michele
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Posts posted by michele
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What are you all doing for attention and impulse for PANDAS kids? My son is on Intuniv 3 mg a day but still is acting impulsive and his attention and short term processing is slow. I just wish there was a better med to try but all stimulants made him manic and he has severe ADHD.
While we have never had large doses of antibiotics like Sammy, we did do the daily antibiotics 300 mg for a couple years Amoxicillin and Pen VK and Omnicef. We never saw great improvements while on them and he still had reoccurring episodes. Last Dec. we started adding multiple medications with a psychiatrist. Before that the neurologist had him on Abilify. We had upped it to 10 mg and it had stopped working after a year. The psychiatrist tried many stimulants and most of hem seemed to make him more hyper and impulsive. His attention span was also a concern to me because he couldn't stay on task at school and was falling behind. We did try Srattera when the concerta and adderall did not work. Strattera seemed to help but then he got bowel issues. Since he was on Omnicef and Strattera I don't know which was causing it but he was having diareah and his bottom got really raw. So we stopped them both. Then we went to Clonidine. It made him so lathargic but helped with the impulse. Since he also struggles with obsessive thoughts and anxiety we decided to try the tenex. It really has helped with focus and impulse and school work improved. Since his anxiety and OCD was still bad we added prozac to the tenex and also changed to Risperdal. Now he is on the three and is much better then before. I am hoping to get him off the risperdal but because he has bad meltdowns and anger I am scared to cut it out completely. You are right in that everybody responds differently and it is a game of trial and error to find the right meds and doses. I have talked to Dr. T and he said we can try the high dose Augmentin antibiotics. Maybe that is next if I do a phone consult or visit. He said he would help us to get him off the Rispedal. Also his encopresis is better now and so are the meltdowns that were a nightmare a few months ago.
Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah
If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.
We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor?
I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow.
We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin).
Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect).
He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery.
For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby!
So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!
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Lately several leading Dr's and several PANDAS parents are reporting their Dr's and psychiatrists and neurologists are seeing a correlation between PANDAS after strep and a reaction in the body called Conversion Disorder where the mind plays games on them and they are not able to walk or they may loose muscle control or stop eating or can't stop bark. it causes the brain to take over and make your body have compulsions and can even make you think you are blind and can't walk..and so on..it's real to the person but there is nothing really wrong with their body..it is a mental thing. It goes along with PANDAS..and a lot of Parents do not know this..and more and more children are having it..do some research on it..help spread the word on this because these kids that we think have just tics and OCD and compulsions are having this too..and it can be helped and finding the key to helping them is getting to know what is going on with them and letting them know this is ok and real and they can help control this.. Kids are not able to walk because of this and PT can help a lot with it..they loose so much muscle control..Please check it out..might help you are someone else you know.See More If anyone has access to this article I think it would be very helpful to see the connection of PANDAS and Conversion.
What is Conversion Disorder and How Can You Cope? - Associated Content from Yahoo! - associatedcontent
www.associatedcontent.com
Conversion disorder unfortunately affects children all over the world. It is defined as a type of conditions that has altered or complete loss of physical function.
Prospective identification and treatment of children with pediatric autoimmune ...... PANDAS and paroxysms: a case of conversion disorder? J Child Adolesc Psychopharmacol. 2008 Feb;18(1):109-15. Kuluva J, Hirsch S, Coffey B.
NYU Child Study Center, New York, NY 10016, USA. coffeb01@med.nyu.edu
PMID: 18294094 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/18294094?dopt=Abstract
http://www.medhelp.org/posts/Child-Behavior/Conversion-disorder/show/463076 Conversion and PANDAS in medhelp
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My son was on Omnicef 250 mg x 2 day for about three years. He did get some bowel issues but it could have been related to Strattera he was on too. It was not C Dif but he had a lot of trouble with pooping and smearing it on things and encopresis so we stopped both the Omnicef and Strattera. He did have a bad episode over the summer with hand foot and mouth and OCD symptoms returned and tics because his ASO was high. The ped put him on Amox clav for 12 days 800 mg daily. Then he went on Pen vk 250 x twice a day. He is still having issues and I would love to try azith to try to get rid of the risidual symptoms. We have never had any luck getting azith longterm. Why were you changing from azith? It does seem everyone has had different luck with different antibiotics. Just like no two PANDAS kids are the same, they don't have the same reaction to treatment. Too bad it isn't one treatment fits all though! It would make life easier. name='airial95' timestamp='1290437719' post='93341']
We weren't on Augmentin to start, we were on Azith, full dose for 3 1/2 months or so followed by half dose for another 5 or so. While on the half dose, we got strep 2x. Both of those infections we switched to Omnicef (and a shot of Rocefin) and his PANDAS symptoms cleared back to "baseline" fairly quickly (we wern't 100% at the time of reinfection).
