So all hell and broke loose at our house. Not for my daughter really but I recently broke my leg. Wow, I BROKE MY F-CKING LEG. Yes, I'm a little upset about it. So the details quickly....I'm at my 20 year high school reunion. I'm wearing a dress and looking smoking hot. I can say that about myself with out being a snob because I worked very hard on that hotness just for my reunion! :) I was on this "platform" thing and took one wrong step backwards, off, in wedges. Ankle went one way, I went another and down I go. I spent the remainder of the evening in the ER and then spent the following morning in my hotel room waiting for my husband and eldest son to pick my ass up 2 hours from home because I couldn't drive. My hotel mates had left to go float the river (an activity I now had to miss) DAMN IT!
Anyway....I'm shared this tidbit because I think I mentioned in my last post (the first one) that my daughter may be flaring up. She is. P.A.N.D.A.S. kids are difficult to parent. Now I have a broken leg? Really?!?!?!?! Ugh....
So she is acquiring a few new tics like tongue clicking and shoulder shrugs. They really aren't too noticeable though and even kind of cute. The issue has been a bit of behavior regression. So this is actually odd. She is regressing in one form and progressing in another. Her regression consists of wanting the Binky and some more fears of being alone, the dark, and few other quirks. Progression is she is using the POTTY! (insert your own form of inspirational music here, I am hearing HALLELUJAH) It just clicked. I saw her squatting between my sofa and chair and I said..."Um, are you hiding back there?". "Yes mommy" she says. "Are you pooping?" I ask. "Yes mommy" she says. I said..."Wouldn't you like to poop in the potty since daddy put the new toilet in down here?". I actually saw the light bulb turn on above her head! She responded with a thrilled yes and I hollered for my husband (since I can't walk anywhere quickly or gracefully at this point) I was actually concerned for that 1/2 second that she would freak out and want me to do it but she didn't. It was fine. Mission accomplished! An hour later, a second missile deployed and that was daddies cue to quickly run out and buy her a new dinosaur. I thought it was a bit premature but promises are promises. She has actually been 50/50 consistent too. Pee isn't going as well but I'm still happy.
So back to the P.A.N.D.A.S. issues. The Binky. This really happened overnight. she has been Binky free for about a year to a year and a half. I still have them because I have a little guy I babysit and I never got rid of them. Spares you can call it. Every time I find one, I just throw it into this dish I have in the cupboard. So this particular day, she was having a few rages and they included biting. We were standing eye to eye and talking about the recent bite to her sister and she had this sort of melt down. I have never seen her meltdown like this. It wasn't a tantrum, it wasn't a rage. It was like she was emotionally broken. It absolutely broke my heart. She was crying and saying..."I need my Binky" We tried reasoning with her and talking about the fact that she doesn't use it anymore, etc. Her response between tears was "I really need my Binky or I won't be able to stop biting". I had an Epiphany and then gave her one. This isn't behavioral, this is sensory! At that moment it was like a scene from a movie where someones has a memory of a bunch of events all at once. I recalled noticing her mouthing everything she got her hands on the last few weeks including her hands. As we were sitting there talking about it she started chewing on her toes! I asked her what she was doing and her response was "I always do this" (no she doesn't). That's when I gave it to her. I posted on one of my support groups to find out what other parents thought of this. A few said absolutely do not give it to her because I would be caving to her obsessions, a few said its sensory and to give her alternatives and a few said let her have it, she's only three. I agree. I am the mom who secretly hates seeing older kids at Target with a damn Binky and now I have one. In all honesty its been about a week and its been very sporadic and not even daily so to hell with it. When she's in therapy we can address it then.
Speaking of therapy. She qualified for an evaluation with Early Intervention for what else, sensory. Her next appointment isn't until September 8 and I cannot wait until then. sometimes I feel like I am swimming in the fucked up parent pool not knowing the least bit how to control and parent her. Now that I've broken my leg its even worse. She knows I can't get up and deal with things so she just ignores me. I refuse to bitch though because I know she's still not that bad. She doesn't torment her older sister but if I were her, i would too. My older daughter Chloe is a prima donna and is easy to torment. All Piper needs to do is pretend like she's going to do something mean to her and she screams like a bat out of hell.
The other exciting news, or at least exciting for me, is we have a dermatology appointment on Monday and an ENT appointment on Tuesday. The derm appointment is exciting because it could lead to more specialists. I'm hoping eventually to see an immunologist and/or a rheumatologist. I have been butting heads with my husband to NOT treat her eczema this past few weeks because I want her itchy and showing her rashes. He didn't agree but what good is it to go to an appt with no symptoms! The ENT is exciting because she has gargantuan tonsils and has for the past year and a half as well. My pediatrician doesn't seem concerned by that and she keeps swabbing clean for strep. I feel like she is harboring something else in there that is triggering her flares. aaaaack. What a ride this is.
