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Everything posted by SEAMom

  1. I live in the Pacific Northwest and it is so hazy and smoky due to all the forest fires in the state that what should be a blue sunny day is a white/gray day of haze. It is so smoky that at times I feel like I can smell the smoke yet the closest fire is at least a hundred miles or more a way. My son is struggling so badly today. His anxiety is off the charts. Do we think this smoke could trigger an immune reaction? Anyone else dealing with this problem?
  2. My DS15 tried CBD capsules this week for the first time. 25 mg capsules 4x a day. This was prescribed by his doc in addition to one LDN capsule at night. We were trying these to help taper him off the prednisone. When he started a prednisone taper 2.5 weeks ago he had amazing results and was almost symptom free within 24 hours. We had 10 blissful days symptom free. I got my child back! Once his dose was cut by 60% most of his symptoms came back. We increased his prednisone a little bit to stabilize him again which worked. But We then added the CBD and LDN to see if we could taper the predinsone more. In the last 5 days since starting the CBD and LDN he is much worse. He has been extremely tired and nauseous and light headed. His anxiety has been off the charts again (his worst PANDAS symptom). Today I cut the CBD and will not give him the LDN. The two do not seem to have helped at all. We are just trying to wait this out as his doctor is working with our insurance to get IVIG approved. I gave him another 5mg of prednisone today but I have seen no improvement but he does not seem as tired and no nausea or light headed. Has anyone had these results with CBD or LDN? I think I read if you have a CBS mutation that CBD may not be a good option because of the sulpha in it? I would love some feedback. Thanks!!
  3. We have been advised by our doctor to not enroll my DS15 in high school this fall and postpone public high school until 2nd semester. Our doc says that being exposed to all the colds/viruses in a large school will just keep him in a flare as we try and get him well and calm/retrain his immune system. Our doctor also does not think he could manage more than a half day of school right now. Our school district only offers two hours of in home tutoring a week for kids who are too sick to go to school, which makes it near impossible to be home and stay up in school. I find this so maddening especially when I hear that some schools give two hours per day! We have a small academy where he could take 4 core classes and at least not get too behind and then hopefully start second semester in January. Does this seem extreme and like an over protective plan?? Do I really need to isolate my DS so much? Would love to hear your experience with recovery and school. Thanks!
  4. I agree. Fatigue is not a typical side effect of steroids. They often give you extra energy and in high doses can make you hungry, have strong mood swings and even make it hard to sleep so they are best taken in the morning.
  5. My DS15 had his first HPV vaccination last fall. A few days later he was mysteriously sick for a week. He started with a fever and then he was just achy for the next 5-6 days. I just thought he had a flu bug. On March 4th this spring he had his 2nd HPV vaccine. Then on March 7th he started his very sudden onset of symptoms that was the beginning of the nightmare of PANS we have been living with ever since. There is no doubt in my mind that the HPV shot played a major role in my son's illness. He may have had an infection already starting but the shot created the perfect storm and irritated his immune system to the point of malfunction. Everyone parent I know who has a child I tell them NO HPV!!!
  6. I have been giving my DS15 naproxen for the past 3 months and I think it has been helpful. On the days he did not take it he was much more symptomatic. Naproxen and ibuprofen are both NSAIDs but naproxen is just two times a day dose and is easier. I gave it the same time as the the abx. Celebrex and meloxican are both prescription NSAIDS and I think are typically sre a stronger dose than over the counter NSAIDS. I think you just have to find out which one works best for you.
