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Everything posted by mountainmom

  1. I was very excited to find this site with interviews with PANDAS/PANS specialists. It is informative and shows a variety of approaches to treatment. I'm curious about something that Dr. Kovacevic says and if this is reflective of experiences of those on this board who have older children/been in this for a while. He seems to feel that IVIG is necessary to completely eradicate PANDAS. He states that antibiotics and steroids can send symptoms into remission, but that without IVIG, symptoms will return at some point. I'm curious if this holds true for you? He also believes that the IVIG is generally only effective during a certain age window. Have you found this to be true? Thank you for your thoughts.
  2. Dr. K Interview, IVIG & Question

    abdualpt, this is what I found when I checked the 2017 guidelines: I interpreted to mean that in extreme cases, IVIG is helpful, not that it is necessary to recovery. Am I misreading? Can you tell me where you found the info that you cited? Thanks so much. Just trying to figure out what our next steps should be.
  3. zoloft - good/bad?

    Bobh, can you share the paper? Do you still have the link or info? Thank you!
  4. Need Help

    We’ve been diagnosed PANS and treating since August (Lyme, Babesia, Bartonella). Immediately after starting antibiotics, saw marked improvement in symptoms despite DS (7) not being currently in a flare. However, in December he began to flare. We had a two week reprieve in February when he got the flu and has been flaring since. This flare has very different symptoms from previous flares. DS is often unable to eat because he says food tastes wrong, thinks it’s dirty, contaminated or poisoned. This seems to be getting worse. He Is very anxious and often scared of everyday objects. Our world is getting smaller and smaller. My questions are, what else can we do apart from watch his symptoms worsen? His not eating is getting worse, is there a way to stop this? What can I do? What do we do if it keeps getting worse? We see three different doctors- all of whom are not helpful. Is that because there isn’t anything that can be done? Please help! Do all kids get better at some point? I feel like this will never end. Thank you.
  5. Need Help

    bobh- there isn't an obvious infection. He doesn't seem sick. I think his sinuses are fine (maybe it's the Bartonella?). We are using Aleve around the clock. It does take the edge off. Thank you for sharing the link to the research on baking soda. I will see if he will tolerate that.
  6. Need Help

    Thanks for your replies. My son is currently on antibiotics. I think that we need to switch them- as they don't appear to be helping. MomwithOCDSon, would the flu still be active in his system? We did anti-virals right away when he the flu was active. Our Llmd still feels the Bartonella is active- based on his symptoms- though I don't really understand how they can tell. I'm going to talk to our Llmd about steroids. I have heard mixed things about steroids when Lyme is a factor.... We are on our third therapist and haven't found any to be helpful at all thus far. I'm hoping our new one is better able to help as she works with a lot of PANS kids. It's just so frustrating. We are almost three months from when he had the flu and he is getting worse! He can't go to sleep. He's afraid of his blankets, his bed, his pillow, the floor. LNN, I will take a look at the Maudsley Approach- thank you. So grateful for this board and all of you.
  7. Dr. K Interview, IVIG & Question

    bobh, Here is the link to the survey. I think it had about 1,400 respondents. It is interesting to look at, though, I think they presented some of the information in a misleading format. For example, when they figured out the percentages regrading the success of different medical interventions, they included the N/A numbers in the percentages. Thus, it appears that some treatments (especially those less commonly used, like IVIG) are less effective than they really are. Let me know what you think. I think page 15 has the results of puberty and remittance of symptoms....
  8. Bad headaches at Night, suggestions?

