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Mommy2MCL

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  1. Like
    Mommy2MCL reacted to BeeRae22 in Dd sick and I'm back to worrying   
    I suppose allergies are possible, but seems viral, especially since 3 of us in the house got sick.... She had a better day yesterday, started to have some oppositional/aggressive behaviors but I was able to divert her quickly and head it off, so maybe she's turning the corner. Was told to give her 400mg 3x a day for 1 week.
     
    Wish us luck
  2. Like
    Mommy2MCL reacted to BeeRae22 in Progress?   
    I hate to speak too soon, but dd (who has not eaten a meal in almost 8 months now) had a little victory tonight with food! After CBT today (session 12) we stopped at cvs to get her a little "prize" for "being good" (this is debatable! She had a rage episode, but did cooperate eventually) about having bloodwork done this morning. At a previous CBT session her therapist had her eat some pirates booty which she ate, somewhat willingly (a few pieces only) with a lot to drink, and quite a bit of effort. So anyway, I spotted Cheetos puff corn and got her a bag... Well, tonight, wow! She ate half the bag, with nothing to drink! And then at dinner, she had 3 (gerbil sized) bites of pizza, and didn't even pick it apart! This may not sound like much, but the puff corn and these 3 bites was the most food she's eaten at one time in months! And the only solid food she's had has been grilled cheese soaked in chicken soup broth (to the point of falling apart) and she has not varied from that AT ALL, so this was HUGE!!!!
     
    So, here comes the question..... Today was day 6 of minocycline. And today she had an extra long CBT session (12th session, was an hour and a half long)-- which has shown 0 progress to date. (She has "eaten" a French fry-- note the word eaten in quotes--- and a pretzel stick once with the therapist in the past, but has not shown a bit of progress at home, at all.
    So, I'm looking for opinions! Is this.....a). A fluke . The CBT C). The minocycline kicking in Or d). A combination of the above?? I'm sure I'll never really know, and if the progress continues I'll be grateful for whatever it is, but what does everyone think???
     
    We had a LOT of bloodwork done today, retesting and checking. I am really anxious for it to come back.... The only thing we've found so far is myco p, but we suspect Bartonella also.
  3. Like
    Mommy2MCL got a reaction from EAMom in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    Seems interesting that today there is a post on this forum about this and then on the actual article a comment by pedi in Boston speculating PANDAS as a theory... (I Google searched his name)
     
     
    Seems like people are trying to diffuse a situation they are afraid of getting out of hand... Would love to hear from the mothers who organized this or the nurse that spoke.
     
    I hope the pedi and the new poster never have to experience PANDAS/PANS but I can guarantee our childs illness is more than a theory..
  4. Like
    Mommy2MCL reacted to cara615 in BRAVO probiotic. We are starting it...   
    I can tell that this is going to be a process. Gut healing takes time. 1 week on BRAVO and I am slowly increasing the dose to 1/2 tsp 2x a day. This stuff is supposedly so powerful that you have start out very slow.
     
    His poops are amazingly healthy looking too.
     
    Tics are still there but gradually, gradually............ i can't even type it....i don't want to say
  5. Like
    Mommy2MCL reacted to pr40 in no treatment for now   
    here is why wait and see might not be the best strategy: when there is an exacerbation, it means that the body has began to react not to an infection but to its own reaction to that infection. the auto-reaction has already started and it takes time for it to die down.
    for this reason, abx is taken prolifically, to prevent an auto-immune reaction.
     
    one could even suggest -- not speaking as a scientist, of course -- that your kid may not be displaying symptoms even when there is some underlying auto-anti-body process going on. or that you are not catching up on those symptoms.
     
    I don't want to alarm you just to give you a different way to think about what you are seeing.
  6. Like
    Mommy2MCL reacted to beeskneesmommy in Am I foolish to think that my daughter is going to get better?   
    My son was dx at age 2.5. In retrospect I know that the onset was around 18 months and that he was getting Strep as an infant! We battled this beast hard. I cannot tell you how many nights I crept into his room in tears and whispered for him to "come back". Those days were very, very dark. I went thru some pretty devastating depression, but kept going because I had to. I would not be satisfied with less than getting him back. Fully. There were times when I felt the way that you are now...many times. I remember hope waning away and crying myself to sleep for the "loss" of my sweet boy, so many nights. Here we are, at age 7. It's been hard work, lots of research and the help of some wonderful specialists and PANDAS friends. However, he is well. He has been well consistently for almost a year. There have been some minor, and I mean minor concerns since last August, but nothing that has affected his daily life. This is the first allergy season that he has managed without significant flare. He is bright, articulate, getting great scores at school, happy, and fully engaged in sports, friendships and life. he is NORMAL!
     
