Jump to content
ACN Latitudes Forums

tu4four

Members
  • Content Count

    163
  • Joined

  • Last visited

  • Days Won

    1

Posts posted by tu4four

  1. I posted last week about my 4 year old being sick--negative strep test but warm to me, suddenly afraid to go into another room alone, clingy whiny, 2 pandas sibs. So I got a letter in the mail yesterday telling me the results of the culture. She has a staph infection.

     

    I have looked around a little bit, and there seems to be a question about whether or not staph could trigger PANDAS flares. But I thought I had read that it could before. And I have no doubt that it can as dd; had clear PANDAS symptoms just like when her sister (12) was this age.

     

    The nurse practitioner we saw was very concerned....mainly that the only way that she thought this could have happened was through sexual abuse. I know that this is not the case because she is never alone, and she doesn't go out anywhere because we homeschool. i also know that our kids have issues like crazy infections that surprise doctors.

     

    Any thoughts on treatment or expericed with staph as trigger?

     

    Btw, my somewhat stabilized pandas dd12 is now much less stable, and my dd17 is sick with a fever today (she is not diAgnosed with pandas). My ds8 seems fairly stable.

  2. Thanks for that info. Yes, I am very interested in buhner and would love to hear more.

     

    I am glad to hear that your kiddo is doing better. I have wondered about you; I haven't been on here much lately.

     

    I am having a bit of a time getting her to take liquid Advil, so I don't think would hold an herbal tincture in her mouth for a long time or let it dribble down her throat.

     

    Oddly enough, her throat doesn't appear to be that red. I am assuming that it is somewhere else....not so easily testable....because I know that she has had t in the past and been unable to get clear of it.

     

    I gave her some olive leaf extract that I had been giving my other kids...opened a capsule. But after she tasted that, I probably won't be able to get her to do that again. I may get barlean's ole (I think it tastes okay (liquid) until I know for sure what else to so. Poor girl. I hate watching another one go down this road, knowing what could be ahead.

  3. I have been on this forum in a panic many times over my dd12 who has been diagnosed with PANDAS, had 4 years of psych meds, treatment for Lyme, rec for IVIG, but denied by insurance. Her siblings all have some symptoms of the same, though none nearly as bad as dd12.

     

    The good news....dd12 is doing much better right now. Not perfect, but on a very low dose of psych med and lots of fish oil, etc. When we last saw our doc, he gave us new things to help rebuild her gut, etc. And she has the c677 gene defect. I am now considering supplementing her with the important stuff through many, many more fruits and vegetables (through Juice Plus).

     

    The bad news....dd4, whom I have always known had some of the same early symptoms has within the past week hit the stage where she is afraid to walk from one room to the other if one of us isn't right there with her....often across the room where I can still see her is too much. She says she's afraid. She says she can't describe what she's afraid of. She is suddenly super whiny and clingy, so unlike the happy, bubbly her that she was a week or so ago.

     

    She can still play and do things fun....as long as at least one of us is right there with her. She has always had a hard time going to sleep, but now she absolutely will not stay in bed if one of us does not lay with her to go to sleep....even though she shares a room with two of her siblings.

     

    And she feels like she has a low grade fever. She has a history of a lot of strep, often asymptomatic and difficult to treat. I took her in for a strep test yesterday, and it was negative. But this is it. The same thing. Same emotional issues, and it will only go downhill from here. I know it.

     

    After all of this time, all of this wishing I could go back with dd12 and catch it sooner so we would have a better outcome/lose less of her childhood....here we are again, and I don't really know where to go from here. I have no abx for her...she can't swallow a pill or capsule, and the our family bank is empty from treating chronic illness. So.....what could I use naturally this early on? I am thinking colloidal silver is good for knocking out strep? I have olive leaf extract in a capsule that I could open. Any other ideas?

     

     

     

     

  4. Just have to add in my 2 cents....I hate, hate, hate psych drugs---and we have used a boatload of them--but at times, it has been the only thing to give my family some relief. Risperdal was rough on my girl and actually ramped up her OCD.....we took her off of this ASAP, but abilify has been a lifesaver for us at times. Without abx or other apps to trear the underlying issue, we always ended up having to increase the med and/or add other heavy meds. So not treating the real issue is not an option, but psych meds have certainly helped us through some dark times.

