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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. As of right now I have him on just two and he is doing ok. I also am doing probiotics and milk thistle. I have pretty much confirmed it is the Bactrim. I am going to get in touch with the office tomorrow, but will request that we stick to this for a week and then maybe try the Bactrim back in next week. If it causes headaches again we are going to have to find something else, or just stop it, because he starts school in a couple of weeks and I can't send him with the awful headaches. Motrin helps, but he says his head still feels "heavy."
  11. Ok, all good to know, thank you, all!! I am backing off to starting with just two antibiotics for now. I have him back on the augmentin and gave him the azyth today. I wondered if it could be the Bactrim. so I think we will start slow like this for a few days. I will call on Monday and mention the headaches and tell them what I am doing. Or write to the nurses, rather. that seems to be the only way I hear back about anything. I am going to get a few things for him like the milk thistle, some epson salts and up his probiotics, I think. We will go from there. If it keeps on as bad as it was today, I will take it back down to just one and talk to Dr. B again. I did tell him I was only willing to try this for 6 weeks, when we go back, and see how it goes. If there is no positive change of any kind I do not want to keep him on numerous antibiotics. He does a bit better on just augmentin, so there is some benefit. The tics stay away. But I think we will be seeing the LLMD in a couple of months once we clear this experiment. Poor kids of ours, on so many medications and supplements.
  12. Dr. B put Ian on augmentin, azyth and bactrim. he took the first dose of all of it yesterday (pills, he can swallow them easily). He complained later in the day of feeling dizzy a little, and woke up last night with a headache. His stomach seems to feel ok (that was a concern). Now I am concerned he is having side effects from all of this? Dr. B is closed today, so not sure if I should stop them and just go back to the augmentin until I can talk to them or what. Thoughts? The headache kept him awake a couple of hours last night.
  13. It is so confusing. With the negative lyme test, twice, I just assume we shouldn't push forward with lyme. But maybe we should. We will try this trio of antibiotics and see how he does. I do also think I will push the yeast up the list. I am sure Dr. B won't really mind that. I am curious on the outcome of this trio, and am excited to get started. Picking up the scripts later so we should start tomorrow. Can anyone tell me is the augmentin, zyth. and bactrim a standard lyme protocol? there are so many combos, I get so confused.
  14. Interesting. I will be curious to see how this new combination affects Ian. At this point I am really interesting in finding the pieces of the puzzle. Ian is doing ok right now with great help from the therapist as far as coping tools. So I am able to at least take a deep breath now and again. But it is surely a big puzzle for so many of us. A lyme doctor is in our horizon too, I do believe.
  15. I guess I should also say that Ian doesn't seem to have side effects that are typical with that, like night sweats and stretch marks. So I am not putting much stock into this being what the issue is.
  16. We went down to see Dr. B today, after stopping IVIG after the 8th. Dr. Bs next step is to retest for Bartonella and is trying Ian on a 3 antibiotic protocol for 6 weeks. He was tested for this, along with other co-infections through Igenex last year, all were negative. Dr. B said something about the Igenex isn't always great for bartonella testing, not sure what he meant exactly. But he is retesting for that. He is putting him on Augmenten, Zyth. and Bactrum. I don't love the idea of all those antibiotics, and I am not sure Ian will tolerate them. But I am willing to try for the 6 weeks. He has an idea of the next few things we will try if this doesn't do much. Next would be wheat free diet, then dye free diet, then yeast treatment. All done individually. I don't know. I am feeling overwhelmed again. i would honestly wonder if Ian didn't have regular OCD with a side of tics if this hadn't started right after strep. I keep thinking about seeing an integrative Dr. that also treats lyme, here locally. But I don't want to do more than one thing at a time. So I guess we will maybe see how this goes and try Dr. Bs ideas through the fall. If we are not getting anywhere we are going to have to go the local route with the doctor here. (Kara, I will call you this week!). The prozac is helping a bit, and I am very thrilled with our therapist currently. But when Ian goes off of Augmentin (we ran out for a few days, crossed signals for refill) he gets breakthrough vocal tics. Not much, but I know what they are. I have tested it a few times in the last couple of months. So I know there is something there. Anyway, so I am curious to learn more about bartonella. We won't know the results for a couple of weeks from that. But it is related to lyme, no? Or is it just associated with ticks, like lyme? Does anyone have experience with it, and if so, what treatment did you receive? On the plus side Dr. B suggested testing Ian for food allergies (he has had a dairy allergy since he was born) so we did all of them today! He was due, it has been two years. I was so happy to get that done in one day, instead of having to take him locally another afternoon. Skin tests were negative for all food allergies. Blood test for dairy will be back in a few days. More confusion. But I still feel like we are peeling away the onion skin. the prozac has helped him stabilize a little bit in order to focus on some therapy. So that has been very helpful. It has also improved his mood a bit, so he is easier to deal with.