    The biggest pieces of advice that I can give: Get with a specialist, or 2 ASAP. Test for infection so you can target with the appropriate abx. Do not look upon this as 1 cause, 1 cure. rather, consider several angles and pieces of the puzzle. Ask for help, anywhere you can get it. We have all been there and we are willing to help in the areas that we know how!
     
    Hang in there and know that you are NOT alone!
     
    May love and warmth and comfort come to you tonight.
     
    Kath
  7. Like
    Mommy2MCL reacted to LNN in Am I foolish to think that my daughter is going to get better?   
    Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.
     
    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.
     
    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.
     
    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help
    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)
    http://www.lifebuzz.com/8-things/#!LfOA7
  8. Like
    Mommy2MCL reacted to 3bmom in West Coast PANDAS Symposium   
    The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed.
     
    I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past.
     
    I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube.
     
    Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients.
     
    Augmentin also decreases Dopamine and Glutamate.
     
    Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve.
     
    Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases.
     
    She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease.
     
    Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else.
    Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this.
     
    The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions.
    She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases.
     
    As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year.
     
    Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.
     
    GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!
     
    Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!
     
    The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.
     
    I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.
  9. Like
    Mommy2MCL reacted to cara615 in Enhansa   
    Well all I can say is wow. The Enhansa has very immediate results. Ds's tics are almost non existent while we are in the house. If we go outside and play for an extended period of time, the pollen gets to him and he will have some tics (screaming and head jerks are his tics of choice this week - fun times!). But then we come back inside and the tics go away.
     
    i have been giving him 248mgs 2x a day. I just ordered the big jar of it. We are using the tasteless powder that you mix with water. This stuff works better than motrin in my opinion!
  10. Like
    Mommy2MCL reacted to Missmom in The Histamine Factor   
    Please search this forum about the singular. Was this a pandas specialist who suggested singulair? I know it has been at least a year ago but there was a few threads on here that singulair is not a good choice for pandas kids. I believe benedril and Zyrtec are fine but I stopped giving my ds singulair after reading the threads. My son now takes vistaril nightly for allergies and anxiety. I can't remember but it was something about how the brain reacts to the singulair.
  11. Like
    Mommy2MCL reacted to MaryAW in The Histamine Factor   
    I went to the Q & A in Mass. a couple of weeks ago and asked the panel about histamines and our PANS/PANDAS children. I explained how my daughter had allergy testing prior to onset and was allergic only to dust mites. After 2 years of PANS she is now testing allergic to everything and had very bad flairs last pollen season. I asked if this was related to PANS/PANDAS. Dr. Swedo nodded her head as I asked. She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system. The entire panel was in agreement that immunotherapy was not the right thing. It is not that they are actually allergic, so much as their immune systems are in such a state of inflammation, that they react to the allergens. (I do not remember the exact wording, but this is the gist). They recommended antihistamines (I use Zyrtec for my DD). I have read that vitamin C is a natural antihistamine, so I have been giving that as well. Nordic Naturals Ultimate Omega Jr. is a great source of Omega 3's which is an anti-inflammatory. Also, getting your child's vitamin D level to 50 - 80 ng/ml will help. During bad flairs ibuprofen or aspirin can help too. The Neilmed nasal rinse at night was excellent too, but a bit tricky!
  12. Like
    Mommy2MCL reacted to mar in The Histamine Factor   
    Mommy2mcl
    I don't know how young your child is but I went thru this to and what to let you have a heads up. My ds had no allergies then he started getting real bad at 8 with tics and everything and I was told to put him on singular and what not. I heard so many bad side affects about singular and did not go that route. He probably had pans /panda back then because I took him in for igg testing and he was reacting to everything under the sun. And had strep many of times . Told I is coming up as ashma prone. His immune system was shot basically and the gut. My boy was bad and it was scary tried Claritin but did not stop anything . Total diet helped! I do not want to sound like a commercial and say life is perfect but please don't listen to allergy meds as a cure . I remember ped and allergist saying he will be on sigulair and allergy meds all year bc of his reactions and I was not okay and really scared! We went full blown diet and salt bathes and what not and he has not taken 1 allergy med since then and has been doing well. He has been doing well and has not had strep in several years. He will be 12 next week and I will never regret not listening to doctors and and not putting him on singular and other allergy meds. I cleared up the gut and went thru many of fights and it was real hard I will not lie. I wish I could send a picture or show you how bad he was! He couldn't even go by a dog bc he reacted but now will get licked and is fine! Look into straiting the immune system and not hiding the issue. Pm me if u have questions.
    Mar
  13. Like
    Mommy2MCL reacted to 4Nikki in The Histamine Factor   
    She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system.
     
