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bgbarnes

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Posts posted by bgbarnes

  1. Hello everyone! I know it has been a long time since I have been on the board- things have been well and manageable at it's worst. My Pandas DS9 is doing well and has some residual touchy OCD but is so so so so so much better. The latest labs show his Anti DNase B is in NORMAL range, ASO elevated but lower than the last test however the mycoplasma is up to 600 which is a big increase from the last labs over a year ago so he is back on 500mg zith and I can see improvements in behavior, temperament etc.... I still struggle with whether I should keep him on antibiotics or not all the time.. The mycoplasma have me the answer for now. He is thriving in school and is probably going to go to a new school next year that will let him accelerate in the subjects he needs to- 18 months ago when his standardized tests dropped by a years worth of knowledge I never knew if we would be back trying to deal with his acceleration needs. It is almost as if I have witnessed the brain healing right in front of me. My son will tell you the second IVIG made all then difference in the world. So we are really optimistic and happy. I have my son back!!!!!

     

    The question regarding throat clearing.... My dd7 had a staph infection on her leg( was given Bactrim) a couple of weeks ago but she has been clearing her throat ever since and I swear it coincided with the infection. I read that medicine can cause it but she is still clearing her that and has been off then medicine for a few days. I almost lose my mind every time I hear it- ds9 never had throat tics( he had eye blinking and lip licking at different times but not throat clearing- tics have not really been his issue) Of course I am trying not to freak out. She has also been a lot more emotional than usual.... Should I take her to my PANDAS Dr or am I over paranoid?

    Thanks

    Brandy

  2. Hi everyone-

    Yes he is responding like a normal little boy with strep- NO PANDAS symptoms!!!! He was not on antibiotic when he got strep- I had taken him off of it a couple months ago. The alternatives we use are- my Dad purchased and uses a Wavemaker. http://www.greatlifetechnologies.com/wm.shtml and the other one is Theta healing with Marina Rose http://www.dnathetahealing.com/. After the last healing with Marina we stopped the antibiotics- she is AMAZING!!! He also takes Krill oil, Calmzyme(Transformation brand),Vitamin D and different things when my gut tells me to add something.

    So I actually have 2 kids with strep( my daughter now has it too) and it is a normal house with 2 sick kids (actually you would never know they are sick)

     

    Brandy

  3. I have to share some good news...my PANDAS son has strep....that sentence may sound strange to all of you because it has always put the fear of God into me...however here is the good news. He is acting NORMAL. I told the Dr his stomach ache was not from strep because I "KNOW" when he has it due to PANDAS. His symptoms were really the exorcist syndrome, cognitive inflexibility and OCD. So it was pretty obvious when he was ramping up. We were both shocked when it came back positive because he is acting NORMAL!!! It means everything we have done is WORKING!!! We did 11 months of a double dose of zith. 2 IVIG's, supplements and a lot of alternative healing and I have to scream from the top of a mountain right now...he is showing NO SIGNS of a PANDAS exacerbation- wooooohoooooooo! A year ago I was depressed because I was afraid my son would never be normal again....I was afraid for what his future held...I want to share the beautiful possibility that is out there!

    Brandy

  4. Thanks everyone! I do think about the board often and hope and pray that each and every child will have a full recovery. I know that it is here when I need it!! I also know one of the ways to beat PANDAS is to go live and not let it beat you down. I feel like every day we LIVE and breathe is a day we won.

    May each and everyone of us have a Victory today, tomorrow and always!

    Brandy

  5. I know I have not been around lately, it is because we have been living our lives. DS8 is doing REALLY REALLY well, I would guess about 90%. We found out about PANDAS MARCH 29,2010 when a Dr suggested we look into it and it started an accelerated research plan by my family. He has basically been on antibiotics ever since and has had 2 HD IVIG. The results are unbelievable, my parents keep commenting how nice it is to have my sweet son back. He is still ornery and picks on his sister but he is so loving, cuddly and rational. His main symptoms were the rages, cognitive inflexablilty, sleep disturbances and what we called "touchy" OCD- his touching things evenly on both sides or a pattern. We have had a couple MINOR flares, but NOTHING and I mean NOTHING like it used to be. My son will say he feels great and that he thought at one point he was losing his mind- that is what PANDAS means to him that it was something that made him lose his mind. He has commented that he can feel when strep is around. I have said it before but after his first IVIG when I asked how he was doing HE looked at me and smiled and said it is all gone Mommy. I am not sure exactly what he was talking about but that was good enough for me.