  17. Thanks, Nancy and Powwow! I know therapy isn't a cure. But I think the tools will be very helpful.. It also helps me cope, to be honest. It gives me tools and responses to the OCD that help my sanity. I think I found the best child psychologist that deals with OCD in metrowest MA, to be honest. There are not many out here that work with just kids. There are more in the state, but most are a hike and this is a 15 minute drive. It also makes me feel like things may eventually look up, gives me some hope. at the very least it is a small positive in the PANDAS puzzle.
  18. we had our 3rd session with Ian's new therapist today. What a difference over the first therapist we tried. the difference is amazing. We were on a waiting list for 10 months for this one. I can see why. She is very good. It will still certainly be a long road ahead of us. And being only 9, it is hard for Ian to understand and focus sometimes. But I can tell that he will certainly gain as many skills as he can to fight the OCD at this age from this therapist. I am very pleased! So if you have tried a therapist and stopped because you didn't think it was working, maybe don't give up and try another one. Lisa
  19. Thanks! I don't think we will be doing any more IVIGs since we have already done 9. So I am not sure what help I can get for Ian locally at MGH. But the good news is I finally did get an appointment with Dr. B for Aug. 13th. So we will be talking about what to do going forward. I think the receptionist though I was a new patient last week, she seemed in a much better mood today, too. lol Maybe it was a tough day. Anyway, so I am feeling better about that. I also think we are going to make an appointment with a local integrative doctor that I have kept in the back of my mind for months now as we wait to see our next move.
  20. Yep, in Metrowest. We have United for insurance. I may look into some of these soon. I still have yet to hear back from Dr. B or even get an appointment. No one called back like they said they would. I am going to have to call back on Monday. This is on our back burner for the future once Ian stabilizes a little bit. I can see how helpful it would be.
  21. I have a friend who's son has asbergers. She was asking for any links or info that are in a summary form for family and friends that do not understand why her son is the way the is. I know there are books about it, etc. But she wants something ready to give to people that explain her son, in a nutshell. THanks so much for any info! Lisa
  22. I don't have Aetna but I have heard that Dr. B is great at getting approval. If anyone can do it, I imagine he could, unless the insurance just won't. We had to switch to United to get ours covered and then there were no issues. I am sorry your having a tough time, insurance can be a nightmare. I hope someone else that knows more will chime in.
  23. No, we haven't. I need the doctor to take insurance, so maybe that is why? I thought someone locally didn't take insurance that was treating, but I forget which one. I also though Dr. Jenike didn't treat children? I haven't researched a whole bunch lately, but please enlighten me if I am wrong. yes it comes back. Depends on quick you get illnesses under control. IF you let them go and the cascade starts back up then more steroids are needed. If I catch things quickly I can go years without needing anything. I gave up on PANDAS " specialists" a long time ago. They are so overworked. You see I have extremely severe tics, so I have to go to a neurologist. They basically get the steroid tic connection and that's that. Ah, ok. It is something I will ask about. I will add it to the list of things I look into. That is good it has helped you! Ian doesn't have many tics currently (antibiotics seem to stop them) but his OCD is still the main issue.
  24. No, we haven't. I need the doctor to take insurance, so maybe that is why? I thought someone locally didn't take insurance that was treating, but I forget which one. I also though Dr. Jenike didn't treat children? I haven't researched a whole bunch lately, but please enlighten me if I am wrong.
  25. So this high dose IV steroid treatment is suppose to just halt it? Does it come back? I have not heard anything about it.
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