     
     
    I would like to know more about this. State.
  14. Like
    Mommy2MCL reacted to MomWithOCDSon in The Histamine Factor   
    With regard to how some kids react to Singulair, etc., I'm becoming increasingly convinced that how our kids (and we) react to medications has something to do with the methylation cycle and what mutations may be involved, causing and/or enhancing "disconnects" in it.
     
    I've heard Dr. Swedo make similar statements about immune dysfunction, and in our experience, it can be a chicken and egg thing; in my DS's case, he was displaying hefty seasonal allergies prior to our discovering PANDAs, and his sensitivity to those allergy triggers has diminished significantly since we've been dragged into the world of immune dysfunction! Maybe it's partially an age thing.
     
    When the pollen is high, we use Zyrtec in addition to the quercitin we use pretty much year 'round. DS also has a propensity to hives, eczema and reflux when he's exposed to illness or experiencing high stress levels (ACT's, a new social situation, etc.). We've found Pepcid (an H2 receptor antagonist) to be tremendously helpful during those periods.
  15. Like
    Mommy2MCL reacted to Mayzoo in Enhansa   
    Here is the one I order. I have prime and the price it shows for me is $17.77 for 120 of the 750mg capsules.
     
    http://www.amazon.com/BioPerine-vegetarian-capsules-Pure-Anti-Inflammatory/dp/B00DUYYUNQ/ref=sr_1_4?s=hpc&ie=UTF8&qid=1398634148&sr=1-4&keywords=curcumin+%2B+pure
     
    I think it is in an "0" size capsule. It is bigger than a zithromax but smaller than augmentin. Yes, kiddo will swallow any size pill and several at a time actually.
  16. Like
    Mommy2MCL reacted to T_Anna in Cannaboid OIl-RESULTS!   
    He is continuing to push himself. Today he ordered underwear, pants, tshirts, socks and cargo shorts. He doesnt want to wear any of his old things and at almost 16 I doubt very much if anything he was wearing at 14 will still fit.
     
    He is sleeping in his room again too (on an air mattress, but it's a step). Just hoping it continues.
     
    T.Anna
  17. Like
    Mommy2MCL reacted to JoyBop in Some good news   
    I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough.
     
    I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place.
     
    It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live.
     
    Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.
  18. Like
    Mommy2MCL reacted to qannie47 in T/A update   
    Hello guys & gals. I have not been as active on this forum in terms of posting because our ds is doing so well.
     
    I thought it was important to share just how well my ds has done since his T/A. I know that there is some controversy amongst the Pandas docs regarding the necessity of a T/A for our Pandas kids....
     
    My ds had his out 12/30/13. I am stunned at how well he has done. To date, he has had 1 small flare about 4 weeks ago. To my amazement, the flare was minimal. The only symptom I saw were the hyper-motoric movements. Within 12 hours I did not mess around and I put him on full dose abx. Within 24 hours I saw the movements subside and he went back to his normal baseline. Remarkably, emotional volatility ALWAYS accompanied his flares. This time they never appeared.
     