    Hi, I have melatonin drops. They have a pretty awful flavor, but I’m not sure it’s the melatonin or something added. We have a terrible time with sleep- both going to bed and staying asleep. Magnesium about half an hour before bed seems to help a little. So does a bath with Epsom salts. Aleve at night seems to help my guy. The most helpful thing we tried was GABA which worked like magic for about two months and just stopped. Now we are trying CBD oil. We will see if that helps. Best of luck. Hope this helps!
  9. Dr. K Interview, IVIG & Question

    Bobh, Thanks for your insights. I was feeling pretty disheartened after reading that and the most recent, big survey from pandas parents network (in which it seemed that puberty doesn’t make a difference for most kids). Good to hear that for some it has. I was starting to think that was just a rumor. Since starting treatment we had three good months followed by five months of flaring. We are still in it. Just in need of some hope....
  10. Bartonella

    I’m hoping someone experienced with Bartonella can help me with this. My DS has continued to flare despite beginning treatment in August for Lyme, Bartonella & Babesia/PANS. Our Llmd says Bartonella treatment is particularly lengthy and believes that this is what we are continuing to deal with. Can anyone speak to how long treatment took them for Bartonella? Since the beginning of December, we’ve had two good weeks. I miss my boy. Thank you.
  11. Refusing to bathe, ideas?

    I’m sure you’ve tried- but washing without soap? Or letting him have more control and picking out a new special soap at the store?
  12. Ibuprofen question

    So sorry, I said turmeric, but meant curcumin (lack of sleep!). My 7 year old takes one cap morning and night.
  13. Ibuprofen question

    My 7 and a half year old was on Aleve (lasts longer than IBuprofen) once pill in the morning and one at night. It was very helpful. We saw reduced OCD symptoms. However, we recently switched to turmeric capsules which we give one morning and one night (as per our llmd). Which seems to work equally well. Hope this helps.
  14. Discipline question

    My son is the same age. I struggle with this, too. I did find the book "The Exlosive Child" that MomWithOCDSon mentions above to be helpful. It helped us to come up with strategies to help my son before we got to the meltdowns, made him feel more in control and also helped me to see which things were really important. It didn't solve everything of course, but it was helpful. Good luck!
  15. Discipline question

    Lyentzer, how old is your son? I struggle with this balance at times.
  16. Thank you both for your responses. My DS does see a therapist, but unfortunately haven't found them to be at all helpful thus far. My son really doesn't like to talk about his OCD and anxiety. However, most of our CBT work has been around anxiety-maybe it will be more helpful when it comes to the OCD. Can you recommend a good book for parents on OCD? It seems more helpful sometimes for me to read and try things at home than try via our therapist. I'm so grateful for your sharing your experiences. Thank you.
  17. Hi, I've posted before about my son, 7 who has had PANS since 4 (Lyme, Bartonella, etc.,) but was only diagnosed this August. I'm hoping if I share someone will have some insight. This board is so full of knowledgeable, kind people. My son has always flared in the winter months, usually Jan-May. In the past his symptoms were ADHD, mild tics, movement issues, mild OCD, difficulty remember things, what looked like absence seizures, severe anxiety, panic attacks, hoarding, depression, intrusive thoughts, separation anxiety and severe sleep issues. However, this summer, though he did improve in some ways (his anxiety improved), he never got back to his baseline. In August, he tested positive for Lyme & co and was diagnosed with PANS and we began treatment with antibiotics and supplements. We also took him off gluten at the urging of our Llmd after genetic test revealed he had a good chance of being Celiac. We saw immediate improvement. For the first time in years, my boy was back. It was amazing, but, short-lived. In November things were a bit bumpy and then December 1st he had a big flare that continued through most of February. However, symptoms were different then they'd been in the past. He had a lot more OCD which mostly looked like tapping his body and walls, etc. He was fairly anxious, though not as severe as in the past (no panic attacks). Our doctor took him off all medication for two weeks to see if it would help in January. It didn't help. Things got worse and so he was put on new antibiotics (Amoxcicillyn and Bactrim). They seemed to help. He had two great weeks in February and things seemed to be better. He was happy again, playing with friends, etc. Then about a week ago, panic attacks began again and now, suddenly, he won't drink anything unless I take a sip first. If I cook, he wants to watch me cook to make sure it will be "safe" for him to eat. He won't eat if he accidentally touches his food with his fingers because they might have touched his hair or the floor. He's never had any issues with contamination/eating issues before. This has all happened so quickly, and I'm so scared it is going to get worse. Two and a half weeks before this most recent flare began, he had the flu. Could that be the cause of this- or is it too long in the past to be the cause? Why would this flare be so different from past flares (he still seems mostly calm and happy)? Why is he still flaring? Shouldn't he be getting better with a diagnosis and prophylactic antibiotics? Please tell me if there is something I missing. Feeling desperate and overwhelmed. Thank you.
  18. Trying to discover what is causing flares and observe any possible patterns. How long after illness does your child flare? Does anyone know of a study that documents average time after? It would be helpful to determine definitively that being sick results in a flare, or is it just that we are riding the waves of Lyme disease/Bartonella.... So tired of all this. Every time I feel like I’m getting somewhere it’s two steps back.
  19. Dr. T says symptoms vary by age of onset