     

    I notice some touchy when he is nervous or scared but it is really minor and I am probably the only one who notices it. He is now enrolled in an after school program that does advanced math...we did 2 HOURS worth of advanced math hoomework one night this week - with some complaining but it seemed like a NORMAL kid. I would love to find the Dr that thought he was severely impaired with ADHD at one point to tell him he read this week for 2hours and 45 minutes straight. He rarely wakes us up at night or wets his bed, if he does I generally can chalk it up to a loose tooth or a friend in the class had strep. There is a calmness to him. A peace-he seemed angry at the world for so long and now he is back to being a happy boy! We are still on the double dose (500mg) of Zith for his age/weight but when I went down and tried to go 3 days a week or to 250mg it started creeping back in and we went back for the second IVIG. we monitor his labs and that are dropping- very very slowly and have a number of things that are still considered high that we are going to keep fighting but I have my son back. He started playing sports again- I only have him go when he wants to-I will admit I am afraid for him to push to hard, get too exhausted, I don't want him to wear his system down, started piano lessons and he is active in cub scouts. He has friends, more than just the one friend he had last year at his old school and I don't hear from the school every other day. Between the teacher and what I saw at home she was my partner in identifying some things had changed in his behavior which led us to the 2nd IVIG. A far cry from the principal that was such a B*TCH last year. We elected to move my kids to a school that has another child with PANDAS in it and they have been AMAZING!!!!

     

    Some of you may remember some of my relatives were not very supportive. My soon to be ex-sister-in-law (yes that's right she filed for divorce)is not an issue because she is not going to be in my life anymore- or my brother's life which he now realizes is a blessing for him. The fact that my family did not want to be around her over her negative comments about ds- she said that I needed to stop looking for problems and deal with his behavior and spread a lot of negative stuff around the family about what she thought of PANDAS( not good) ironically if she only knew how much I had done over the years to deal with his behavior- that alone made me want to scream. We chose not to spend father's day with her(which was also my birthday) and she knows we ALWAYS get together and my brother told her we did not want to be around her.I had been bitting my tongue for years over little things she would dig at me but I took it because if my brother but when she went after my kid- forget it I was not holding back anymore and I did not need to ruin my birthday with her crap. Well our "shunning" her as she referred to it, tipped her over the edge and she asked for a divorce a couple months later. My brother stood up to her and within a couple months their marriage was over- don't get me wrong it was on a MAJOR downward spiral before that but I was supported in not having to deal with her crap and let me tell you how nice the Holiday's have been without her :). My brother is realizing it was a blessing and ready to move on with his life, he had been married over 20 years and his kids seem to be doing OK.

    What has been nice is since ds has been well we have been able to focus on my brother and his kids. The family crisis has not been ds....that may sound strange but OMG it feels wonderful not to be the one in crisis and to be able to be present for someone else.

    The other horrible thing that happened is my best friends husband dropped dead out of no where- IT WAS HORRIBLE, they had a 6 month old, had bought a house 2 years prior and had only been married a year. I have also been able to be a support to her. I have emotional bandwidth to SHARE!!! A year ago I could not have helped anyone because my family was in MAJOR CRISIS. Today I can share some of that time and energy with others.

    So I have been living, my son has been living and growing and thriving, my family has been recovering and enjoying the simple things in life. I hope that gives someone a little lift if they are in a dark place because a year ago I thought I was losing my son and I had no idea what was wrong. My mind thought the worst at times about what type of person he was going to be because the boy he is today had been missing for a long time and we are so grateful to have him back.