So that's what is happening in our P.A.N.D.A.S. world. There sure is a lot more going on in our lives but nothing that concerns this blog. :) Have a good night and would love to hear from other P.A.N.D.A.S. families.
Sunday, August 26, 2012
Monday, August 13, 2012
A PANDAS diagnosis - and not the cute animal.
I've started this blog to help document my youngest daughters PANDAS journey. PANDAS is constant change, hiding, molding, sneaking around in your child's body making them bat shit crazy. This is our story...
P.A.N.D.A.S. = Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal
Piper is the youngest of four kids at 3 years. She is full of spit and vinegar and her funny personality melts every ones heart. She is also silently sick and has been for about half her life. I am not looking for sympathy I am simply helping to create awareness (and document). There are children out there who are far more ill than my sweet Piper. A friends 1 year old daughter just had a heart transplant. That's huge! Our illness is a little less obvious. PANDAS stands for Pediatric Auto-immune Disorder Associated with Streptococcal. I know, your first reaction is "What?" Basically my daughter became infected with strep at some point in her little life and her body created antibodies to fight the infection. Well, those antibodies got confused and now they are wreaking havoc on her brain. There are a number of symptoms a PANDAS child can have. I dont' think we are as severe as some older children I've read about but then again, we don't know what normal is for Piper yet either. It's been a struggle watching for symptoms when I'm not even sure if they are symptoms! (we will cover those later)
A quick timeline..
March 2011 (spring break) - We are leaving for vacation tomorrow. I come home to find Piper waking up from a nap horribly sick. She was fine when she laid down and clearly she is NOT fine now. Tonsils are gigantic, fever is 104, listless but screaming, voice changing from the swelling in her throat and a lump under her chin the size of a walnut.....Dr.s out on Friday so we head to Urgent Care for an assumed Strep diagnosis. The urgent care Dr. took one look in her throat and said.."Oh my, this poor baby. I'm not even going to swab her poor throat, here is a prescription for amoxycillin. Please follow up with Ped. on Monday" I agreed that I thought it was too. I asked about the lump and she thought it might be a lymph node although oddly placed. Again, follow up on Monday. By Monday morning she wasn't any better if not worse and the lump is growing. We head in, blood work, cat scan and we are now diagnosed with a thyroglossal duct cyst. Fairly common but infected. We can't tell what the infection is because the urgent care doc didn't swab and since she is on abx already it is pointless. Bummer....so we head into the children's hospital for a week of abx therapy and surgery to remove the cyst. Shouldn't have any problems with this again. Missed our vacation but glad this didn't happen while we were gone. At this point a few friends have started with the "oh yeah, I know someone who had that" and after much googling, realize this is fairly common. She's all better and we are moving this to the memory box as it is over and done with.
Over the course of the next few months we had several ped visits for various reasons. I honestly can't remember what they were. Eczema, random fevers, vomiting, dark circles around the eyes, etc. Nothing would happen at the same time and it was always just ruled as viral. It was also noted while in the ped office that she noticed some tics and obsessions. I had noticed the first tic the day she got sick with the cyst. It was a random side movement of her jaw. Toddlers are weird, they do weird things and no two toddlers are the same. It's hard to notice things that are weird about your kid. Some were blankets that were super fuzzy and she would yell "TOO COMFY" She was obsessed with cleaning out her toe jam every day, several times a day. She walked on her toes. She shoved her hand down my shirt to snuggle my breasts. (this I didn't worry about as I nursed her so ....) She ate A LOT but was tiny. She only liked hard toys, not stuffed animals. She was be afraid of different things each week (monsters one week, tigers under her bed the next) All seemed potentially normal, some extreme but normal.
Thanksgiving 2011 - We are in San Diego for the holiday. Piper, of course, gets sick. Piper is always the one to get sick if something is going around. She's pretty sick again, swollen tonsils with white spots, sandpaper skin, fever and vomiting. It lasts about 4 days and I was just about to take her in and she starts improving. I am still not noticing her odd behavior. She's a weird kid, we just accepted that from her and laugh and enjoy her funny little quirks.
