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mountainmom

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About mountainmom

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  1. 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.
  2. zoloft - good/bad?

    Bobh, can you share the paper? Do you still have the link or info? Thank you!
  3. 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.
  4. 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.
  5. 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.
  6. 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....
  7. 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!
  8. 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....
  9. 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.
  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!
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