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Megs_Mom

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Posts posted by Megs_Mom

  1. Nothing like a caring, supportive doctor..... <_<

     

     

    My son was on Augmentin when he got the pneumonia. My pediatrician gave me a little remark "See, this is what happens when on long term antibiotics. Antibiotic resistant pneumonia."

     

    OMG!! I would switch doctors. Wow, that makes me mad. I am usually kind of a calm person, and just hearing that makes me want to slug him. Let's at least keep the debate factual, not abusive and fear based, condescending, and just plain mean. Like we don't already worry in our hearts every day.

     

    Vickie, I still hear biaxin for myco, just short term use. Would love to hear an update from someone using?

  2. I have to say my daughters behavior is out of control. I can't reason with her, all she does its whine and cry meltdowns for no reason. She its defiant and wow so fresh. Never learning from her mistakes.

    Three! That just sounds overwhelming & I am not in your house. So sorry.

     

    Have you read aboot all the "signs of OCD" in a young child? What seems like it has no reason, is irrational or defiant or even fresh, may very well be because she is "listening to the urgency of OCD" rather than to you. Here is an old post where parents put together some examples: http://www.latitudes.org/forums/index.php?showtopic=6153&st=0&p=47369&fromsearch=1entry47369.

     

    You may find ERP tools helpful in your home, while you continue to search for the right medical answers to get to remission. Maybe start with the book "what to do if your brain gets stuck". It's not a cure, just a tool to help keep things under control as much as possible.

  3. Wow, thanks for the explanation on ERP. That sounds like an awesome process that takes complete commitment and perseverance. PANDAS parents have to wear many hats. We are parents, scientist, doctors, nurses, psychiatrist, psychologist, teachers....where does it end? Oops, sorry, I almost started to whine.

    Yes! Oh, you made me laugh out loud. You know, I used to be really mad about what is demanded from a PANDAS parent somehow along the way, it became sort of normal feeling. But it is really not, and you have every right to whine as much as you like! You are already one of the hero moms that paved the way for the rest of us, so we all know you can do anything!!! That being said, Ill give you my 2 cents and you can take it or leave it! ;)

     

    I like Dr. Murphy. She would not be the one to do IVIG, but her group can get you the ERP therapy to help your daughter take medicine. And she can refer you if IVIG is necessary. And in the meantime, she does treat with anti-biotics. Maybe shell even have some good ideas about how to have your daughter take it! And LLM is right, they do have ERP via Skype available.

     

    I also like Mati's mom's idea of shots, if your child will do that then you could work on the medicine thing more at your own pace, rather than having it be under emergency circumstances.

     

    It sounds like your child has a true phobia of medication, in addition to having PANDAS. It may have started in a PANDAS episode or from OCD, but many children, even those without PANDAS phobias. My daughter used to be the best about blood tests, but now has a phobia about needles. We have worked on this one with some success, but it is harder to be consistent on this one, and I will be honest I dread it with every bone in my body! So while I have done ERP till I often feel I know it in my soul, I have my limitations.

     

    Now that I have been honest about that, Ill tell you that my worry about PANDAS is that I fear it is truly an autoimmune illness, and that my child may have it for life. Hope not, pray not but fear and therefore act like this is true. Therefore, she will have to manage this illness beyond me, and the more tools I give her everyday to do that, the better. The longer we have to practice, so that those tools are second nature to her when she is a teen and an adult, the better off she hopefully will be. I look at this similarly to a parent of a child with mild to moderate autism its my job to give her every tool for living in the world that I can. I don't think you can get "beyond the flumist" - I think it triggered an autoimmune response, and now you have to treat that. This may be "easy" with abx, or harder with IVIG. But the response can be slowed, and sometimes it calms at puberty, but clearly not all the time.

     

    My daughter also feared medication; she had severe contamination OCD, and could freak out about anything you could imagine regarding the medicine (right type, amount, what was in it, side effects, where did it come from, could it make her sick, taste, wrong time, who mixed it, who touched it, who poured it, whatever). But clearly, medication is critical to staying healthy in this illness, so we prioritized this as #1 to overcome.

     

    Since you are still a few weeks from asking her to take medicine, you have a little time to do this, versus what we had to do. I would strongly suggest reading a book with her, like what to do if your brain gets stuck or another in that series, and then starting an ERP program with her. If you can quickly find a local therapist to do this with you, it would be so much better (if they are good!), but if not, you could do this at home if you want.

