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faith

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  1. In previous posts there were ?'s about whether or not Dr. B. actually orders the IVIG or takes the orders from other docs. Does he order them too?

     

     

    I believe he was willing to help some of these PANDAS kids and so did immuno testing to look for any immunodeficiencies, and then he could treat with IVIG and hopefully have it covered. I'm not clear if he is doing monthly based on the immunodeficiencies or if he is now following Dr. K's protocol, I think 'Alex' here asked Dr. B. to consult with Dr. K.?

     

    I still wonder if there is any difference (re outcome) in the kids that have deficiencies as opposed to those that don't, I mean, not all PANDAS kids do. :)

  2. We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day.

     

    He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.)

     

    He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay.

     

    He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years)

     

    Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well.

     

    I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes.

     

    Angela

     

    Angela,

    You say the doc thinks your son has a sinus infection, or that he definitely does? he could tell just by looking in there? And he has no symptoms tho, sinsus pressure, mucious, nasal talk, whatever? If your son has this, I would go to an ENT to check it out.

     

    I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there.

     

    Faith

  3. I wonder if there is any such thing as a symptom being like 'sexual fixation' or something to that effect?

    Michelle, if you feel you havn't found any therapist in your plan for what you are dealing with, there is a way to advocate with the insurance company to find you someone, and if they can't, then you can try to get someone not in the plan and have them cover it. I will pm you with some info.

  4. Hi Michele,

    I wouldn't say these are necessarily behaviors of just 'TS' alone. Forgive me, but I'm not recalling, did you say he also asbergers or you once thought? My thought is that all kids at one point say and do things, its just that you have to look at the appropriateness, the timing, and how often these things go on. I mean, I've heard my 10-11 year old say the word sex, and I don't like it, because I know he doesn't even know what it means. I've also heard the word for male part more times than I care to, but I don't feel it was excessive or inappropriate, its just what boys will say sometimes, they think everyting is funny and of course will say things for fun or attention especially when friends are around. We had a sleepover recently with several boys, and oh my, how I didn't wind up cutting it short and sending everyone home. .... <_< but it was in the context of 4 boys hving a 'boys night out'....but I did give them a lecture on how its not appropriate to say words like that especially in front of girls or ladies, and that I would be letting all the moms know what went on.....

     

    The behaviors you describe about the peeing sounds like he just doesn't understand that it is inappropriate, or he is expressing somehow that he doesn't care., so yes, could be a problem there. But in answer to your question about others with TS displaying this type behaviors, I'm going to say no, nothing I would think odd for a boy of his age. I'm pretty sure he knows exactly what is right and not acceptable.

     

    do you sit in with him when at the psychiatrist or psychologist? it might be a good thing to be in on some of the talks and see what he is saying and how he responds to talking about this? Really don't know what else to advise tho......

     

     

    Faith

  5. Faith,

     

    In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

     

    I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

     

    Do you recall any incidents of "activiation" of never before seen behaviors?

     

    Thanks,

    Jill

     

    Jill,

     

    I've only been looking at the PANDAS board since October, so the IVIG and PEX and steroids are kind of newish to me as well, so I'm basically familair with what has gone on in the last six months or so regarding such. I will say tho, that what I see across the board, is basically the same as I've seen on the TS side with our natural treatment talk and all the alternative treatments, .. no one size fits all. Some respond to certain things, while others have a bad reaction to the same. I've experienced this myself in doing different things over the years.

     

    As far as the treatments here, I've seen and talked to somone who reported a vocal erupt after starting steroids, and of course, worrieddad and peglem are telling their experiences above. I have no doubt that some kids do markedly better, but I can't discount that some don't. And some of the reports just downright scare me. Wether it is temporary or not, I can't use that as a deciding factor, because I have a functional child right now, despite some vocal tics, and being not so new to having a child with these kind of symptoms and seeing the good days and the bad days, I'm not ready to take the chance of changing what I have for something non-functional, or not being able to go to school. Yes, I do know someone here who has not been able to send their girl to school lately after IVIg, again, I pray its temporary for them, but nonetheless, its happening.