    Hi Clementine, That was not our experience. DS's onset was at age 4 (diagnosed 7). His main symptom, originally, was extreme separation anxiety. In retrospect there were other symptoms present such as movement issues, possible OCD (difficult to assess in a 4 year old), ADHD symptoms, depressed mood, retreating, sleep issues, etc. I wonder how much is dependent on original trigger (in our case Lyme & co) or if that has on effect on symptoms. I'm curious what other people's experiences are....
  20. Hi Sirena- what makes you say that autoimmunity is in play, how can you tell? He is off gluten because genetic tests indicated that he should be. We haven't done IVIG- or really even talked about it with our doctor.
  21. Hoping someone wiser can help. Some backstory: My son has had PANS since 2014 but was only diagnosed, and began treatment, this August. He tested positive for Bartonella, Babesia, Ehrlichiosis and some evidence of Lyme exposure. Original treatment was really successful and we had two incredible months with him before he flared again December. About a month ago, our doctor took him off all antibiotics to see if he would improve. He didn't. Things got worse. He's now been on Amoxycillin and Bactrim for about a month and he was improving. However, on Monday, we started him on iron supplements, vitamin c, and GABA. Incredibly, he slept through the night for two of the last four nights (for which I am so, so grateful). However, beginning on Wednesday, I saw a resurgence of some symptoms: OCD, mood lability, slowness/distractibility. This afternoon and tonight, he had several panic attacks (The first in quite some time). So, what I'm wondering is, could the new supplements be causing the resurgence of symptoms? Or are the medications not working, or is this a new flare? How do I even know? Lots of kids are sick at school.... Feeling so frustrated trying to tease out what's going on and how to help him. Please share if you have any thoughts. Grateful to you all.
  22. Desperate for Sleep

    Just wanted to update in case this might be helpful to anyone else. Llmd started my son on GABA supplements and for the first time in years, he’s been sleeping through the night! I know the is no one size fits all answers when it comes to PANDAS/PANS, but, for what it’s worth, the GABA has been life changing (even in this short time). O_bear, we also mainly have had trouble in the night, or the most trouble, I should say. If you’re interested, I can let you know the name of the supplement we are using. Best of luck to you. Not sleeping is the worst.
  23. Really hoping someone has some advice. My son (7) is in a flare and he's been waking up two hours or more each night- plus additional waking. Last night he was up for four hours. I'm a single mom and so this all falls on me. I can't function at work or at home. Feeling desperate. Sleep has always been an issue but this time it's without the anxiety of past flares (so that's a relief). But, he literally just lies in bed twitching. His legs move almost constantly. In the past we've tried melatonin, Benadryl, lavender foot rubs, chamomile/melatonin blend. We currently do epsom salt baths, magnesium, a guided meditation- and nothing is helping. I don't think I can continue this way. Any advice?
  24. Thank you all for your thoughts. DS now has the flu, so it’s hard to tell what is happening and after, I’m imagining, it will be even harder to tell what’s going on. I’m so frustrated. I feel like I’ll never figure out what’s going on- what’s causing what. Bws1565, I hadn’t ever thought about that. I will have to pay more attention. Thank you.