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ange

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  1. Just wanted to chime in here. It's been a while since I've posted. Zithromax was doing nothing for us, so I took the plunge after a year and took him off, and our family has' beenon Gaps now for 6 1/2 months. Improvements with our Pandas son started around 3 weeks in (he majorly detoxed on day 3 through 7 with fever and vomiting even chicken soup). Now it has gotten to the point where the rages have pretty much gone. If he does get angry, it does not escalate into abuse, just moodiness. Just began probiotics, and by the 2nd week on biokult I started to notice a definite increase in moodiness, frustration, sobbing about insignificant things, etc. These are the same type of behaviors, on a lesser level, but the same as when he was in Pandas mode. I am going to switch him to another probiotic (Gutpro? any ideas?) and am hoping he will normalize soon because my nerves can't stand it anymore. Once you have seen improvement, it makes the regressions so intolerable even if it's on a lesser level than before. This negative reaction kinds of seals the deals on his having Pandas for me (not that I didn't have other proofs before, but he has never had classic tics/ocd, so I always wondered if it was truly pandas). He has reacted in the past to sick family members (sometime a day or two before we knew someone was sick), and now a probiotic strain with strep...done deal. What happens when I introduce yogurt - that also has streptoccus thermophilius in it...anyone have feedback on that? Thanks and good luck to everyone with their healing.
  2. Sounds like my son. Can't transition, stalls at bedtime, and rushing him just sets off a meltdown, throwing things down the stairs, shaking the banister (I hope it doesn't break!), etc. Even when we are having a good day, it can change rapidly out of nowhere, like a storm cloud that justs creeps up all of a sudden. For people not experiencing this, there's just no way they can even fathom the havoc it wreaks on your daily life and mood. Keep strong!
  3. My son has pandas, and I think my duaghter may also be showing early signs. Her blood resluts were elevated ASO 320 (normal range was <150 for our lab) and low Dnase-B AB at <50 (ref range given for the lab was <187) The doctor we are seeing for my son's pandas said the aso was nomal and dnase low, so she did not think it pointed at pandas. (This convo was via e-mail, she has not yet met my daughter and I wanted the bloods done first to see if I should schedule a consult $$$$) However, I am questioning that - with the symptoms and high ASO (according to the ref. range), how significant is a low Dnase really? Your thoughts...thanks. Also, her eosinophils, absolute were elevated at 704 (range is 15-600) indicative of parasite infection or allergic reaction (she definitely has seasonal allergies in the spring, but that's all I know about). Any link here with the new behaviors (meltdowns, grumpiness, bossy/nasty to siblings).
  4. That's why having this forum is such a relief - at least here people "get it". I have had very similar experiences. So often people tell me what a sweetheart my son is. HA! What a joke - he's a holy terror at home, tormenting his younger siblings, ekeing out whatever little strength we have left, always wanting more and going ballistic when we put our foot down. But the truth is, he does have a sweet side that we are seeing more of now on zithromax. However, you get the feeling that they (family especially) think you are exaggerating it. Well, like you said, they've never seen his rages. I told my mother the other day that these specialists (DAN, LLMD, etc) cost a lot of $ for consults, but if they can help, maybe I should try it. She listened politely but reminded me that I tend to be a hypocondriac and maybe it's not necessary to spend that much...but if it were her child and she was in the situation, what would the alternative be - let him deteriorate mentally and see where this disease takes him? Thanks for the vent - and to the forum for being our understanding soundboard.
  5. Thank you all for your responses. Just knowing that others are in the same boat and somehow muddle through really helped me today. When ds came home from school I was able to be more patient and loving and the anxiety I was feeling watching him the past few days as these new symptoms appeared seemed to be able to be pushed aside to allow me to be able to interact more happily with him. Interestingly, he seemed pretty happy mood-wise, which is always a nice surprise - I would have thought the rages would spike if he was showing new symptoms (although since we had some of the germs in the house this past month his moods have fluctuated more negatively, but never back to the rages). Will keep you posted on what the doctor says.
  6. I have no knowledge about alternative diets, but I would like to try it as complimentary to our antibiotic treatment. I know that anything white is not good...but I have no idea how to cook and cut out white sugar, etc. and it seems so daunting. Where should I start? A book - any recommendations? A consult with a nutritionist? I also don't know where to focus - eliminate sugar cooking? anti-imflammatory cooking? Any advice and pointers would be helpful. Thanks.