     

    I am not even sure my son fits into this category (PANDAS), and I'm okay with the possibility that he is not. I have no doubt that something autoimmune may be going on in all our kids with this, but Until I know for sure, I don't want to take the chance of doing anything that may not be for him. We have a noticeable vocal tic, yes, but until I know its the 'pediatric autoimmune neuro-psych disorder associated with strep'.....I don't feel comfortable or confident enough with an invasive, expensive treatment such as IVIG,,, just to see how it goes. That's just me. just me....

     

    Faith

  6. I havn't had this for my son, but I'm going to chime in here....

     

    I'm not sure if asking if anyone regrets it, is going to solicit the responses you are looking for, but I understand what Fixit is trying to get a sense of here.

     

    Again, I can't answer that question because we hve no experience, but just judging from all the reading here, I see it helps some, but some obviously not have such a great time at that dance. ... my feelings?.....and take them for just what they are, 'my' feelings......but I do think anyone doing research for pandas treatments and such, should make sure they know what the possibilities are and weigh that all in. too many variables, here, and I don't care if there are many who have benefited, not ALL do. If there are side effects to contend with, however long they may last, and especially if one of the effects is having a young child who wants to die or is threatening their own life, well, that possibility should certainly be taken into consideration......I am frightened and amazed at some of the recent reports, not to mention past ones.

     

    I know someone here is probably gonna beat me up for putting out these thoughts, but I think everyone's opinions, fears, and doubts should be entertained. I'm not saying IVIG is not a good thing, if I had a child with severe symptoms, I would probably go for it more readily, but I guess I am just wondering if it is the right thing for those with more manageable symptoms. I have up til now, even refused meds for my son for just that reason, don't want to deal with any side effects or possibly having the drug bring about new problems or even alter his brain metabolism (if that makes sense)......things are not great here, but we are not in crisis, so I feel I'm better off just waiting, watching, and learning.........

     

    Just saying, for those that are considering it and feel it is something that will help their child in the long run, great, but pleas do your homework and know that there may be some really rocky times with no guarantees. I guess I'm just thinking that it is not good, responsible, to 'tout' these treatments as tho they are a peice of cake and the answer to everyones prayers........ :( ... maybe it is, maybe it isn't..... I don't know, I'm just learning like all of you here.

     

     

    Faith

  7. I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported.

     

    When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections.

     

    I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

     

     

    Would anyone know or comment on wether the Lyme connection comes with all the comorbid issues, or is it just tics? Is tics the only symptom, or is it more likely that there would be other things going on as well?

     

    Like when my pediatrician saw the blood work up that our DAN doc orderd for my son (really at my request or suggestion) and the lyme, erlechia, babesia, .... he was really puzzled and felt that it was really strange to order all that, and that my son would be 'really sick' if he had any of that stuff..... :) I guess he felt there would be so many other signs of having something than just tics?

    (all the tests re lyme were negative, btw)....

  8. by immune deficiences, I meant that some here have done immunological work ups and find that they have some deficiencies, but seems most of those are Dr. B's patients, as he is an immunologist.

     

    I wonder about that, because I wonder if the treatment for PANDAS with IVIG (or the outcome) is or should be different for those that have immune deficiency as opposed to those that do not. I don't know, I'm just so confused as to all this, so I'm trying to see what other people's experiences are. We've not had any IVIG, my son has mostly tics, his other issues are not as prominent as some here. I think I can totally see going ahead with these treatments for the more severe of the kids, but I think those of us who are functioning have a wait and see attitude, and maybe even a 'if it ain't that broke, don't try to fix it" ?... :) I have to say, I am really confused and unsure about it all...

     

    thanks for sharing your experience.

     

    Faith

  9. loufrank, hello,

    since your boy is very young, fortunately (or unfortunately)...you are really kind of at the very beginning here and there are lots of avenues to look into.

     

    Again, since so young, the blinking could definitely be just a transient thing that will come and go. You'll probably have to kind of go down the checklist and check out different things that may be at play here, as you are doing, i.e. siezures, allergies, look at the correlation to illness (PANDAS). did he hve any sore throat with the coughing?

     

    has your boy had any recent vaccinations? this has seemed to be a possible trigger for some ticcing in many of our kids here.

     

    Does your boy seem to have any other issues besides the blinking? hard to gauge this in a two year old, but anything you find out of place?