    I would not be here without the women and men before me who taught me how to fight this beast!

    Thank you!!!

    Brandy

  6. We just finished our second round of IVIG with Dr R yesterday and to my understnading the Prednisone and the IVIG have nothing to do with one another- so don't worry about interference. The IVIG is putting new antibodies in the the system for a long term result, the Prednisone is more about dealing with the right NOW and either shrinking inflammation or dealing with more immediate symptoms. We did the neurotransmitter test too- boy everything was out of whack for my son.....really helped put the full picture together for us.

    Is Dr. Infante doing the 1.5 over 2 days? IS he using Gammanex? Dr K believes the type of IVIG makes a difference and will only use Gammanex- We got Dr R to work with Dr K to follow his protocol exactly and he even made a comment about another patient has been doing better on the Gammanex than the other brand the child gets from another Dr.

    Good luck!

    Brandy

  7. We found out about PANDAS March 29, 2010....RAGES were his biggest issues- He had had transient tics in his life but not at the time of this exacerbation. I did not think he had any OCD- I thought we ONLY had the rages....the more I learned the more I was wrong. I learned that the cognitive inflexibility, the repeating himself, the being stuck was all OCD. Then I noticed he had a "touchy" thing that he had to touch things evenly or in a pattern- my heart sunk- I had been very very very naive that we did not have any of these things. Through these boards I also learned about sensory processing issues- had an OT test him- yep, we qualify for that too- however I I can now see it is worse when exacerbated-but I have the OT's report and it is with the school to get him help when needed.

    I took aggressive action-spent a lot of money but I would do it all again because we got results- we did Cunningham, Igenex, Mycoplasma testing, allergy testing etc... among a lot of other tests the immunologist ( who has become the local PANDAS doc) wanted to see .... I am convinced my ds8 has had it for years. His titers were high, igg, mycoplasma and Cunningham test showed him in the high PANDAS range. What is sick is I was relieved that he was in PANDAS range because I knew in my gut this was it as I had been searching for years for a reason- TRUST YOUR MOMMY GUT- it is the most powerful too you have. We also tested with a Gastro to see if strep was in his stomach, saw his ENT and discussed his sinuses- they were clear. We did a phone consult with Dr K. We eventually got to a double dose of zith per day ( 500gm for his weight is considered twice the normal script- but what the ###### is normal anymore when you are talking about PANDAS.)

    We did an IVIG July 13th &114th 1.5 over 2 days as per Dr K's dosage- had our local Doc consult with Dr K and he does it to a T- which saves a TON of money!! The "touchy" went away after a couple weeks- my son was more relaxed, had little defiance( my son is a challenge on his best day but you could REASON with him) We kept him on the double dose antibiotic until about 2 months ago- dropped it to 25-gm 3 days a week. Did great until a couple of weeks ago- started having that defiance, some cognitive inflexibility, problems in school ad in the last days or so some really subtle "touchy" that he was trying to hide etc... he was changing before my eyes again. I upped the antibiotic to everyday this week and scheduled an IVIG for Tuesday and Wednesday of next week. When I talked to him about it he said Mommy I can feel the strep around me, I said what do you mean- he said- you know it is that time of year when everyone gets sick and I feel different I feel anxious and I have to act bad when I don't want to......

    So looking back at it- the problems probably started shortly after the 3 month park post IVIG and that is when the antibodies die off- so it makes sense. We are no where close to where we were- he has had only 1 major cognitive flexibility episode and NO rages so we have made huge progress- a month ago I would have said the monster had left- at least temporarily :). Let's see what this IVIG does and see more progress-but I am so grateful I have done the IVIG because that really did more than the antibiotics alone did. I will keep you all posted!!

