vermontmoms

How do you deal with the behavior outbursts that our kids can have? Our son gets very obstinant and has tantrums to where he can't breathe and is very unpleasant to be around. He is 8 but it is like he is still 4 when these outburst happen. Last night he had one that lasted through basketball practice, which made us late to practice and still had him mad at bed time. So now to my questions.... Are there any good books that deal with these issues that are targeted for kids with issues and/or self-regulation problems? Does counseling or behavior therapy work? How do you deal with these meltdowns if you need to be somewhere? Should we just keep the child home? I told my SO next time he throws a fit like this we should just keep him home and the other should take his twin to practice. I know his emotions and needs overwhelm him and 90% of his reaction is out of his control but still I don't think it is right to allow his problems to dictate the whole house and cause others issues too (other boy is very anxious about being late). We just feel his issues are pulling the house apart and we need to learn how to cope and new strategies for dealing with him. Thanks, Jen

My son has everything that you are describing. He has the KP bumps on arms, shoulders, and face. He also has a scab on his cheek that he picks repeatedly. He has had it for at least 2 months now. I never knew it was a PANDAS symptom...I will try to get a picture of my son's for the picture library.

His ASO titers were not elevated last week when we did a blood draw but there were 3 dx strep cases in his class in the last 3 weeks.

How much olive leaf do you give? What brand? My son is not on abx right now and we are looking for anything.... Thanks!

Ok, we are at a loss.... My son had his MRI, they thought they saw a tumor on his brain near the right ear ( could describe the sudden onset of severe hearing loss in that ear). The sent his MRI to ped oncology and a radiologist that specialize in brain tumors; they consulted and said our son does not have a tumor but he does have a sinus that has not developed properly and looms tumor like but to not worry. Our (new) neuro said our son has tourettes/ocd not anything else but cannot explain the hearing loss. She also noticed all the tiny whit bumps on my sons skin and said tbat is caused from an overproduction and cannot be treated. She told us about medications we can use to control tics. But in the meantime referred us for an EEG to rule out seizures. To me.....this is total BS! I can't believe my kid has TS when his symptoms started after his first strep infection; around that same time we were camping and he fell back on a tile floor and hit his head (enter inflammation) which I feel helped the strep cross the BBB. Hence the tics that started a week later and the rapid in rise of ocd ( lining up every stuffed animal, x # of drinks a night, extreme sensitivity to temperature, rage behaviors, etc...) I know he also has myco, staph, and repeated strep which I feel have caused this decline in my sons health. We have seen Dr L and an LLMD and just feel we are not making any forward progress. I truly feel my son has an immune system problem that is attacking his nervous system. I think he may have a staph infection which is causing skin issues. I feel that allergies are also playing a role. So who do we see next? An allergist, an immunologist, a dermatologist, another PANDAS doc? Who????? I just feel we are waisting such precious time and matters are only getting worse whike we spin our wheels. Thanks for your help! Jen

My son also has had a scratching tic. My son had them mostly during the day. Nothing could stand in the way of his sctratching (ie. Walking through a parking lot, car coming...I would have to pick him up and carry him while he was scratching so he didn't get run over; he wouldn't scratching stop for anything). This happened alot in kindy and first grfe. Now in second he scratches his face and has several scabs. My son also has tons of the white bumps you are describing in his arms, under armpits, face and knees/shin area. When he started zithro the itching stopped. Now he is off abx and is back to scratching but mostly just his face now. Sorry I can't help but know you are not alone!

Thanks to all that have responded or PMd me, it really means alot! We go see his ENT tomorrow who will go over the MRI report. We also received a call today from neuro saying our sons appt has been moved from Mar. 23rd to Tues. We are so nervous but thankful for his new apoointment. Thanks again for all your support! We will update as soon as we know more...

Well, as you know we were referred (finally) to get an MRI. My son had his MRI today and blood work today. I am not sure of results but during the MRI the radiologist said they needed to add contrast to the test b/c they saw a growth/cyst pressing on his 7&8th nerve which maybe causing his hearing loss and new tremors. Does anyone know what this could mean? Has anyone's kid had an abnormal MRI? We find out official results on Thurs but we are very concerned to say the least! Any comforting words would be helpful!!! Thanks, Jen

Does anyone know of a good neuro in the Denver metro area? Thanks!

