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Posts posted by MountainMom

  1. We just completed IEP process for my DS8. My rather basic understanding is that an IEP is preferable for long term situations. It’s the accommodations that were more important to me m- that they be in place permanently so that they are there when he needs them. Much of the accommodations above plus typing, speech to text and/or a scribe. Is your granddaughter taking Aleve? It’s not a cute, but helps us. Also epsom salt baths.

  2. What your specialist said makes sense to me in light that my DS’s PANS symptoms got worse each year after onset. If we’d caught it earlier and begun prophylactic antibiotics, perhaps he wouldn’t have continued to get worse to the point where it doesn’t seem to respond seem to respond to antibiotics at all. It’s so hard because it seems like each kid is different, but if I could go back and begin antibiotics during his first flare- of course knowing what I know now- I would. And I’d keep him on them for a long time.

  3. My son (8yrs old) is beginning his fifth year with PANS (Lyme, etc). However, it took us four years to diagnose and he’s been treated with antibiotics for the past year.  Each year he began flaring in December/January- until mid summer. Each year by August he’s like a different child- until the next flare begins. This past year, with antibiotics, things were no better. There were new symptoms- fears of contamination and poisoning, and more. 

    Just before school started this year he had a cold and he began “evening” for the first time since last winter. His fears have begun to return. He also has says that he gets invisible arrows in his body and has to pull them out and “throw” them away. I often see him doing invisible things. I’m terrified of what we have in store this winter. 

    Why doesn’t he get better with all the supports he has in place- antibiotics, etc? What do we do next? What are we missing? Does this ever end?? I feel like I get one month a year with my child and it breaks my heart.

    Thank you for your thoughts,

  4. Sorry for the slow response. He tested positive for multiple different types of Bartonella. He's been on antibiotics for almost a year.  He’s s currently on Bactrim and  Amoxicillin. Plus currently on vitamin D, CBD oil, Nystatin for yeast, milk thistle for the liver, iron, and Aleve. His immune system seems better this year, post treatment. Summer is always much easier for him. Currently, his OCD, anxiety, etc is much better. He just has one residual tic. But, otherwise as he has for the past four summers, he has returned to himself.

    If you have insights, please share!

  5. Hi Jasperilla, 

    I’m so sorry you’re going through this. Does your daughter have separation anxiety? My son (PANS triggered by Lyme&co infections), had that before I really understood/recognized his OCD symptoms. Also, the OCD was more obvious this last year than in previous flares. Do your daughter’s symptoms flare?   For us that was helpful in diagnosis- his symptoms came and went together. You asked about OCD symptoms that are less obvious. Her are some that I saw at different times- unable to throw anything away including bits of garbage, obsessively collecting sticks (we had buckets of them everywhere), tapping different places on his body or on objects to “even out”, asking lots of questions, for example, “Have you ever touched your shoe and then your lip?”, unable to use his hands to eat, inflexibility around changes in routines (we have to do things in the exact same way everytime, sit in same spots, etc), confessing thoughts, worry that he might not believe the things he says (for example, I’m not sure if I really am sorry).

    Hope this helps a bit. 

  6. Curious if anyone else has this issue. My son has flared every December/January through May/June for the past four years. He was positive for Babesia (and Lyme, Bartonella, etc.,.). Not sure if it is due to Babesia, as this poster had queried, or something else. Do others without allergies seem to flare in this- or any- cyclical fashion? I wonder if we moved to a different climate, would he stop flaring? 

    Curious.  Thanks!

  7. Hi lost99- Gaba really helped my son for a while until his symptoms shifted and his flare worsened. Then we switched him to CBD oil- which also was very helpful and he continues to take now. It really helps with his anxiety in the evenings.  I wish I could tell you which GABA supplement we used and how much, but we are away for the month. When I get home in August, I will update. I know others on here have had positive results with it. Maybe try searching the forum's archive in the the interim? We didn't wean him on or off. I just started giving him one pill with dinner and he immediately began (for the first time in years) sleeping through the night. When we switched to CBD oil, I just stopped the GABA. I hope this helps. So sorry you are going through this.

  8. 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. 

  9. 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. 

  10. 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.

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