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lmkmip67

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Everything posted by lmkmip67

  1. I am feeling this especially now. Especially since much of the PANDAS treatments out there are not helping Ian. I think some are thinking, "when will she just give up and realize the kid has OCD, Tourettes and ADHD?? Thankfully I think most of the doctors we are seeing, do realize there is something going on. His therapist did seem to try to break it to me gently that he indeed may have ADHD. I told her awesome! I can treat that! I kept saying, I hope that is all it is. Yet others on the outside, likely do think I am trying to find something medical, and roll their eyes when I say we trying yet another treatment, or diet, etc. My support system of friends (except my very best friends) is gone for this. I have a couple of friends that deal with other issues in their children and understand that this is difficult, they support me just knowing it is hard. If many of us could pin this on a mental illness, I bet we might. But the traditional treatments don't help our kids. So then what, we keep trying to find the right doctors to help. I am seeing it directly, that others on the outside do believe I should just accept the fact my kid has a mental illness. If I could just call this OCD or Tourettes, then I would know what I was dealing with. steroids don't take tourettes away. Antibiotics don't stop tourettes. Illness does not make true OCD flair like crazy. So yeah, we doctor shop. I agree with everyone here. I had to read through quickly. But I do think there is an outside view on what some PANDAS parents do to try to help their kid. I won't stop, I will keep looking. Because my gut says differently.
  2. His symptoms are some OCD, ODD, inattention and hyperactivity, anxiety, tics on occasion (I thought they were under control but I heard a couple crop up today). That is about it. The prozac is helping the OCD, his main issues right now are attitude, inability focus, hyperactivity and the occasional tic. The OCD is still there, but he is doing much better since our new therapist this summer. I tell her I want her to move in. lol
  3. Thank you! A lot of what you say makes sense to me. The ONLY improvement has been the tics stopping, but that happened RIGHT as we started antibiotics. HE has had break through tics on occasion, but he has also been on an antibiotic for two straight years. As far as the IVIG, nope, we have not seen ANY improvement with it. I have charged, numbering daily, each behavior issue broken down into compulsions, obsessions etc. there has been no change. The prozac has helped that the most. That was started just before his 2nd to last IVIG, so I am sure it was the prozac, not the IVIG as he had already had 6 HD IVIGS before that......with no impact at all. He is in great therapy right now with an awesome therapist and is making great headway with the OCD. We are working on some behavior modification now for the ADHD type symptoms as well. I also am thinking of an intensive program for him down the road, maybe next year, if we don't see enough gains with the weekly therapy. She is quite intense though, and he is well with it. There is a program in Minnesota we could do and stay with friends. So that is certainly on my list. i am also agree with stopping a lot of this and seeing where he is. we are going away next weekend, but I think after that I am going to stop the antibiotics totally for two weeks and see what pops up. If tics come back, we will journal it. I am also going to ask Dr. B about all of these things mentioned here in this thread and see what his reaction is. maybe it is time to at least check with another doctor. He is pretty thorough, but i know all Pandas doctors have different ideas since this is still so unregulated.
  4. I appreciate all of the ideas. I really do. I guess I am just feeling deflated at the moment. I wonder if I should see a different PANS doctor? Not sure. I am leaning toward a local doc that is an llmd and looks at other things too. I am on my iPad so will reply more tomorrow. I have a feeling the diet isn't going to make a difference here, since we didn't see a difference before. We will keep peeling away the onion.
  5. He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now.
  6. I know it won't be dairy for sure as he hasn't had dairy, up until a month ago, in his whole life. nothing has gotten worse since we introduced dairy a month ago. WE did a 3 month allergy diet 2 years ago (wheat, soy, dairy and preservative/dye free) , and it was during the height of his tics and OCD. It did nothing. Not saying I won't try it again, but I have to try one thing at a time. It is yeast this month, we will see how that goes. Maybe next month we will try gluten.....I open to trying things, but I honestly feel like we have tried just about everything....
  7. That has been suggested to us, too. But we have already tried that long ago when all of this first started and I saw nothing. He had a dairy allergy so was off dairy at that point already. Not saying I wouldn't try it again, but I just have a big feeling that it wouldn't fix the huge amount of problems I am still seeing.
  8. A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end. Lisa
  9. DS does not get the flu shot, never has. He used to be allergic to eggs, so couldn't anyway. But we just never did start once he outgrew the allergy. I do get the regular flu shot and will always continue to because I have very reactive asthma, when I get sick I literally can not breath. Not sure if he reacts to the regular one or not, I would doubt it since the virus is dead.
  10. Thanks,Kara! No rush!

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