tpotter

I am so sorry to hear that your child is sick, but happy that you found our group, and got answers. I totally understand the feeling. I now that you said you want to follow a homeopathic and holistic route. Contact Stephanie2 for that. Also, I would consider contacting the NIMH at: http://clinicaltrials.gov/ct2/show/NCT01281969 They are doing a IVIG study, and your child, at 4, just makes the cutoff. You will get tons of support, free treatment, and more if your child is chosen to participate in the study. There are other parents on this list who can give you more info about, because their children were part of the study. It's kind of scary, but getting control of it now is what you really want, and the earlier you really go after it, the less chance you will still be fighting it years from now like many of us are (including my children...they have lost pretty much their entire childhoods from this.) Also, you mentioned that your child is having rages. Rages are not a "typical" symptom of PANDAS (although I noticed you said PITAND, so that is a possibility.) Anyway, what was it your child was diagnosed with? Rages can be caused by Mycoplasma pneumonia and bartonella, so I would very highly recommend that you rule both of these out, if you haven't already. My children get the "rages" (one far worse than the other,) and in fact he has gotten 2 of them in the past 2 days (ran to his room 2 nights ago before he harmed someone, and last night, I got him to "take a walk", because we were at a restaurant.) They're horrible, and I have even had my arm broken. Turns out, I had mycoP,which I was giving to him, and he also had a really bad case of bartonella! BTW, the bartonella is not easy to diagnose, but if your child has stretch marks, I would really suspect it (you can google "bartonella rash pictures" or "bartonella stretch marks picture" to see more. Turns out my son had them, and we thought they were regular stretch marks, until they started finally going away with the proper IV abx! If you want more info, you can PM me. I'm glad you found the problem early.

Hi LLM. Sorry to hear some symptoms have returned. Did you take her off abx? If I remember correctly from one of your post, you were considering it? Hope you see improvement with the fungal treatment. I don't want to push, but it could be yeast and mycoP. MycoP only takes a very simple blood test, and then at least you could rule it out. The reason I'm bringing it up again, is that I personally suffered from it for 3 years, and my only major symptoms were a dry cough, and uncontrolled asthma. I could have saved myself 3 years of ****, plus the fact that I am now dealing with possible permanent lung damage (I'm really having trouble clearing everything), and I exposed my entire family to it (they were all extremely high in IgG,and their IgG still goes up when my IgM rises.) Personally, I would just ask the LLMD (or even your pediatrician) to test for it. If it's negative, then you know the cough has nothing to do with that.

I haven't heard of this before, so I googled it. Got this from Wikepedia: Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. In males, instances of uninhibited hypersexuality during episodes have also been reported. Interestingly, DS has had each of these symptoms...hypersensitivity to noise and light would make him rage. At times I had documented that he couldn't stop eating....he was ravenous for hours, and just kept eating, never seeming to fill up. When he first got sick at 8 years old, he definitely had the hypersexuality, too, and this was quite scary. We thought it was seizure related, and sure enough, he ended up having fronto-temporal lobe seizures, which we all thought was causing each of these symptoms. Now, here's the best part. Most of these symptoms are either completely gone or well under control...by using seizure meds, and treating for Lyme, Bartonella, Babesia, Erlichiosis, and PANDAS (abx, IVIG, PEX, etc.) When we took him off the seizure meds for a followup eeg about 5 years ago (before knowing that he even had PANDAS/LYME), the unremitting hunger returned.) We haven't pulled him off since, but even seizures can be caused by Lyme and co-infections. So, my answer is...yes, I definitely think it can be caused by lyme and seizures (unless the seizures are also caused by lyme.) How are they treating her husband? You are welcome to give her my info, and if she wants to PM me, I will be happy to discuss it with her.

We did, but not for CVID (it was for SAD, which is even harder.) We had to fight it, and we had several doctors verify that my children had had severe reactions to vaccines, and that it was to dangerous. Then, again, it was Dr. B. who said it. But, don't you see Dr. L? Would she do it? Also, have you read the policy carefully. Does it specify that you have to do a challenge, even if there has been a reaction in the past?

See if there is a DAN doc in your area who takes insurance.

Could the dry cough be mycoP (that was my main symptom for 3 years.) Easy to test for (and quite accurate.)

