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lfran

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Posts posted by lfran

  1. Thank you. A test with an audiologist is set for next Tuesday.

     

    But....what happens if he *does* have hearing loss? What do they do? If it is caused by the zithromax, will it come back on its own?

     

    And..I assume it is safe to stay on the Augmentin, but I am feeling very cautious right now.

     

    Did your son's doctor tell you what to do if...?

     

    Thanks.

     

    Our pediatric infectious disease doctor recommended a hearing test twice a year if my son remained on azithromycin each day. There are a few rare case reports of hearing loss with the macrolides (primarily clarithromycin which is an older macrolide). I would definitely get it checked. I doubt it is the antibiotic but you should make sure and do a formal test with an audiologist.

  2. Someone recently posted that azithromycin (esp. combined with an anti-inflammatory) can cause hearing loss. Can you (or anyone) tell me the steps you took to determine this and what, if any treatment or follow-up you pursued.

     

    We noticed DS9 saying "What" an awful lot for one ear during a recent phone conversation. My ENT examined him and said there was no fluid buildup or other obstruction and sent him for a hearing test (happening next week). The ENT also did not think that azithromycin causes hearing loss, although some quick googling did bring up some case reports of azith-related hearing loss.

     

    He is also on Augmentin, so I took him off the azith and the ibuprofen, and I'm waiting to see what the hearing test shows. (Hearing loss runs in my family, though, so it could be completely unrelated).

     

    Can anyone help us out on this?

     

    Thanks.

  3. Us too. Usually a flare right around a lost tooth.

     

    Also, biggest exacerbation ever was a few days after a tooth extraction from the dentist with no prophylactic abx (didn't know he needed them. Now I ask for abx for every dental visit).

    Just to add to the tooth phenomena--YES, with each of the rapidly lost 4 teeth (last 9 months) our (younger) d has experienced "blips" in behaviors. It may not be noticeable to others, but as family we certainly sees the tie-in to tooth loss. --often a few days prior to the loss.

  4. Us too. Usually a flare right around a lost tooth.

     

    Also, biggest exacerbation ever was a few days after a tooth extraction from the dentist with no prophylactic abx (didn't know he needed them. Now I ask for abx for every dental visit).

    Just to add to the tooth phenomena--YES, with each of the rapidly lost 4 teeth (last 9 months) our (younger) d has experienced "blips" in behaviors. It may not be noticeable to others, but as family we certainly sees the tie-in to tooth loss. --often a few days prior to the loss.

  5. Do you know what the kg/mg is to be considered "high dose" Augmentin? Right now, DS9 is on 1000 mg Augmentin and he weighs 78 lbs. If I did the math right, that's 28.5 mg/kg. I want to try high-dose Augmentin, but don't know exactly what that is!!!

     

    Thanks!

     

     

    It is really refreshing to finally find a dr. that is willing listen and help. I got so sick of being told that my 14mos old was a liar and was over-reacting. Seriously?

     

    You were told that a 14 MONTH old was a liar and was over reacting? How does a toddler lie and overreact? UGH!! My son had PANDA as a toddler. He had chronic sinusitis and his behavior was unmanageable (biting, head butting, climbing on things, climbing out of crib, couldn't sleep at night) whenever he was off high-dose augmentin. Once he went on high dose augmentin he was a different child within 48 hours. I was told he was "aggressive", and "bad" at 14 months, and the adjectives just got worse as he got older.

     

    Your child is so fortunate that you are recognizing PANDAS now. My wish is for Parents of young children with PANDAS to one day have a book to follow - kind of "what to expect - the PANDAS toddler years"... to help sort things out!

     

    Keep notes on what you do. Maybe one day you will write the book!

  6. I am so sorry for all your stress and unhappiness.

     

    How is your child feeling? My DS9 has primarily tics, but he isn't particularly bothered by them -- just me!

     

    I know that mourning is important, but what your husband says is also valid. We have been dealing with this for many years, but in kind of an intense mode for 2 and a half years, and I keep reminding myself that it isn't life-threatening and doesn't cause him pain, and that we are fighting for him as best we can and that someday we will beat this.

     

    That said, I am extremely curious about the testicle issue because my DS9 had the exact same thing in March of 2008, in the middle of his highest exacerbation ever. We took him to the ER who did an ultrasound and eventually found nothing wrong.

     

    Many months later, I thought of this. He was never vaccinated for MMR, but when we did an titre challenge to MMR as part of his immune workup, he showed a response to mumps. Then I read that many people can have asymptomatic mumps. So, that is possible. BUT...I just read this right now when I was searching for verification of what I just typed .. strep (and staph) can cause orchitis (swollen testicle). GRRRRR! Here's the link: http://www.webmd.com/sexual-conditions/inflammation-testicle-orchitis

     

    My son also covers his ears at loud noises. We should talk sometime.

     

    I hope your appt goes well today. Since the wait is so many hours, can your son stay with someone for the hours of waiting and just be brought to you when they are ready? That will probably save both of you a lot of stress.

