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trubiano

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Posts posted by trubiano

  1. Seven years ago I found this site when searching for a reason for my son's symptoms. Happily I can say we have kicked PANDAS' butt! Now I am having my own issues and doctor after doctor can't find a medical reason, so basically it's in my head. I'm hoping one of you great people can help me again. Short story, I have a tremor anytime some thing is injected into me. Now I have a new issue, when I eat soy or peanuts I have a horrible tic. I can deal with the food problem, but anyone have an idea about injections? You can take blood, but inject anything and my blood pressure rises, severe tremor, heart palpitations, and flushing. I have posted two videos to show what I'm going through.

     

    http://m.youtube.com/?client=mv-google#/playlist?list=PL3N_uDVF2wxXlgDh3NkJp18XqQxn1OIlA

  2. I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

    Have heard that warts are viral. Have you had viral blood panels done on him?

    We have been lucky that all Dr. Latimer had to do is to change antibiotic and last strep symptoms went away. Maybe I should be seeing a different type of doc too? I would love to hear what type of doc I might need to add to our list!

  3. A couple of thoughts - first off - my son has NEVER had an elevated strep titer - even in bloodwork taken on the SAME DAY as positive throat cultures with other clinical presentation of strep. So I agree with others that the lack of titers is not indicative of anyting.

     

    Strep has always been our only trigger as well - although again, I agree with others, that it can morph to include other various other things.

     

    Now - that being said, if strep has typically been your main culprit, as your ped considered strep hanging out in the nasal cavities? It's tough to culture, but on more than one occasion it was the culprit in a flare of my son's. We used a topical abx (muciroprin, altabax, etc...) swabbed lightly in the nasal cavity a couple of times a day for a couple of weeks - in addition to his oral abx.

     

    Nasal!!! The only place I didn't think about! Thank you!! Strep has always been our issue. No symptoms around others who are sick. You said its hard to culture. Should I skip my ped and go to an ent to swab? Thanks again!!

  4. I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

     

    Hmm.. We have no warts, but last year he did have to have 31 little ones burned from his arms, legs, and feet. Warts do not run in our family. They said he had so many because he scratched one ane they spread. Is warts common for other pandas children?

  5. Elevated titres do not necessarily mean you can rule out PANDAS. It is much more complex than cause/effect from active Strep. especially after time. Get him to a specialist who will test for other infections as well!

     

    My ped has a call into Dr. Latimer, but it could be months before she calls back(two months last time we called.) I am very lucky to have a doc here in Georgia where we live that will order any tests needed, but we are her only PANDAS case. What other infections should we be looking for? The first available appointment with Latimer was Feb, so until then who should we see? Last time I just ignored the tics thinking being school he was exposed to others, it turned ugly quick!

  6. First let me say I'm happy the bloodwork, urine and throat cultures are negative for strep! Now what??!! My son was on pcn for 4 years and the ocd, tics, hallucinations, emotional issues all came back. He ended up having perianal strep and he has been on augmentin xr and has been symptom from 2 years. Now the facial tic has started and every week something else is added to it. Example, started just a nose crunch, then nose and eye blinks, and now the neck. The only time my son has had tics is when there is strep. Any ideas what else it could be or what we should do?

  7. Two years and six weeks ago my ds (now 8) had a sudden onset of rage/anger/ocd/sensory things following a fever which have developed into what I believe is now Tourette's. I'm not sure if it was PANDAS or PITANDS but believe it was one or the other. If this whole thing began from infection, am I completely off base thinking it can be cured with nutrition? For the past two years I've been exploring allergy avenues/gut issues but have had zero results, though several drs/health care providers still tell me that treating food sensitivities will be the answer. What avenue do I begin to take if there is in fact an infection still causing these issues?

    Thank you.

     

     

    Hi, My son had all the same issues and antibiotics took them away. Four years later the OCD, tics, anger, etc. started again. We found he had strep growing again with no symptoms and he need a different antibiotic, which has been working for two years now. We have been very lucky and not had to go any other route other than the daily antibiotics and probiotics. Has this been tried for your son?

  8. Thank all of you! We would never change doctors, she helped my son when no one else did! I'm happy to hear this is just the "norm" and will just have my ped fax and update on his condition with what her plan is and if Dr. L doesn't agree to email them. Thanks again for the ideas!

  9. We see Dr. L - my son, age 6, had 1st IVig w/her 4 wks ago. We also see Dr. Bouboulis, Dr. Elia and Dr. O'Connor.

     

    Thank you for replying! Do you ever have an issue with getting a phone call back? We live in georgia and have seen her twice. I'm trying to figure out is it a staff issue. My ped has called with questions about continuing high dose antibiotic and also labs we should check. Hate to keep calling and bugging, but three messages(two from me one from ped) in three months. The staff just takes a message and says I should just make an appointment. I hate to pay all those travel expenses plus out of pocket for an office visit just to answer what labs do you want.

