mom love
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Her next exacerbation was when she was 5. She had a sore throat, negative for strep but not sent to a regular lab to grow out. We did go in for a second swab that was also neg. We didn't know any better then to demand a lab culture. She presented 10 days with extreme separation anxiety that lasted for 6 months and affected every part of her life. Then remission again. She has had some strep with symptoms and she was treated with a normal course and did fine each time, except on amoxicillan which failed for her and she had some ocd while on it. Then it all went away on a new ab. She is now 8 with a new very bad motor tic that appeared suddenly and we did the whole blood work up with a pandas doc and it found her strep titers had risen only slightly, but did rise, and she was positive for mycoplasma pneumonia with no symptoms except for the tic. If we had done prophy zith she may not have gotten so bad, but we will really never know. So, our case is now pitands and she is on heavy abx with initial improvement being 90% with zith. Zith is good for myco p as well as some streps. Her initial trigger could have even been myyco p, we will never know.
I pray with all my heart that your case is mild with lasting remission. I highly recommend you get a pandas doc you are comfortable with, do all the bloodwork, and go from there. In the meantime, you could research OLE, and give her some children's motrin (dye free) if you see any symptoms return.
I don't know where you live, but here are a few pandas docs if you don't already know of them:
Dr. Trifilleti in NJ -
Dr. Bouboulis in CT -
Dr. Latimer in MD - long wait
There is another in TX
Search the doctors thread and perhaps post where you live and others can add local docs perhaps.
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The right antibiotic is like a miracle with all this. I would definitely recommend you getting to a pandas doc asap. Perhaps contact Dr. Trifilleti in NJ. He is a very good pandas doctor who does phone consults and can consult with your doc. IMHO, your daughter should have more zithromax, longer that is. I think that is a standard among most pandas docs. It takes longer for pandas kids to heal. zith is also anti-inflammatory.
p.s. the same exact thing happened to my daughter when she was 4, when she was finally given zithromax for a stubborn strep infection. Only 5 days and she had total remission after that for a while. It did unfortunately return. She was not on prophylactic antibiotics though. IMHO, you should seriously consider prophy abx, I'm sure your pandas doctor will recommend it. For zith, it is only 2 days a week. I have to say, I wish I had known then what I know now about the importance of it. Call asap for a pandas doc.
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Hi Stephanie,
I was thinking of you and your boys this morning, hoping they were doing better. I'm so glad.
I have been reading up on the blood brain barrier and the effects of closing and opening it (which is done on purpose with certain medications in certain cases with certain infections so that an antibiotics and other medications can get to the brain). What I have been reading, in the case of active bacterial infection, it may be best to leave it open so the bacteria can better be reached. IMHO, from what I have read about some of these bacteria, I am not convinced that this is only an antibody attacking the brain causing inflammation situation. Some bacteria can attach to any organ in the body and change the cell it is attached to in time. Molecular mimicry refers to not only antibodies attacking cells that look similar to the bacteria cells, but molecular mimicry also refers to when a bacteria attaches itself to a host cell, hides in it, and gets into places it shouldn't because it has changed to look like the host cell.
If I were you, I would save the steroid for after the infection is cleared if they are not back to 100% or their baseline by then.
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I have read on here about the spit test first thing in the morning, but how is it tested for at the doctor's office? Is it a stool test? urine? And can a conventional doctor do it or is it only DAN docs who are doing it?
Thanks
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Have any of you been on the omnicef along with another antibiotic at the same time?
Tampicc, why did they move to augmentin the second month instead of just staying with the omnicef?
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Dear Heavens, what is wrong with these doctors?? YES YES there can be a smell and one of our old doctors' office used to ask us that all the time over the phone when we called the nurses triage station. I could be wrong here, but it has been my experience that most doctors prescribe for the siblings who have symptoms when others test positive. Hello!!! If I were you, I would go this morning to a clinic like at CVS or Walgreens, have them re-swab, send the culture out, they do that too, and tell them that siblings have tested positive this week, she is miserable etc. Tell them amox has failed for them in the past and ask for omnicef or augmentin instead. And THEN keep searching for a new doctor!!! Try a family practice. They may have more sense in treating a family as a whole. Sometimes older docs are less reluctant to rx abx. Call Dr. B and try to get in sooner.
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Hi Stephanie,
That is a hard one. My dd had a worsening of symptoms and 3 weeks of augmentin was recommended to add to her already taken zith in case it was strep. The doctor said that if she improves you can assume it was an actual strep infection, and if not, more likely just exposure. My dd did improve, very slowly AND her strep titers rose after that exacerbation
so it was strep. Maybe give it 5 days and see how he is?? If great continue for 7 to 10?? Did you get a throat culture? blood work?
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Very cool beans Nancy! It gives us all hope! I pray the small increments of improvement continue!