  5. Just have to add in my 2 cents....I hate, hate, hate psych drugs---and we have used a boatload of them--but at times, it has been the only thing to give my family some relief. Risperdal was rough on my girl and actually ramped up her OCD.....we took her off of this ASAP, but abilify has been a lifesaver for us at times. Without abx or other apps to trear the underlying issue, we always ended up having to increase the med and/or add other heavy meds. So not treating the real issue is not an option, but psych meds have certainly helped us through some dark times.

  6. It's been a while since I have been on here. I thought we might be seeing a little light, and I had ignored my other children and homeschooling due to constant research and putting out fires all day long, so I had to take a break. But here we still are.

     

    We have a long story, I apologize--i know a lot of you have read it. i tried to write what he bottom l e was, but that's the real million dollar quesstion, isn't it? if we knew what he bottom line was, maybe we'd have a better ahot at fixing it.

     

    My dd12 started with symptoms at 4. She had lots of strep, and we have a PANDAS diagnosis as well as Lyme, Bart, babesia. Micoplasma, hhv6, etc, etc. did 4 years of psych meds. Last feb we started seeing a pANDAS immuno and in April an llmd who uses ART.

     

    She has one copy of he c677 gene mutation. Also a mildly high TPO (anti thyroid) level. Low cd57. Low levels of zinc. No tics or motor issues. yeast history. Marked onset of OCD if around strep, but her predominant issue is constant raging and aggression. Pulled her out of school in Feb because she stopped functioning at school. Most all of the PANDAS criteria however including loss of math skills, handwriting changes, bedwetting, frequent urination, clothing sensitivity, separation anxiety, etc, etc.

     

    We have used cefdinir, Zithromax. Mepron, bicillin injections, samento, curcumin, vitamin d. Methyl folate, methylb12, zinc, b6, diflucan. Nystatin, grapefruit seed extract, para-a. Wormwood mixture, alinia, artemisinin, a-Bart, a-bab, Milk thistle, rentone, rifampin, flagyl (briefly) and I am sure that I am missing a ton. And we've used a lot of them at the same time to address the different forms of lyme and coinfections.

     

    In November, she was still really rough--she has been this way through most of the past 8 years. We had weaned her off of all psych meds last January due to horrible reactions. The only improvement we saw was that she could sleep a little better in June.

    In nov, our llmd said that through ART, he was not finding Lyme, Bart, babesia, parasites....anything significant. We saw another immuno who rec IVIG, but her bloodwork would not convince insurance to pay for it. We had to stArt her back on a low dose of abilify which helped.

     

    Saw a mainstream neuro in October and had an MRI (arachnoid cyst noted as well a some type of minor sinus disease and a small pineal cyst which dr did not ink contributed to her sudden onset of feeling extremely hot all of the time) and a lumbar puncture. It was like pulling teeth to get any info back from them, but he little that I did get back was supposedly normal. EXCEPT her opening pressure was 38 which was very high in their words and needed to be watched. We as a neuro opthamologist who said that he did not see any peripheral vision loss, and things looked normal except be gave her a pretty suubstantial eyeglass rx which she refuses to wear even around the house even though she picked them out.

     

    So here's the weird med thing. My pandas daughter was somewhat bearable on her low dose of abilfy, but she couldn't/would 't complete a task to save her life. still incredibly irritablle and could 't get along with our family, wouldn't listen to me---but she wasn't trying to hurt everyone and was 't tearing my house down. My oldest daughter had a rx for an ADHD med that she said gave her headaches. As my PANDAS daughter could not function or complete any task, we decided to try her on it. (It was a very low dose). Miraculously, an hour later, she was fantastic. Not only in terms of attention, but also in terms of nice. Out of the blue said, "I think I can really be nice no, Mom!" (She didn't know that she had taken a thing different than a boatload of supplements like normal).

     

    Saw our psych. He did testing, gave us an rx---all was great....for 3 days. Beefed up her supplements, as I had started to slack, again an improvement. Now she's been on her normal supplements plus artemisinin and samento and wormwood for more than 3 days, and we have not returned to fantastic or even bearable. She is downright mean, will not listen to a thing I say, and now she is as big as I am, and I cannot move her.

     

    In all her previous aggression, she never tried to hurt me out of th blue (physically), but in he past two or three days, she has punched me as I came in the room and kicked me when I turned my back.

     

    I'm sorry this is so long. It is so frustrating that we are all on our own (except for each other). Just told to go home and somehow raise our children and have a marriage like this.

     

    Any ideas that this story gives you--I welcome them. Thanks for reading.