     

    Oh the most important thing is the day after the second day of his first IVIG I asked my ds8 how he was feeling ( he had a headache the first night)and he looked at me with those sweet blue eyes and flashed those amazing dimples and said- "it's gone Mommy- it's all gone." :)

    Brandy

  8. I have not been on the board in a while- life got in the way but I have to disagree with those that say don't do the test- unless it is a serious financial strain on you. From what I have seen if you can't get help locally eventually you WILL travel to an expert to get treatment. You don't want to have to wait for those test results once you have made the decision to do that- you will have wasted months.

    Part of our job as parents of these kids is to pave the way for the families that follow us, the original parents who had none of the resources that we do, have done that for us and it is time for us to pay it forward (IMO). We need to educate every doctor we touch, providing literature, test results etc... Maybe they don't get it the first time but if ALL of us keep hitting doctors with this information- it will have a profound effect on changing how Doctors react to PANDAS. Their initial reaction is FEAR because they DON'T know what to do about it- none of us like the unknown but we as the parents have no choice to attack it- they can make a choice to ignore it because they don't know about it but we can change that the more they hear about it- we can change their minds- there is evidence of that all over the country.

    The Cunningham test results did have a positive result in getting treatment for my son. I reacted quickly-we first heard of PANDAS March 20th of this year. I got immense amounts of information in a short amount of time and have a team of local doctors that will admit they don't know enough but are curious and most importantly WILLING. I could probably go to one of a number of Doctors that are not PANDAS experts for antibiotics in an emergency because of my determination. If we provide the successful results to many of these naysayers we may be the catalyst for the next doctor for taking this on as a cause. We will be doing our 2nd IVIG on Tuesday and Wednesday-last one was about 4 months ago and we have seen the 3 months shift as the healthy antibodies have left- but most importantly we are doing this locally at the Dr K recommended treatment dose (less than 5 miles from my home) because of the determination of a number of mother's in the area and a willing Doctor to help. Make no mistake the test results made a difference, not to mention it provides more cases for Dr Cunningham to cure this monster.

    Brandy

  9. I know I have been MIA with the new job, school starting etc... but I wanted to get back and update how ds8 is doing 8 weeks tomorrow post IVIG. FANTASTIC!!!! :D :D :D A couple of weeks a go we had an episode of Cognitive inflexibility- it was once we got through it- it was middle of the range not the worst but not the easiest. Yes his eyes were dilated, it was a Friday after the first week at school- at a new school (and I held him back because he missed SOOOOO much school last year- so stress was at at it's height.)The teacher had had issues with him that day at school- wanted suggestions for how to handle(my heart sank on that one but have not heard back since!)He has made several new friends in his class- he had one main friend last year that was not a "good friend" if you know what I mean. Mainly because the kids did not think he was a "good choice" since he was disruptive in class etc. He is overall happier, overall calmer. I can't see any OCD AT ALL. My son will say it is there about 2%. If he asks for the door to be shut it is because he wants privacy b/c he is changing clothes not because doors have to be closed. I will touch one side of his head to see if he "needs" the other side rubbed and he doesn't grab my hand and rub it on the other side anymore. I have not seen the hand touching evenly since a couple weeks post IVIG. I still think he has some mild sensory issues but I can definitely say they get exacerbated by PANDAS and are really really manageable now.

     

    The deep interest in reading is back- he read 4 biographies the first 2 weeks of school- in the classroom. He finished the Lightening Thief in a couple weeks. He still moans about homework but we are working on it.

    Tonight at dinner he sat during most of the meal- had normal conversations with everyone was not hanging upside down or invading peoples personal space. He even looked at my husband and asked him about his hunting weekend.

    I changed the rules to no TV after dinner and I did not get an argument from him- normally any change would cause a MAJOR disruption. I bought a great responsibility chart this week for both of my kids- He is asking to do chores!!!! I still have to ask him a zillion time to do things when he is interested in something else but I think that is about being an 8 year old boy more than anything else.

    We are moving to a prophylactic does of Zith. We had been on 500mg ( a double dose) every day and we are moving down to 250 3 days a week. However he gave me the 250 script as if we were taking it every day in case I need to double up for something.

    The school is responding wonderfully and already letting me know when strep is in the school.