We switched full time to Omnicef about 2 months ago or so on Dr. Murphy's recommendation. We're still seeing improvement, (we've been hanging around at about 85% or so, with some blips from exposures here and there), but it's different than on the azith.
With the azith, we would have stretches of time (a few days all the way to almost 2 weeks!) almost symptom free (his breakfast ritual would always linger), but when he had a small outburst - it lasted for DAYS before we got back to where we started. With the Omnicef, we're not having those long stretches anymore. We're having outbursts avery day/every other day or so, but they're "manageable". If he has an issue in the morning at breakfast, we can bring him out of it, and then he's fine the rest of the day. On the Azith, if he had an issue with his breakfast ritual in the morning, his OCD anxiety and tics were on high for a few days.
I sort of miss the stretches of calm, but this new pattern has allowed us to really work on what he's learning in therapy better.
Bottom line, if you see results you like with the Omnicef - consider keeping him on it. And I wouldn't be scared of switching it up, most folks on here had to try several with some/limited results until they found what worked for their childs needs.
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Be careful. Our district doesn't believe in PANDAS by the way they have treated me in the IEP. They are threatening me over his diagnoses being too many and what is next since he has everything under the sun? I am worried. If you know too much they will acuse you munchausen by proxy.
How'd it go today???
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Mediation bothers me because the school has their attorneys and you can sign away your due process rights with language you can't understand and get nothing in return. Have you done mediation and seen it work? Have you heard of facilitated IEP meetings? I am going to look for a ed lawyer that works on a sliding scale. I think we have thrown too many diagnoses his way in the IEP. I know too much about the disibilities and he has seen too many Dr's. I just wonder where the superintendent will go next.
Our district spec ed director went off on me in the IEP meeting and was shouting off all my son's diagnoses and said what will it be next, he has everything under the sun. Has everyone been accused of munchausen by proxy? I feel this is what he is accusing me of? Does anyone know what the freedom of information act regarding munchausen by proxy is? I feel I have given them all his diagnoses and Aspergers was after the PANDAS and Tourettes w ADHD. Now they think I am asking for too many services? They say they don't see a need for the help. He has an IEP but it has many loopholes in it. I brought them up in the meeting and he didn't like it. He was verbally abusive and agressive with me coming across the table with his hands flying in the air. He said we can go to mediation. What can I do?
I've been accused of MBP by doctors- well not formally accused- but its been talked about between specialists and our pediatrician.
But, for IEP's it doesn't really matter what the dx's are- they should be based completely on the needs of the student, regardless of the dx. I'd go to mediation. Its completely unprofessional of any school personelle to "go off on you." Get documentation of your child's needs and get services/accommodations to meet those needs. You might procure the services of an advocate, who knows the ins and outs of SPED and the IEP process to help you get what you need.
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Mediation bothers me because the school has their attorneys and you can sign away your due process rights with language you can't understand and get nothing in return. Have you done mediation and seen it work? Have you heard of facilitated IEP meetings? I am going to look for a ed lawyer that works on a sliding scale. I think we have thrown too many diagnoses his way in the IEP. I know too much about the disibilities and he has seen too many Dr's. I just wonder where the superintendent will go next.
Our district spec ed director went off on me in the IEP meeting and was shouting off all my son's diagnoses and said what will it be next, he has everything under the sun. Has everyone been accused of munchausen by proxy? I feel this is what he is accusing me of? Does anyone know what the freedom of information act regarding munchausen by proxy is? I feel I have given them all his diagnoses and Aspergers was after the PANDAS and Tourettes w ADHD. Now they think I am asking for too many services? They say they don't see a need for the help. He has an IEP but it has many loopholes in it. I brought them up in the meeting and he didn't like it. He was verbally abusive and agressive with me coming across the table with his hands flying in the air. He said we can go to mediation. What can I do?
