beeskneesmommy

Yup.

Happy Sunday! Hah, a little sarcasm....really, I am supposed to meet a new trainer to work out tomorrow morning and attempt to shed my "PANDAS Pounds". All I really want to do tonight is eat a darn pint of Ben and Jerry's and go to bed! Thank God for Whole Foods herbal sleep remedies..from which I have concocted a cocktail over years of sleep deprivation! Took my husband and son out for ice cream at a special family run place in the country today. DS is not in terrible shape, but seems to be having an increase of symptoms again today. Poor kid took each lick of his cone and looked horrified over the ice cream getting on his lip...then ran for a sink to rinse his hands and a napkin to wipe his mouth....several times over, after each lick. He gave up after about 6 licks and handed the cone to his father. He simply was more compelled to be clean and without stickiness than he was to eat the ice cream that he had been excited about. He went to tennis camp last week at a new school that he will be starting in a few days. I sent him to get used to it and feel comfy for the start of 1st grade. I had nixed swimming in the afternoons because, well, you know...pools. He cried and cried, saying he was "left out" and wanted so badly to swim with his new friends. He was doing so weel that I let him swim ONE time, totally against my better judgement. I just felt so badly for him. Yup. Here we go. Luckily, school doesn't start until Thurs. so I have some time to try to pull him out of it. I am such a mean old "Mommy Dearest" these days! Well maybe not that bad, but simply out of juice with no where to recharge my batteries. Wow. Enough of my venting! Sorry again! Warm thoughts to you all!

So sorry. I am having one of those crumby days myself. More just plain sick and tired of dealing w/PANDAS at all. I am always the bad guy, always the disciplinarian, always the medecine-giver, the one who keeps track of docs, insuarnce, finances and does the OOT traveling with our son. I need a break longer than an hour to clean and do laundry. I wish my family members would step up and offer me a day off...or that my husband would show a little more appreciatiation for the incredibly hard work that I do 24/7 for our son. Sorry. Cranky. Hope your friend sees reality and so sorry that she disappointed you!

I have heard of this before and my question would be: how well is it filtered, to what standards, and is there any chance that prions or other infection might be present?

Yikes, sorry, i am sleep deprived. I think I am wrong about the magnesium interaction - pretty sure that was when I was on Levoquen...sorry. I am on too many meds!!

Thx! I will look into Quercitin and up the Benedryl. he did well on it last night and he slept better, as evidenced by a happier kiddo this morning. LLM, Dr. B prescribed Nasonex when DS was really messed up with sinus problems...which had gone on all his life! DS got much better and we use it only when we have a problem now - I try to be sparing because Dr. L has also told me that Nasonex may create an envronment in the sinuses that is condusive to harbouring bacteria. Have heard about Pepsid...will see if Dr. B will prescribe disolving tab when I talk w/him at the end of the month. DS does not swallow pills yet. Also, can I get Quercitin at Whole Foods or a place like it? Any brand names that are reliable that you might suggest? Went thru the whole dust mite, bed covers, air purifier scene. The bed covers made no diff at all, but he sleeps w/ a purifier on full blast in his room and we do not alow the dog to come upstairs. The primary problem right now is seasonal pollen and perhaps mold allergies (due to tons of rain)....I worry about the idea of shots as I fear they may cause an upset in balance that would lead to flare...plus, it is seasonal, not year round. Again, Thank you!

yes, DS almost 7 has been on abx daily since 9/2010 and over the last 2 years, Augmentin and Azith daily. We give a probiotic daily, as I am sure you must. However, he has heartburn as well. One thing that your doc should be doing if he/she is concerned about stomach issues d/t abx, is tst for Yeast overgrowth. Candida is easy to do - just a blood test. You can also get a test for yeast called OAT (I think). When my son has heartburn he takes Tums. You may also want to check the interactions of Prilosec. I am on it and my understanding is that it negates magnesium absorption. Interestingly, the combo of Amoxicillin, Clarithromycin and Prilosec is used to treat H. Pylori, from what I have read. So maybe it will have a + effect for her?

Thx, will look into Quercitin. Re: Neti-pot, I used to use it and stopped because I have had 2 docs tell me that although people used it properly, they have seen some instances of really nasty bacteria infect people who use Neti. I am leary of that for myself but really afraid of that for DS. Besides, he wouldn't do that even if I bribed him with a trip to Disney! I do use saline spray...just had a recent allergy attack and cannot get it under control!

DS almost 7 is out of control with his allergies. He is losing sleep from itchy eyes and stuffy nose and I fear that it will turn into longer term simusitis. His allergies, when they arrive, cause him to flare. Got this under control for a long time with daily Nasonex. however, he needs something more now. I am fearful of allergy meds because when he was much younger he reacted very poorly to Allegra. It seemed to set off a flare. I give him his abx but I am sparing with anything other than Ibuprofen and occasionally Benedryl at night. Can anyone recommend any allergy meds that seem OK for their younger kids? (Cross-post)

Dr. Bouboulis in CT sees adults. He treats both my son and me. He has a long wait list but it is worth it if you are planning to stay in the States. Link: http://www.advanced-allergy.com/

Dr. b is excellent with treating infection and who prescribes out abx. We see other PANS specialists for other treatment.