     

    thanks,

    Faith

  10. bubbasmom,

    thanks,

    so basically he did do well enough after a time on the first ivig, but there were some lingering rage, so is that why you were going to do more? just trying to see why Dr. K. went for more IVIG for your boy when I thought he was of the school that monthly was not so beneficial. was the dose the 1.5 over two days or something else?

     

    hopefully, it will follow the same pattern, and things will calm as before?

     

    thanks for sharing this.

     

    Faith

  11. "7%"

     

    A holy man was having a conversation with the Lord one day and said, "Lord, I would like to know what Heaven and Heill are like."

     

    The Lord led the holy man to two doors. He opened one of the doors and the holy man looked in. In the middle of the room was a large round table.

     

    In the middle of the table was a large pot of stew, which smelled delicious and made the holy man's mouth water.

     

    The people sitting around the table were thin and sickly. They appeared to be famished.

     

    They were holding spoons with very long handles that were strapped to their arms and each found it possible to reach into the pot of stew and take a spoonful. But because the handle was longer than their arms, they could not get the spoons back into their mouths.

     

    The holy man shuddered at the sight of their misery and suffering.

     

    The Lord said, "You have seen Heill."

     

    They went to the next room and opened the door. It was exactly the same as the first one. There was the large round table with the large pot of stew which made the holy man's mouth water.

     

    The people were equipped wi th the same long-handled spoons, but here the people were well nourished and plump, laughing and talking.

     

    The holy man said, "I don't understand."

     

    "It is simple," said the Lord.

     

    "It requires but one skill. ............You see,... 'they have learned to feed each other, while the greedy think only of themselves'......

     

    When Jesus died on the cross, he was thinking of you.

     

     

     

    It's estimated 93% won't forward this.

     

    If you are one of the 7% who will, forward this with the title "7%"

     

    I'm in the 7%.

     

    "Remember that I will always share my spoon with you." ..... B)

     

     

    HAPPY EASTER!.....And 'thank-you' to all of you who have 'shared your spoon....... :)

     

    BLESSINGS,

     

    FAITH

  12. bubbasmom, hi,

     

    sorry, just to understand, is this the first and only ivig, or you had it before and he was better? why did you go with another one if things were getting good? are you doing monthly or this was the only one? sorry things got a little bad again, I still don't understand all this with these treatments.. would you mind refreshing me on what symptoms he had and what is happening right now?

     

    thanks

    Faith

  13. You know those crazy e-mails you get from friends who like to 'forward' everything, and lucky you is on their e-mail list? ......well a friend finally forwarded something I felt I can use! I loved this! May I 'share' it?

     

    "7%"

     

    A holy man was having a conversation with the Lord one day and said, 'Lord, I would like to know what Heaven and Heill are like.'

     

    The Lord led the holy man to two doors. He opened one of the doors and the holy man looked in. In the middle of the room was a large round table.

     

    In the middle of the table was a large pot of stew, which smelled delicious and made the holy man's mouth water.

     

    The people sitting around the table were thin and sickly. They appeared to be famished.

     

    They were holding spoons with very long handles that were strapped to their arms and each found it possible to reach into the pot of stew and take a spoonful. But because the handle was longer than their arms, they could not get the spoons back into their mouths.

     

    The holy man shuddered at the sight of their misery and suffering.

     

    The Lord said, 'You have seen Heill.'

     

    They went to the next room and opened the door. It was exactly the same as the first one. There was the large round table with the large pot of stew which made the holy man's mouth water.

     

    The people were equipped wi th the same long-handled spoons, but here the people were well nourished and plump, laughing and talking.

     

    The holy man said, 'I don't understand.'

     

    'It is simple,' said the Lord.

     

    'It requires but one skill. ............You see,... they have learned to feed each other, while the greedy think only of themselves.'

     

     

    When Jesus died on the cross, he was thinking of you.

     

    It's estimated 93% won't forward this.

     

    If you are one of the 7% who will, forward this with the title '7%'.

     

    I'm in the 7%.

     

    "Remember that I will always share my spoon with you."