I've been accused of MBP by doctors- well not formally accused- but its been talked about between specialists and our pediatrician.
But, for IEP's it doesn't really matter what the dx's are- they should be based completely on the needs of the student, regardless of the dx. I'd go to mediation. Its completely unprofessional of any school personelle to "go off on you." Get documentation of your child's needs and get services/accommodations to meet those needs. You might procure the services of an advocate, who knows the ins and outs of SPED and the IEP process to help you get what you need.
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Our district spec ed director went off on me in the IEP meeting and was shouting off all my son's diagnoses and said what will it be next, he has everything under the sun. Has everyone been accused of munchausen by proxy? I feel this is what he is accusing me of? Does anyone know what the freedom of information act regarding munchausen by proxy is? I feel I have given them all his diagnoses and Aspergers was after the PANDAS and Tourettes w ADHD. Now they think I am asking for too many services? They say they don't see a need for the help. He has an IEP but it has many loopholes in it. I brought them up in the meeting and he didn't like it. He was verbally abusive and agressive with me coming across the table with his hands flying in the air. He said we can go to mediation. What can I do?
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Has anyone ever tried this program http://www.learningrx.com/akron-bath/success-stories.htm'>http://www.learningrx.com/akron-bath/success-stories.htm to help with school learning? http://www.learningrx.com/doctors-only/7-the-autism-spectrum.pdf'>http://www.learningrx.com/doctors-only/7-the-autism-spectrum.pdf http://www.learningrx.com/ It is supposed to help ADHD, and spectrum disorders to learn and process material better. Also I have heard this week of a program called Brain Balance http://www.brainbalancecenters.com/. A mom traveled to Georgia from OH for the summer to do theBrain Balance program with their son. We really are struggling with attention issues at school and visual and proprioceptial delays. Does anyone have any ideas for techniques that have helped in the reg ed room? My 8 yr old PANDAS/ADHD son needs supports to keep him on task. He can do the work in a small ratio setting like with his tutor but in the whole group he is not doing well. I want to get him more help on his IEP so he can be successful in the classroom. He is already in OT and PT and tutoring. Thanks in advance for ideas.
Michele
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My son is now 8 but had his first strep PANDAS epsiode at age one year and one month. Now that was in 2003 and Dr's suspected PANDAS but did not know what to do other then give antibiotics to clear the infection. his titers were elevated but his EEG and CAT was normal. He had blinking, finger chorea,irritability, not eating, not sleeping, hyperness. As he continued to get sick his symptoms kept returning and lasting for about 5 weeks post infection. He seemed developmentally on time. Then at age 4 we gave more immunizations and a flu shot and he became like aspergers and adhd full time. The OCD came on over urination, touching, licking, chewing clothing, tics andtantrums. The ADHD didn't go away anymore like in the past. His fine and gross motor skills became delayed. At 5 he had to be put on meds for severe adhd at school. He still had tantrums regularly so he was put on abilify. The OCD and tics would wax and wane. The behaviors stayed. Fast forward, he is still having tics and ocd with exposure to strep. He takes a daily pen VK 250 x 2 day, and risperdal, intuniv and prozac. His ADHD interferes with school and home life. His rage is better on the risperdal. Motor skills are all still delayed so he gets OT and PT. We get him social skills help at school and privately. During exacerbations we take stronger antibiotics for two weeks like 1000 mg of Augmentin daily. Luckily he is a happy well liked kid. He really is dev delayed in maturity though.
I was wondering if anyone has any very young children with PANDAS? My son was diagnosed last January right when he turned 3. So far we have treated him 3 times, this last time the antibiotic didn't help much at all. My Dr. put him on Penicillin for 6 months and we just started that on Tues. Reading through these different groups and forums, I'm noticing most of the kids affected are school age. I was hoping to find a parent of someone very young like my son. Both myself my husband and my sons Dr. are kind of learning as we go with all of this, so really I don't know a whole lot about this other than what I've read online. Thanks in advance!
