Just diagnosed with PITAND

[angie6282]

My 4 yr old ds was diagnosed with PITAND on Wednesday. I am still absorbing the information and beginning my research on this disorder and possible treatments. On one hand I am relieved to know that there is a medical explanation for his intense rage and behavioral issues and I can let go of so much of the guilt I have been feeling, thinking that his behavior is so out of control because I am a horrible mother. I have spent months agonizing over my parenting skills, blaming his behavior on myself for working too much, not giving him enough attention, and fighting with my dh. I am still in shock, trying to understand that there is something happening in his brain that has caused him to behave this way and it is not all my fault. He has had a plethora of bronchial infections since he was born, horrible eczema and food/environmental allergies, and now to add this to his plate, I am completely overwhelmed and don't even know where to start...Fortunately the eczema and allergies are under control with a very strict diet and vitamin supplements, so now I can focus on the new OCD behaviors, regression, rages, and anxiety that started one morning 18 months ago. My biggest concern right now is finding him a probiotic to take while on the zithromax his neurologist prescribed. She said to find a yeast-based probiotic so it doesn't just get killed by the antibiotic, but I don't even know how to go about finding one. I suppose I could have asked before I left the office but I was in a bit of shock upon hearing the diagnosis. I googled it and keep reading about how it should be packed on ice during the summer so I'm hesitant to order it online. I also want to learn more about natural treatments and I hate the idea of antibiotics attacking his body for 90 days, but I'm desperate to help him so will start with that. In the long run though, and especially for winter weather, I would like to find a homeopathic/naturopathic treatment that could keep flare-ups at bay. I also need to get my family (including dh!) to understand this-they all think it's a completely bogus diagnosis so that makes it hard when I feel like I have no support here. Sorry for the venting, just feeling so overwhelmed and alone in this right now...

[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.

[MomWithOCDSon]

Stephanie here on the forum is a great resource for homeopathic treatment of PANs/PITANDS.

 

As for a yeast-based probiotic, your doctor might be thinking of sachromyces boulardi (my spelling may be slightly off), also frequently referred to as "sach b" or "s boulardis." You can get it at your pharmacy under the brand name Florastor, though it tends to be a little expensive. Less expensive, generic forms of sach b. are available at health food stores, the Vitamin Shoppe and Whole Foods by brands like Jarrow and Nutrition Now. Sach b. is a beneficial yeast that is not killed off by antibiotics.

 

There are a number of other strains of probiotic organisms that can survive antibiotics, too, such as lactobillus g (Culturelle is a brand name available at most grocery stores), and Renew Life makes a number of multi-strain varieties; you can get them on line or, again, at places like health food stores, the Vitamin Shoppe or Whole Foods.

 

Really, the main probiotic strain you want to avoid because you'd just be wasting your money is acidolpholus, the most prolific of the popular probiotics and then one contained in yogurt, kefir and those popular "pearls" you see advertised these days. Antibiotics can completely wipe out acidolpholus, so dosing that is pretty pointless.

 

Good luck!

[junkyardjean]

Welcome to the board - this has been a great place for our family to find information, support, and understanding from others who just "get it"...

 

We have dealt extensively with rages with dd4. We have had her tested for many other infections as well, but so far, all clear (thank goodness!). Her initial "set off" was in November 2011 - asymptomatic strep infection only later identified by elevated aso titers. Her titers have returned to normal, but it was months of behavioral issues before we were able to get things back under control. She was reacting to everything that she came into contact with - virus, bacteria - if her immune system was triggered by something, her behavior almost immediately declined.

 

We have decided to go with natural methods at this point. She receives constitutional hydrotherapy treatments from ND - we went for five treatments a week (over three days) in the beginning as she was down to about 10% functioning. The idea behind this treatment is to strengthen, tone, and modify her immune system. Her white blood cells came back up to normal after a couple of weeks of starting the treatments, and her blood results have continued to steadily improve as time has gone on. We often didn't leave the house because I felt I couldn't manage her behavior and it was prevention to just stay home as I could contain things much better. She has also switched to a very clean diet (whole grains, veggies, fruits, beans, nuts), and that has definitely helped. She has also had a couple homeopathy remedies, but used mostly for the rages. She is not using any currently, and we have been lucky enough to get her back to baseline. It is nice to have my girl back...

 

She is down to two hydrotherapy treatments a week now, and it definitely has helped in her case to support her body to fight things off without the behavioral upset. We have also just made the decision to take her completely off her proph abx due to some nasty side effects. Different things have helped different people, and I think that has been the most frustrating part for me - there is no clear path on what to do. I am just beginning to feel like we are claiming back our life, my role as a mother (which I have questioned much too!! I feel your pain on that )

 

It helped me immensely to read historic posts on this forum as well - when you find a story that sounds familiar, send a pm to ask questions. People on this board have a wealth of knowledge and there is no need to "reinvent the wheel".

 

Good luck!

[JuliaFaith]

After over 2 yrs. of treatment so far (and hopefully nearing the end), I have discovered a few things of which were very important in moving forward with healing. We tried 'allopathic - Western' medicine for 6 months (abx/steriods) with no improvements and were looking at doing IVIG treatments. Some wonderful forum members suggested that I look at 'lyme' as a possibility. I figured with IVIG being somewhat invasive it would not hurt to do 'one' visit to a lyme literate doctor. This brought us to a 'Natureopathic Doctor - uses all types of meds' and treats the whole body [first time ever going to one].

 

After one visit, we knew it was the right place (even tho we loved our PANDAS doctor!). It seemed that something had happened to my ds14 body to initiate the 'autoimmune disfunction called PANDAS.' So we had not only named what was going on, we needed to find out all the things that were making that happen. These doctors have systematically treated many things that were not working correctly in his body (several doctors had said 'he was fine') which included detoxing/prescription meds/nutrients/natureopathic meds/homeopathic meds/cutting edge medical discoveries to name a few.

 

These kids (and adults) have many things going on in their bodies at once, which is why they are so ill. It takes a while to find all the pieces of the puzzle, but moving in the direction of the ND we see has made the process less painful (i.e., flare-ups) and, I feel, more complete for long-term health.

 

This is just our experience.

 

You are in a great place coming to this forum for answers and support and I wish you the best for healing.