T_Mom

Hi Melanie, These are the difficult type of treatment decisions we all wrestle with certainly. I share your desire for clarity on the decisions as so much is unknown. For us, this forum has been a wonderful resource allowing us to sift through the experience of others, even if our children have symptoms which are different from one another. In our case, it has been trial and error and "discovering" what made a positive difference along the way. Quite honestly, this year I have become convinced that antibiotics have anti-inflammatory properties. One doctor had mentioned this to us about Amoxicillan, though I have not seen any "proof", this makes sense to me now that I see our daughter's positive reaction to it, as well as to the steroid burst in her case. I wish you all the best as you help your child through this difficult time.

Hi Colleen, Is that what you ask for an "upper respiratory culture" ? I have seen 48 to 72 hour cultures mentioned...Should we be requesting one over the other? Is there a difference? Thanks so much--

We had the therapist come to the school to meet with the teachers and principal to try to work out an understanding re: accommodations (private school.) We needed someone other than us explaining it-- In a public school they should be required to accommodate if necessary under other-health-impaired. I agree with you DCMom -- The absolute priority is the child's health, rest, and well being. Not homework. Stress is not worth.

Hi Mom2Ty-- Can you give a link to the study you are referring to or more information? I cannot locate it via NIMH website. Thanks so much--

Hi BronxMom-- Do you think it is that he "won't" write or that he "can't", or even--perhaps can't write as well as he wants to--so he is refusing? In any case, my own child hit a wall with writing. After much discussion with the school (re: OCD issues, PANDAS) the teacher informed me that they had decided to no longer grade our d's writing, and would put NA on her report card for the trimester. I was relieved at that point, as it was a difficult symptom time and our d. did not need any stress, at all. We believed she really could not do it at that point and that it was just not worth the battle for her. We also worked out a "time" limit on homework with the school and the agreement that she could stop homework when she got tired. This was a tough one, but they agreed to grade homework on what came back, and not worry about what was left undone. If your child is ill, they are ill. Neuro-psych issues as well as physical. The school is keeping a weekly checklist of OCD behaviors for us to chart how she does week to week to compare. I hope your teacher will be understanding. T.

BronxMom--Our daughter didn't have alot of antibiotics either (that I remember!) when young, nor do I remember taking anything at all when pregnant...It would be interesting to see what your dentist says tomorrow-- T.

Thanks Caryn and Dedee--I will ask the dentist re: celiac, though--thankfully, no other digestive indicators have ever been detected. The flecks of white are on permanent teeth and have been there from the start. Baby-teeth were fine so it would seem to indicate "something" had an effect on tooth enamel development as the dentist told us.

On another thread Lacy posted: Between me and DH, we have fairly strong and healthy teeth. We've noticed DD's two front teeth are slightly discolored. I don't know if it's because we're on well water and/or a mix of the different medications she's been on. They're her adult teeth and I'm really interested to hear what the dentist has to say about it. I wondered if anyone else has noticed anything like this with their kids? Yes, our daughter's permanent teeth have enamel uneven-discoloration, little white uneven spots on some teeth. These were on the permanent teeth since day-one. She also has a back-molar that is very misshapen. The dentist told me that the discoloration was most likely due to exposure to antibiotics when I was carrying her, or possibly when she was an young infant? The misshapen molar he said was due to possible birth trauma--which arrested tooth development slightly (on that one tooth?)

Hi Noelle and All-- Noelle, some of the best advice I have gotten was reading a post by EAMom--reading that therapeutic strength Azithro for an extended period had been helpful-- I could not get Azithro at the time, but we did have therapeutic strength Amoxicillan. We decided to try that for a month. Our daughter improved so much from week to week that we continued for three+ months on therapeutic strength Amoxicillan (as well as probiotic drinks 3xs a day). Since her symptoms have plateaued now for a few weeks, after a steroid burst last month, it seems to be time to move to half strength Amox. The effects of what I would consider brain healing--(after a bad time at Christmas which set her back) the effects for our daughter from the Amoxicillan and then steroid burst have been dramatic. I am not recommending, just wanted to share what worked for us. Her classroom teacher told me in January that our daughter was "the worst writer in the class". April 3rd the same teacher told me she was like a different child, Math and Writing much improved. I would say she is 98% now. We have also done Omega 3s (Nordic Naturals EPA-Xtra, 2 capsules a day for about 1500mg total) Vit. C 1000mg, and low level Prozac. Someone had told me Dr Murphy recommended heavy on the EPA to DHA for Omega. Last year a friend, who was a former-nurse, had questioned why we didn't just do long-term full strength antibiotics to try to clear her. Now I wish we had done this sooner, for us this was encouraging.

Hi Chris, That is great news-- Just wanted to add that from our experience, with an older child (11), it can take a little longer to see the full effects after a steroid burst. (Dr. K. had told us this prior to our first burst this summer--and he was correct.) We just did one (second one) and our daughter had a very good response about 3 weeks after the steroid burst started. She is about 98% clear. Dramatic change in drop of OCD, clear thinking, and focus. A dramatic change was seen at school. A week ago her teacher told me that our daughter was able to do her schoolwork once more, math and writing were done correctly and in class. We see a dramatic difference in her handwriting. She has not been this clear for months.