We have also done ibuprofen. Make sure, though, that it's done with plenty of food in the stomach, as it can be very rough on the stomach. We also have seen excellent results with it. But, again, I wouldn't do it for more than a few weeks at a time, give a break, see what's happening, and only resume if he backslides. I'm really glad the bart rash is resolving. So is my DS's. Isn't it exciting to see that go?

Possibly the beginning of bart? Look at the following: https://sites.google.com/site/drjoneskids/tick-borne-diseases/ba

Cyber hugs

Yes. As can anything that causes inflammation in the brain (so any of these infections could.)

Get a printout of their actual IVIG policy for the dx. Then, follow it step by step. For instance, if it says that you have to prove how it is affecting your son, list: 1) what he was like before IVIG. 2) how he was after IVIG. Include supporting documentation...# of missed school days, how many visits to the dr. during a short time period (before, after, and then when it got worse again), what the diagnoses were at the dr (in our case they were always bacterial infections that needed abx...9 times in 6 months, which is quite excessive.) Take video if you can (and if you can dig up any from before, after, and then now.) Document, document, document. If getting it for PANDAS repeatedly is not an option, because there's no supporting documentation for multiple IVIGs, does your child have an immune deficiency (such as specific or primary immune deficiency?) There is supporting documentation for those, and you may need to add those as co-diagnoses. Again, find out what the requirements are to prove for either of these, because the requirements may be different. Finally, if your child is continuing to get sick, I would recommend (from personal experience with 2 kids, and multiple IVIGs) that you look for additional infections (lyme, bartonella, babesia, erlichiosis, rocky mt. spotted fever, viruses, etc.) All our kids have an autoimmune disorder, so they are susceptible to getting anything they are exposed to, and many also have difficulty getting it out of their bodies (my children turned out to have a single MTHFR gene mutation, and I ended up have a homozygous, which keeps the body from getting these things out of their bodies, but is very easy to remedy.) Personally, I am very grateful that my kids got the multiple IVIGs, but had I known what I know now, I would be also doing all the other investigation. Good luck.

I'll PM you. Unfortunately, our kids tend to be the targets, and that's part of the problem. My son was teased horribly in a religious day school, as well. In public elementary school it was his teacher, who just couldn't understand that he wasn't perfect (she was an extreme perfectionist.) Unfortunately, many of our kids don't understand the typical teasing, and frequently it really does go too far.

also, OCD can be caused by infection. Read the Lyme and PANDAS forums. We now know that infections, such as lyme and co-infections, strep, and others can cause inflammation in the basal ganglia, and that can cause OCD. I would suggest you read over both forums, and see if you can get to one of the specialists. Several courses of abx and certain supplements may take care of the problem!

I have to wonder if there might have been some bullying going on at school? It is not uncommon, and he may not have reported it to you. My son also had school refusal/phobia at his worst, and we ended up having to put him in a private school. We tried to ease him back to the public school, but it just didn't work, because there actually was bullying going on that the school was not dealing with. It is quite possible, that something may have been happening, that the school may not have perceived as bullying (or may have considered it "normal" for the social skills of that age group,) but your son either perceived it as bullying or it might actually have been so. That being said, we absolutely could not get our son back to the school, because every time he thinks of those kids (who would have moved on to the high school by now), he gets extremely anxious. My son is at a private school that caters to children with severe anxiety. It's been a godsend, because otherwise, we would have had to homeschool him, and he needs the social interaction.

I'll third the advice, and keep in mind that the new NIMH website mentions that there are other infections and environmental triggers as well, and so very many of us have found lots of other issues with our kids (immune system is affected, so they are very susceptible to a lot of things...strep, mycoP, lyme, bartonella, babesia, erlichiosis, viruses, etc., etc. If she's had it a long time (your son, too, btw,) you really need to consider looking at the possibility of those, as well.) Also, keep in mind that lyme/co-infections is a clinical dx, so the CDC definition is not necessarily what many of us have gone on. Both my children were PANDAS kids (younger was classic, older was more like your daughter,) and we now see Dr. L, Dr. B, LLMD, DAN, holistic chiropractor (including supplements), and primary care docs. And, they all have their own places in the care of my children. PM me if you want more information. I, too, have older children (16 and 19 now,) and we figured out 19 y.o., because of 16 y.o. (also severe psych issues.)

