Posts posted by jtp
Imkmpi67....I sent you a PM.
I just got off the phone with Dr B's office. They have their phone service back! Yay!
Thank you both, I guess I'll keep trying and hope for the best.
Has anyone been able to get in touch with Dr B's office this past week? Our appt was canceled on Monday due to the Hurricane and the phone line has been busy ever since. I'm wondering if anyone knows if they're back or if the phone lines aren't working. I'm hoping to reschedule our appt as soon as possible.
My DS12 was diagnosed with convergience insuff when he was 1 1/2 years old. The pediatrician said he had a lazy eye and the Opthamologist said there was nothing wrong. I knew something wasn't right so I brought him to Pediatric Optometrist and then he was diagnosed properly. He started vision therapy in small doses at home, using a straw then as he got older we used more intense therapy at home.
I can say that this really really helped my son. Today he's 12 and he's an amazing reader and writer. I was lucky that he started early and was able to do most therapy at home inexpensively. We did not use any of those special glasses. Vision therapy is very time consuming but does produce results, at least in our case. He still has convergience issues but we keep a set of beads(used in VT) that he will use occasionally to remind his brain to use his eyes as a team. When he's over tired or sick the CI will pop up again.
All in all we were happy with the results of Vision therapy.
Has he been checked for migraine headaches? I personally have suffered with severe migraine headaches since I was 4 years old. They were pretty intense and I would vomit when I had them along with many other symptoms when I was a child. They varied with intensity and sometimes only lasted for 20mins other times 2days.
My DS12 does get headaches and usually he gets them in the car while driving and they last about 10mins. This has happened with flares and without. He does not vomit though. I spoke with his Pedi about it and said it could just be motion sickness in the car.
The office didn't give any reason for this?
At our family's first visit we were told we should be tested for lyme annually as we live in a wooded area.
I wonder why too. I hope someone has more information.
We just stopped. We didn't taper. How do you taper? Does it matter the dose, or just slowly reduce?
There's mounting anecdotal evidence that tapering abx is important, and I recall reading here that one of the leading docs (maybe Dr. T?) has recently opined that tapering is necessary for PANDAS patients. Like DCMom has said, we taper everything with our DS, and he, too, was on full strength abx for about 2 years, like her kids and like Sammy Maloney. As I recall Sammy's story, too, they tapered his dose in the final weeks he was taking abx, as well.
I think the degree and length of the taper has a lot to do with how high the dose is to begin with, and potentially how long the kid's been taking it, too. I'd be surprised if anyone has actually developed any formula, but we basically reduced the dose by about an eighth and left it there for about a week, took it down another eighth, left it there for a week, so on and so forth until we couldn't cut the pill any smaller, so then we spent a couple of weeks doing one day on, one day off, until we were down to no days on at all. My DS was on 2,000 mg. Augmentin XR daily, and overall, it took us about 3 months to taper completely off.
I think the bottom line is that the abx can bring more to the table than just microbe fighting . . . some are thought to be anti-inflammatory, and some are thought to be glutamate-modulatory . . . so abruptly ceasing that buffer and/or support might throw the body an unwanted curve, like the snapping of a rubber band. So better to ease the stretch slowly and do what we can to prevent the "snap!"
So glad to read this post today. I have said this to my husband and he said there was no need to taper it's just abx. So at least now I can show him this. We just reduced my DS12 abx from high dose to 1/2 that dose of Zith. But I tapered it slightly to get there. I also told him when Dr B will give us the okay to stop I'm weaning him off slowly. To me reducing slowly is common sense. Your body get's used to something and all of a sudden it's not there anymore it needs time to adjust.
Thanks for posting!
Never heard of it either but would love to know more if you try it, as my ds is having sinus surgery next week due to everything you mentioned - chronic sinusitis, poss fungal, clogged sinuses etc. Sounds like a good option!
Here's the website if you want to check it out:
Glad to hear that all tests were normal, one less worry.
I was wondering if anyone has used a nasal nebulizer treatment which includes an antibiotic,steroid, mucus thinner and antifungal medications.