     

    The first step can be to disassociate the fear of medicine from your child. So you may say something like I know how brave YOU are, so I know you can do this. Lets give a name to the monster/fairy/meanie that wants you not to be able to do this. What do you want to call him? Oh, the meannie head? Ok, lets draw pictures of him together. Since your child is only 7, clearly picturing the worry as something other than her own personality really helps, and gives you someone to talk mean to, while still being really kind and positive to your child. Suddenly you can say that meannie head is a real dummy isnt he? You are such a brave and strong girl. He wants you to think you cant put your finger in that medicine & lick it, but I know that you can.

    Secondly, it is helpful if you can build a little fear chart. We drew one when our daughter was 6, and put her own labels on it. We used a thermometer, and explained that worry is just like a fever. It can be really fine (a 1-3), it can make you feel like things are wrong, or getting bad 4-6, or it can make you feel like everything is wrong and totally bad 7-9. At a 10, you just want to run screaming around the house or hide under the bed. I usually start with explaining a really really good feeling. If I took this medicine, I would feel like it was so easy, like eating a piece of candy. Then I explain a really bad feeling if I took this medicine, I would hide under the bed and never talk to anyone ever again generally here, ask the child (in a calm moment) what the worst, triple worst thing is that could happen? Here is an example of my daughters fear thermometer:

     

    10 I'M GOING TO THROW UP!!!!!!!!!!!!

     

    9 WHAT AM I GOING TO DO ABOUT THIS!?!?

     

    8 Feeling really scared

     

    7 Not sure I can deal with it

     

    6 Getting Pretty Uncomfortable

     

    5 Really need to talk about it

     

    4 I can do it

     

    3 Not a big deal

     

    2 This is easy

     

    1 No problem!!!

     

    If we did it again today, it would look quite different. I carried copies of that thermometer with me everywhere we went. It became how we communicated about fear (so in our case, that was an all day conversation).

     

    Then you start to ask some questions and break the fear down into different pieces. Then ask your child to rank the steps with you. You may want to do this over the space of a week, ranking one or two things a night, so it is not so overwhelming for her. So ask her if I asked you to sit & look at some medicine in a spoon, where would that be on your fear thermometer? How would Meannie guy make you feel? What if you put your pinkie in it & then tasted it, how would Meannie guy make you feel then? What if you swallowed a full teaspoon?. You might also want to ask about different medicines what if it was just Tylenol or Motrin vs something from the doctor? What about a vitamin? Is it different if it is liquid vs chewable?

     

    The answers dont matter you are just looking for enough things to try with her, that you find some that are down in the 2-3 range, and therefore are achievable for her. You dont want to go anywhere near a 10 or even a 7 that is asking too much of her at this stage (unless it is an emergency topic, and then you could ask for professional help and do a lot more in the space of a few days). Once you find some 2-3s, then you can take the next step of letting her know that you are going to ask her to do that one thing for the next few days. That if Meannie guy makes it hard, that is ok, you will be there, and you will beat him up together. You may want to set up a reward program, even for a good solid effort towards trying whatever the challenge is, and a little better reward if they do it. Then we practice that one step until it gets really boring (usually 2-3 days of 20-30 minutes of practice on an easy step). After you do about 4 easy steps, you should ask her to rank her fears again. Many of the fears MAY have gone down not the huge ones, but the mid ranges may start to seem easier, giving you more things to attack. Other things you may do along the way, would be to draw pictures of kids taking medicine, write stories about it, etc. Anything to normalize it. I use a LOT of sincere praise & love when we are doing this. I see my daughter as a hero, and let her know that. Even when she fails, I praise the effort & assure her that I believe she can do it. Quite frankly, it is both exhausting sometimes but also incredibly rewarding. The first time that she beats up meannie head, you will both feel that you made it to the moon.

     

    By the way, your pharmacy may be willing to give you placebo (sugar) medicine in both solid & liquid form, so you can get the right consistency & even taste. But Tylenol & Motrin are easy to use, as you have a full dose to work with and there are even 3 flavors of each.