  7. I know a lot of people have had bad experiences with abilify, but for us it has been a life saver at times....but not in conjunction with other psych drugs....we've tried so hard to be off of all of those kinds of meds, but after almost a year off of most of it, we had to go back for a low dose. And I have to say that our dd11 does not always respond the same way....I think it's because this gunk that's really causing all of this is constantly changing. We have also recently discovered that vyvanse, an ADHD med, totally improves her state and allows her to actually function, do schoolwork and be kind and helpful....until it wears off.

  8. My ds8 has had some ups and downs over the past 6 months. I am having him evaluated today for dyslexia. And in my mind there is no need to have him evaluated for ADHD (as in, he can't focus or remember to save his life and is constantly interrupting, etc)

     

    Wondering if you have seen a fairly swift improvement in dyslexic and/or ADHD behaviors with treatment for lyme/babesia/Bart

     

    I am sure that he got all of this in utero as his siblings, dad and I are all positive for lyme. And he started out coloring upside down and looking at books that way. It hasn't been a sudden onset of this type of behavior (irritability and aggression, yes).

     

    He has the mthfr c677 (Hetero) mutation, so I know that helping detox has to come into play for him. He is on a small dose of methyl folate now in addition to some other things. Yesterday we tried him on vyvanse (for adhd). And he was a lot better.

     

    So I'm asking this because I hate those meds, and I know there is a reason for these issues. But I don't think he, or our family (including dd11with pandas of the raging type) can handle any more chaos. Whatever I can do to bring some better, warmer feelings to our house must be done. Just wondering if this will be more or less long term.

  9. My ds8 has had some ups and downs over the past 6 months. I am having him evaluated today for dyslexia. And in my mind there is no need to have him evaluated for ADHD (as in, he can't focus or remember to save his life and is constantly interrupting, etc)

     

    Wondering if you have seen a fairly swift improvement in dyslexic and/or ADHD behaviors with treatment for lyme/babesia/Bart

     

    I am sure that he got all of this in utero as his siblings, dad and I are all positive for lyme. And he started out coloring upside down and looking at books that way. It hasn't been a sudden onset of this type of behavior (irritability and aggression, yes).

     

    He has the mthfr c677 (Hetero) mutation, so I know that helping detox has to come into play for him. He is on a small dose of methyl folate now in addition to some other things. Yesterday we tried him on vyvanse (for adhd). And he was a lot better.

     

    So I'm asking this because I hate those meds, and I know there is a reason for these issues. But I don't think he, or our family (including dd11with pandas of the raging type) can handle any more chaos. Whatever I can do to bring some better, warmer feelings to our house must be done. Just wondering if this will be more or less long term.

  10. I think I have ruined another doc relationship today. I came in to see her for a pain in my side, and I really did plan to be very tight-lipped and not mention lyme (I am positive, too) or PANDAS.

    But apparently a couple of years ago i mentioned Lyme and my irregular, wacky heartbeat to her partner so it was right there on the record and she asked me about it.

     

    She asked me if I was treating it, like she believed me, and I just couldn't help myself. I told her about my kids and PANDAS (which she said she had heard of) and I ended up telling her all about our shameful (although I didn't use judgmental words) pediatric system all over this city.

     

    I could see after I had said all of this that she was distancing herself--instead of now believing, she was re-evaluating my sanity, so to speak, especially after she asked me about the flu shot, and I explained (like talking to a friend) why we don't get it.

     

    I know my kids are sick. And at the worst of it all--in my daughter's most intense raging times, my husband and I have talked about the fact that when things are not that bad, we constantly ask ourselves and each other...is it really that bad? Maybe it 's just behavior. We have both said, " if I ever wonder if it was really that bad, remind me--yes it was (is)"

     

    But here we are again, back on a low dose of abilify, my son is not as out of control(but he's certainly not himself again. And my husband is not really sure that they Are as sick As I think are. Let me change that. He knows that my daughter is not well...4 years of psych meds and her current condition tell him that. But he doesn't necessarily agree that it is because of lyme/infection/PANDAS

     

    I feel crazy. My mom talked to my husband last time she was here telling him I look tired, discussing what was going on...he told her that I definitely believed that it was lyme, but that he didn't necessarily agree with that 100%. She asked him why he didn't tell me that (which he had).

     

    I'm just tired of fighting. But what is my alternative? And I'm the one who is there the most dealing with the fighting, the raging, the not listening and disrespect....this is not the family environment that I was planning.....

     

    Sorry...I know I'm just complaining....