"Bloodwork (ASO) has been tested the last 3 mos., April, March, Feb. (1043, 1482, 1309). Lyme specialist thinks we may be battling PANDAS and switched antibiotic to Zithromax (last 2 mos.). Have called and enrolled in a NIH study being conducted in Bethesda, Maryland. Study is research and not treatment based, so I'm not sure how much this will help us but hope it benefits the ongoing research on PANDAS. Dear Mom2Ty, I am so sorry you have been going through this horrible time--Lyme disease was suspected with my daughter's illness at first, (but negative), I understand Lyme can cause a variety of issues. Can an elevated ASO titer be the result of Lyme disease ??? If you have one, would you mind posting a link to the NIH study--is it the riluzole (sp?) study for OCD? Has the Zithromax been therapeutic strength for the last 2 months?? any changes with the OCD as a result?? We have the names of a few doctors in the Washington area, I will PM you-- T.Mom

Yes, similar issues in our family re: phenotype. Definite OCDish tendencies in the family, though never diagnosed officially, but apparent. Lisa --your post reminded me that my own mother was diagnosed with rheumatoid arthritis, interesting.

oops, sorry--I just reread your post. My note may not apply afterall. How did your appt. go anyway? Take care-

BronxMom, How did the appt. go? Perhaps you could request for one month at a time-- We actually tried therapeutic strength antibiotics for our daughter for one month (at first) and the change was so evident that we then requested to continue. (I had thought one month would be it--) If it makes a significant different for your child then you have information to decide with as to the next steps. Take care--

YES, we all should do this. Thank you dear Nicole and family for sharing your experience.

Thank you so much for posting. So good to hear your positive experience. May I ask, did your son have OCD symptoms at any time with the tics? Was he ever tested for strep (culture or titers)? Thanks again, please do keep us updated. All the best--

Hi Claire, That is good news that you are seeing an improvement-- Re: length of time on therapeutic level antibiotics, from our experience 3 months on Amox. has helped...we see improvement. To help heal we continue to give omega 3 fish oil, vitamin D, vitamin C, plenty of sleep and rest -- rest has been very important for our d. Probiotic drinks through the day. Strep cultures have been done randomly but seldom, only with exacerbations (I wish we had done a better job of tracking these to see if there were fluctuations.) You ask how long does it take to recover from a "bad" episode?...I am not sure that our d has fully recovered from last summer. Her ability to express herself in writing and her handwriting is not like it was, though I see a marked improvement in many things since starting and continuing Amoxicillan. Take care--

Mar 11th--Bad cold finally emerges...tics high. Mar 12-14--Tics decrease as cold subsides. Mar 15-19--Tics steadily decreasing again, down to mainly finger wiggles, slight elbow bumps, tongue and teeth thing. Yes, this is a familiar pattern -- though tic is minimal with our dd OCD showed up with each "cold" this past fall-winter -- now on antibiotics and no such out break for 3 months. Good luck with the upcoming appointments. I would just encourage you to keep doing exactly as you are, looking until you find someone who can assist in a meaningful, ongoing way. It is easier said than done, but keeping a thick skin and persevering on all sides is tantamount to finding help.

Absolutely Bronxmom2-- Many have gone through severe episodes and then had a solid recovery. Treatment (various) according to the testimonials (research findings, etc.) helps and indicates there is recovery along the way. I am hopeful!! Back to 100%-- T.Mom:)

Hi BronxMom, My daughter had been assessed as talented and gifted in 3rd grade. Her first obvious/severe PANDAS-like episode was in the middle of 4th grade. By the end of that year I was questioning the school about WHY they were not doing a better job of teaching handwriting ... as her handwriting and written expression showed a significant decline from the start to the end of that year. At the end of 4th grade she again tested as talented and gifted (Hopkins). She had a very severe episode (much OCD, etc.) that summer (08.) She recovered (after treatment) and in Sept. her new teacher saw nothing wrong, though she told me in October that she was surprised that our d. had ever been assessed as "gifted". After our d.s 2-3 moderate episodes in the fall her writing (handwriting and written expression) remains far from what it was the previous year. (In January the teacher told us our daughter was the "worst writer" in the class...) There has been some improvement in the past 3 months since she has been on full strength ongoing antibiotics (know we need to switch to prophy. soon.)

...forgot to add, both MRIs showed nothing.

My daughter has had two MRIs. The first was last summer when she was in the midst of the "worst" episode. (Presented as if psychotic, not speaking, etc.) At the time it was to rule out any obvious problems. The second MRI was ordered to recheck (neurologist.) Concern was that Lyme disease may be a factor in her illness. Special note to the radiologist to check for Lyme and OCD. Contrast was used both times.

Hi EAMom, when your PANDAS dd "reacts" when her sister is positive for strep is it OCD type of reaction, pupils?, and does she test positive for strep herself then at the same time? My own daughter has had very slight flare-ups corresponding to when a classmate was positive with strep. Her pupils were huge and struggled with more OCD "stuff." --though she does not test positive for strep, she seems to react when exposed. Thanks, T.Mom