     

    I look at OCD and ERP like jumping out of an airplane. NO WAY am I doing that! I am scared of heights. Seriously, no amount of money! Ok, what if you told me that if I jumped out of an airplane, no more children would get PANDAS? Okay… I guess I am jumping but I still CANT! But if you ask me to jump off the bottom step of my stairs sure, ok. I might even jump off a low wall or even something a little higher if I had a glider on and someone to help me. I suppose I would just put on the parachute & learn to open it. BUT NO WAY on jumping out of a plane! Eventually, as I learn all of the steps, even going up and watching others jump, learning to look down, jumping with a partner, etc, I will no longer feel so firm that I can never do this. But it will take a while, a lot of exposure & practice, and a ton of encouragement. For a child, even just looking at the medicine may feel like jumping out of a plane, but they can get there. The final reward for them will be the ability to do anything that THEY want to do, and to beat up OCD when they want to, or when it is preventing them from doing something special.

     

    Sorry so long, promise not to do this again for another few months! :lol:

  4. huh. I am thinking about this now. We are having rages at night. So bad, 11 p.m. and I think he might finally be calming down. I have bruises on my back from holding down a hysterical 7 year old. I am wondering if perhaps my glider rocker in his room might be useful.....

     

    Sooooo sorry you are having such a rough evening... I have so been there, so many times and it is horrible - we get shell-shocked. Please take good care of yourself... I hope he is resting now and you can get some rest yourself.

     

    Glider rocker!!!! I still have mine from when DD11 was born! Thanks for posting that suggestion! There are times that I've been able to rock her in the recliner and it does seem to help soothe her.

     

    Take care,

    Denise

     

    Yep, kind of hour I am feeling. lol whew. I will sleep good anyway, that is for sure. it has to get better. i am moving the glider into his room tomorrow and will see if that helps.

    Do you have a weighed blanket? I think it is the combo of motion and cocooning that is most helpful. Open air may not give you full benefit.

  5. I'm so sorry you are all going through this. PANDAS OCD is an awful disease. As the OCD takes over certain part of their lives, it just seem so illogical to everyone, including the child. And yet it rules and everyone is frustrated and angry. How could you not be?!

     

    I hope you find the right medical answer for your son very soon. We had stomach and ear inflamation, with both ulcers & chronic ear infections. Dealing with both of those issues, while they did not cure alone, was very helpful to keeping the bbb from allowing all those nasty antibodies to cross over into her brain. We use Prevacid for the stomach issues, which has been a band-aid for the last year. We are now trying to figure out what to do to cure this issue, but the acid reducer (prevacid) did buy us a lot of time.

     

    Again, while not a cure, ERP (Exposure & Response Prevention) therapy helped our entire family to cope with the illness. It was very important to us, as every hour of her waking day was controlled to some degree of disability by OCD. Even just understanding what was happening helped me to feel calmer, to keep hope in my heart, and to help her by not adding to the "fire" (most of the time!). There are some good books out there about OCD for adults & kids - have you started reading any of those? Given the current situation, I might say that having an OCD therapist (ERP) on board may be helpful. If this all ends in a few weeks, you can "dump them" when he is subclinical, but if this lasts longer than a few weeks, getting started may make life more bearable in the interim.

     

    I know it is hard to describe the terror these children feel, when a simple thing happens "like a cover being wrong". It's not possible to get it right and that impossibility is really hard.

     

    I guess I can only tell you that our daughter is now way below subclinical, and is doing so well (knock on wood). There was a time when I could not imagine leaving her even to go out for a cup of coffee. When our days were ruled by terror. It's fine now, so keep hoping in your heart - the other side is real.

  6. Thank you for your response...I have been reading that you too have your hands full. How is your daughter doing?

    I don't know which doctor to go to.lol pediatrician won't do anything, Dr. B is in ct and we already did ivig 2x, was supposed to continue every 2 months but our well has run dry. Still in appeal with insurance and I was billed over11,000 dollars. I just feel like there its no where to turn. Every doctor specialist wants an insane amount of money. I called a lyme specialist 1,100.00 for first visit. I have 3 pandas children.

     

    Gosh that makes me mad. I am so sorry.

     

    Go with your gut, and take them to the doctor. Promise yourself a square of chocolate for every time someone looks at you with condessendingly or rolls their eyes :wacko: . It doesn't really matter. Maybe it is viral - I certainly hope so. But worth asking to be tested.

     

    How is behavior? Everyone ok so far? If so, then you are probably ok. We usually see the behavior issues 3-5 days in advance of illness, so when the illness comes, we are like "ohhhhh, she is sick!" But some people don't see any issue at all with viruses.

     

    Keeping my fingers crossed for you - let us know how it goes. If not good, just think of the amusing or enraged post you can write :). Might help you get through it.