    What has really made my head spin is that since his t/a, my son has been self reporting that he feels better. I never told him that we were doing the t/a for his Pandas. I did not want to plant any seeds or cause any anxiety in him to perform. Since his surgery, for the 3rd time he has said this to me. "Mommy, ever since winter break, I can focus better in school and I can follow the rules better. I also like school again mommy". I responded, "Why do you think that is ds?". he replied, "I don't know, maybe because winter break was so long that I think I got all my energy out". I truly find this astonishing. I have also heard him refer to the timeframe "WHEN" he had Pandas.....as if he feels its gone. Interesting.
     
    I have truly seen my child heal to another level. I do not think this is a coincidence.
     
    Just wanted to share in case anybody is considering a T/A.
     
     
  19. Like
    Mommy2MCL reacted to cara615 in Dose of Azithro   
    Update: day three on 150mgs of azithro and tics are resolving. He needed a higher dose.
  20. Like
    Mommy2MCL reacted to BostonDad in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    This is the link http://pandasnetwork.org/malegislation/ 3bmom was talking about regarding the bill for insurance coverage for PANDAS kids in Massachusetts. I also have another post about the bill H.984. Not looking to hijack this post but this is awesome! A Bill that would cover the cost of IVIG. IVIG has been a blessing for my kiddo but the cost is a killer. We do what we have to for are kids!
  21. Like
    Mommy2MCL reacted to 3bmom in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    I am glad this area of Mass. is so proactive. They have authored two bills for insurance coverage for PANDAS kids for their state. This is truly awesome wether there is an outbreak this year or not. I am amazed at the parents ability to come together.
     
    Anybody with family or friends in the state can help get this passed. They also are accepting personal stories from our community. All the info is on the PANDAS Network. Sorry I would post it but am computer challenged. Can't imagine how good I would be if I studied computers for 9 years instead of the immune system!
  22. Like
    Mommy2MCL got a reaction from SSS in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    Seems interesting that today there is a post on this forum about this and then on the actual article a comment by pedi in Boston speculating PANDAS as a theory... (I Google searched his name)
     
     
    Seems like people are trying to diffuse a situation they are afraid of getting out of hand... Would love to hear from the mothers who organized this or the nurse that spoke.
     
    I hope the pedi and the new poster never have to experience PANDAS/PANS but I can guarantee our childs illness is more than a theory..
  23. Like
    Mommy2MCL reacted to cara615 in Atlanta conference   
    Bhakta, Dr. t and Beth Mahoney were awesome. I will post slides when I get them.
     
    Big takeaway for me is that abx need to be rotated. Shouldn't stay on one for too long. Looks like we will be switching to something else. Luckily our Dr. Is attending this conference and changing her thoughts on how to treat. She also realizes her limitations and we are also going to start seeing an immunologist that treats for PANS/PANDAS as well.
  24. Like
    Mommy2MCL reacted to smartyjones in it's the small things   
    I'm always hesitant to say things like this, so let's all knock on wood together, please. but, I do in hopes this silly story may give someone a glimmer of hope that there really is light at the end of the tunnel.
     
    today, ds has a check in appointment with doc. it has been 4 months. 4 months ago, I was happy that doc kicked him from the 2 month schedule we have had for about 4 years. we had tried it before, but had to come running in before the time was up. today, he's doing fine and it really is just a scheduled follow-up.
     
    as I've learned, I go in with my notes organized and ready so I don't forget anything. I wanted to discuss our issue with Vitamin D a few months ago (ds seemed to react with even small doses such as 400iu with pandas-like symptoms but tests low, in the 20s). i actually couldn't remember how i wanted to say what the behavior was. i had to look back in my notes to see what it was. it was 'unreasonable and over reactive upsets'.
     
    oh yes, how could i forget?! there was a time when we lived hourly with unreasonable and over reactive upsets and now I'm having to look up what the symptom is.
     
    yes, i am very grateful for that and i wish for everyone struggling hourly that your time to have to look up past symptoms is just around the bend!
  25. Like
    Mommy2MCL reacted to airial95 in Four Years - A Reflection   
    Year 4 – a look back
     
    Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.
     
    I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=
    Second: http://latitudes.org/forums/index.php?showtopic=16245&hl=
    Third: http://latitudes.org/forums/index.php?showtopic=19517&hl=
     
    And here are my reflections for the 4th year of our journey:
     
    I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips. While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year. I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children. I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again. I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed. I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.  
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