  10. Two years on Augmentin XR and doing great! Now facial tic starting this week. Heading to the ped for yearly check-up and going to ask for labs. My ped is great to order, but I need too explain why. Can anyone tell me what labs they get and why? I have read the above posts, but it would helpful to know why certain ones are needed. Thanks!!!

  11. I'd go with regular dosing of ibuprofen according to how much/how often the label says to give. If that lessens the headaches in duration, frequency, and/or severity, I would think this would be very good information to give the doctor when you see her. And, yes, many of us see a good deal of symptom improvement on ibuprofen.

     

    Thank You very much. We had a good day yesterday, no pain and it was a good day in regards to the compulsions and behaviours also. This morning however he has woken with head pain, so I will begin the Ibuprofen immediately and keep a good detailed journal of any changes.

     

    Thank You

     

     

     

     

     

    I hope things are better! I just wanted to say the stabbing head pain has alwayss been my son's first symptom before our pandas flare. Dr. Latimer explained that his immune system is trying to kill off brain proteins that mimick strep. Antibiotics to kill the true strep are needed. We also do ibprofin, but until strep is gone the pain continues.

  12. Hi, I tried to PM you, but it said you weren't taking new messages.

     

    I'm normally not on this forum and just saw your post. My mother went through 2 years of every test every doctor she was sent to could think of and she kept getting sicker and sicker. I friend told us about Dr. Laura Larson in Villa Rica, GA

    (770) 456-3737 ‎ . After the first visit she knew my mother had LD and was treating her before the tests even came back! Not sure where your friend is located, but Dr. Larson is worth the drive. We were at the end thinking no one would be able to help and she did!

  13. Phasmid, he has been complaining of abdominal pain! They did stool cultures last week and maybe they will find something. Dr. Latimer put him on such a high dose augmentin because he was so bad with tics, ocd, and hallucinations he made "Sammy" look normal. We see her again in a few weeks and hope now that he is better she will lower the dose. Thanks for information!

  14. Thank you! I took DS9 into the ped and told her about our issues. She had us give 4 stool samples and is testing for a few different things. I started giving him extra probiotic and that seemed to help the smell. He has been complaining of a sore throat for weeks and it's red, but strep culture is always negative. We even tried giving him benedryl incase he had some drainage we couldn't see, but still no help. It's just red, no white, which would make me think not yeast. Do children on high dose antibiotics have a higher chance of getting c-diff? We have been seeing Dr. Latimer and I guess it's time I found a DAN too. We have been luckly that antibiotics have always worked, but now we have other issues my ped can't figure out. Any DAN's in the Atlanta area someone likes? Something we are really struggling with is his need to eat. He sneaks food and even forgets that he has just eaten. I read most parents on here have the the problem of not eating, so we are blessed, but I wish I could figure out how to curve his need to eat.

  15. My DS9 has been on Augmentin 1000 mg twice a day since October due to strep in the gut. He has been basically back to "our normal" and just this week his stools have started to smell terrible again, a few tics are coming back, and he has become emotional. I wouldn't think strep has started to grow again with the dose he is on. Can anyone tell me what the symptoms of yeast in the gut are, how to test for yeast, and what the treatment is? Also, any other ideas of what could be causing this?

  16. Thank you!! I am going to stay strong and and go into this meeting knowing this teacher is wrong, not us! His teaching methods are not good for most students I would think. When ever I have come to school he has been sitting at his desk playing on his lap top or blackberry. I'm not sure why he refuses to change his teaching style for my son other than laziness. I will keep you posted on my Friday meeting. If you have any ideas on what I can say please post! I did find this online last night and thought it might help him to understand.

     

    The Orchestra Analogy

     

    In an orchestra there are many different instruments playing different parts. The Conductor keeps everyone cooperating and playing together. If the conductor left then all the instruments would start competing with each other and we couldn’t hear the real music.

    You have many thoughts in your head right now:

    The class needs to turn in their homework.

    You have to stop at the store on the way home.

    You have to make 50 copies but first you must meet with a parent.

    Family is coming to visit this weekend.

    Your “Conductor” works just fine and you manage each of these thoughts without them affecting the other parts of your day. You can keep them in the back ground until you need them.

    In a child with P.A.N.D.A.S. the conductor has disappeared. Every time a new thought or activity comes into his or her head the other ones just stop.