  11. So sorry. My daughter has been on many, many psych meds over the course of four years. Most of them were horrible,, especially the antidepressant. The one thing that did help quite a bit at times and at other times not so much (and she is back on a 7.5 mg / day) was Abilify. Clonipin did absolutely nothing for her.

     

    I will say that my son, who has some of the same issues but has just recently gotten almost to her level of rage and irritability, has taken 12 drops of grapefruit seed extract morning and night with some significant improvement at times. Right now it 's not working as well but for a while, it was gold. You might try that first in a little water or juice. Again, you'll know pretty quickly if it's goi g to do anything--or we did. It is apparently a pretty potent anti-fungal and anti-viral, so.....?

    Good luck!

  12. I don't have any experience with that med. I read a little about it on the web just now, but with no experience of my own? I know that Diflucan is one of the big kickers for yeast in terms of Rx meds. But it can be hard on the liver, so it's a good idea to use milk thistle or some other liver support at the same time.

     

    Also, I often use 2 stool softeners in the a.m, 1 in the pm for my kids and at the same time, I give them up to 1000 mg mag citrate a.m and p.m. So maybe you could try increasing your mag a little and adding a stool softener or two.

     

    Good luck!

  13. Wow, from reading your tagline, our girls look so similar.

     

    I hear great things about GSE and Oil of Oregano. We have used Oil of Oregano topically for pain, but I understand that it is really good and really potent....We have used GSE recently with my ds8....10-12 drops in a.m. and same in p.m. For a while there, I saw a significant difference in him. Maybe I wasn't as consistent as I should have been...were were very busy, and things started to slip. I don't know if GSE was helping a yeast issue, which we all battle in my family, or if it was working as an anti-viral, etc.....If it were me, I would try what I had first and see what the response was. If you don't have either......?

     

    Let us know how it goes....

  14. We' be had this issue quite a bit--even to the point of er visits and a couple of hospital admissions. I think yeast has been a big player for us---maybe you could Ty something g to kill yeast as well as putting the good bacteria back. We have used nystatin and diflucan with good success, but I understand that grapefruit seed extract works really well to kill yeast--we ha used it for something else.

     

    I think another big player related to constipation in our family has also been parasites. My daughter took para-a for a while....I'm not certain that I have the best anti-parasitic protocol down, but I do think this has been/possibly continues to be a big issue for us.

     

    Good luck

  15. Are lumbar punctures only ordered by neuros? We have worked with a couple of PANDAS immunologists, but the mainstream neuro ordered our lumbar puncture. I need to find somebody who will specifically look for O bands. My daughter has to have another LP done in 3 months anyway. We live in Texas.

     

    Thanks

  16. HUH???? My son did not have high protein levels and they found the O bands....I am confused....I thought this was a routine part of testing of the spinal fluid??? My ds's protein levels were fine....yet they found the O bands....they do a blood serum at the same time looking for O bands...but why not test for them...they already have the fluid? Something is off..

    I agree that something is off. Especially since every time I talked to anyone....the nurses, the doctor who was to do the LP, the neuro, the scheduling people, I told them that I wanted to be sure that we were testing for this.

     

    This is the initial report, but the only other two parts that he is waiting for are the neurotransmitter levels and testing for NMDA.

     

    The good part of this, I guess, is that she HAS to have another LP in three months, and I might as well take her to a PANDAS neuro.....guess I was wrong about that when I said that a mainstream neuro couldn't argue with the results of the lumbar puncture....he could just not look at everything.

     

    I am tired. I am sick. And, just like everybody else, I am so frustrated with having to constantly play detective, on top of being called stupid and other lovely names by now 2 of my children. I want them to be well. I want to have a life with them.

  17. MRI was fine, clear. Lumbar puncture showed clear fluid, nothing remarkable. Protein, glucose, etc all within normal limits. I had repeatedly asked him and everyone I came into contact with to test for o bands, autoimmune markers. Neurologist said today that they only check I bands, etc when protein is high. I am concerned about that.

     

    BUT...he said that her pressure was VERY high... The opening pressure of spinal fluid. It should have been, according to him. 20, 22 tops, and hers was 38. He said this can really cause vision loss, and they are trying to get us in to see a neuro-opthomalogist.

     

    Said we should treat her with diamox to reduce fluid....possibly topamax, which he said might have the added benefit of calming her mood.

     

    He said we will have to recheck it with another lumbar puncture in about 3 months.

     

    He said there was no encephilitis.

     

    My concern.....he did not have any idea about a cause. Hmmm.... I'vebeen thinking maybe parasites?

     

    Any ideas?

×
×
  • Create New...