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Everything posted by MountainMom

  1. 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....
  2. 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!
  3. 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....
  4. 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.
  5. 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.
  6. 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?
  7. So sorry, I said turmeric, but meant curcumin (lack of sleep!). My 7 year old takes one cap morning and night.
  8. 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.
  9. 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!
  10. Lyentzer, how old is your son? I struggle with this balance at times.
  11. 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.
  12. 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.
  13. 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.
  14. 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....
  15. 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.
  16. 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.
  17. 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.
  18. SuzanneR, Thank you so much for you response. I'm giving him 1 capsule of GABA (470mg) prior to bedtime. So, when he was struggling last night, he hadn't had any in about 24 hours.... I'm not sure how long it would stay in his system. He isn't currently taking Theanine. But, perhaps I should talk to the doctor about adding it? We will be adding in Milk Thistle to support his liver this week. Tests showed that his liver enzymes (AST) were high. Other than that we aren't doing anything for detox besides epsom salt baths. I hadn't thought about yeast flare. What are the signs? Thank you, thank you, for you help! Watching him have panic attacks kills me.
  19. 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.
  20. bws1565, thanks for your response. We haven't had his corisol levels checked- but he isn't tired during the day- or doesn't appear to be. I've been thinking about a daylight lamp. Have you found them helpful? Thanks for your input!
  21. Sadly, we are back to not sleeping, though his OCD continues to be reduced. If anyone has any sort of magical answer, I’d really love to hear it.
  22. I agree with bobh. Also, many, many children have traumas and don’t have PANS.
  23. Does anyone know if, besides during an active infection, and prophylacticly, do antibiotics serve a purpose during a flare? Are there any studies that have explored this? Thank you.
  24. MomWithOCDSon, My DS (7) was on a combo of Zithromax/Malarone for Bartonella, Babesia, and Lyme beginning in August. The antibiotics initially made a huge difference, relieving lingering PANS symptoms- I felt that for the first time in years I had my son back. However, he began flaring in December, despite the antibiotics. This is what caused the doctor to stop the antibiotics, to see if things would improve. However, they did not and the sleep problems escalated. This is when he was put on a new antibiotic (Arithromyacin). Which so (fingers crossed) seems to be helping. My guess is that it is helping whatever was the cause of the most recent flare. Not sure it is a solution- but I greatly appreciate the temporary reprieve!
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