see way too much vancomycin resistance - its a scary thing. What do you do when you become resistant and there's no where else to go. That's why its best to try everything else first and save the vanco for your ace in the hole. Pat

Was that doctor in the department of neurology? As I've found out here at U of M, there are some departments that are great - others not so great, and then even within a department there's good and bad among the individual doctors. Sounds like you ended up with one of the worst of the bunch. As I said, I was extremely impressed with the neurologist from Children's I saw today, even though she didn't have a strong background in PANDAS, and she was very anxious to refer me on to Dr. Chugani who is supposed to be the Guru of PANDAS there. I think he's the Chief of neurology. Anyway, if I were you, I would try approaching Children's again, but this time try to see him right from the start. I was told its easier to see him in his Birmingham office as he is in Novi only once a month and his Detroit office is always booked far in advance. If you do want to see him and can't get in early enough, why not do what I did - get an appt. with his colleague - the one I saw and she'll refer you on and expedite things for you. EAmom, you were talking about the behaviors not totally resolving between episodes. I do believe you're right when you say that it could be from residual brain inflammation. Since Gaby started her second episode in August, she has been up and down and symptoms have changed so many times. Even though at times she looks great in some areas, there's still the really immature speech and inability to perform academically like she used to. I hae a feeling that these things won't clear up 100% until they're completely done with it.

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Who did you see? We saw Dr. Sivaswamy and she was wonderful - the first neurologist - or mainstream doctor, for that matter - who actually listened to me respectfully and with interest. She said that she had had a few PANDAS patients in the past but was not as experienced as Dr. Chugani who heads a research program for PANDAS and does spect scans as part of this program. He is the one I wanted to see in the first place, but they wouldn't give me an appt. until May. She said she would e-mail him today and try to get Gaby to be accepted into his program - or at least get a scan as soon as possible. Another thing she wanted to rule out, and this only because she felt that the symptoms sometimes look very similar to PANDAS is something called Hashimoto's encephalopathy which can be picked up with a simple blood test and has to do with a thyroid dysfunction. (also an autoimmune disorder). We had her blood drawn today and hopefully will find out one way or another in a couple of days. In the meantime, I am waiting to hear back about the scan. Did you ever see Dr. Chugani or did anyone suggest that to you? Pat