  7. Thank you both for your empathy. It is really hard to watch, especially when I mentioned it to my husband and mother and they had a hard time noticing it at the outset - I kept saying, "just watch him". He is about 46 lbs and is on 250 mg zithro a day (a.m.). Takes 1 culturelle probiotic (p.m.) and 500 mg omega 3, and melatonin at times to help him fall asleep. The zithromax really helped cut out the rages, but his moodiness has still lingered and I feel like we are not going to see much more progres on it. My doctor was away, but I will speak to her tomorrow a.m. to see what the next steps are. Thanks!
  8. I am so distraught - until now my son's main issues were the rages which have become much more manageable while on zithro for the past 6 months. Living with him is very challenging, but I felt lucky compared to a lot of people here whose kids seem much more debilitated. Just recently I noticed something new which I now see is an established tic. He does neck stretch and shoulder shrug now. It is heartbreaking for me to watch him. I also detect something different in his speech pattern. It seems like there is a little blip in his speech, almost like a momentary pause, and then he continues but backtracks one or two words. It sounds almost like a little stutter. Unless you are looking out for it you won't really notice it, but to me it's plain as day. I am so sad - why is this happening while on zithro. I do know he had a could earlier this month, and my daughter had an ear infection, but stil - he had not shown a real tic before (he had a persistent cough but that just seemed more normal than a head/shoulder thing.) I just feel so lost.
  9. My son's ODD flared during the summer months. His eyes are usually dilated, even now while on zithro. His ODD was also the most severe part of his Pandas (so far). Anything would set him off - misplacing his watch (that happened at least once a day), not liking breakfast, having to carry his knapsack into the house from the car...Evenings before bedtime were always pretty bad.
  10. Thanks for the insights. To clarify, it wasn't the usual hard spot at injection site. Her whole upper arm blew up, was hot, very hard, and my understanding was that it was infected. I am having a hard time getting my records form that office, as I am switching from that doc, but will persist. Re: the lyme, I'm also skeptical because I can't imagine when that would have happened, but you're right, it's possible. I plan to see an LLMD to test further co-infections. Do I have to present child by child (i.e. separate consult fees for each kid), or do they do testing on everyone if I want?
  11. Just thinking...the daughter that I am strongly suspicious of showing signs of Pandas had a reaction after a vaccine about 6 months ago - I don't remember which vaccine it was for, but she was 5 1/2 and her arm got swollen, red and hard. I called the doc and he put her on amoxcil. Having trouble formulating the thought, but this is an autoimmune response, right? Makes sense that maybe she would be Pandas if this is how she reacts to the shot? (She also gets terrible eczema/allergies in the spring, had chest pain which was her only symptom when she had strep, leg pain, now she is having disposition changes.) Any thoughts on this?
  12. Way before this whole thing began with my son, I was the one who always got strep - evry 3-4 months for about a year and a half. (Had strep prior times, but not as often/recurrent) Got amoxcil each time I cultured positive and was good for a few more months. Then an ENT told me I had allergies causing a post nasal drip, tonsils infecting, and gave me Levaquin for 10 days. After that, strep stopped but my next infection many months later was a sinus infection. I've since had some of those, maybe strep again (?) but not nearly as often anymore. Not sure what my bloods are, but would be curious to have them drawn.
  13. I've been following your posts and know you have been through so much. This is great news. I really hope you see continued improvement towards health!
  14. Thank you all for your responses. Thanks for the Dr. Horowitz reference - that is a good location for us and he sounds well informed. How is his bedside manner? Do I go to both a Dr. Horowitz (LLMD) and a Scott Smith (DAN) - I guess what I am confused about it, is what is the primary approach of each type of doctor and if they are different I guess go to both? Also, I have had on occassion gotten a stiff neck, but not sure this would be related to Lyme? To Eljomom - my son had his first major exacerbation a year and a half ago (at least that we noticed). He became more manageable after a few months, but a year after the first exacerbation it recurred, more intensely even. He began treatment on zithro, omega 3 supplements and probiotic and has been on it for 6 mo. We started at 200 mg per day (he weighs in the mid 40 lb range) and then increased it after 3 months to 250mg per day. We have seen the rages decrease but the improvements have been very gradual over time, and he is still moody. Sometimes he is moodier an other times happier but more hyper. He is in his moddy/down state again, but the rages are still pretty much gone.
  15. I am working with a Pandas aware Ped in NY, who is a godsend. My son is doing much better on azith, but not 100% after 6 months still. I want to do further testing for co-infections and not sure how to proceed. Some of you recommended DAN doc Scott Smith, PA, who sounds great from what I hear. Will a DAN doc who is Pandas aware do they same thing as an LLMD? Do I need to consult with both types? If so, who would be a good LLMD in the NY metro area? Thanks so much!
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