thereishope

To You, My Sisters by Maureen K. Higgins - Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland " and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Put warm compresses on it. I also heard a tea bag on it will help it heal.

My son had to be screened for Asperger's. By the time his appt came, he was recovering and he did not get the dx. I have a feeling if he was screened at his worst, he would have gotten the dx.

I'm glad you're seeing improvement! Sometimes, recovery will come in waves or if anything is residual, if you fight the urge and overcome one thing...other OCD habits/rituals will automatically follow in shedding. If she does experience a setback, take a deep breath amd remember that is normal. The brain is figuring a lot out and it's like it's reorganizing a bunch of information.. My son would have bumps in recovery and as long as it did not surpass 3 days, I tried not to freak out too much. Sometimes even when he had a setback, he'd end up bouncing back even better than he was before. Thanks for letting us know good things are happening!

Manda, I'll be the first to ask. How was Pixie after she caught strep? Any blips in behavior? I am so glad she is doing well! Vickie

I'm going to play devil's advocate as well. My 9 year old, 3rd grade, non-PANDAS son sometimes acts and plays with things that are way too young for him. I think it's because he's the oldest? It can also be that she has had a lot going on, a lot of internal struggles. Those younger toys is what she finds comfort in and reminds her of a time when things weren't so bad. I think when she's ready to move on, those toys will have a special place in her heart but she will broaden her horizons. Is her play picking up where it was right before PANDAS hit?

Oh, I am not in any denial...I definitely have OCD tendencies:) With my kids, I don't really have time to read. My book collection is Dora, Transformers, etc. I do have a copy of "Ominvore's Dilemma" sitting in the living room that I go to if they are quiet. Not a suspenseful page turner, but interesting.

Congratulations on reaching 4 years! Which foundation are you involved with that you will be trying to raise money for research?

My son took Flonase for a week when he had a stubborn sinus infection and he did okay with it. The ped originally said to keep him on it, but I didn't feel comfortable doing that since I did read on the package that even though it is local, eventually it can lower the immune system. I just keep it on hand and if I see allergies really bothering him, I will use it. The nurse at the office did say I can use it on an "as needed" basis. If she can take Ibuprofen, that may take some of the swelling down in the sinuses. I hope you get a break soon! It comes in waves, doesn't it? The family does well for awhile then you get hit with everything at once.

I wouldn't worry about Dr K automatically dismissing a possible PANDAS diagnosis because your son may be doing well at the appt. He is a seasoned doctor who has seen A LOT of PANDAS cases. He understands that just because a child is doing well now doesn't mean the next week, or even the next day for that matter, it can be a very different story. I would do a timeline, a summary of journal entries along with symptoms, bring all your test results in with the dates of when each test was done. Even if you have photos of your son when the symtpoms were worse, that may be good to being in. He will look at the whole picture, not just he sees that day. I'd start working on your timeline now. Maybe do bullet points instead of paragraph form. Did he mention if you could send that ahead of time (via email) for him to review before the appt? Even he says you can do that, bring a hard copy too.

It's a constant guessing game. That rash makes me think that spray wasn't good for her. Does he take oral allergy meds? There's a recent thread about spring allergies and some talk abut meds their kids take. If it's allergies causing the PANDAS symptoms, it can take some allergy meds up to 10 days to get the full effect. If she can take Ibuprofen, I'd give that too for now. If the cough seems like it's strating to hurt her or just not even giving ner a break, take her in to have her chest listened to and, if needed, outright ask if it could be Mycoplasma P aka Walking Pneumonia.

Are you trying to pursue IVIG? If not, and he is doing well, in my opinion, I wouldn't do a steroid burst. You don't have to wait until he at rock bottom to do it, but if he improving, you see good things happening, and you are not pursuing IVIG, I just can't see the reason to mess with a good thing.

When did she stop the nasal spray?

How long will you be vacation for? If you could, personally.....I'd probably wait until I got back from vacation if it's only a week or less. You may have too many factors in the equation if there isn't improvement. You'll be saying to yourself, "Is he not improving because the steroid didn't work or is e not improving because of all the excitement over the vacation". Let's hope it works, but I have to add that "just in case". Finally, my son did not get get hyper or get rages from the steroid, but he also had it before with croup so I knew he reacted fine to it.