I would keep the appointment. I totally understand not wanting to waste time and money, BUT, lyme is a clinical dx, and in the end, it really may not be necessary to do any more tests Dr. Jones should be able to figure it out based on the clinical symptoms at this point, just like our LLMD did for us (turned out family was dealing with a whole bunch of co-infections, and we never knew it.) Based on our LLMD's questions, then starting treatment, and the results (including bad problems,) he figured it out, and we have now been treating for 2 years (for lyme and co-infections, in addition to 4+ years PANDAS), and are now starting to see results. I think it's well worth keeping that appointment. I really think you'll kick yourself more with the "what if" questions, particularly since he's so hard to get an appointment with. Good luck.

Very interesting. About 2 years ago, DS, who was always an avid bike rider, started having spells where he felt like he was going to pass out. Drs. couldn't figure it out, and even had dizziness and some weird stuff when driving (I actually made him pull over one time, and took over driving.) Neuro thought possible seizures, so he couldn't drive for 6 months (he was on learners permit.) Started lyme tx shortly afterwards, and he hasn't had symptoms since (although he also hasn't ridden bike since.) I suspect it was lyme, and may be more. If dr. suspects lyme, why is he only on Rifampin? What about doxy? I'm glad he's ok now.

Would immune deficiency or post-infectious encephalitis/encephalopathy work?

Sounds like OCD, which if so, is part of PANDAS (and also sounds like selective mutism. Hopefully she does get the right tx, and gets better. But, I guess maybe don't bring it up to her, so it doesn't increase her anxiety.

But there may be chiropractors who practice AK (Applied Kinesiology.) We were using a fantastic one in NY, but then moved. We still travelled back and forth regularly, and I finally looked online, and found one locally (even takes insurance!). Both chiropractors in his office have been trained in AK, and both have been very good. I would suggest googling,and then making lots of phone calls to ask if they do AK.

YW

Just for the record, other docs are qualified/certified in AK (applied kinesiology,) which is muscle testing, but they learn from different organizations.

Are you working with a DAN dr or someone who is really working on her gut. Dr. Cunningham has referred to it as the "2nd brain."

We also found lyme after IVIG, but IVIG did help both my boys in the meantime. Plus, I know of at least one person on this forum who's son had a horrendous reaction to the IVIG the first time, but went on to improve after multiple IVIG's. For us, even with the IVIG and PEX, one of my children just kept getting sick every 3 weeks like clockwork. Then, people on the forum started mentioning Lyme, and I decided to pursue it. Here's my opinion. IVIG truly helped my children...it took a huge edge off things, and helped the immune system. Could we get that from other immune treatments (such as acupuncture, chiropractics, supplements, etc?) Very possibly. We do that now. I do not regret the IVIG treatments we did in the least. After the first treatment, my children were amazing..."arguing" over the fact that the other could go first (they were so incredibly sweet to each other, and to everyone else.) After the 2nd treatment, my older son, who is also diagnosed with Asperger's (but who I now believe was lyme/pans all along) social skills jumped 7 years...overnight!. So,no I do not regret it at all. But, now I know more. I would definitely pursue the possibility of lyme (and you really, really need to see an LLMD for this, because it's a clinical dx...just because the lyme test says "false" does not mean it is false.) You should test for MTHFR gene mutation. Sometimes simple vitamins and supplements may make a huge difference, as well. We are also really targeting the immune system with chiropractics, acupuncture, supplements, LDN. With PANS, there can be so many things involved: immune system, nervous system, ability to detoxify, and who knows what infections (my children, for instance, turned out to have strep, bartonella, babesia, erlichiosis, lyme, and multiple viral infections. Who would have thunked that when I started. If I had to do it over again, as much as I am very, very pro-IVIG, I would certainly try ruling out lyme & co-infections (from an LLMD, not just tests), MTHFR, and other issues, and then look at adding in alternative treatments. Give yourself about 1 month to see if it helps (some may actually help instantly). Then, if it doesn't work, my opinion would be to go for the IVIG. I also agree to avoid the allergy shots. Personally, I think that's like giving immunizations to these kids...their immune systems are already a mess, and expecting that it will respond appropriately to some of the allergies, is just absurd (IMHO.) Good luck with whatever you decide. We are all figuring this out together, so there are no wrong or right answers.

:D :D :D