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http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf
If you PM me I have alot of info on IEP. We have had PANDAS since before he started school on an IEP in kindergarten. I can give you some tips. Ours is under OHI. He gets Math and Language arts with the tutor 3-5 days a week for up to 50 min a day. Lots of accomodations like extended time, not counting for handwriting, testing in small group, OT help, social skills help, preferred seating, work breaks, organization, daily journal between school and home. I could pull it out there are more. It has been a work in progress for four years. Every year it gets better. Just get things in writing. Their word doesn't hold up. Don't sign anything unless you agree completely. You can give PWN if you don't agree with the terms of the IEP/MFE. Because of his ADHD he really needs extra assistance for school work. We may be getting an aide next since he is not doing well academically with his IEP right now. Also we are in the process of getting an IEE done and a FBA. Remember they are entitled under IDEA to FAPE in the least restrictive envvironment and a specially designed instruction.
Michele
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My son has visual perceptial motor delays. He tests several year behind age level in the Berry VMI testing. We do Visual motor training exercises in OT and at home. He also wear glasses because of eye strengthing not for vision. One eye is stronger then the other and the glasses help to strengthen it. His vision tests good. His use of lines and spacing have always been a challenge. He sizes letters differently. Maybe this is part propriosensory. Word searches, hidden pictures, copying shapes, geoboards with rubberbands, have helped. He does something called Brain Gym. These are activities to wake up parts of the brain. http://www.braingym.org/
His visual issues became apparent about five years into the PANDAS. One problem is when he gets raged he loves to throw his glasses. He broke one pair in half. From day one he used the glasses on the ground when he got mad. He knew he could upset me! At $150 a pair yes I get upset and I can't hide it.
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Yes my son had his first episode at age one with tics and chorea but then went on to develop on time with talking and walking. However after shots at age 3 he started to regress and developed ADHD and impulse issues. Then he started having compulsions and tantrums that looked autistic when we did not go along with him. So yes I would say with each exacerbation his symptoms have gotten worse and his baseline has gotten back to a little less then typical. He now on a daily basis has motor delays, propriosensory issues and ADHD along with moods. When he is in exacerbation he is worse and more compulsions and tics and anxiety, however on a daily basis he still has small tics and attention trouble and moods. He could be considered aspergers but it is very slight and getting a diagnosis has been difficult on some tests like the ADOS. Some social delays but he is friendly and outgoing. It is his feelings that are easily hurt and sensitive and he overreacts. I have him in social skills group and OT weekly and therapy. I think he is improving but we are using meds for the meltdowns and ADHD and compulsions. Still the meltdowns do occasionally come through as he did last week when he refused to go to school when I wouldn't give him money for a bookfair. He is on an IEP for OHI and I work very closely with the school with his learning delays. A psychiatrist did diagnose him with aspergers and tourettes and adhd and ocd and pandas. It helps for school purposes to have them in writing.
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The longer my son has had PANDAS (7 and half years) the more his behaviors have become aspergers like. Now we are treating his sensitivities with social skills class by a liscenced psychologist bi weekly. He does get OT twice weekly for the motor delays and sensory. His ADHD is always present now also. He has tics and compulsions which could be tourettes since they are always there. I would say alot of these are comorbid symptoms of the PANDAS. Does your child have the stuck fixations and meltdowns? My son gets stuck on ideas and tantrums when he doesn't get his way. The only difference is he does talk alot and is not shy at all or withdrawn from people like aspergers people sometimes are. No two people on the spectrum look alike though and nobody is sure just what aspergers truely is. He is on risperdal for the meltdowns and anger and prozac for the obsessiveness and intuniv for the ADHD. With the help of the meds he seems pretty typical to me and the meltdown behaviors are less frequent. School has still been a bit of a struggle with his attention but he gets help from a tutor and social skills from the school counselor and OT. We have found the echos are tics.
What you are describing on the playground (singing the places he had been to) sounds a little like either echolalia or scripting. My son does this from time to time. I think I have pinned it down as a yeast or bacteria of the gut. But it can be purley pandas in some kids, too. Like you, when my 5yo does these kinds of things I think about getting another psych eval to see if we have moved into the spectrum, but then I think, what's the point? I have his issues pinned down to 3 things primarily: strep, yeast, bacteria. When and if I ever learn to balance and manage all that, there will be very little behaviors left that look like autism. That's where a good DAN doctor comes in...