    We are thrilled with the results and are VERY HAPPY that we did IVIG so quickly. I know some of you are out there in the rough part of IVIG so I wanted to make sure you got a good story too!!!

    Once again I would not have been able to get everything done so quickly without all of you!!!!

    Brandy

  10. We just got our first prescription for antibiotics. 500mg per day of Azithromax. Is this too much??? My DD8 only weighs 67 pounds.

    The plan is to try it for 2 months to see what happens.

     

    Hoping for serious improvements as she has been on the rampage today.

     

    God bless,

    Holly

    My ds8 is 72 lbs and we are on 500 zith we started out on 250 and it was not doing the job- when we upped to 500 we saw a big difference. We have been on it for about 3 months now- going to the Dr on Wed to see what we do next -we are 8 weeks out from IVIG.

    Hope that helps!

    Brandy

  11. My son age 6 was treated quickly for PANDAS this summer. He was treated with antibiotics and steroids. He is now at 110%. My question is about the large white spot that developed on his hip. The spot appeared during the first day or two of his PANDAS symptoms. Main symptom was spitting out all of his food and not being clean enough. He is all better but that spot is still there. Just came back from the beach. He is all tan except for that spot. Is this immune system related? Anyone ever heard of this before? The spot is about as large as the palm of my hand.

    My ds has a spot of vitiligo on his back and it is an autoimmune issue. It popped up a few years ago and don't have any idea how it corresponded with PANDAS. HOWEVER when talking to our Doctor we were able to identify that he already had an autoimmune marker- which seems to help the PANDAS discussion. My dad has it but both of my parents have 2 autoimmune diseases each...so he got the genetic lottery! LOL!

  12. Starting as early as September, flu shots/mist will be available so I thought I'd post this now. Last year, there were MANY discussions whether a PANDAS/PITAND child and/or family members should get vaccinated. But last year was different. There was the a separate seasonal flu vaccine and a separate H1N1 vaccine. This year they will be combined. So, I just want to give a heads up to those wo were strongly against the H1N1, but decided to get the separate seasonal vaccine. They are combined into one vaccine this year. I just want to make sure everyone knows what is being offered.

     

    Personally, my family will not get any flu vaccine this year (the did not get any last year either). I read in the paper that they have also increased vaccines required for school in my state. This is just getting out of control, in my opinion.

    We are definitely NOT getting any flu shots!!! Thanks for the heads up about the combined shots!

    Brandy

  13. Hi everyone, I am new to posting on this forum, but have been reading it a lot lately for help. I suspect my seven year old has PANDAS, but I am having trouble getting the diagnosis and treatment he needs. I even picked a doctor that was recommended by other parents on this forum. My son fits the profile for PANDAS and even has elevated strep titers! Our doctor however, thinks that low iron and sleep problems are of more concern than PANDAS and is dragging his feet with a diagnosis. He did give us the collection tubes and paperwork for the cam kinase II test, but the paperwork looks dated and I can not get in touch with Dr. Cunningham's lab. I e-mailed Dr. K, but he told me to find a doc in my area (Charlotte, NC), as it would be an unneccessary expense to come and see him. Here are my questions: How do I get my doctor to diagnose PANDAS? How do I get him to treat for PANDAS? How do I get the doctor to understand the the absolute ###### that we are living in? (sorry for the lack of better terms) The longer we drag our feet, the more worried I become. Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

    I don't know any Doctors in Charlotte- but I do have a Sorority sister who is a Dr in Sparta that has treated PANDAS patients before(found out on Facebook when I was posting about the Pepsi contest). Let me know if you want her information. I don't know how involved she is but she is aware, believes and is a wonderful woman. good Luck- keep fighting and trust your Mommy Gut!

    Brandy

  14. Brandy, OMG!!!! What an uneducated jerk this guy is!!!! If he says "If panda even exists as real" one more time I'm gonna spit!!!

     

    And then the nerve!!! "Who is your Dr. Cunningham and what is her education?"