Thank you - this is new info to me. i will take it up w/Dr. B on Wed. DS is looking pretty ticcy tonight - it will likely be a saw toothed journey back again. I really think it was the 30 days of Clindo helping to cause all of this.

Please tell me about the white patches of skin on the face? I have noticed a coin-sized one on my son's cheek, but it is not rough - just like a white discoloration that comes and goes...I have suspicion that at least some of this is yeast exacerbation d/t all of that clindo with no diflucan to counteract the yeast. Probiotics are limited - we only do one chewable from Whole Foods because my son is SO suspicious and picky!!

From my understanding, it is not a tolerance concern as much as the Rifampin compromises the Duflucan's effectiveness. It was the pharmacist that brought it to my attention and Dr. B confirmed it when I asked him. It probably helpsd some, but it is aparently not as strong in conjunction with the Rifampin. http://www.medicinenet.com/fluconazole/article.htm

Yes, it is Rifampin and Diflucan that you cannot take together - cancels the efectivness of the Duflucan...and the doc did not want Clindo and Augmentin together. Pow Wow, yes, I am sure that the Clavulanate in the Augmentin is acting as an antiinflammatory, However, I would not expect it alone to have this dramatic effect as it has not done so in the past. DS is not a kiddo who benefits hugely from Ibuprofen either...yet another question for Dr. B. Thx! T. Mom, have been having trouble with the box, I will try to make it receive messages! Thx

Did not hear back from Doc's office so i started DS on Augmentin, which i have a script for from his other specialist; totally on the level. Within HOURS I saw a difference! Camp coach was amazed - made a believer out of him! Significantly decreased symptoms, only minor "flapping" that afternoon. Thurs, further decreased symptoms, "falpping completely gone". Fri., symptoms at such a low level that only I would notice when looking for them. Anyone ever see the movie "Lorenzo's Oil"? I am absolutely sure that the Augmentin did it. He has been on it non-stop for 2 years prior to the Clindo break, so this is the first time that I have been able to observe the difference as clearly. Seeing Dr. B on Wed., and I am very anxious to find out his take on this. Disturbingly, it indicates that Strep might still be the culprit, as that is more of what Augmentin targets. I had really thought we had wiped the little @#%^& out! Back to the Azith/Augmentin comblo with daily Diflucan. Also looking forward to checking out alt. ideas provided by LLM..

Thx!

Interesting. Put in an emergency call to the doc (L) on Tues. and of course, never heard back. Yesterday morning I started him on Augmentin again. Within hours there was a difference. His coach at camp said it "was like night and day" (sound familiar)? Last night he was chatty, joking, happy...the kid I know well. He was still symptomatic, with tics and OCD, but on a significantly lower level.So back to the old concoction of Augmentin and Azith., daily. He clearly responds effectively to the anti inflammatory properties of Augmentin! LLM, until this round, Diflucan has worked wonders. I put him on it about 12 days ago, when I saw the 1st signs of going down hill. I had stopped it pre-IVig 8 weeks ago because I knew the Rifampin was coming and they cannot be taken together. We know he had elevated Candida in March, so it stands to reason that he continued to do so, but I agree, I think the Clindo/Rifampin combo may have elevated it further. This is the 1st time he didn't respond favorably to the Diflucan, which would stand to reason may have been a die off. ...then how do we explain the Augmentin. working its magic? I am seeing Dr. L and Dr. B with him next week. Dr. B and I tend to work very well together as detectives, so he will likely have some interesting input. I am going to ask him to draw for another Stoneybrook Lyme/Bart (was neg May 2012, but you can never be too careful)!, Yeast and the usual culprits. I am interested in the molly and the others and will give them a try over the coming weeks. DS is difficult with meds - can't swallow pills and is very suspicious of anything I try to slip him or new meds. It will be a bit of a battle, i am sure! Thx for the support and input everyone! Last night I slept for the 1st time in days! Hoping that DS continues to look well (dare I hope even better)? when he awakens this morning.

Yes, i am sure he is exposed to all sorts of trash as the camp is in my gym and fitness centers are notorious for bacteria. However, he has done well over the past many months even when exposed. He WAS absolutely exposed during the 3rd week post IVig, when he returned to school. They notified me and I took him out, but the exposure did occur. However, this is the 8th week post IVig and I feel like this in direct correlation with the 2nd 2 weeks of Clindomycin, after the Rifampin dropped off. I had discontinued the Augmentin that he has taken for 2 years to put on the run of 2 wks Rifampin and 4 wks Clindo. As soon as the rifampin was done, he started to slowly go down hill, then fell apart late last week. He didn't look so hot this morning so i went ahead and restarted Augmentin. I put in a call yesterday to the specialist that D/C'd it to start to Clindo/Rifampin run, but I got the impression that I may not hear back quickly. The other specialist never wanted to do the Clindo/Rifampin and wanted the Augmentin/Azith combo to continue post IVig. Back to that plan.This is the combo that has always been helpful for us, so we will see how he does. I cannot wait several days to hear from a doc in an emergent situation. I cannot risk further decompensation.