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My son gets OT twice a week in 45 minute sessions. It has been very helpful for his large and small motor and visual motor delays. He also has propriosensory issues and the activities have helped with his sensory system and his balance. We have a very good OT privately who really works on specific skills and and he also gets it at school. Our OT works from a plan of care which really sets him up for success. They play alot of games and he really enjoys it. Dr. Murphy suggested OT or PT when we went to see her a few years back. I am glad she did. We are in the process of getting PT started for toe curling under and walking on them. This could be a sensory compulsion but it is damaging his toes and does increase after exposure to illness. He still struggles with tying shoes and doing buttons which is fine motor and handwriting on small spaces, however he is now riding a bike well! I think not all PANDAS kids have the motor delays but if they do it can be helped with OT. Someone on this board is a school OT and has given great advice on this topic before. I think it is Melanie. Hopefully she will comment here.
Now for behavioral therapy for my son, we have spent alot of time and money on this and seen little change. If they are in exacerbation they will not change anyways. We have found it more beneficial to do family counseling or therapy for the parents. It has been us who needed to make the changes to learn how to better deal with his behaviors. Social skills are important though for the kids. Our psychologist does a social skills group and my son has enjoyed it very much making friends and he works on social goals.
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Steph, I can relate I will PM you. We are living the same ###### with the opposition and rages, misdiagnosis and unknown treatments for years. My son also carries the Aspergers diagnosis if it is truley ASD or PANDAS rage not sure but the behaviors are the hardest symptom to deal with. It can wreck havic on your home and marriage and the siblings. I will let you know what we are doing. We have head the same holding it together at school and losing it as soon as he walks into the door. However he has slipt a bit at school a few times and they may see more then they are willing to admit.
Michele
Hi all!
This is my first time posting so I'll say Hi! and Thank you! for all your collective support and wisdom I have been drawing from!
My son just turned 9 and we have been dealing with PANDAS since he was 4. Of course, down here our first round of doctors/neurologist/psychiatrists/psychologists adamantly believed PANDAS didnt exist. Translation: they knew nothing about it so told us we were out of our minds. Happily, we persevered and have a great team, mostly up North - and have just started to see Dr. B in CT. My son also has Asperger's, so between the typical Asperger meltdowns and the PANDAS rages, we feel totally off the rails.
Starting last August (09) our sweet, bright, affectionate son once again started to backslide with great inflexibility (a "nice" way of saying oppositionality!) , tantrums, obsessing over computer etc;. He maintains beautifully at school but I literally could not get him to the car before he started to rage. Rages changed for us. They took on new, scary features, such as threatening to kill us, getting (butter) knives out of the drawer, acting possessed, swearing curse words I had NO idea he knew, let alone that he could be so sophisticated and creative with them. His pupils dilate and he talks in a really creepy voice. So yes, we slipped into the Exorcism Syndrome, though didn't have those words at the time. I and his younger brother had a strep infection in November that increased all of this, though we had Ben on weekly Zithro for a long time. We finally found out that he has contracted Lyme disease - which of course compounded everything. This sounds so cut and dry when I read it but it has been a living nightmare. All of our energy has been used to quell the rage, protect our 5 year old from it, live through them, try anything to help him contain them so he didnt hurt us or himself or his poor little brother.
We have not found a way to parent well through the rages. First of all, my husband finds it very difficult to see our son control it at school and when he gets what he wants etc; but not with us. The tantrum almost always follows a request for something that is denied, or a limit being set or a demand: ie: brushing teeth, getting dressed, turning off computer, not having another treat, I brought the wrong treat to pick up, anytime I say no. We are consistent but flexible, warm but firm, really knowledgeable at this point about all the challenges. Yet, it is so frustrating when the rage always follows these moments.b/c it still strikes the chord of a spoiled kid not getting what he wants. We KNOW thats not it, but it still pushes buttons, as does the disrespect and nasty name calling etc;.
So this is my question:
1. How do you protect any siblings from the rages and how do you explain it? How do you think it is effecting them?
2. How do you NOT lose your temper when it is the bazillionth rage of the day, you can get nothing done, the sibling needs you, and you are being "beaten up" verbally and sometimes physically? We end up bringing our son to his room, after giving him several options, and eventually if he cant stop hitting or hurting me or saying evil things, I close the door and hold it - which makes him insane but eventually it allows him to quell and return to a semi-normal state where he is soooooo sad and apologetic and says the most self hateful things no matter all my assurances and understanding. We tell him he's loved, that this is a brain sickness we are trying to heal, that we understand it feels out of his control, that nothing he can do or say changes our love for him, to remembe rthe imtes when he is his true self and this doesnt happen - etc etc.
There ARE times when we just lose it - and feel BEYOND guilty afterwards.