     

     

    Sorry, not to sidetrack your beautiful news, but I saw your name replying and trying to set him straight.

     

    HE NEEDS A PANDAS PARENT INTERVENTION!!!!!!

    I think we all need to go knock on his door- what an A$$!!!!! I have seriously thought about calling him.... I have been so fortunate because ALL of the Doctors I have seen believe it exists!! I can't imagine dealing with Dr's that don't believe you on top of the horrible things we deal with with PANDAS....I think we should all drop our kids off at his house when they are in exacerbation and see what he thinks then! Give them a strep test and have them watch them get better on abx and steroids..... He should see the difference in my ds! AAAAUUUGGGGGHHHH!

    Brandy

  15. My son has been at camp for the past 2 weeks and normally I get calls all the time about his behavior...We had to talk to the Director this morning for my...DAUGHTER(who is my big rule follower so that was weird) but my hubby asked how ds was doing- we both were shocked :blink: when she said- he's doing great- I have only had to talk to him a couple of times and then he straightens up....OK that is not my ds normal mode- I did not think immediate response was in his genetic cod ;) e....then tonight I asked him to go take a shower....he was playing his ds...and he went right into his room finished playing and got in the shower- yes on the FIRST REQUEST :o !!!!! no touchy today- he seems so much calmer- unless he is really excited but then he is an 8 year old boy!!!

    Can you feel me dancing at the computer when I type? :D :D

    For those that are curious we are still on a double dose of zith- 500 mg once a day.

    I hope you all have these type of results!

     

    Brandy

  16. I know when I was in the midst of a bad spell with my son it was the positive posts that gave me hope- he really is doing so much better- once again- NO touchy at ALL today- at least that I saw- he also seemed a lot calmer. oh another thing today he was looking at something and said what is 3x3x3 I said you can figure that out what is 3x3 the next thing you know he said Oh 27---the math is coming back!!

  17. I have been MIA lately- I started a new job the day before we did IVIG for my son and have been SUPER busy. So far so good! We have had some flare ups- you can tell it is from turning back the pages- but they did not last long. He seems able to pull himself out of it faster than before. He had an episode of cognitive inflexibility the other night and was able to tell me "if he did not play the video game by himself before midnight he would go crazy, he went crazy in the past if he did not do what he said he was going to do"...shedding so much light on past meltdowns before we realized the OCD stuck thinking was involved. We got through it without him playing and without him "going crazy" and were able to talk about it in the morning and he agreed he was able to not do it and he did not go crazy!! He beamed with pride :)

    He and his sister get along better- I would say their squabbles are more normal sibling stuff with an occasional PANDAS flare involved. Still a little hyper, a little manic sometimes. The "touchy" thing is almost undetectable- (He had to touch things on both sides evenly) I see it because I know what to look for- only sometimes but for the most part it is GONE!!! He even said he could wear shorts without pockets- previously he needed pockets to be able to put his hands in to keep them busy.

    He asked to play Lacrosse again the other day and he even rode his bike- He still talks 100 miles a minute and thinks too fast for most people but that is probably just part of who he is- he is also making friends at camp!!

     

    So we are very pleased- I know we have a long way to go but there is an overall happiness to him that I love seeing!

    Thanks for all your support to get us to where we are!

    Brandy

  18. My DS had IVIG10 days ago. Lately he is is very whiny,inpatient and absolutely will not share with his sisters. Very extreme. He has started this new baby stuff when he gets upset. Last night he he became so upset he had a bloody nose. He yells at my husband because he was the one who made him upset," see what you did dad, you made my nose bled." We have not had that problem in a very long time. His blood pressure rises and causes his nose to bleed. It is so scary. Of course I am crying like a baby because I thought we were past that. I cant understand how these turning back symptoms are a good sign. Can someone explain this to me.

     

    I felt so bad yesterday because prior to IVIG my son was able to answer questions without becoming upset . We could have a pretty "normal"conversation. Anyway, I flipped out because he was upset and didn't want to talk. I told him I was his mother and he would talk to me. It was rude and disrespectful for him to treat me this way .OUCH!. He was crying my daughter was upset because I upset my son and I am upset, confused and exhausted.