  7. Thank you all for the great feedback. My DS is moving from a private school to the public high school where we live. My DS missed the last three months of school/middle school this spring. His health is improving but I am still not sure if he will be well enough to attend high school in the fall. Sadly it appears that every district has different rules for "home hospital" - if the child is too sick to go to school. I have heard of districts of sending in a tutor for 10 hours a week. Our district gives the child only 2 hours!! I am not sure how they expect a child to keep up with only two hours of instruction. Regardless I know I need to get things moving if he is to have any accommodations in September. He is being treated by a neurologist, immunologist, psychiatrist, and pediatrician. They are all trying to work together but they are not quite on the same page. His diagnosis is not clear. However we did get his Cunningham Panel back which showed elevated antibodies so I know we are dealing with PANS/PANDAS - auto immune encephalitis, immune modulated encephalatrophy (the doctors all call it something different but it seems like it is pretty much the same thing - antibodies in the brain where they don't belong causing swelling, causing neuropsych symptoms). He has responded well to Augmentin the last 3 months. However he is starting to plateau. We are going to start prednisone in two weeks after he has an MRI. His symptoms have lessened quite a bit but he still has quite a bit of anxiety at times. The other thing that has not recovered from at all is his brain - when it comes to using it for problem solving, school work, math etc. He says everything gets really jumbled up. It is really hard for him to concentrate. For this reason alone I really think he needs an IEP. His brain is just not functioning the way it used to and school work is really difficult. Before he got sick he was extremely bright and school work was easy. I have heard suggestions of getting quality over quantity accommodations which I think would help. My daughter had a 504 plan in high school (she had juvenile arthritis) It was really difficult at times to get the teachers to all follow it. Fortunately her advisor often stepped in and was her advocate with the other teachers. It seems like with the IEP since you are assigned a case worker at the school that you would have more chance of it being enforced and the parent would not have to spend so much time harassing the school. When a child is in high school and misses multiple days of school it is really difficult to keep up and would be very helpful to have someone on the inside helping them navigate. I am in WA state. I live in a school district that has just one high school. The district is pretty responsive to I don't imagine it will be too difficult to get an IEP but who knows? I want to be prepared. Thanks for that last tip about the differences between the IEP and 504. If my DS does not get well soon than he may need an IEP so his school requirements are modified. The other thing to throw into this mess is that my DS suffered 3 concussions in 7th and 8th grade. With each one he had pretty significant cognitive delay for 4-5 weeks after each one but was able to fully recover (so we thought) but who knows how this is playing/adding to all this.
  8. My DS15 is starting high school in the fall. I need to get an IEP. My DS's doctor said she would sign any letter I give her requesting an IEP. Does anyone have one they used that was successful? Thanks!
  9. Thank you for the great feedback. We have a doctor appointment next week so I will get a letter so we can ask for an IEP right away. Great suggestions of what to ask for. There are things I would have never thought of like the locker and the no assemblies. The quality vs quantity is good too. This forum is so helpful. It is such a long hard road trying to navigate this. So nice to have some help! Thanks!
  10. My DS15 starts his freshman year of high school in September. His PANS started the beginning of March and we were lucky enough to figure it out and get him treated with abx by the end of April. He is still on Augmentin. He has made a ton of progress this past month. His symptoms have decreased about 90%. Since he missed three months of school we decided to try and get him back in a learning/school environment. We enrolled him in a video game development camp. This is something that HE wanted to do. It was his decision to go. After two days of camp he was unable to go back. His symptoms came back full force. Luckily it took only about 48 hours to recover back to where he was before the camp. Clearly even though his symptoms had decreased a great deal his BRAIN has not healed or recovered fully. Do we know how long this process could take??? Is it a good idea or bad idea to slowly introduce academic work now? He has math he needs to make up that he missed this spring or he will have to repeat Algebra 1. Can I slowly give him some of it over the summer? Or is it a bad idea while his brain is still healing? Do I need to get a 504 plan? or an IEP? What do I ask for? What would my child need? Parents of PANS/PANDAS kids who are in high school, what was there experience like? I really am terrified and want to plan ahead as much as I can. Would love to hear your advice, experiences! Thanks SEAMOM
  11. Thanks for all the great info. MomwithOCDson when your DS was on abx for two years was it at the full treatment dose? How did you wean him off? How slowly? I will check with our dr about the higher dose abx. He is 115 lbs so he is big enough. Did your son get well on abx alone?
  12. I need to hear some success stories. My DS15 is on Augmentin - 875 mg 2x a day. He started first on it 2 weeks (then off for 5 days and all his symptoms came back) and then back on Augmentin again for 45 days now. His symptoms had gone down dramatically but they are not totally gone. He was out of school this spring for 2.5 months. He starts his freshman year of high school in the fall. We thought it would be good to keep him in a computer camp (all day 9-4 pm) that he was already registered for that started this week. It is a two week camp. He made it through the first two days but the evenings at home were really difficult. Day three he was a total mess and he could not make it out of the house. Hoping tomorrow is better. Clearly the camp has is really challenging his health physically. Note, he really really wanted to go to the camp - it was his idea to go. How long should it take for for my DS to get well? How much time should I give the Augmentin to work? When would it be time to add the steroids to his treatment? Has anyone had success with just the steroids and antibiotics? I feel like everything I read seems like the steroids are just a placeholder until IVIG. How long do I wait to try and get IVIG as a treatment? I would love your feedback. I have 11 weeks until my DS starts his first day of high school. I pray that he can enter the doors of school healthy. The clock is ticking!