     

    Wishing you all the best. You and your son deserve it.

  7. We've tried lots over the years. Nothing makes much difference.

     

    He has cam Kinase of 139 and anti Dopamine 2 levels of 32000 -- so I think he's definitely in the PANDAS camp.

     

    Just looking for other things that might also help.

     

    Thanks!

     

     

    It is possible to pick up lyme or similar infection in any state -- but certainly more prevalent in certain places.

    I think for any serious neuro-psych symptoms, Igenex testing should absolutely be done.

     

    I don't know your sons symptoms, but if your son primarily has tics, with no other symptoms or illnesses, have you considered that it may be due to allergies -- food or environmental triggers?

     

     

     

    We are in Southern California, but frequently vacation (especially in the summer) in Arkansas and Philadelphia/NJ and Florida (scattered grandparents).

     

    I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know.

     

    My DS9 PANDAS is primarily tics. It has been going on for 5 years.

     

    Do you think Lyme testing makes sense?

     

    Thanks

     

     

     

  8. Oops.

     

    I didn't know about the antibiotics. Do you have to be off of them for the other tests also?

     

    Thank you to everyone for your replies. I spoke with IGenex and explained our story and where we live. They recommend the Western Blots to begin with but said to check with my dr to see what is best. Oh, the other thing they told me was that you only need to be off of antibiotics for 10 days if you are doing the pcr tests (whatever the heck those are!).

     

    SF Mom - Thank you for the info about IGenex holding onto the blood for 3 months. It's nice to have that as an option.

     

    Elizabeth - what did your son's rash look like? Our's is primarily on the arms (you can feel it more than see it) and is starting to go away now that we are both off of antibiotics.

     

    I just received my packet from IGenex to order the Lyme testing. Help! The order form looks sooo intimidating. Can anyone suggest which tests are the best ones to order without breaking the bank! My son and I are both getting tested.

  9. We are in Southern California, but frequently vacation (especially in the summer) in Arkansas and Philadelphia/NJ and Florida (scattered grandparents).

     

    I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know.

     

    My DS9 PANDAS is primarily tics. It has been going on for 5 years.

     

    Do you think Lyme testing makes sense?

     

    Thanks

     

     

     

    Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been.

     

    Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results.

     

    Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply.

     

    Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world.

    Do the testing in the meantime.

     

    PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with.

    But lyme and/or any of the coinfections are found in every state in the U.S.

     

    I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

  10. We are in Southern California, but vacation each summer in Arkansas and Philadelphia/NJ and Florida (scattered grandparents).

     

    I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know.

     

    My DS9 is primarily tics. It has been going on for 5 years.

     

    Do you think Lyme testing makes sense?

     

    Thanks

     

     

     

    Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been.

     

    Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results.

     

    Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply.

     

    Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world.

    Do the testing in the meantime.

     

    PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with.

    But lyme and/or any of the coinfections are found in every state in the U.S.

     

    I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

  11. You might want to look into Habit Reversal Therapy. The Wall Street Journal just did an article on it yesterday -- here's the link.

     

    http://online.wsj.com/article/SB10001424052748704913304575371502395023416.html

     

    Our PANDAS doctor is insistent that my son be in therapy so as to work on dealing with his symptoms when they do flair up and having strategies to deal with them. I totally agree and initially his therapist focused on his major anxiety issues. These have improved greatly through her work and our follow up at home.

    The big issue that causes a lot of social and school issues are his tics. He can be very disruptive and we have provided him with a great number of OT tools to help reduce or replace his tics with less disruptive movements. His therapist however has not previously worked with kids with tics. I don't really want to switch therapists as she is the one who told us about PANDAS and led us to a great doctor who diagnosed it. She has been seeking out resources and doing research to try and find good approaches for DS but has told me a few times that if I know of/hear of anything that has been an effective therapy tool for a kid with tics to pass it on. I thought I'd put it here to see if any of you had a positive experience with strategies or therapeutic approaches that help kids recognize when they are ticcing and then reducing or replacing that behavior.

     

    Thanks!

  12. Here is an anti-anxiety medicine you may not have thought of.

     

    I was put on atenolol (propanolol) for an irregular heartbeat, and noticed almost immediately that my high level of anxiety went waaay down.

     

    I asked the cardiologist about this, and he said that it is known to have an anti-anxiety effect in some people. (I think it is an off-label usage. I did some research about this and found it confirmed).

     

    It is a beta-blocker, and considered pretty safe.

     

    It might be worth asking about.

  13. I think I have noted some light-related issues. Too tired to go into now, but will tomorrow or soon.

     

    My dd has PANDAS but also a visual perception issue called IRLEN syndrom or Scotopic Sensitivity Syndrom which is actually a severe sensitivity to light as which causes many visual perception issues you all are explaining seeing in your children. I have mentioned this to Dr. T who finds a coorolation in some of his patients and light sensitivity. I do not believe the two disorders are related but i believe because of the part of the brain that is affected one makes the other worse. My dd is one of those children with the sneezing tic and it is sometimes directly related to the change in light as well as her PANDAS status at the same time. Very complicated I know but I am very familiar with this disorder because my son has it also although he does not have PANDAS. Please look this disorder up on the computer, it may shed some light (no pun intended) on the subject of visual perception problems. If any of you have any questions please contact me, I am happy to talk to anyone about this other bizarre disorde.--By the way the symptoms of Irlen definantly get worse during an attack of PANDAS.