My son was prescribed this by his new integrative Dr. He's had frequent sinus infections over the past year but he's been on abx for a while and doing better. The Dr. said that most of the time sinus infections return after the abx is stopped or decreased.
I have never heard of this system before but what I read about it sounds like it's a good concept. Getting the meds to do the work at the source of infection. And the medication seems to cover every aspect of sinus inflammation/infection.
If anyone has used this or can share any information about it please feel free to share your opinions, it would be most helpful.
OK, just saw you have United. You will have a much easier time getting lVlG at MGH. call me when you can,I can help you.
Thanks! I don't think we will be doing any more IVIGs since we have already done 9. So I am not sure what help I can get for Ian locally at MGH. But the good news is I finally did get an appointment with Dr. B for Aug. 13th. So we will be talking about what to do going forward. I think the receptionist though I was a new patient last week, she seemed in a much better mood today, too. lol Maybe it was a tough day. Anyway, so I am feeling better about that. I also think we are going to make an appointment with a local integrative doctor that I have kept in the back of my mind for months now as we wait to see our next move.
We have an appt with Dr B. on Aug 13th as well. Maybe we'll see you there.
I've also made an appt with an Integrative Dr on Aug 8th. I would like another opinion and help choosing the right supplements if he needs to continue with Abx for an extended period. We'll see what they both Dr.'s have to say and move on from there.
My son(12 yo) had similar issues of pain off and on too. It happened after he had an episode/flair and lasted a few months. He also said that he could not finish urinating and would have to wait and return about 10 minutes later to finish. We had his urine tested too, no infections. It hasn't happened in months. I've let it go for now, but please post if you find out anymore information.
I was trying to PM you but I think your InBox is full.
Dedee and PowPow,
Thanks for your info. I will be chatting with my daughter and looking into both places for more information.
I'm on the this forum usually for my DS who is 12, but reading these posts have got me wondering if these intensive programs could help my 16 yo daughter. She has not been diagnosed with PANS. Dr B was trying to make a connection because my son has it. So as for her I don't really see her having PANS. However, she suffers with tremendous anxiety sometimes incapacitating and other times fully functional. Severe anxiety has caused her many depressive episodes. She had severe school anxiety and never finished High School, she did manage to get her GED shortly after leaving HS.
Our Local Community college had offered her a program where she could get her HS diploma and work towards her Associates Degree at the same time. Which we thought was a wonderful idea. The night we had to attend an information session for this program her anxiety/fears of returning to a school environment went rampid. I couldn't get her out of the car. It was like trying to get her off to school in the mornings again. I thought we had moved on from this, but I guess not.
I had searched and searched for help for her, tried several therapists, tried several medications from anti depressants, mood stablizers, anxiety meds, ADD meds, accupunture, chinese medicine you name it! Nothing helped for long or the side effects worsened her condition. I looked into long term inpatient care, most weren't covered by insurance.
I had no idea there were such places with intensive treatment other than C.A.R.D (they wouldn't accept her or insurance) and Mclean another long term self pay.
My daughter is extremely bright and intelligent with a very creative flare. It's frustrating to watch her lose opportunities due to her anxiety. Most therapists tell me she doesn't have the motivation to get better so they can't help her. I've often wondered if she could get intensive therapy to get to the bottom of this anxiety quickly would help. Going to a therapist once a week has only motivated her for a day or two then by the time she goes back the following week she's unmotivated again. She is currently seeing a therapist whom she likes but again very minimal progress has been made. They just seem to keep her afloat without REALLY getting to the root of the problem and help her to correct it.
My questions are:
Are these treatments covered by insurance?
Would they help someone like my daughter or is it strictly for OCD?
She does have some OCD(that I can see) but I believe she tries to hide it from everyone.
I had given up at this point, but maybe just maybe a program like this could help. We are from North Central Mass.
