tpotter

Thanks. I'll look into that.

What is an ND?

Using NAC. Will look into the Buhner herbs (haven't heard of this, but I'll research it it tomorrow and Tuesday while the DSs are getting IVIG.

We're certain that PANDAS started earlier. Our son had his "first" symptom when he was 15...hospitalized for being suicidal. But, he's also diagnosed with Asperger's, and had strep a lot when he was younger. Tonsillectomy and even stomach surgery (almost burned a hole in his stomach...now I think it was/is strep related.) We found evidence of handwriting changes from 12 years ago purely by chance...changed dramatically overnight.) So we know for sure it started earlier. How early? Don't know...could have been congenital, could have been MMR vaccine (had major allergic reaction to it...broke out in hives, etc.) So, yes, definitely started sooner than we were aware. I think the Asperger's symptoms are also related, as IVIG has been helping social skills awareness!

Both DS and I have elevated liver enzymes (I'm waiting to get my recent test back to see if it's changed.) DS is taking milk thistle and ALA and I am taking just the ALA, because I had an allergic reaction to the milk thistle. DS's liver enzymes have been checked 3 times now, and they keep going UP. Mine have been checked 2X, but I don't have the latest ones back. DS is now off all abx, except azith, because the oral abx have not been making any difference on the apparent lyme/bartonella (he appears to have the rash, but WB was negative. LLMD said to get Igenex, so we are just sending that off tomorrow. He had to stop taking doxy several months ago, because of a pancreatitis attack from it, but he was on plaquinil the past months, and flaggyl the month or two before that (plus alternating between augmentin XR and azith. I'm currently taking azith (for mycoP) and doxy. Yikes...anyone know what to do? I'm really getting scared by this. DS's AST went from 46 last month to 48 this month. And, his ALT when from 57 to 83! Also, protein and globulin are slightly elevated. I can't find my numbers, but they were elevated, too. LLMD is the one who told us to take milk thistle and ALA. Thanks for your help.

Emerson, I am so glad that you are feeling so much better. Hopefully it keeps going that way.

I would just like to add that it's possible that you are thinking that you donated...I did just before the end of the year. That was for last year. This is a new year, and a new donation. Please dig deep into your hearts, and try to donate something...anything. Thanks.

Although I can't give you any names, I am giving you a huge cyber hug. Fcefxr is right that he can't deny the kids medical tx. If necessary, can you go to child protective services, and report him for denying them medical care? It might be considered medical negligence.

Try taking activated charcoal or bentonite clay to help with the herxing. Also, please post on the Lyme forum, because you will get phenomenal support and suggestions from that. Are you seeing an LLMD for your Lyme?

Bumping

Bumping again.

Thanks everyone for your replies. And, thanks for your condolences. You guys are the greatest.

Bumping...Just think...if everyone on this forum gave $1, $5, $10? It doesn't take much to really add up. Personally, I don't know what I would have done without this forum.

Why do non-pediatric doctors seem to understand PANDAS better than pediatric doctors (or is it that pediatric doctors are just denying it?) My dad was very sick the past months (he just passed away last week.) I have suspected for several years that my dad probably had PANDAS, and that's why he battled major depression since he was 20 yo (my now 18 yo DS presents exactly like my dad, but is being treated for PANDAS/Lyme.) Anyway, when my dad was hospitalized, because he fell and broke his hip (he was also suffering from advanced Parkinson's) he suddenly had a very violent episode. I found out that had changed his psychotropic meds, and I called his gerontologist (yes...old person's dr) I explained that both my DSs had "an autoimmune disorder that caused neuropsych symptoms", and that research shows that psychotropic meds can make it worse. She not only understood what I was talking about (although hadn't heard about the psychotropic meds connection,) but her response was: "now that explains a whole lot." He was taken off the meds. Fast forward to 1 1/2 weeks ago, when he started to rapidly decline. I was visiting him, and had a meeting with the geriatric psychiatrist at the skilled nursing center. Again, I told her about both my kids have "an autoimmune disorder caused by strep, and causing neuropsych symptoms." I added that it is highly believed that there is a genetic component, and that my son and father present exactly alike. She had heard of PANDAS, and couldn't believe that it was still so "controversial." "How can they (the doctors) not believe that something exists when he got the symptoms right after getting strep (we were talking about my DS now 15 at that point.) So, my question is: Are the pediatric doctors (pediatricians, ID, immunology, neurology, etc.) who deny the connection, fools, idots, or just don't care? We've been knowingly fighting this disorder for 7 years, although my DS 18 probably had it since at least 1st grade (we have handwriting evidence dating back to that,) although he had a bad allergic reaction to the MMR, and also potentially got it from me (congenital.) Just thought I'd pose the question.

one more thing...if it turns out it's not asthma (and I would definitely check that out first,) our LLMD told me to take megadoses of vitamin D (we're talking 50K units per day for one week!) Granted I'm much bigger than you're child, but the deal is that vitamin D in larger doses definitely works...it helped me. Also, btw...I agree about checking mycoP...I had mycoP for probably 3 years, before we caught it. Good luck.

May be asthma. I'd get her to the dr. immediately. It doesn't matter what the cause (viral, bacterial, etc.) asthma can kill by completely blocking the airway. BTW...personally, I take ibuprofin when my asthma's at it's worst (in addition to asthma meds,) because it helps me get rid of the tightness in my chest.