     

     

    HAPPY EASTER!.....'And THANK-YOU to all of you who have 'shared your spoon with me'........ B)

     

    BLESSINGS,

     

    FAITH

  14. Hence my prediction that eventually TNF-alpha inhibitors will be used for these disorders...

     

     

     

     

     

    I don't know how to explain my thoughts, but somewhere between this information and "PANDAS" may be where some of our kids lie,....in other words, I am thinking it may not all really all be "PANDAS" in the current definition of the acronym ( but that some of our kids' symptoms DO have an autoimmune and inflammatory component, with illness as somewhat of a contributing trigger. So basically I like and agree with the above information and feel these are some things to look into as far as treatment for some of our kids symptoms. :) ...."PANDAS" may be too narrow a term for some of our kids.... not exactly sure, but just saying.

  15. Hello Kevin,

    I think the first thing I would try being that the vocal tic is a cough/throat clearing, is maybe do a dairy free diet for a couple of weeks and see if that helps. dairy produces mucous, so its possible that could be the trigger for him to want to clear the throat.

     

    I'm surprised that a neuro would have prescribed meds if you say it wasn't that bad,..some would go by if it was really bothering the child, and also sometimes the tics can fluctuate. I've been close to wanting to try meds a few times, but after sticking out a bad period, I would feel like it wasn't necessary and I bought some more time.

     

    You're on the right track, just keep reading, you'll find alot of things you can try to lessen the tics.

     

    does your child have any other issues? how long with this tic? any motor, or is it just vocal?

     

     

    thanks

    Faith

  16. :) Holy Crap! ....(can we say crap on the board? :ph34r: )

     

    Wondering now about this full moon stuff......

     

    I've heard this mentioned before on the TS side (so you guys might want to post or poke around over there, as there has been talk of that at time), but I never paid much attention, it just sounded too complicated and random for me. BUT, I was just remarking to myself this morning how my son's other issues aren't as prominent lately, (like the irritability, ocd stuff, etc.), but we still have vocal tics, they are a little less loud, but still there. (we are not on abx at this time and havn't been for several weeks, the ones we've tried just don't seem to have any positive effect)....

     

    And then, ... this morning my son was really having a wierd irritibility issue, he was actually moaning and groaning and having some obvious issues, I was doing his hair (he needs some help with the flat iron :ph34r: ) and he was off the wall irritable, and I kept saying, "what's going on?, you seem to be VERY irritable" , and even he admitted he didn't know why? I had to keep leaving and telling him to let me know when he was going to stop, he was acting like he almsot wanted to bite me or something... :huh:

     

    So now you say a full moon tonight? maybe there is something to this? I'm going to pay more attention now.....you never know.....I hope it doesn't increase tics........

     

    thanks for the thought.

     

    Faith

  17. hi mati's mom,

    so are you basically thinking the augmentin xr is really helping enough? but did it help at all in your opinion? i'm getting the impression it seems to have more of an effect on ocd and mood issues, did it help that? or do you feel your boy would be up and down just the same if not on augmentin xr?

     

    also, as far as the azith, (we deal with mostly tics, other issues come in kind of a second, so hard to gauge on that for us), but when we tried it out at 250 per day, I felt that my son's vocal tics got somewhat worse, I had a day where he missed two days and I actually thought he did better, and then when he got the next pill, his vocal was off the wall bad that day and next, until I just stopped it completely and things calmed immediately. I've seen a couple parents here report the same about azith. So just watch out for that, it could be a worsening before gets better, but don't really know, I didn't stick it out.

     

    Please let us know how things go and if you seem to experience that....good luck.

     

    How is the new baby doing, btw?

     

     

    regards

    Faith

  18. hope,

    I think you can do more than a 1/2 tsp of the natural calm if you wanted. I do the same thing with the lemonade, but I dissolve the mag powder in a very small amount of hot/boiled water and then put just a splash so he can just drink it pretty fast, so kind of concentrated, but he can get it down in one or two big sips.

  19. Can i ask is plasma ph, more readily covered by ins?

    or did you have to pay out of pocket

    and is it as costly as ivig?

     

    thanks to those responding!!!

     

    Fixit:

     

    $20-$30,000 Plasmapharesis

    $4-13,000 IVIG (depends on weight, how many days)

    IVIG for 55 pound son- $3500-5000 per day. Most of the additional cost-$5,000 is for hospital stay. Have it done at home, reduce overhead. Others can chime in here.

     

    michael,

    when/where are you doing IVIG? or is it done?

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