  13. This is really helpful. My ds after 11 days of augmentin started improving immensely for 3 days ( almost symptom free like before on his the 1st round of antibiotics) and then his symptom have come back and his anxiety is sky high - the only symptom that has not come back is his separation anxiety. Right now he wants to be by himself and he keeps pushing me away. So is this common for them to get better than worse and they detox on the abx? We have an appointment with Immunology at Children's in two weeks and my pediatrician thinks they will do the Cunningham panel then. I will be sure to push for it. We also have an appointment with Dr. G but it is not until the 3rd week in July! We are on the cancellation list so I hope something opens up soon. I am just so tired of waiting. It has been 11 weeks since the onset and we still don't have a diagnosis and I feel so helpless and my ds is just miserable.
  14. Thanks for all the great feed back. I just checked out that book too.
  15. I keep hearing about how fabulous the docs are MGH. If you are close enough to make it work I would. I am on the west coast and we have doctors that are recommending going out there for treatment. I would not wait. It could take a while to get in too. It is probably worth a call to find out.
  16. Thank you that link was helpful. I have been on that site but missed that OCD part. He definitely falls under the "worry about self harm and harm to others" section.
  17. We finally saw a top neurologist yesterday. He said my ds did not have PANDAS because his dnase titers where not high enough. I KNOW from everything I have read that he can still have PANDAS without elevated titers. My son has every PANDAS symptom except OCD and urinary issues. The doc did confirm he has chorea so I think he fits the PANDAS criteria. It is my understanding that he has to have OCD and or tics/choreiform movements plus some of the other long list of symptoms, but I have not read about any other patients who do not have OCD. Are there any of you out there? My ds does fixate on what ever activity he is interested to the point of obsession. He is using Star Wars as his current coping mechanism to handle his off the charts anxiety that is keeping him home bound out of school, but he does not have OCD rituals like excessive hand washing, etc type things. I guess I am looking for some assurance as I continue to press for this PANDAS diagnosis. My ds did show improvement with 14 days of augmentin. And when he went off the abx the symptoms came back! So he went back on augmentin 5 days later. I am just starting to see improvement now on his 9th day of augmentin. The neurologist said that said that the abx could not alleviate his symptoms because he did not have an active strep infection, and he said even if they did they would only treat the infection. From everything I have read I know this not to be true - that tons of kids have gotten better long after the strep infection was gone. The neurologist did want to test for almost a dozen other autoimmune diseases, and disorders that have chorea and anxiety as a symptom which could be helpful if I have it wrong and he does not have PANDAS. But I am still trusting my instinct and I am still thinking it is PANDAS. I am trying to get our pediatrician to test his dnase and aso again so we can see if anything as changed and also test for mycoplasma, herpes and mono. I would love any feed back from any of you parents who have been in the trenches much longer than me. Thanks!
  18. My 14 year son had his first PANDAS symptoms March 7th. He was put on a 14 day course of Augmentin. He improved significantly. Within 48 hours of stopping the antibiotics his symptoms came back. It took me 5 days to get his pediatrician to give him more Augmentin. She gave him 30 day Rx - 875 mg 2x a day. Can anyone help me with next step after that? Is 30 more days long enough? Should it be longer or should he go on a smaller dose for a while afterwards? I really need help with antibiotic doses and treatment guidelines. I am in Seattle and there are very few doctors who treat PANDAS here. I have an appointment with a specialist but we don't have an appointment until the end July. My pediatrician has been very cooperative in working with us and I think she actually believes that my son has PANDAS now after his symptoms came back after going off the Augmentin. But she does not really now how to treat PANDAS. She has just been going off of my recommendation. Unfortunately it has been 5 days since he went back on the Augmentin and we have seen little improvement. Any help with this is greatly appreciated!
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