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Jodie,
I don't know how it is spelled but it is pronounced "ver sed" and it makes you go to sleep.
I will also say that my pitands dd showed no symptoms whatsoever for 3 days after the surgery. Have no idea why. But then her tic did return, but it was more mild.
Another piece of advice, if you choose to look in your child's throat, it isn't pretty. Lots of white stuff which is how the throat scabs and heals after surgery. And the uvula was really swollen for a long time. Also, my dd did throw up once from getting up too quickly, and there was a little blood - normal if it is just a little. Drink lots of ice water. drink drink drink
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Hi Jodie,
Well, I've never heard it described that way before... but I would definitely say that any kind of antibiotics you can get before and after are a good idea to protect your child from whatever may be in the tissue.
I will tell you something we experienced. The anesthesiologist wanted to give my dd a "sleepy" medicine while in the waiting room. I asked why and what was it. It is so that the child is sleeping when they get into the surgery room. And they wanted to give her versed sp? and that did a number on my son in the past for another surgery he had to have. It was long lasting and he was an emotional and moody mess. I refused the med after speaking with the ENT about it and he was very comfortable with her not having it as she was not overly nervous or anxious. IMHO, I think they like to give it to make it easier on them in the surgery room when they put the mask on the child to put them to sleep. Certainly, if your child is a mess and the procedure would be close to impossible or emotionally taxing to your child, then certainly it could be warranted/necessary. I will say that without it our child recovered the quickest in the recovery room because she was awake and aware and not emotional or crying. She was able to take small sips of water regularly and go home earlier than the others, who all had had the versed sp?.
My advice would be to not make a big deal of the procedure leading up to it, emphasizing that it is easy, won't hurt much and is the best thing for him/her. The hurting part is a lie of course, but if you can keep the anxiety down, it will be easier on everyone.
My child only needed regular tylenol the night of and the next morning and then didn't need it any more. The drinking of fluids is very important. Just constant for days and days. I read on the internet about people who recommended hard foods to speed the healing process and get the throat working again. I completely disagree with this and believe the healing has to be slow and natural. It is important to eat soft foods and drink so psychologically they don't become afraid of eating, but you don't want bleeding to occur.
Good luck
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palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once
Franie, my 5 yo does this. I think it has been around about 6 mo or so. My son also has frequent urination for over a month now and very dark circles under his eyes. Urine and urologist work up normal. He is virtually impossible to get a throat culture from so we did strep titers which were negative and myco p negative. And my son did much worse with the urination while on the augmentin too! Why is that? He had two weeks of it in case we missed strep (sibling is pitand with strep and myco p)and he also had 2 weeks of zith to cover possible myco p exposure and he had no positive or negative changes while on it. He has separation anxiety that is new and these dark circles under his eyes. I'm not sure what to do with all this!!!
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My dh asked yesterday what I wanted for Christmas and this is what I said to him.
I don't have any because I don't want God to be mad at me for being too greedy.
I used to think life was so unfair as I watched my once beautiful son turning into an OCD monster who was lock into his own miserable world.
I desperately seek for help but it would always be like one step forward and 2 steps backward, in fact he was getting worse as he grew older.
We had to suffer watching all his young childhood friends going out to parties or taking AP exams or something productive or fun while our own once perfect son suffering because he could not let go of such a insignificant things in life. But everything changed when we have started pandas treatment.
It was like something had lifted out of his brain and his OCD began to subside and finally almost stopped for last 5months. For some unknown reasons, my son was able to pull his peer groups math( pre calculus and trigonometry) and age group English in between his OCDing and so with decent SAT score and B average grade he is bound to college comes next Sept. But even with SAT and all that, college would not have been an option for us if he continued with OCDing. IVIG and antibiotics made that all possible for us. My fear of going back to old way is beginning disappearing everyday as well.
What more can I ask? except praying that tomorrow is just like today.
Praise God! I pray that all of us find healing and recovery. I will pray for your son today pathfinder. I pray that this path of healing that you have found for your son continues to be clear and easy to walk.
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My understanding is that she is a very popular pediatrician in the New York city, especially with the Jewish community. She has a zithromax tapering protocol that she apparently uses for pandas kids but my understanding is that she does not do pandas consults, at least over the phone anyway.
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Wilma, have you tried giving her motrin? Could try around the clock for a couple of days.
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Thank you for your responses. Vickie, that link did find one close to me but, yes, I have to pay first and then submit for reimbursement. Nancy D, have you found that your insurance reimburses the same as regular pharmacies?