Do not feel the least be guilty. My DS (now 15) missed 3 months of school in 7th grade (not that he learned anything in 6th or the first 1/2 of 7th, because he was too stressed and sick!) Both my DS 15 and DS18 have missed a lot of school over the past 4 years (up to 32 days one year for one of them...that's also one of the arguments I used to fight insurance to pay for the IVIG). Both are doing fine in school. Granted, my DS18's grade point average dropped from A's to B's (and he probably missed out on a scholarship opportunity for college next year, because of the GPA...which is a real bummer,) but it is what it is. You're just dealing with kindergarten. Teach her the ABC's, read a lot to her every day, sing songs, go outside to the park and play, play, play (she'll meet other kids there, too.) Socially, these kids are so anxious and sick, anyway, that not all of them get much in the way of socializing at school, anyway. So, don't feel guilty. If you're DH gets on your case, remind him that he doesn't want your DD to end up sick her whole life, and now is the time to really take care of her needs.

My DS complains of chest (and other parts of the body) shocks...they knock him to the floor. We've had everything checked, including possible seizures (he has seizures and is being treated for them, but the behavior doesn't happen with the abnormal brain waves.) But, he doesn't stop breathing. I think that's a great idea to see a cardiologist. For the record, I know you spent a lot on the IVIG, but it does frequently take more than one treatment (my DS 15 has had 4, and my DS 18 has had 3.) If the age regression has stopped (after IVIG,) then I would say it may very well have been from that. I noticed in my DS 18, that he jumped from about 7 years old (socially) to about 13/14 years old after just the either the first or second IVIG (the first there were tremendous gains, so I'm not sure where it started, but it was very noticeable.) We've had other gains since then, but still definitely some issues. Let us know how your DD does with the ped. cardiologist.

Thanks for sharing. I found the 2nd to last paragraph very interesting, because we had that experience with my father (I had spoken to his gerontologist when I found out he was on seroquel, and after explaining our family's history with PANDAS, and my suspicion that my Dad probably had it, she took him off the seroquel (it was making him extremely violent.)

I would also suggest that you might get a better rate if you bid for a room on Priceline.com. We got an amazing price at a 3 1/2 star hotel in Stamford (quite a bit less than the Doubletree in Norwalk.) Start bidding about 4-5 days before you go, because you only get one bid per day. If your bid is not accepted, you can go up a little the next few days.

Plus the docs are totally onboard with the pharmas...I had a discussion with a pediatrican I met the other day, and she told me that it didn't matter about a few..."it's for the greater good." I even suggested that she space out the immunizations, instead of overloading immature immune systems, and she said we would never agree! I'm sure that even if the CDC found a problem, they would still come back with: "but it's for the greater good!" For the record, I am NOT against all immunizations, as long as they are limited and spaced out. A lot of people were dying from polio, diptheria, tetanus, etc. But, it's interesting that when we start a child on real food (rather than formula or breast milk,) we're told to do one at a time, and SPACE THEM OUT, so we can see if there's a reaction. Now, most of our kids can't tolerate ANY immunizations (leaving them susceptable to some really awful diseases)...good or bad, because they were given improperly. Interesting how the docs can't follow their own recommendations, particularly with something so potentially damaging as immunizations!

I heard on the news a few weeks ago that the flu vaccine seemed to be causing Narcolepsy-like symptoms in some teenagers. They did this whole story on it, but then ended with something to the effect of: it still helps more than it hurts!!! I was completely blown away!

SmartyJones Very good response. We kept reading about Lyme on this forum, too, and I finally started looking at it when we were having a horrendous time getting sufficient treatment for PANDAS for my boys. Getting an appt., and getting tested for Lyme was the one thing I could control (I couldn't control getting followup from some of the docs, and I couldn't control insurance paying for it at that time, but I was able to get an appointment with a highly recommended LLMD (within 2 hours of my house). While waiting for that appt., I got all our WB's done, and surprisingly my DH was positive, one of my son's and myself were questionable (with symptoms), and one of my son's only had 1 band positive. Since Lyme is a clinical dx, the doc looked at the SYMPTOMS, not just the results, and we started treatment. I was positive that it was clearly PANDAS, before, but we all certainly herxed (except my DH...lol...even though he was the only one who was 100% positive on the WB, has RA, heart problems, possibly related.) We have since gotten IVIG 3X for each of my kids (I do believe that we have to tx the immune system along with the infections,) So, there's now no question in my mind that there are definitely more things at play to PANDAS/PITAND that just strep. I think that the longer one is sick with it (my kids have been sick a very long time, and are older), the more chance there is that they have picked up even more "bugs.", because of their bad immune systems! Just my opinion.

Time for a question... How many of you can remember whether or not your Autistic and/or PANDAS child (one of mine has both, and the other has just one) was either sick just before or just after vaccinating? Not to propose a "new" theory, but I am beginning to wonder if maybe some of our kids were sick prior to getting the vaccine, and we didn't know it (or didn't know NOT to give them the shots at that time), and that's what caused or is causing the immune system problems. Personally, I don't remember if this applies to either of my children, but I'm just curious if there is a correlation. I know it's not recommended to give vaccines when the children are sick, and I do know that the chicken pox vaccine specifically states that it should not be given to children with seizures!

Fantastic. I'm so glad that she was able to get her back released.