    Example:

    You tell her to sit down and do her math. The child next to her asks her to borrow an eraser, she happily complies. Another child shows her something just for a second. She completely forgets that you told her to do her math and starts a completely different project.

    Twenty minutes later you ask for her math and she says, “Oh I forgot!” and she starts to work on it again, disappointed in herself and feeling bad that she didn’t get it right.

  17. We have a 504 in place and it still has been a nightmare with my son's teacher! He is one of those teachers who does not teach. His method is to give the students a packet of worksheets to work on all week and then on Friday they get turned in. They are given a packet of 8 worksheets. Each worksheet has a file folder that hangs in a bin next to the teachers desk. Daily they are to get the correct folder for whatever worksheet they want to do, read the info inside(basically teach themselves), and then do the work. All you PANDAS parents out there can see the issue here! My son is confused and unfocused when I give more than one step, but he has to remember multiple steps for these worksheets and also do a journal entry. It's just too much for him to remember on his own. I have tried to explain to his teacher only one thing at a time. Please bring him the folder he needs, give him just one worksheet at a time, or let him work on things at home. Sorry to be so lengthy! I'll get on to my question! We are meeting with everyone involved in the 504 plan again to go over changes that need to be made. This teacher is pushing that my son be put in a special education class because he doesn't have time to watch over and redirect my son. My son is a straight A 4th grader(when work is completed), on the academic team, and a JR Beta Club member. How can I get this teacher to just do what my son needs, or should I just request they go ahead amd move him into special ed? I would love to talk with or email with anyones teacher who "gets it" and might be able to give advice on how they have changed their teaching methods for a PANDAS kid. Oh! I while I'm posting I would also like to give a update that after seeing Dr. L in October and getting put on augmentin 1000 mg x2 daily the tics are gone!! OCD basically gone!! Fears gone!! We see her again in April and I'm afraid to come off the augmentin, but right now we are great!

  18. I'm pretty sure we had peri-anal strep too!!! It looks like almost nothing - and I treated it with antibiotic ointment and it went away (although its unclear how long ds had it - he was 10 years, not really interested in showing mom this kind of rash!) and, I probably wasn't too consistent in my treatment..but OCD started a few weeks after that infection.

     

    I didn't know that peri-anal strep existed until recently. Also, doesn't raise one of the titers (anti-dnase b or ASO...can't recall which)...so doing titer test for it even more difficult. The pediatrician (or any of the 9 docs or so we saw) never asked us about rashes in this area. ..did ask us if DS had a sore throat before tics started (after I brought up pandas). I don't know why they don't ask about other kinds of strep - just ASKING us if ds had a rash at that time would have cut 6 mos out of time period to get dx and him on antibiotics.

     

    Is this first time your child on abx? What are your next steps//treatment plan?

     

    She said if it's showing rectally then it is colonised in his gut. Did your DS get treated with oral antibiotics as well? We have been on penicillin daily for the past three years, but Dr. L said it wasn't helping at all if it has started to show at the other end! She has put him on Augmentin XR 1000 mg twice a day to fight the infection for the next 5 months and then we will see her again to re-evaluate. She said he might need it longer to kill everything. I had taken my son to the ped several times telling her he has to have strep somewhere because of his behavior, but never was asked about his bottom. Just swabbed his throat and it was always negative. Dr. L said strep can also show up in the nose. Kid's with nasal sores and constant drainage usually test positive. We are still dealing with the tics and emotional issues, but hoping as the antibiotic starts to work he will start to get better! Fingers crossed!!

  19. Best doctors visit we have had in three years! Finally someone who understood what we have been going through. It felt really good to not have her look at us like we were crazy. I feel like the worst mom ever though.. My son has had a rash on his bottom for months that has come and gone. I kept yelling at him to wipe better, but turns out it is strep!! No wonder he has had such issues. Hopefully with the new antibiotic things will be on an upswing for us. Thank you to all who suggested Dr. Latimer!!

  20. I would take a hard copy (to hand the doctor) of a clear and brief chronological record of symptoms and illnesses that you have observed (in bullet form.)

     

    If you have pre and post handwriting or math examples, or grades to show the effect in school, may be helpful.

     

    Since you are out of state, during the appt. determine a step by step plan of what to do next and subsequently if necessary (prescriptions, etc.) Safe travels.

     

     

    Thank you!! I want to make the most of this appointment!!

  21. Not weird at all! My son has to lick everything before he touches it. It had become a real problem while using restrooms! I just try and talk him through the urge, telling him his mind is strong enough to control the thought. He has other urges too and I told him when ever he feels a need to do something to come tell me and I have been able to talk him out of it. The first few days you'll be bothered every minute, but as he sees he can control his urges he'll start doing it more on his own..

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