January 2012- After her bath I'm rubbing her down with lotion to help with her eczema that is isolated to her inner elbows and notice some bumps on her neck down behind her ear, I would say four or five. Call doc in morning, they are probably lymph nodes and they assure me its probably viral but lets take a look anyway. Blood drawn, and a few things are slightly off but nothing is really jumping off the report. WBC are the same as when she was super sick with the cyst which wasn't too high but still seemed odd to me. Nothing comes of it, we go home and are noticing her looking more and more ill. Pale, dark dark circles under eyes, fatigued and putting herself to bed, a child who usually eats twice her body weight is now not eating much at all and boom, a node pops up in her groin. This is where I don't encourage parents to google. The one thing that keeps popping up is lymphoma. I'm also learning it is difficult to diagnose. I'm freaking out at this point. Our pediatrician sees her again and we can't figure this out. She is going to give us a referral to an allergist but warns me that insurance probably will not approve it because she doesn't have any life threatening symptoms (asthma or anaphylaxis) Mind you, she is looking more ill by the day and people are constantly asking us what is wrong with her. We proceed to make an appointment with a children's speciality naturopath. That appointment is about 4 weeks out.
We see the ped again and more blood work. She is testing for a variety of things. Lupus, Celiacs, and a few others. She tested for specific allergy proteins to show up in the blood and some other antibodies I wasn't even aware of. Most of the tests came back normal. About 2-3 weeks after this blood test (it was the end of February) I get a phone call, on a Saturday, from our Pediatrician. I was hosting my 13 yo sons birthday. I inform her I couldn't hear well and she says, you better step outside. She then says my daughters ASO test came back. I have no idea what this is but it is extremely high. What does this mean? It means at some point in the last several months, she had a strep infection somewhere in her body and her immune system created antibodies to fight it off. There is a condition called PANDAS. With this condition, the antibodies get confused and start attacking the brain. When this happens it causes tics and OCD behavior. She then tells me that this is a clinical diagnosis and it is so new that some doctors don't even believe in it. She is going to be looking into it further to see what to do but really at this point all we do is watch and wait. She called in a prescription for antibiotics and instructed me to only get it filled if her behavior gets worse. She said to let her know how the appointment goes with the naturopath the following week.
Fast forward one week....we walked in to meet Dr. Sarah McCallister. She is reading over the very thick chart of Pipers and after 2 hours of visits confirms the strep diagnosis and insists we start those antibiotics immediately. We do and notice a minor improvement after the 10 day rounds of amoxycillin. My findings show that it just isn't strong enough. I'm not sold on the whole PANDAS things yet either so I'm open to anything at this point. We have seen Dr. Cookie Monster (my daughters name for her) about 5 times since then for follow ups and blood work.
Blood work has involved more than 15 blood draws from both Dr. Collins (the Ped) and Dr. McCallister (ND). Tests have included testing for both ASO and Dnase titers as well as CBC, food sensitivity testing, full work ups for deficiencies, lymphocytes, rbc counts, wbc, organ functions and more. I can't even begin to go through the pages of documentation.
We have also had the joy of getting into the OHSU system which is great. We have seen the Infectious Disease specialist up there Dr. Nolt. She quickly informed us that she doesn't believe in PANDAS but is happy to forward her findings to both of our Dr's. She also found out that Piper was full of shit, literally. She did an x-ray on her abdomen due to some swelling in her groin. All she found was tons of shit. Massive doses of Miralax later, we are cleaned out but finding that her bowels are just not working properly. Dr. Nolt has referred Piper to the Dermatology clinic and Dr. Collins has since referred her to an ENT. I'm hoping to start some scavenger hunt on the many Dr's of Piper one day...just kidding. it's exhausting to be chasing a diagnosis and feeling like it doesn't exist. Maybe Piper will never be normal. Maybe she just has a system that won't work properly. Of course as we are preparing to see all of these new specialists Piper is doing much better. Tics are almost non existent, OCD has almost disappeared. Oh, one more history item I almost forgot. A few weeks ago she had a weird choking episode. We didn't think it was a seizure and we didn't think she was choking but it did frighten us enough to take her to the ER. She was coughing/choking but had nothing in her mouth. It was like she could exhale but couldn't inhale. She couldn't speak for almost 15 minutes! It was scary. She was ordered an EEG (brain scan for seizures) which came up normal. Since then, she has had a few minor episodes where its like she is coughing/choking but she is aware and almost pulls herself out if it. One thought of mine is that she has such huge tonsils maybe they are messing with her breathing and voice? We will know later after our visit with the ENT.