Any suggestions would be great. Thanks
I live in a very wooded area and the ticks are horrible this year. My son has had a few deer ticks on him past years and the Dr would not treat him with antibiotics she said wait and see if he gets flu symptoms. I didn't want to wait so since I had the tick I sent it to be tested. Here are a couple sites if you're interested in doing the same.
They usually have to be attached longer than 24 hours to pass Lyme disease, but not all ticks even carry it.
Hope this helps.
This is great idea. I often wonder about the history of other members here too. So here's our journey:
Son born in May 2000. Breastfed for 10 months, Very fussy baby. Would rarely nap more than 1/2 hour at time. Although he didn't nap well he did sleep through the night very quickly. Met all his milestones on time or early. Very active, curious and adventurious toddler. He rarely got sick and when he did he would have a high fever one day and be up and running the next. Only had antibiotics once at 18 mos for an ear infection.
At age 5 he attended school he was never shy at home, but boy did that change when he entered school. He was extremely shy and sensitive, still very sensitve today. During this year he had an operation for a hernia and later that year had a very strange virus (this has always bothered me). I got a call from the nurse at school saying he was having a breathing issue. So I brought him to his Pedi but by the time I got there he was getting random pains throught his body (no fever). He said he could feel it moving from one place to another. His stomach hurt so bad the Dr made us go the ER. They sent us home. That night he was having raised welts over his body. It would raise and go down and then move to other parts, like lips, eyes ears.( I assumed that this was what had happened internally earlier) I gave him Benadryl which helped a bit. Next day brought him back to the Pedi and she said it was a virus. hmmmm weird.
At age 8 he had bronchitis and was given 2 weeks amox. 2 weeks later he had an ear infection and was given 2 more weeks of antibiotic. about a month or two later he developed tics, a bit of ocd behaviours, restlessness, insomnia, weird behaviours.Could not wear socks with seams, elastic waist pants only, no tags etc. This went on for a few weeks and then he began a severe eyerolling tic and I brought him to his pedi. I thought he was having seizures.I had not heard of Pandas but my Pedi said he might have strep and if he did it would be Pandas. Strep and Lyme negative so Pedi said it was not Pandas. We went to a Neurologist diagnosed with Transcient tics. Pandas symptoms subsided and cleared totally in about 2 months. We did not give him any medications or supplements at this time. (this is when I found this forum)
Age 11. He had colds and fevers between age 8 and 11 and no tics or behaviour changes. He did have a continous sinus issue throughout this year, post nasal drip sore throat. Summer 2011 his sinuses were worse ended up with an ear infection. Dr gave him 5 days of Zithromax. Ear cleared but 2 weeks later got Hand food and mouth disease from a pool. The tics and adhd type behaviour along with mood swings returned. Back to Pedi same scenario as above. Brought him to Children's hosp to see a Neuro there and he said that he could have postinfectious OMS or Sydenhams Chorea. My son has never had a diagnosed strep infection still to this day. The Neurologist said if it happened again to bring him back. He said we were lucky we did not get a PANDAS diagnosis because then we would be using antibiotics long term. During this episode we gave our son probiotics, fish oil, ibuprofen and a multivitamin. This episode was about 2 weeks shorter than his first episode however it seems the adhd type symptoms have stayed with him.
Present age 12. We went to see Dr B. tested for several infections. My son and family tested negative for strep, mycoplasma and Lyme, but he still has a sinus problem(maybe strep in sinuses). I tested positive for mycoplasma and am currently taking Abx. My DS had a raised ANA titer and it was suggested he see a Rheumotogist (we have an appt next week) DS is on his 6th week of taking Zithromax and we return to Dr B next week for the rest of his allergy testing. So for now no allergies to foods. He is doing okay, no tics but still a bit on the adhd scale. Doesn't seem as interested in his favorite things. His sinus issues got better, but they are starting to return and I will bring this up at our next appt. He is taking Zithromax, Probiotics, fish oil and multivitamin. At times a nasal spray Qnasl for his sinuses.
We will be exploring the possibility of tonsil and adenoids removal or at least consulting with a Pandas friendly ENT. I'm not comfortable with him taking Long term antibiotics so we may pursue alternative methods. Right now we are trying to weigh all the options and get a few more opinions. After that we will make decisions as best we can.