Since Nov. my son has had skin issues on his face. His look like chickenpox type scabs. He still has them two months later. In the past he had eczema, colic, gastro issues, etc. as a baby too. He is not on any meds right now but he was on plenty in Nov when they started.

He has been seen by Dr. L and treated with abx. She didn't feel IVIG was necessary as he had full remission from Mar-July on abx. The boys also had their camk run by Dr. Cunningham both were in the high range and indicated PANDAS. Dr. L is not seeing him right now as we moved to Colorado in July so we have been referred to Children's hospital here. Now about zith and hearing loss...is this temporary? He was on zithro since March of last year, however, we pulled him off of the zithro on Dec. 16th b/c his symptoms were getting worse and our doc here wanted to get a baseline and refer him to a new neuro. Yesterday he was not on the zithro and has been off for a month now. His symptoms got progressively worse in Nov. and were not rebounding on any meds which is why we removed the meds. Subsequently, his initial hearing screen was in Nov. at school at the same time the teacher saw a marked change. He failed the second screen on Jan 5th at school. Yesterday was a full battery of tests and he has significant loss in the right ear and his auditory nerve is not reacting to sound either based on the tests yesterday. Does this sound like a reaction to zithro? Thanks! Jen

Laura, It definitely helps knowing that we are not alone. My son's hearing loss is pretty profound; he will need a hearing aid if they can figure out why the nerve is not responding. If not, it may require surgery. Like your son he failed in 1st and then passed a folllowup test and has now failed his second grade screen. The hour testing they did at the specialist's office revealed mod to severe loss at every freq on his right side. Now about the movements your son had...did you ever do an MRI, CT scan or an EEG? If yes, what did it show? Do you or anyone else know if PANDAS kids have abnormal scans? Well, thanks again for your encouragement...it is very scary when you are in the middle of it all. The hardest thing is from March to July he was in complete remission and it was so great!!! Since Aug it has been a downward spiral and with these new issues we are really worried. Take care, Jen

Kimballott, Thanks for your encouraging words. It is so hard not knowing the real root cause of my son's tic/OCD/PANDAS symptoms. For me not ordering these tests is like trying to tell someone about a book by just using the book jacket only. You need to read the whole book before you can say what it is about. In my opinion, these docs need to look inside first, if it shows nothing then at least they have a baseline. We are so frustrated and are very nervous too. Thanks again for your prayers and words of encouragement! Jen

I have twins that have both been dx with PANDAS by Dr L. Two years prior to that dx my one twin was dx with OCD and tourettes. Over the last 4 yrs we have seen two ped neuros and several docs (ENT, DOs, and Peds). It has been one crazy ride to say the least! Fast forward to recently....my one twin that is more severe failed his hearing test at school recently. He went to another appt today with an audiologist and she is concerned b/c he has mod-severe hearing loss in one ear and also has nerve hearing loss too. They are concerned that something structurally in the brain maybe causing the sudden hearing loss. In addition to the hearing loss he is also spacing out at school and becoming forgetful as of Nov. his teacher said. He has also started having trouble with simple math (ie. Can't remember that 11-6=5) which is also concerning because he is in advanced math (in 2nd but goes to 3rd for math). He has been doing subtraction for years. He also has never had nightime accidents and has now had 5 since September. Behavior is also being affected (ie. Short temper, moody, ocd behaviors, tantrums, etc). To us the other major concern are his new movements. In the past he had typical ts type tics (blinking, squatting, neck roll, finger tic, facial grimmace, back/shoulder shrug, throat clear, snorting, hard sniffing, etc) BUT now they are more dystonia in nature (parkinson like arm tremor and head tremor). We are concerned as are his docs that he may have an abnormal growth in the brain or be experiencing seizures. We have been referred to the Children's hospital in Colorado. He will have an MRI next week and hopefully an EEG soon too. He sees a eye specialist tomorrow to rule out optic nerve involvment. As you can imagine we are spinning and are very concerned that our child may have had a tumor the whole time. But instead we thought it was TS or PANDAS causing these issues; a CT or MRI was never ordered by any Ped Neuro, they dx by videos and hx only. Has anyone else had something like this come up? Does anyone know of a good movement disorder specialist in Denver, Co? If anyone has anything that will help please offer support! We are pretty upset and will take any ounce of encouragement! Does anyone know if PANDAS can cause these other symptoms that he is having mow? Thanks for listening and any insight you can offer!!! Jen

Yes and no.... Yes we have been treated by Dr. L and are still her patients but we are now seeing another specialist that combines Dr. L's antibiotic protocols plus adds other treatments that are more homeopathic in nature. No, at this time IVIG is not something we are considering. My why is very long but Dr. L agrees for now. Thanks! Jen

Yes, our new specialist has treated other PANDAS kids and lyme kiddos too.