My son gets a cough with allergies from sinus drainage. In hinsight I realize the cough he had with Mycoplasma was harsher and more consistent. he coughed in the middle of the night too...waking him up. He is my non-PANDAS son. If you have the teacher's email, ask her if a nasty cough has been making rounds. Was the RX just the nasal spray?

Have you taken him for a strep test since the rages and such came back? Start there.

Last year, when the time change occurred and my son was in a PANDAS exacerbation, we fought every night why he needed to get pajamas on before it was dark. Well, it now doesn't get dark until about 9pm. I find myself closing all curtains and trying my best to hide the sun. I think I'm going to buy lined blackout curtains for the kids' bedrooms this year.

This isn't only PANDAS related, but the Senate did officially designate March as “National Autoimmune Diseases Awareness Month” this year. We must remember that we are part of the autoimmune community and in the future they may be able to help with achieving funding, educating people, etc. Senate Resolution 372 Designates March “National Autoimmune Diseases Awareness Month” http://www.newswise.com/articles/senate-re...awareness-month

It sounded like he had a lot of excitement over the weekend, a lot of sensory stimulation, maybe a lot of sugar, and a time change. Odds were against you at having a good night. Give it a couple days and keep things as calm as you canin the house.

Oh man...now he has an upper respiratory infection! Yes, that will cause setbacks, and a decent one at that since it's so early in treating the PANDAS. Who dx that infection? Did you ask them if it could be Myco P?

Hi. May I ask if the issues that led to an Asperger's dx were always there or were they triggered as part of PANDAS and never completely went away? Meaning, was autism or Asperger's a concern pre-PANDAS?

Welcome. I can't say if I think your child has PANDAS or not, but all I can do is relay my own experience. My son was 5 when PANDAS hit. For him it was sudden onset on his 5th birthday. Within the year folowing, we had 3 strep triggered exacerbations which also led us to a Asperger's screening. Luckily, my son continued to heal while waiting for the appt and by the time the appt came the psych cofidently said he did not have Asperger's. If you read the thread on social problems, you can see the list of social problems my son had. But that was just social, so many more occured within the home. If this disorder were to surface when a child is 2 years old, I would think it may be hard to see if the symptoms aren't over the top. With each subsequent excaerbation, esp if they are close together, the symptoms that surface can be more intense, take harder to recvoer from. With each exacerbation, the symptoms can vary. Look at the "situation" now, start with the basics, take him for a strep test. Start with the rapid, if that comes back negative,make sur ethey send it out for a culture, If that comes bcak negative have blood tests run. Also, have all family members tested. I'm not really sure about the Abilify or concerta. I think we need to start a thread about Abilify. I'm, just going to outright ask...is it becoming the norm for Asperger kids and kids with PDD to go on Abilify? Do you thik the meds are helping and how often has the dosage been upped? I am not saying to stop any of those meds right now, but I have to ask since if you enterain the idea of PANDAS, PANDAS kids may not react well to SSRI's. Here are some great link to print out and read. Maybe it will answer some questions or lead you to new ones. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Buster's flowchart for trying to determine diagnosis http://www.latitudes.org/forums/index.php?...ic=6688&hl=

I'm still confused. I just can't wrap myself around the idea that someone has inflammation for a certain amount of time then there isn't something brusie like remaining after the inflammation goes down. Then that has to heal. Am I thinking there's more inflammation than there really is and no bruise can form on the basal ganglia?

Have you taken him for a strep test since then or done bloodwork? When he had his tonsils out,did he go on Keflex? Did you see improvement then? If you decide to look into possible triggers, Mycoplasma is becoming more "popular" on here. That is something else you can check out through a blood test. There is a chance he had an infection when he got those vaccines then the vaccines through his immune system into overload.

7up Mom....are you giving your son Ibuprofen? Are the rages tolerable? Let's all hope it is a bump and he will wake up better. Have you ruled out strep in family members yet?