  7. Oh Peg, I am so very sorry. I know I am talking to an expert, but don't forget the Motrin. Sometimes when it has been a while, I forget the basics. First 48 hours, I even wake her up to be sure she has it in her. Keeping the inflammation from getting out of control seems to help us.

     

    I guess this really drives home the difference. Praying that she comes out quickly. Glad you upped the abx.

     

    Hope you are ok. That sounds so insufficient.

  8. It could be herxing. I will try to be more diligent about epsom salt baths-- provided I can get her into them. I think we are going to change doctors- apparently there is another in the area.

     

    I am totally emotionally and physically crashing. This same dr started me on thyroid meds for hypothyroidism, and I am totally bottoming out since starting them about 2 months ago. Looks like I will be off to the endocrinologist too.

     

    :( Something better give soon, because we are tapped out financially. DH and I talked last night and I basically told him I am about to give up on everything and just say, "Screw it. We're not getting any better from anything, so why keep struggling to afford it?"

     

    I know I'll feel differently in a few days when I get another small influx of energy, but for now, I am totally BLAH.

    Hi - I am so sorry you are going through all this. I have followed your story from the start, and have always felt that you were taking good healthy steps for your entire family. I would go with your gut regarding this doctor. A lot of things in your post disturbed me, and I expect that would be my gut instinct as well. If you find the next doctor has a better bedside manner, but the facts are the same, then you will have learned something. But our experience (DH) with an LLMD has been very very different than this. She is very cautious, tries to keep our expenses to a minimum, is very upfront about concerns, and listens very well. She also does not diagnose "everything", if she sees odd test results, she will send to a specialist. I'm not sure I would be terribly comfortable addding thyroid results & lyme all at one time, as thyroid issues alone can be an unbelievably complex challenge. (Just decisions on natural vs synthetic medicines can be a big one).

     

    Given that your test results are fairly indeterminate, and that you have a long history of working with similar challenges with Pixie, I'd suggest looking back at your charting. What has worked? What other circumstances may have helped or hindered treatment. What has made Pixie worse? Is the treatment worth the tradeoff at this time? What does your insurance cover best?

     

    I think you must be exhausted emotionally and financially right now. I wonder if you can take a week of making no decisions, finding some calm, and then come back to it. Sometimes it can start to feel like there is so much pressure from all directions, and a decision has to be made right away. But that is generally not true - usually a week is ok, and you can come back to it again.

     

    If you were "just" dealing with PANDAS, I am sure parents would ask you questions like "perhaps you have an exposure or break-through strep issue". If that is possible, then adding an abx like Azith might help. Perhaps Pixie has PANDAS and an underlying Lyme issue? Maybe the challenge is that you are in the middle of cold & flu season and her antibody load is very high right now. I can't remember, did she have her adnoids and/or tonsils out? We did adnoids due to high re-occurance of ear infections and while this did not change the immediate situation, it has helped us avoid "blips" during the cold and flu season simply because she is no longer getting an ear infection with every respiratory illness.

     

    I'm sad that I don't have much of any use to offer you, but hope you know that many of us on all the boards watch your story, and hope with all our hearts that you find the right answers for your entire family.

  9. If she is currently taking an hour on average to take, you could also set up a reward & reduce the amount of time it takes her each day. For example, if she takes it in 55 minutes, she can have a book at tuck in (or a card game, whatever she likes). This is very acheivable, and then you reduce it in 3 minute increments each day. If she is a competive kid, also set other times - so 30 minutes is worth a half an hour of TV, 15 minutes is worth a movie night, 5 minutes is movie night with a friend. Then reduce your rewards after a week. Maybe a full 2 weeks of 5 minutes is worth something really special.

     

    If it takes her longer than the goal (60 to start) then she may lose a privledge - such as TV, dessert, play time, etc.

     

    Good luck!

    OMG! You are so good!

    Coming from you???? Mom of the CENTURY? :wub: Just had to find a LOT of ways to even get dressed, move through the house, face life when everything told her to pull up the covers and quit. And even the covers were scary, so not a lot of options but to try to live head on. A bit time consuming :), but better than the alternative we were presented with at the time.

     

    I am in love with azithromyacin, Dr. L, Dr. C, ERP, Duke's psychologist, our immunologist, Vit D and my strong brave unbelievably couragous daughter who taught me that anything I fear is minor compared to what she has already overcome. Oh, and my husband :lol: .

  10. Good thoughts to all of you. Flu is a bummer on it's own. I hope you find no PANDAS bump from it. I heard a lot about H1N1 causing issues, but not as much with regular flu.