Honestly, just getting it off my chest was very therapeutic! Thanks for your kind words!!! Jen

Do you ever feel like you are ready to just throw up your hands and quit? I swear today was one of those days! Sometimes I feel like we are getting no where... We have been trying to heal our sons for 5 yrs. We have tried dietary changes, homeopathic meds, epsom baths, magnesium, etc. Then we tried a more conventional approach and trreated with antibiotics and such. Now we are trying another combination btwn homeopathic and conventional. And my sons still Tic... Maybe they do have tourettes, ocd, and odd like they were dx with 3.5yrs ago. Maybe I am causing more harm by trying all these other techniques/therapies.... All I know is tonight I yearned for ear plugs. I know this is not sympathic and is terrible to say but I could even show my love for my child tonight without my skin crawling from the snort noises and the sucking in noises. I know I am overly exhausted and a virus is causing havoc on everyone but somedays I want to just throw in the towel! So how do you keep going? Do you ever wonder if it is really PANDAS? Yes 3 doctors have told us it is and only one said Tourettes/OCD. But still I wonder.... Any encouragement would be fantastic. Any help in deciphering this road less traveled would also be welcomed!!! Thanks for letting me vent!!! Hope everyone else is hanging in there!!!! Take care, Jen

For those of you with tic'y kids have you ever tried using a TENS unit to over fatigue the muscles so they don't tic or get the urge to tic? Have you ever tried accupuncture? If yes, at what age did you try this and what results did you see? Now has anyone combined these treatments? I know when we were trying to get pg our fertility doc recommended this treatment for me to increase blood flow to my uterus and it worked like a charm! Personally, I think that kids suffering from motor tics may find some relief by utilizing one or both of these treatments. Thanks for any insight!!! Jen

I second the apple cider... It worked like a charm for my sons warts. I too had some Warts on my hands/knuckles and tried every over-the-counter solution and on from our health store....nothing worked. Apple cider vinegar worked in no time and our warts have never returned! Good luck! Jen

For those of you with tic'cy kids have you ever tried using a TENS unit to over fatigue the muscles so they don't tic or get the urge to tic? Have you ever tried accupuncture? If yes, at what age did you try this and what results did you see? Now has anyone combined these treatments? I know when we were trying to get pg our fertility doc recommended this treatment for me to increase blood flow to my uterus and it worked like a charm! Personally, I think that kids suffering from motor tics may find some relief by utilizing one or both of these treatments. Thanks for any insight!!! Jen

Our son threw up 3 times on this med and also developed hives. Plus it offered no improvement what-so-ever. Azith was great but now it doesn't work like it did in the beginning. I am wondering if we should try to remove all antibiotics for a while. He is already having lots of tics so what would it hurt? Thoughts?

Make him drink tons of water! Hydration is extremely helpful in getting out the blood quickly; it also helps to pump up the blood (ie jumping jacks, etc.) Our boys loved getting some of the stress out by pumping up the blood. Good luck! Jen

My son gets 250mg daily of azith and was on cefdinir (omnicef) 400mg a day. The azith worked wonders for us from May till late July then it all started back while still on azith. The cefdinir didn't help, caused him to feel sick to his stomach, throw up and now is on day 4 of hives. Needless to say we stopped that med last night. I personally would like to try augmentine xr for our son. We had 6 days of extreme herx with reg augmen. last Jan. But then he did much better. Right now I am leaning toward augmen xr or I may try to pull all antibiotics to see how he will cope after 4mths of antibiotics. I don't know but more antibiotics only made us worse so I am thinking of switching gears.

My son is sti having hives more like itching welts that appear and then turn into a hive. He can't come off of the benedryl or he gets all splotchy. Our doc pulled him off the omnicef last night. I am wondering if we should stop all antibiotics to see if that will help. I am also concerned if we pull him off he could get strep as Oct is his usual strep occurance. What would you do? I am wondering if his body is reacting to too much antibiotics... Any advice or been there done that suggestions? Thanks, Jen