I would appreciate any stories, techniques, support anyone can offer. I feel so isolated even though I have many friends and family who care, but no one can relate to this bubble of torment we are currently living in.
Thanks in advance-
Steph
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Hi. I was wondering how you and your family had been. Where did you end up going for IVIG? Did he do better for awhile? Sorry things have gotten worse. Please keep me posted. I hope things improve for you all soon.
Michele
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thanks to all for the words of support. It really does help to cry with someone. He has turned away from me and is leaning on his dad, which is a first, but good - takes some of the pressure off of me and probably makes dad feel less helpless. He wouldn't go into the school with me to talk with his counselor, but was willing to go with dad. Dad is gonna see if he can get him to his therapist later today too. The school wants him to go back tomorrow but he is sick and I think its setting him up for failure. But the longer he's out the worse going back gets.. catch 22
Joan - I am so sorry to hear about your son. I have been wondering if the program you had him in this summer had helped. Have you tried getting him to write? It seems like a different function of the brain is being used and you could see the relief on ds after he finally got it all out. Can I ask - what did the school say about you taking him out? It feels like there's so much at stake now that it is high school.. I agree that the exposure is just too high. That's why we're trying for the half day. He said that was a 5 on his anxiety scale, and might be able to manage that.
Iowa Dawn - numb...I get that feeling entirely...scared and feeling like you can't live this way much longer - i get that too. we're going for the Igenex test as soon as he is physically better. I am very interested to hear what your lyme doc has to say. Can you keep me posted?
On an interesting note, I had a conversation this morning with his former therapist, who is an amazing OCD expert and running a hospital clinic in IL. He definitely thought he could help, but knows this has been going on for ds 8 years+ despite all our intervention, and started to talk about the new brain surgeries they have developed for intractable OCD. In one of them they actually go in and burn a small hole through the basil ganglia!! Scared the crap out of me, but he said he was just telling me this so I wouldn't lose hope that nothing else was left to try...
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Is anyone on the zith pill form? My son is 70 lbs. I just want a Dr. to work with our local Dr. We have traveled and we never had that consult happen before and then we were left to nowhere but to guess. He is on Pen vk 250 x 2 day. During flair ups he did Amoxicillin Clav 400mg x 2 day. He still has a head shake but his feet movements are better, not gine but less.
Oh, ok. that is very helpful, thank you. I will have them just send it home and mix it myself. How bad was your daughter? That really gives me some hope.
Michelle - Call Dr. B's office to find out about the phone consults.
Imkimi - My dd 55 lbs is on 7.5 ml of zithromax (strep dose for a normal 5 day course) every day for 30 days. It is the liquid from the 200mg bottle. It comes out to be a 300mg dose I think. You will have to either keep going back to the pharmacy to have them fill the bottles with water for you, or you can take the bottles home with the powder medicine in them and fill them with distilled water yourself and shake it really well. I chose to take the bottles home so I don't have to keep going back. It brought my dd back to 90 % by day 5 and we continue to waffle between 80 and 90% on it.
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How old is the child and how much does he weigh? I am going to take this back to our ped. Does Dr. B phone consult? Maybe he could talk to our ped.
It is a liquid I would assume. I have to pick it up. It is once a day and 200mg.
How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it?
Michele
And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.
So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.
This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.
Lisa
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How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it?
Michele
And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.
So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.
This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.
Lisa
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I have had rheumatoid arhtritis since I was sick at age 30 with strep. My daughter got scarlet fever the same time with strep. Currently my RA is out of remission and I am on a z pack for a sinus infection, predisone, plaquinel, shots of enbrel weekly and methothrexate. My inflammation markers keep increasing. I am thinking it is stress related. I don't know what the tie is to my sons PANDAS symptoms but I am sure there is one. He came down with PANDAS the exact time I came down wih arthritis. Maybe it was the same strain of strep. I had strep alot as a child, my daughter was a chronic strep case till her tonsils came out a few years ago. I know she rexposed my son over and over during her strep years. But it is all interesting in hindsight.
Thanks for the good relevant article.
I googled "lyme disease strep" and I found this article. I'm pasting the relavant paragraphs, but follow the link if you wan the full article.
I think this may be the key of our kids' problems with strep.