     

    Our daughter does not "qualify" for flu shot anymore - it said on registration form (I was getting, not her) that if you have any neurological issues, you should not get the shot. Interesting.

  11. If she is currently taking an hour on average to take, you could also set up a reward & reduce the amount of time it takes her each day. For example, if she takes it in 55 minutes, she can have a book at tuck in (or a card game, whatever she likes). This is very acheivable, and then you reduce it in 3 minute increments each day. If she is a competive kid, also set other times - so 30 minutes is worth a half an hour of TV, 15 minutes is worth a movie night, 5 minutes is movie night with a friend. Then reduce your rewards after a week. Maybe a full 2 weeks of 5 minutes is worth something really special.

     

    If it takes her longer than the goal (60 to start) then she may lose a privledge - such as TV, dessert, play time, etc.

     

    Good luck!

  12. Here are a few links to papers about OCD & Catatonia:

     

    http://www.ncbi.nlm.nih.gov/pubmed/2760002

     

    I can't get to this paper - maybe someone else can help? Obsessive-compulsive Disorder and Catatonia Can be Caused by Antibasal Ganglia Antibodies by Nicholson, Tim. Maybe you can email some of the authors directly.

    http://journals.lww.com/cogbehavneurol/Citation/2007/12000/Obsessive_compulsive_Disorder_and_Catatonia_Can_be.11.aspx

  13. Do you find that the catatonia is due to a general inability to move due to a specific movement disorder? Or is the inability to move due to a compulsion (OCD) - perhaps that movement will cause harm? Your statement that "he fights us if we try to move him" makes me think this may be a very severe OCD symptom? I'm sure there are multiple ways that this could be PANDAS, but if it is related to OCD (and you can show this) and you had sudden onset & a positive Cunningham result, then many of the docs will support your efforts to treat this as PANDAS.

     

    Since he is 16, your son might also qualify for the OCD Institute at McLean. Although I firmly believe that a PANDAS child shoudl be treated medically, should ERP therapy be needed, you may find expert help there.

     

    What a horrible situation - please know that I am thinking of you and hope you find the right answers for your son.

  14. This was a clear PANDAS symptom for us. She can now handle change, doesn't get upset (at all) when one fun activity is done, and there is nothing else to do. She can handle down-time all by herself and can find activities & do them by herself.

     

    During an exacerbations, constant activity was the norm. We had to develop some techniques for this in therapy, because it was not possible to keep it up on my part - or hers. A few things worked for us - we made a list of "quiet time" activities that she could do in 30 minute increments. We made cards (like coupons) that I would hand her and direct her to her independent activity list. One of those times during the day could be used for TV, which was often a sanctuary for her. (However, we did find that immediately after a TV time, she had extremely high anxiety levels, so we had to prepare for that. As a result we kept TV time to a minimum.) We also found that setting a schedule at the start of the day, and keeping to that as much as possible, was very helpful to her. We did not set exact times, but set time ranges for most activities, as she was very literal during that time (outside of an exacerbation, she is a very flexible child and adapts to a changing schedule with astonising ease).

  15.  

    I read on here (way back) someone tried the 'Edgar! stop what you are doing!' while in a rage episode, to distract them, make Edgar the bad guy, tell him to stop...it actually kind of worked, we put 'Edgar' in the trash can, but she said 'he is coming back out'

    Wondering if I am giving her multiple personality disorder now, lol.

    Not really lol here, I am trying hard to hold it together (and fighting/having this 'virus' in our house)

    Sarah & Samantha 5

    That was LLM. She was talking about some basic Cognitive Behavorial Therapy (CBT) - it can be very helpful to have in your tool belt, although it is not a cure. But it won't give her multiple personalities :). The part of CBT therapy that is specific to OCD is called ERP (Exposure & Ritual Prevention) - again, not a cure for a PANDAS child, but very very helpful to us at many stages of the disease.

     

    To feel a lot more comfortable with these tools, and with how OCD manifests, I'd suggest that you read Tamar Chansky's book "Freeing your Child from Obsessive Compulsive Disorder" and then do the workbook "What to do when your brain gets stuck" with your child (you can read it first, and then work with her over several nights). Parenting a child with OCD can be counter-intuitive, but once you are comfortable with the tools, they become second nature.

     

    So sorry for what you are all going through. It's an awful disease.