We were there last week to get our results. That was our second visit and we met with his PA. I brought everything on my first visit and he didn't want to see anything. He had his list of questions and we answered them. I had my list of questions and he answered them briefly. He was very nice and his staff are very helpful.
He was very busy that day but we were glad that he is still accepting new patients. All in all we are happy we found someone we didn't have to explain, prove or educate about our sons issues. It was quite refreshing to say the least.
Hope you find the answers you're looking for. Have a safe trip!
Well Dr K does believe antibiotics can manage symptoms for a few years but eventually most need ivig. I don't necessarily agree with this though as reading this forum, many are managing symptoms with prophylactic antibiotics and then bumping up to full strength with infections for a few weeks. I think it all comes down to degree of dysfunction. You have to decide how badly the symptoms are interferring with life. Dr K measures it like they do to access the need for meds for ADHD - namely is it negatively impacting his school, social or family life? IVIG is a blood product so you again have to weigh benefits vs risk. And yes, I do think alot of people are sucessfully treating with abx and moving on with their life, so we don't necessarily hear all the good stories, but this is hard to quantify, hence the need for a pandas registry, which I believe someone is trying to start (maybe OCD foundation?). I have read florastor and culturelle are great choices and can be given at the same time as antibiotic and no strep. thermophillus in them. I don't think the abx really tax the immune system, it's just that in some kids the autoimmune exacerbation gets so severe that abx no longer work and stronger immune modulating therapies have to be tried (IVIG).
That would be great if someone starts a registry, I hope that if it does happen it would be posted here.
Our LLMD said to give probiotics 2 hours after abx, he wants DD to take 20BN culturelle cells twice a day. I mentioned that this is what we were doing to Dr. B's PA and she agreed with this. (that's two adult tablets twice a day emptied into liquid)/ I mix in Florastor when she gets a stomachache beccuase LLMD gave me a handout that said that Florastor is best against C-Difficile. DD hates the taste of it so I don't use it all the time.
It's so hard to give probiotics 2 hours after abx when your child is going to school so that's why I use Florastor in the morning because it states that it "can " be taken with abx. On the weekends it's fine to do the 2 hour wait, but it's not when they're in school. I had also heard that culturelle can be taken at the same time, but for now I'm using florastor and florajen4kids because that's what I have. I may switch to culturelle when this runs out.
That seems like quite a bit of probiotics but if it helps that's a good thing. Thanks for the info
Thanks for the great info Kiera. That at least helps me understand the long term antibiotics portion I hope that my sons gut can handle it. I have been giving him Florastor and I think I'm going to start alternating it with Florajen4kids to mix things up a bit.
So if we decide to stop antibiotics that leaves him open to getting another bacterial infection. In the past when he was on a normal dose of antibiotics he would get a viral infection right after we finished. I talked with his Pedi about that and he said that happens quite often after taking antibiotics.
Also when we had our appt at Dr B's with his NP I had the whole family with me for the results portion and it was a bit hectic so that's probably why we didn't a full explanation.
About my sons small stature: Yes I am only 5'2" but my husband is 5'10". He is 4'8" at age 12 weighing 82 lbs. He has slight sensory issues too and loves the sweets, but is picky about Veggies and will only eat turkey, chicken and just Wendy's hamburgers as far as red meat goes. I have given him a pediasure drink with breakfast for years just to make sure he get's his nutrients. He usually grows about 2 inches per year, but this year it's only been 1/2 inch.
Oh one more quick question for anyone. It seems that after a while the antibiotics stop working and kids then move on to IVIG, is that because the antibiotics have taxed out their immune systems? I was wondering what happens with kids who do not get antibiotics at all. I never hear anything about that on the forum. Also I don't hear much about kids that actually improve on antibiotics and move on with a normal life, or is that because they just don't come back to the forum? just wondering, thanks
We had our second appt at Dr. B's office this past week. Labs were back and we basically got good results, I think? I was worried about Lyme because we live in the woods, but thankfully my DS did not have it and my husband was tested and didn't have it either he's always roaming in the woods. None of us had Strep. I have an active mycoplasma infection of which I am now being treated everyone else did not have an active infection, only me. Since my son has been on Zith for 30 days his sinus infection has cleared, that's good news too.