     

    How do we know if our pandas children are being little turds or is it really pandas and they cant help it. I have been so impatient with him lately. I dont' know what to do. I feel like a horrible mother.

    We are 10 days post IVIG too and we have seen turning back of pages- not as bad as what you have seen- I was planning on posting our update tomorrow- I started a new job last week too so i have been really BUSY!! It has been in spurts seeing things we have not seen in a while- the repeating of things ....that had stopped once we got on the abx. It definitely does not even touch our worst times- it is just bringing stuff up from time to time not every day and the duration is not as long as it could be. We have seen some interesting progress in ability to communicate what is going on too.I will go into more detail in my post. I just wanted to respond to you because we are in the same timing! Interesting about the bloody nose- because I noticed dried blood in ds's nose the other day.....

    Hope it gets better soon!

    Brandy

  19. My son has trouble regulating the tone, volume and pitch of his voice.

     

    Is this common for PANDAS? Thank you for your input.

    If I had a dollar for every time I had to tell my son to stop yelling I would be VERY VERY VERY wealthy :lol:. I think with him it is more than a "boy" thing b/c it varies and is definitely louder at different times.

    Brandy

  20. We had horrible sleep issues for years from about 18 months old when I think PANDAS probably started.... we slept with my son just so we could get some sleep too. It took years to get him to sleep by himself. He was waking up all the time at night- some times several times- we did a sleep study and turns out he had Obstructive sleep apnea- the tonsils and adenoids did not look enlarged when you looked into the throat but when he laid down they somehow blocked things and he stopped breathing or had shallow breathing every 5 minutes on average. So combine that with a PANDAS brain that when in exacerbation- hallucinations- wild dreams etc... he was sometimes knocking on our door 4-5 times a night. For a long time I had to snuggle him to sleep- sometimes it took 45 minutes. POST T&A we have a boy that on a general basis can sleep by himself and through the night and I only snuggle for a few minutes and he goes to sleep by himself. I emphasis it took years to get to this point. Now when we are in exacerbation - the lights have to be just so- the door must be closed, he ALWAYS has specific soft pillows- a soft blanket and his lovey, a heavy comforter.

    Exacerbation signs for us are multiple night wakings, night sweats, enuresis ( which was constant prior to T&A.) So we have really had great success post T&A and the few times he does wake us up now we almost expect it because he might have had a period of cognitive inflexibility or a rough PANDAS symptoms day- or vice versa- if he woke up because he "saw a spider in his bed" then the next morning tends to be a little rougher.

    Good Luck!

    Brandy

  21. IVIG is scheduled for August 4th. We are very excited and hopefully on the road to recovery for DS7! We saw a Pediatric Immunologist/Hematologist who works for one of the major hospitals in San Antonio in their Cancer and Blood Disorder Unit. He is also a Professor at the UT Health Science Center in San Antonio. This guys reputation is huge! He has been doing IVIG for 25 years and this will be his FIRST IVIG for PANDAS! He knows Dr. Swedo as he was invited by the NIMH to serve on a committee in 2000 to review some of Swedo's research on PANDAS. He also knows Dr. Cunningham personally and said she is a first class scientist who knows her stuff! So basically he did not take the boys Cam Kinase tests lightly and found them to be very compelling. I discussed our phone consult with Dr. K which confirmed to us the PANDAS diagnose and told him his treatment recommendations. He said that the dose for the IVIG looked about right in terms of what he would do, but he said he doesn't know about the value of treating with long term preventative abx after IVIG. He said he would look further into it though. I need you guys to please send me any articles you have found that support this so I can send them to him!

     

    Unfortunately it is still a wait and see on my younger son, but we are so thankful to be moving forward with treatment for my older son since he is so much further advanced.

    Congrats! We are really getting Texas whipped into shape!! Can't wait to hear how it goes- keep us posted!

    Brandy

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