I will tell you all that I had an interesting visit with our pediatric urologist today. Without any prompting or questioning on my part, she told me that sometimes patients with normal tests have to look at food sensitivities to sometimes explain frequent urination. She used as an example juice boxes that are fortified with extra vitamins and minerals. She said that some kids' bladders are sensitive to all those vits and mins. She then mentioned dyes and additives in foods and how they are dumped into the bladder, sometimes irritating it and then the kidneys have to filter that. She mentioned that she is never surprised after halloween and Christmas to see an increase of urinary frequency in children.
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How do I go about finding a compounding pharmacy and how does that work. Do you just bring in the rx and is it covered by insurance just like at a local pharmacy? Can liquids be made drinkable without dyes and artificial sweetners or is it only made for pills?
Has this made a big difference for any of you and/or your kids?
Thanks!
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Thanks LLM! I actually suspect yeast in my son. He craves sweets, obsesses over them for short amounts of time. He only likes to eat carbs, mac n cheese, grilled cheese. What is the candida testing? Is it a stool test? I also suspect sensitivity to dyes. That said, I cannot go anywhere without ruling out infections. Our dd has surprised us with infections.
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I know that it is used for UTI's, bronchitis, and for a specific bacteria called pseudamonas. I've actually never heard of it used for sinus infections but I am so glad it is helping you!
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We're using a high dose of circumin with great results. If you search the net, you'll find great info on it's anti-inflammatory properties. We use a brand called Longvida but Enhansa is really popular through Lee Silsby pharmacy and some people are getting it covered by insurance. Just a thought.
-Amber
Amber, what made you pick the Longvida brand? Covered by insurance? Really? Is that through a DAN doctor? Are you using it for allergies or simply for anti-inflammatory?
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EA mom, my son is probably the hardest child in God's green earth to do a throat culture on. His throat looked good both to me and the doctor, realizing that doesn't mean much. The doctor tried, but with it looking good, we decided on the blood test, which he did fine with.
Colleen, he weighs 40 lbs, and he was on a full strep dose (5ml) of zith for a full two weeks.
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My 5 yo thus far non pandas child has started urinating frequently for over a month now. His older sibling has pitands, with both strep and myco p as factors for her.
All the urine cultures and analyses are normal, as was an ultrasound of his abdomen. We are going to a ped urologist to check any other issues as well. He was treated for two weeks with augmentin, getting worse with the symptom while on it, and two weeks on zithromax, having no positive or negative responses to it. He has started with some separation anxiety recently as well, really leading me to pandas or pitands for him as well. First ASO and dnaseb normal, will retest soon. Myco p not detected. I have a mommy gut feeling he may be reacting to some dyes as well, which had never been the case before that I noticed. I have to ask about compounding pharmacies to get no dye meds.
So what would you do? Would you try a different antibiotic? Would you just go prophylactic and give it time? Would you do a steroid trial? Would you try OLE?
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I would agree to stay on the augmentin if you see positive results. Did you make that appointment with Dr. L yet? I read she is booking out til Feb.
I am curious about your ped adding benadryl and magnesium. Why did she suggest that? And are you continuing those or are you still seeing improvements without them?
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I have read that dialated pupils are a sign of brain inflamation.
Update - now reacting badly to abx
in PANS / PANDAS (Lyme included)
Posted
I was thinking exactly what LLM wrote about having found your boy inside. You now have hope. That's a huge step, try to keep that in mind with the setbacks.
LLM's information about the charcoal sounds really good to me. I had not realized that about charcoal. I have been wondering about the possibility of herx or yeast in my dd 8. LLM and Stephanie, do you think it could soak up yeast in the gut as well? How would I give it if my dd does not swallow pills?
Momcap, I would say you could try the charcoal. If that is not something you can get or are uncomfortable with that idea, if I were you, I would go back to what was working, with the amoxicillan. Herx or not, those are some severe changes your child has had.
My nonpandas child had frequent urination for a long time, and in an effort to avoid having missed an infection, our doctor gave him 2 weeks of augmentin and he became much worse on it. Perhaps there is a dye or something in it that affected him. Perhaps it was a herx, I don't know but we did not want him on it for any longer. Our conventional pediatric urologist actually told me that children can have strong sensitivities to dyes and food additives in liquids (and foods I assume as well) and that alone can cause frequent urination (once all other things like UTI infections and urinary flow problems are ruled out). I did some research on that and salicylate sensitivity came up almost all the time with my search of dye sensitivity in the bladder. Our son had had alot of dyes and blueberries and pineapples all in a short amount of time. We have stopped all antibiotics and eliminated all dyes and most salicylates and he is better now. That could change tomorrow, I know, but perhaps some children have these sensitivities that eventually affect their immune systems that then contribute to the onset of pandas or pitands etc. For now, I believe my son is better on no abx and no salicylates. BUT he has normal titers.
With your child's high strep titers, I would say you definitely need to keep up an antibiotic for a long while. You could ask your pandas doc about full strength amox instead of prophy dose for a while to try it. Let us know what happens.