My DS12 had a few items pop up on the blood work and the NP was not overly concerned with it. He had a slightly lower WBC 4.2 (normal 4.5). She said it could be from his infection. He had high monocytes 17 (high normal was 15). She didn't even mention that. He also had a low homocysteine 4.0(low normal 4.9). He had slightly raised ANA titer 1.64. The NP told us that Dr B would say that this is insignificant but she wants us to check with his Pedi to see if he thinks we should follow up with a rheumatologist. So I will be making an appt with his Pedi next week.
I am still a bit concerned as to why my son has to remain on antibiotics and I'm sure his Pedi isn't going to understand this either. His infection has cleared and his tics are gone. The NP said he has to remain on them for 3 to 6mos and then prophylactically(sp) until he reaches puberty.
1. Doesn't long term antibiotics hurt the immune system in the long run?
2. He's not having symptoms now why do we need to keep him on this?
3. He has had very mild Pans symptoms and shouldn't he be treated on a symptom basis?
I asked the NP the above question and she said I know I don't really get why they have to stay on so long either.
4. My son still looks pale sometimes on the antibiotic and I don't really understand why that is. I guess I will ask that question to his Pedi, but I know he's going to tell me to take him off the antibiotic.
5. Do any of his results in blood work need to be investigated further other than the ANA titer?
I guess with all this antibiotic resistance and hesitance of the regular Physician to prescribe keeps me wondering if we're doing the right thing. I just want whats best for my son. There is definitely something wrong but how do you know you're doing the right thing? I don't want to hurt his immune system any further.
Last question, Can PANS cause a slow growth pattern? My son has always been on the small side but this past year when all the kids in his class have grown quite a bit he's hardly grown at all, and of course the kids are now teasing him calling him a baby and saying he's going to be a midget. The Pediatrician doesn't have a clue about PANS so I can't ask him.
I know we all are concerned parents here and that we are not Doctors but I value any input/support given on this forum. All of you are amazing and very helpful and informative. I don't know where we'd be without this forum and it's members.
Thanks for listening!
Thank you everyone for your replies they are all very helpful.
I am giving my son Florastor this time while he's on zithro and will continue when he's done. In the summer I gave him Dan Active when he had antibiotics but maybe that didn't work for him. I heard that Florastor works well from this forum.
The yeast theory has always been on my mind because the problems happen after antibiotics but can someone let me know who do you go to for yeast issues? Our pediatrician isn't very helpful and I already switched from a pediatrician who was even less helpful. It's so hard to find a really good doctor these days. How is yeast overgrowth diagnosed? Do you see a Naturopath Dr? I live in North Central Mass if anyone knows of a helpful ND in our area please let me know.
I will keep doing what Dr B has prescribed for him, but should a problem arise after the antibiotics or while on them like before I would love to get some advice from a professional that deals with yeast as well. We don't get our results from Dr B until June.
He has only been on antibiotics a few times in his lifetime and everytime he has to go on them I get nervous. This time its for an extended period of time and a higher dose.
I'm going to hope for the best.
Mycoplasma pneumoniae carrier?
in PANS / PANDAS (Lyme included)
When my son was first diagnosed the whole family was tested for strep/myco. My DS and I both had elevated titers for myco and normal titers for strep. The rest of the family did not. My myco infection was active even though I wasn't sick so I was treated first with Azith(my stomach couldn't take it) switched to Biaxin. Biaxin didn't touch the myco.Finally took Minocin which killed the active infection. My guess is the carriers need to be treated so as to no re-infect anyone. I know that my DS myco antibodies were very high for a very long time and now have come down since he and I were treated, but he is still on Azithromycin at this time.
I hope this helps.