  16. We did all 4 tests for Celiac. Some docs only run Igg, because of the expense, but our insurance covered it. It is critical to run all 4 because the igg test have a high rate of false positives and negatives. Our results were odd, so we did an endoscope with a gastrointerologist

     

    We found multiple ulcers and did biopsies to test for both celiac and h pylori. Since both were negative, we elected to start w prevacid, which was miraculous for us. By healing that injury in the gut, we dramatically contributed to a calming of pandas issues. We will do another endoscope this year, and consider another medication if the ulcers are not healed at that time. Prevacid eliminated all stomach pain, although it is a band aid, not a cure, it does give the gut time to heal itself without a constant stomach ache. And the benefits of a child not constantly feeling throw up in her throat are likely obvious.

  17. Hi - we did not have abnormal body image, maybe partially due to her age. But it is a pretty "normal" type of OCD. I don't think EAMom or Buster are on right now, but their daughter is a good example of another child with this issue. Others have posted about this as well. There are plenty of parents here that have found some help in a very low dose of Zoloft, although of course, use caution and watch carefully to ensure that you are not seeing activation.

     

    What dose and type of abx are you on?

  18. Wow, I really want to post on this thread, and I find myself unsure what the heck it is I want to say. It made my mind race in so many decisions.

     

    OCDMom, I am never sure what is better. We are one of the bombed families. But I see that as fortunate in some ways, because it was always clear that something happened. It took us far too long to figure out what to do about it, but it did give us some level of confidence in the treatment at the end. But it did leave me with the feeling that it could happen again at any time. I did not see the bomb coming the first time. I guess now, at least we are in a war. I think that may be where the challenges come in for parents, even in recovery. I'm not sure if I am truely PTSD - although I do joke about it. But I do have a short trigger on reacting - I can literally feel myself turning into a different mom, in a matter of seconds. Normally, I am not a helicopter mom. But when I see signs of OCD, it's like a switch flips in my brain, and I find it hard to explain the mode that I go into. I guess that is good, in part, as it is a mode that is very efficient, and doesn't leave much room for emotion. It's a mode of coping, supporting, empowering, finding solutions, that leaves very little room for anyone or anything else. I so admire those of you with more than one child, as I really cannot imagine dealing with this with a sibling, nevermind with 2 or more children that are suffering.

     

    PhillyPA, you broke my heart tonight. I'm so sorry, and I hope you get to the "post" sometime soon.

     

    With over a year of recovery under our belt, I agree with Vickie - the worst is fading a little. Sometimes I have to go back & read to really remember what happened. But then other times, I meet with a new pandas mom, and a flood of memories come back, and I am astonished all over again that we have made it to where we are today.

     

    I find myself admiring my daughter all the time - things that she does now with great joy, that would have been impossible with PANDAS OCD. I wonder if I will ever stop being happy when she does something gross, or brave, or even something simple like eating an ice cream sundae or sitting on the floor in an airport terminal.

     

    I am thankful for the friends I have made here, for those parents that reached out to us, for the researchers that really care for our kids and are fighting against the odds for funding. I am grateful for the band of little girls my daughter met at the OCD conference, who made her feel normal again. I so thankful everyday to those of you who are fighting for research, education or support of this disease, often without anyone knowing your name.

  19. Oh Stephanie, I hope you find answers soon. We rode them out, but nothing ever lasted 4 hours - max was maybe 2. So I think you just have to know when it is an emergency. So long as he is not hurting you or himself, then you do have choices.

     

    We also found that our daughter could calm a good bit with some "squashing" rather than my trying to hold her. We showed her this ahead of time & then asked her permission before doing it. She would lay on the sofa, and we would pile pillows on her & then lay very gently on her with some pressure. This had to be done at the very start, once it escalated, it would no longer be tolerable. We found holding her would make her worse (claustrophobia like reaction).

     

    I hope it resolves very soon. You are such a great mom, and I know you will find answers.

  20. hi, yes, panic attacks were the first sign of an issue. We quickly learned to recognize and manage a panic attack (breathing techniques, waiting it out, calm, etc) but given your families history and the clearly documented strep timeframe, I would be sure to keep her on abx and get her to a specialist. For the next few days, while she is still sick, I might add Motrin to keep fever down & to try to keep the bbb closed. Your ped may want to add another antibiotic, since this has gone on for so long. Sounds like the Omnicef was working well, so that might be a good option.

     

    So sorry you both went through this - a panic attack is such a horrible thing, and so hard to tell what is real and what is not.

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