  14. Hi all.

     

    Just asking this again, in a different way.

     

    DS9 (76 lbs) is on 1000 mg Augmentin (500 mg twice a day). Does anyone know, does this mean it has to be every 12 hours or can dose #2 be closer in time to dose #1. I think it "wears off" after about 8 hours and would like to know if anyone has been told how often to give it.

     

    Thanks.

  15. You know, I'm not too familiar with the OCD info, as DS9's PANDAS is mostly tics (although I wonder where motor tics end and motor compulsions begin for some of these kids. How do we tell the difference?)

     

    However, given that a lot of leeway is given to so many kids as "terrible twos" or "just a stage", I would think that a lot of childhood OCD could start pretty early and just not be recognized. I have read so many stories of parents getting an autism diagnosis for their child and then in retrospect realizing that the lining up of toys and things like that weren't just personal quirks, etc. I remember a friend of mine had a child who would eat only yellow things. No one mentioned OCD and I guess that phase passed -- but it just goes to show how normal childhood and OCD can overlap.

     

     

     

     

     

     

    lfran- What have you thought about the age of onset of "typical" OCD? I've read a few places 7, but most are 10 and over. Why do you think this isn't being raised as a PANDAS red flag? Aren't many of our kids developing OCD too young for "typical" OCD?

     

    And regarding IQ... I was told my daughter had co-morbidity of OCD, ADHD and mood disorder. When I asked why the cognitive decline, the loss of previously learned academic skills, the regression from the abstract to the concrete? Why were standardized academic and cognitive measures that began in the superior and above average ranges falling to the average and below average ranges? Our psychiatrist told us IQ decline was typical of children with co-morbid mental health disorders!!! I said "Really? I thought that could only happen with brain injury?" She said "Absolutely typical." grrrrrr :D

  16. He is, for a short time.

     

    It was prescribed by Dr. T, and others on this forum have said that they have done the same.

     

    He was doing so well, but last evening things went downhill and I'm trying to figure out why.

     

     

    He's on two kinds of antibiotics? I didn't know you could do that?

  17. Does anyone know how close together I can give DS9 his two daily Augmentin doses? He is on 1000 mg (500 two times a day). Since it seems to "wear off" in terms of controlling his behavior, I'd like to give one in the am and one in the early afternoon and figure he's not going to get infected when he's sleeping in his bed at night (he's also on zithromax, so that should also cover him infection-wise).

     

    I'll ask the doctor, but just hoping for some personal responses.

     

    Thanks.

  18. Are you using liquid or tablets?

     

    If it's the liquid, you could ask them to ship it to you unmixed and you could add the water yourself. Would that get rid of the red dye?

     

    Have you tried looking on the internet for a compounding pharmacist near you? There's an organization for compounding pharmacists (sorry, can't think of the name of it) but that's how I found a pharmacist near me. It's usually the small, family run ones that can do it. Our insurance covers the prescription too!

     

    I'm putting DS on a GFCG diet and removing all food dyes. I HATE pumping him full of the red dye in his azithromycin twice a week. How can I get it without it? I understand I can have it compounded, but I'd have to have it shipped to me that way. It expires so quickly I'd have to be having it shipped every week.

     

    Ideas?

  19. I agree with that. I think there is a real selection bias going on here, since it is the parents who are driving this and not the front-line doctors.

     

    I also think that in about 5 years, there will have been a sea change in diagnosis, testing, and treatment for childhood OCD and tics -- and it will have been because of parents like the ones in this group.

     

     

    I asked Dr. K about the intelligence issue from a different angle. I wanted to know how he could describe the phenotype of a pandas child as an infant prior to them having had the initial episode. He referred me to his single light switch; one wire in, one wire out; it gets overheated but no problems. Now he said imagine a panel with 500 switches, all those wires going in and out; that gets overheated and BIG problems because there are so many connections. I think he hypothesizes that highly intelligent children are genetically predisposed because they have many more neuronal connections to get overheated, crossed and catastrophe. So, when I wanted to know how he knew my child was fussy, intense, difficult to get to sleep, not particularly cuddly; that is a phenotype of highly intelligent infants.

     

    I suspect the "highly intellligent" child and "highly educated" parent describes the current PANDAS phenotype because we are more likely to notice changes in children with higher intellect and because parents with higher education are more likely to search the internet and try to find the answers for their child. My suspicion is that, one day - when we are really able to test for PANDAS- we will see many children from a wide variety of cognitive levels and a wide variety of socioeconomic backgrounds who have PANDAS. ... just my suspicion here

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