So I think I am totally caught up and will update my blog as needed in shorter stories obviously. One last note....this week we have had house guests. My friends daughter reminds me of Piper but 9 years old. I told her she needs to get her tested for the Titers because sometimes its just a dose of antibiotics that can bring a kid back to normal. We will see if she takes my advice and gets her tested. If she isn't high on her titers than she should seek some other care to help her cope with some of her behaviors. Piper has been slowly getting worse this week too. More tics, more rage, more obsessions. (Side side note...I broke my leg 10 days ago and its hard to parent a high needs child when you are flat on your back. I'll keep you posted on that as well)
P.A.N.D.A.S. = Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal
Piper is the youngest of four kids at 3 years. She is full of spit and vinegar and her funny personality melts every ones heart. She is also silently sick and has been for about half her life. I am not looking for sympathy I am simply helping to create awareness (and document). There are children out there who are far more ill than my sweet Piper. A friends 1 year old daughter just had a heart transplant. That's huge! Our illness is a little less obvious. PANDAS stands for Pediatric Auto-immune Disorder Associated with Streptococcal. I know, your first reaction is "What?" Basically my daughter became infected with strep at some point in her little life and her body created antibodies to fight the infection. Well, those antibodies got confused and now they are wreaking havoc on her brain. There are a number of symptoms a PANDAS child can have. I dont' think we are as severe as some older children I've read about but then again, we don't know what normal is for Piper yet either. It's been a struggle watching for symptoms when I'm not even sure if they are symptoms! (we will cover those later)
A quick timeline..
March 2011 (spring break) - We are leaving for vacation tomorrow. I come home to find Piper waking up from a nap horribly sick. She was fine when she laid down and clearly she is NOT fine now. Tonsils are gigantic, fever is 104, listless but screaming, voice changing from the swelling in her throat and a lump under her chin the size of a walnut.....Dr.s out on Friday so we head to Urgent Care for an assumed Strep diagnosis. The urgent care Dr. took one look in her throat and said.."Oh my, this poor baby. I'm not even going to swab her poor throat, here is a prescription for amoxycillin. Please follow up with Ped. on Monday" I agreed that I thought it was too. I asked about the lump and she thought it might be a lymph node although oddly placed. Again, follow up on Monday. By Monday morning she wasn't any better if not worse and the lump is growing. We head in, blood work, cat scan and we are now diagnosed with a thyroglossal duct cyst. Fairly common but infected. We can't tell what the infection is because the urgent care doc didn't swab and since she is on abx already it is pointless. Bummer....so we head into the children's hospital for a week of abx therapy and surgery to remove the cyst. Shouldn't have any problems with this again. Missed our vacation but glad this didn't happen while we were gone. At this point a few friends have started with the "oh yeah, I know someone who had that" and after much googling, realize this is fairly common. She's all better and we are moving this to the memory box as it is over and done with.
Over the course of the next few months we had several ped visits for various reasons. I honestly can't remember what they were. Eczema, random fevers, vomiting, dark circles around the eyes, etc. Nothing would happen at the same time and it was always just ruled as viral. It was also noted while in the ped office that she noticed some tics and obsessions. I had noticed the first tic the day she got sick with the cyst. It was a random side movement of her jaw. Toddlers are weird, they do weird things and no two toddlers are the same. It's hard to notice things that are weird about your kid. Some were blankets that were super fuzzy and she would yell "TOO COMFY" She was obsessed with cleaning out her toe jam every day, several times a day. She walked on her toes. She shoved her hand down my shirt to snuggle my breasts. (this I didn't worry about as I nursed her so ....) She ate A LOT but was tiny. She only liked hard toys, not stuffed animals. She was be afraid of different things each week (monsters one week, tigers under her bed the next) All seemed potentially normal, some extreme but normal.
Thanksgiving 2011 - We are in San Diego for the holiday. Piper, of course, gets sick. Piper is always the one to get sick if something is going around. She's pretty sick again, swollen tonsils with white spots, sandpaper skin, fever and vomiting. It lasts about 4 days and I was just about to take her in and she starts improving. I am still not noticing her odd behavior. She's a weird kid, we just accepted that from her and laugh and enjoy her funny little quirks.
January 2012- After her bath I'm rubbing her down with lotion to help with her eczema that is isolated to her inner elbows and notice some bumps on her neck down behind her ear, I would say four or five. Call doc in morning, they are probably lymph nodes and they assure me its probably viral but lets take a look anyway. Blood drawn, and a few things are slightly off but nothing is really jumping off the report. WBC are the same as when she was super sick with the cyst which wasn't too high but still seemed odd to me. Nothing comes of it, we go home and are noticing her looking more and more ill. Pale, dark dark circles under eyes, fatigued and putting herself to bed, a child who usually eats twice her body weight is now not eating much at all and boom, a node pops up in her groin. This is where I don't encourage parents to google. The one thing that keeps popping up is lymphoma. I'm also learning it is difficult to diagnose. I'm freaking out at this point. Our pediatrician sees her again and we can't figure this out. She is going to give us a referral to an allergist but warns me that insurance probably will not approve it because she doesn't have any life threatening symptoms (asthma or anaphylaxis) Mind you, she is looking more ill by the day and people are constantly asking us what is wrong with her. We proceed to make an appointment with a children's speciality naturopath. That appointment is about 4 weeks out.