Yes, I am consodering it. I have some. I put in a call to Dr. L and will wait to hear back - asked about Aug or Rifampin. Just seriously bummed out because he was SO on top of the game that the plan was to decrease the abx at this point. The IVig and the Clindo threw him for a loop. Last time he had IVig, it took quite a bit longer than is typical for him to start improving from the backslide...perhaps this is more backsliding. I am just suspicious of the Clindo. I think I will grit my teeth for a little while longer - the other thing is that Aug is tough with yeast and I KNOW Candida is in there, so I was hoping to continue w/Diflucan and Azith and attack the yeast problem before pushing Aug which is a known concern for yeast...

yet another day debilitating OCD and tics - what the heck? My son was fluxuating betw. 90-100% prior to the IVig 7 weeks ago. He looks awful! It came on like a ton of bricks last week. D/C'd Clindo yesterday and he is only on Azith. I have been giving him the Diflucan for about 10 days. Seriously thinking of starting Augmentin again today. Feeling frantic.

DEFINITELY one thing at a time! The whole point of the 2nd IVig was to beef up the immune system so we could get more conservative w/meds. DS6 tends to be very sensitive to alternative meds, as am I. Inisotol at a small dose nearly blew him out of the water last year. My immediate plan is to do only the Azith and the Diflucan for the rest of the week, cut any intensity-producing activities (Nintendo 3DS) out completely, keep sending him to camp at the fitness place with coaches who get it and call when they have concerns (want to tire that child out physically), get him into bed and asleep no later than 8PM nightly. He and I are heading out next Mon. to Phlly 'burbs to stay with my parents and we have appt.'s w/Dr. B on the 17th and Dr. L on the 19th. Both will have different opinions, but we manage to work together. I am really hoping to continue with the plan to decrease abx to the Azith only, if possible, as I don't want to continue this prolonged use of them solely for antiinflammation. I believe that we have kicked the bugs after 3 solid years of abx daily and the last 2 years of Azith/Augmentin combo. However, I am going to request stoneybrook Tick born blood work once more...for both DS AND me. Any further suggestions for our doc visits would be appreciated and welcomed! Thx friends!

Diflucan is all (aside from daily probiotic) that I have ever used. Please tell me about the availability of Sac B, dose, etc. Yes, we see a terrible crash usually around the end of the 2nd week post IVig... and we did this time too. However, after Rifampin and time (we are at week 7 post IVig now), I am concerned to see such symptoms. He is even flapping as he is running today, which I have not seen for years (he is not ASD). The PANDAS has been so far behind us for so long, that it is really anxiety producing to see these kinds of symptoms post IVig. He has not returned to his pre-IVig place....and I took Clindo for 10 days and it made me feel awful! I think I will hold off on putting the Augmentin back on board, keep the Diflucan and Azith on board, D/C the Clindo now, rather than follow thru with the last 2 doses today, and look into the Molly and Sac B. Sound like a plan? Thx everyone!

http://www.site.neurokidsr.us/

Ah-ha! hoped I would hear from you LLM! Thx! He was + for candida, but not glaringingly, back in March. This was after about 70 days of Diflucan use, and the 1st Candida test we did, so one would hypothesize that the candida was at a higher level prior to the test. No big surprise given the fact that he has been on daily abx in one form or another since 9/2010. Can I get Molybendum at Whole Foods? Is ther something that comes in liquid or kids chewable that might work? DS is 6 and does not swallow pills/capsules yet. Also, side effects or herx top worry about? I am concerned about yeast but also by the fact that he was doing so great for months pre-IVig #2 and on the typical Aug/Azith combo with Diflucan that is familiar to us. I am taking away video games and putting him on a more strict sleep schedule as of today - he is in sports camp daily this week so hopefully he will be tired and perhaps I will dose him w/Benedryl tonight to ensure a good sleep. I just feel so badly for him because he was so darn normal and healthy for so long, and this level of OCD is remeniscent of the old days. PTSD!!!! When I dropped him at camp this morning a little girl came running up and introduced herself, very sweet an friendly...I quietly mentioned to the owner that my son had blown sky high over the weekend with OCD and tics. He said, "Oh (name of little girl) is full blown Autistic, so this should be an interesting week". I had to smile, as the owner has a 15 year old with Tourettes and has been around the block. DS will be in good hands and hopefully come home a little readjusted. Interestingly, structure like school or a day of activitiy away from me often helps to "re-set" him. I shudder to remember what my colleagus in the old days when I was a clinician at a child/adolsecent psych hospital would have said about that, lol! ...and, thank you for your response. I will check out the link today