Confused, worried, running out of time

[deby]

I don't know which way to go.

But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go.

Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me.

Pam

Hi Pam,

I am in the same dilemma as you. In that I don't know which way to go. I prefer natural means, but when we got the pandas diagnosis it was by a conventional pandas doctor so we started the antibiotics that day. My daughter is 12. She is severe. She also would not be able to attend school. Fortunately we homeschool. You are lucky that you have an integrative doctor that knows pandas. Our naturopath and integrative MD are only vaguely familiar with it. Both advise to stay the course (with antibiotics) and even support steriod burst (though we are not likely...reserving that as a last resort) We are doing natural remedies along with antibiotics. Fortunately, our pandas doctor is natural remedy friendly and feels our daughter is on good supplements. You do not have to be restricted to the doctors in your area. There are people on the board who drive out of state to see a pandas doctor. Did you check the list of pandas doctors? The author of saving sammy also has a list of doctors. Dr. Nancy Mullan of Burbank, CA does natural remedies she told me that the success rate is better than conventional medications. I sent her an e-mail and she called me. She said that she would start with gut work. That is what we are doing. I always say go with your gut, though, in this situation I feel my intuition is affected by my fear... Anyway, I wanted to let you know that you are not restricted to natural verses conventional and that you are not restricted to the doctors in your area. (None of the pandas doctors in our area accept insurance anyway.)

May

Hi Parent4eyes, did you treat your child with Dr. Nancy Mullan ?what is your opinion of her? We live in Woodland Hills and I'm trying to find a PANDAS Dr. that also is open to check other connections as allergies/environmental that could affect the immune system.

Thanks.

[matis_mom]

Hi Pam,

So sorry to hear what your daughter is going through. My son is younger and had a lot of the same symptoms, although not as severe. So from your description in would agree, she probably does have PANDAS.

I just felt I had to reply to your post, since we also first found out about PANDAS through a holistic doc. They did prescribe some antibiotics, but very low dose, and we saw improvement in the physical arena but not much relief of OCD/anxiety. Each month we kept going back and noticing the improvement in energy and overall health, but the anxiety was still there. So they recommended we consult a psychiatrist for some Lamictil... At that point we thought, before taking him to a psychiatrist, we would much rather take him to a neurologist. The neurologist prescribed much stronger antibiotics (Augmentin 875, then upped to Augmentin XR, both twice a day for a 80lb boy), and we started seeing some very good progress. She also prescribed steroids, and it was a very hard decision for us. The holistic doctor was totally against it, they said it was going to back fire on us, etc. But the way Dr. Latimer put it is that at their young age, even a month is too much time to waste. It's a month of their childhood/adolescence they won't get back, it's a month of suffering. So, we went ahead and tried it and by the end of the month he was 100% better. We've had set backs due to strep exposure, but still do not regret having switched to a more aggresive treatment.

As far as prophylactic antibiotics vs. IVIG, I don't think it's one OR the other. I believe most people on this forum are on prophylactic antibiotics, that's the first line of treatment. And, at least to begin with, you need a strong dose. Then some people move on to IVIG if antibiotics alone are not helping enough.

So I know it's a hard decision to make. Believe me, I am not happy he has to take two horse-pill antibiotics each day, I am not fond of steroids, but after I while you come to terms with the fact that this is what he needs right now. We are going to pursue a naturopath to see if we can "fix" the immune system, but that is a very long road, and I don't want to wait that long to get my child back. I am not sure there are any studies out there proving that the holistic approach can indeed overturn autoimmune diseases (I'd love to see one if there is such a thing!). On the other hand, Dr. Latimer has treated many PANDAS patients successfully.

So again, it's a very personal decision, but I thought I would share our personal experience.

 

Isabel