We see the ped again and more blood work. She is testing for a variety of things. Lupus, Celiacs, and a few others. She tested for specific allergy proteins to show up in the blood and some other antibodies I wasn't even aware of. Most of the tests came back normal. About 2-3 weeks after this blood test (it was the end of February) I get a phone call, on a Saturday, from our Pediatrician. I was hosting my 13 yo sons birthday. I inform her I couldn't hear well and she says, you better step outside. She then says my daughters ASO test came back. I have no idea what this is but it is extremely high. What does this mean? It means at some point in the last several months, she had a strep infection somewhere in her body and her immune system created antibodies to fight it off. There is a condition called PANDAS. With this condition, the antibodies get confused and start attacking the brain. When this happens it causes tics and OCD behavior. She then tells me that this is a clinical diagnosis and it is so new that some doctors don't even believe in it. She is going to be looking into it further to see what to do but really at this point all we do is watch and wait. She called in a prescription for antibiotics and instructed me to only get it filled if her behavior gets worse. She said to let her know how the appointment goes with the naturopath the following week.
Fast forward one week....we walked in to meet Dr. Sarah McCallister. She is reading over the very thick chart of Pipers and after 2 hours of visits confirms the strep diagnosis and insists we start those antibiotics immediately. We do and notice a minor improvement after the 10 day rounds of amoxycillin. My findings show that it just isn't strong enough. I'm not sold on the whole PANDAS things yet either so I'm open to anything at this point. We have seen Dr. Cookie Monster (my daughters name for her) about 5 times since then for follow ups and blood work.
Blood work has involved more than 15 blood draws from both Dr. Collins (the Ped) and Dr. McCallister (ND). Tests have included testing for both ASO and Dnase titers as well as CBC, food sensitivity testing, full work ups for deficiencies, lymphocytes, rbc counts, wbc, organ functions and more. I can't even begin to go through the pages of documentation.
We have also had the joy of getting into the OHSU system which is great. We have seen the Infectious Disease specialist up there Dr. Nolt. She quickly informed us that she doesn't believe in PANDAS but is happy to forward her findings to both of our Dr's. She also found out that Piper was full of shit, literally. She did an x-ray on her abdomen due to some swelling in her groin. All she found was tons of shit. Massive doses of Miralax later, we are cleaned out but finding that her bowels are just not working properly. Dr. Nolt has referred Piper to the Dermatology clinic and Dr. Collins has since referred her to an ENT. I'm hoping to start some scavenger hunt on the many Dr's of Piper one day...just kidding. it's exhausting to be chasing a diagnosis and feeling like it doesn't exist. Maybe Piper will never be normal. Maybe she just has a system that won't work properly. Of course as we are preparing to see all of these new specialists Piper is doing much better. Tics are almost non existent, OCD has almost disappeared. Oh, one more history item I almost forgot. A few weeks ago she had a weird choking episode. We didn't think it was a seizure and we didn't think she was choking but it did frighten us enough to take her to the ER. She was coughing/choking but had nothing in her mouth. It was like she could exhale but couldn't inhale. She couldn't speak for almost 15 minutes! It was scary. She was ordered an EEG (brain scan for seizures) which came up normal. Since then, she has had a few minor episodes where its like she is coughing/choking but she is aware and almost pulls herself out if it. One thought of mine is that she has such huge tonsils maybe they are messing with her breathing and voice? We will know later after our visit with the ENT.
So I think I am totally caught up and will update my blog as needed in shorter stories obviously. One last note....this week we have had house guests. My friends daughter reminds me of Piper but 9 years old. I told her she needs to get her tested for the Titers because sometimes its just a dose of antibiotics that can bring a kid back to normal. We will see if she takes my advice and gets her tested. If she isn't high on her titers than she should seek some other care to help her cope with some of her behaviors. Piper has been slowly getting worse this week too. More tics, more rage, more obsessions. (Side side note...I broke my leg 10 days ago and its hard to parent a high needs child when you are flat on your back. I'll keep you posted on that as well)
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