I wonder what exactly the mean at the end when they mention the "treatment altered form"... anyone???
http://www.encyclomedia.com/lyme_disease.html
Sleeper:
One of the sleeping antigens that is very hard to measure is streptococcus. It has been well established that the toxins from streptococci, as well as those from mycoplasmas, have an affinity for joints. We have found in the course of taking comprehensive histories of our patients that a tremendous number of them have had severe troubles with their sinuses or their tonsils or their ears, or have had scarlet fever or rheumatic fever-all streptococcal conditions. Strep is an organism that is very susceptible to penicillin, which is why rheumatic fever and scarlet fever are no longer the terrible menaces they were a generation ago. But even after it has been knocked out as a source of infection, streptococcus hangs on for years-in tonsils, around teeth, and in other hiding places-not causing infection, but serving as another source of antigen, or toxin, with that demonstrated specificity for joints.
In treating rheumatoid arthritis, when a physician gets to the point with tetracycline therapy that the mycoplasmas have been substantially reduced and further progress appears to be limited, it makes sense to probe the possibility that streptococcus is complicating the process. If a titer of streptococcal antibodies indicates that their levels are elevated, then both the mycoplasma and the strep can be treated at the same time, continuing tetracycline for the former and using ampicillin for the latter.
Nothing about rheumatoid arthritis is simple, and it doesn't necessarily stop there; the streptococcus often alters its form, which further compounds the problem. Treatment of the strep then takes one kind of medication, and treatment of the altered form requires yet another.
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Dr. Nevada Reed at Kids Link. However she does not take insurance. http://kidslinkohio.com/
There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum.
Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning.
Perhaps we can list the city/state, and name in the subject heading for ease of access.
TMom
Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.
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Dr. Nevada Reed at Kids Link. However she does not take insurance. http://kidslinkohio.com/
There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum.
Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning.
Perhaps we can list the city/state, and name in the subject heading for ease of access.
TMom
Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.
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We have had the same issues for 7 years. Neurologists saying they are tics and wax and wane. However, it started with strep and elevated stre antibodies. Everytime he is sick or gets fevers they increase. I know tics can wax during illness though. We did the Cunningham tests and were in low PANDAS range so that is also confusing cause it can also be also considered the tourettes/OCD range. My son also has anxiety and ADHD and compulsions. But the real factor is the correlation of the symptoms increasing after he is sick. He does toe movements and tics, does compulsions, has low tone, struggles in Math and Spelling and writing. All classic symptoms of Tourettes or PANDAS plus the anger. He has never gotten well on anibiotics but sometimes better with time he improves. He got really mean on steroids. Then illness strikes and we see the symptoms return worse then before. We test his strep antibodies and they are elevated. So we put him on a stronger antibitoic. We have only found relief with medications. I know some people are against using meds but that is the only way we have been able to treat the psychological symptoms of the rage, ADHD and anxiety OCD. He also takes daily antibiotics.
PANDAS symptoms are varied but there appear to be a core of symptoms, including tics/tourette-like behaviors (see lists in the "Helpful Threads" posts at the top of the Pandas forum--or on websites www.pandasnetwork.org )
In many cases the diagnosis is made in a clinical fashion, once you have seen (time and again) the symptoms reduce or abate with antibiotics--then you may have probable cause.
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My son has had PANDAS since age 1 with high fevers and strep/ear infections back to back. Now at age 8 he still has exacerbations when ill. His latest sice Aug. involves tics, hyperness, defiance, attention deficit, and compulsions with OCD. We have been really diligent about getting help from the school. OT for motor delays, PT for toe curling walking issues. He really struggles with fine motor and gets OT at school and private. His IEP at school is under other health impaired. He gets a tutor in Math and Writing, Spelling and handwriting at school. Math facts are really hard for him too. His visual motor skills are delayed. I also get him social skills at school and accomodations such as extended time, organizational help, a daily notebook between home and school, not taking off for handwriting, state testing accomodations in a small group, read aloud, extended time. I am in the process of having a independent evaluation done for him at the schools expense. We may get more services then if they are suggested by the evaluator. He scores in the average range IQ on the schools testing but struggles with daily work. His attention is short and he gets easily distracted and frustrated. Brain Gym is a program we have used to help with the right brain, left brain connection.We also go to a private tutor after school.
Doctors by State
in PANS / PANDAS (Lyme included)
Posted
Dr. Jan Kriwinsky Beechwood, Ohio.
http://www.pediatricplace.net/