mom love
-
Posts
146 -
Joined
-
Last visited
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by mom love
-
-
HT's mom,
There are two main strep titer blood tests, ASO and Antidnase b, and they rise over time at at different times. So more than one blood test about 3 weeks apart would be advisable, for both your boys.
I started researching PANDAS in 07 and found this forum then, and, yes, things have changed haven't they? There are pinned threads at the top you can read through and print. Also, there is a book out called Saving Sammy that you should buy and read about a mom who found help for her son.
There are many ways you can approach your situation, and you will get many opinions here. It seems you have a doctor willing to run tests and rx antibiotics. I would suggest getting throat cultures on both your boys, if not your whole family, and get the blood tests for your boys. My dd very surprisingly tested positive for mycoplasma pneumonia after years of doing well and low level stuff like your boys but had an onset of a very bad motor tic, no other symptoms. I would ask for that blood test for both of them as well, IGA and IGM, and yes many on here are finding the complication of being also positive for lyme, you could as your doctor for lyme western blot blood test to start with. Many on here believe in Igenex lab for more thorough results.
My next thought is ask your doctor for augmentin at least for the son suffering more right now. It is clinically better for strep. Ask for a long dose, like 20 to 30 days. You can still get all the blood tests while on the antibiotics.
With all that said, I have recently chosen to try the alternative route for a while, trying to avoid antibiotics, steroids and IVIG for 10 more years. I am not sure where it will take us, but I am going to give it a try. With that said, I am keeping my dd on antibiotics while doing it, at least for a while. If we see positive results, I will take her off them.
-
kthomas, I believe from the very core of my heart and soul that there are "non conventional" paths to healing. I believe in energy healing and in traditional chinese medicine and in homeopathy. That said,I believe you have to find the right practitioner. We have only tried energy healing with a very expensive healer at a time when my daughter did not have symptoms (was in pandas/pitands remission at the time). We have no idea if it did anything but the healer was supposed to have done miraculous things with others (non pandas). The pitands did come back, but we only saw her a couple of times and she told us it would take alot more. We had become doubtful of her and it was very expensive.We also tried an osteopath who did cranial sacral but again have no idea if it did anything because she was in remission at the time. She just laid there and he did not do much except lay his hands under her head. At one time I thought he was falling asleep. Again, I think it all depends on finding the right practitioner. I still believe in it nonetheless.
I think that there are many who have success with holistic measures, I think those people stop posting on this forum and go on living their lives. I also think they are afraid of posting because they don't want to be bombarded with requests about it or have people question it. You will find many testimonials by googling autism topics of healing. Many parents of autistic kids have created their own blogs in order to help others. I have read on the TS forum great success with NAET, an allergy elimination acupuncture, BAX 3000 a laser/light version of NAET and much success with supplements. We have done all the basics of NAET and are considering doing more now.
Stephanie, I was going to pm you about Pierre Fontaine when I saw you mention considering homeopathy. He is booking out til October and he charges $900.00. His trainee charges a bit less. I did read a blog from a woman who had a "cure" for her son's autism with a homeopath (along with other things) and she is a homeopath now and I believe she is in Florida now. If I can find that again I will send you her link.
I too am interested in cranial sacral and the types or "names" for the types of practitioners and how to find them.
-
Stephanie,
I was going to say the same thing about myco p. Dr Trifilleti told me that it can present as just a sore throat and after researching it, it loves the whole respiratory tract.
Also, just want to mention that I read recently about using Cat's Claw to treat strep. Might want to research that.
-
Swim, I will tell you that myco p can present without typical symptoms like strep. My dd very surprisingly tested positive for myco p after a sudden onset of a very bad motor tic. We got a list of bloodwork from someone who saw Dr. Bouboulis and our doctor did it all for us. Doc put her on zith strep dose and she was back to 95% better in 5 days. That said, she has slipped over time and has gotten worse, esp lately. Doc added omnicef for 2 wks to see if it was exposure to strep, no improvement, then we added augmentin for 10 days and no improvement. We have now just switched to biaxin on advice of our doc. Only on day 2. We too have gut issues I believe. She is constipated etc. I have added one pill of oxy powder (mixed in water for her) and she did have a soft, normal bowel movement the next day. But it is hard to fit that in as it has to be given 6 hours away from medications (according to website)so I haven't been able to fit it in again with giving 2 abx and being in school. Swim, I am really sorry things are so bad right now. I really do understand. I am holding on to my faith as tightly as I can and believe I will be brought to a better place. I am praying for you and your child.
-
thanks so much for your feedback. i haven't noticed any pattern to the tics, they always appeared out of nowhere, or so it seemed, but i have noticed the mildest of runny noses does seem to accompany the return of the tics (when his tics first started at age three, the doctor would alternately say it was a tic, or say it was a sinus infection, and prescribe antibiotics, even though he didn't seem sick, maybe to make it seem like he was doing something? if anything, antibiotics seem to make him more tired, but it's been a very long time since he's been on any, probably over a year. he's a pretty healthy kid, thank God.)
but your other questions raise a red flag to me. he has handwriting issues, and has gotten OT since kindergarten (not that it's helped much); i noticed that his handwriting seemed worse before this latest flare up of tics, which are far and away the worst his tics have ever been. he struggles very much in math, too, and has been in remedial classes for math the past two years in school. on the other hand, he is an articulate and advanced reader, and a very sweet, empathic and sensitive boy. interestingly, again, nicholas hasn't been sick (has the most minor of sniffles, as i stated earlier) but his brother (who is five) has had a bad cough for about two weeks. noah has also been prone to strep (tested negative for it at the doctor's visit for the cough).
nicholas never received the flu mist, or any other flu vaccine.
now i'm really not sure where to begin. with a pediatric neurologist who specializes in tic disorders, his pediatrician, or go right to the pandas doctor? does my son's course seem familiar? i'm going to go back and read the articles you mentioned. thanks again so much, to all who responded, for your time.
I would say start with your pediatrician. Have as much blood work done as she will order. Strep titers = ASO and Antidnase b, get a blood test for mycoplasma pneumonia, and request the lyme western blot. That lyme test may only run as the elisa which if negative they don't test for the western blot, but if your doctor asks specifically for the western blot they may run it.
That would be a start. I would print all the pinned threads here and buy a copy of Saving Sammy and bring it all to your doc. Tell her you have learned that these above infections can trigger tics etc. and want them ruled out.
Then you can decide which specialist you want to go to. Get some basic blood work going. CBC too and check iron. We did that after 5 years of symptoms for my dd and found mycoplasma pneumonia.
Out east you have lots of docs to choose from.
On the lyme board here they use Igenex for lyme testing.
-
This is an interesting thread!
Michael or anyone, does it matter where the electrical lines come into the house? I have thought about this before because my son's room is just above where the box is outside the house. It goes in the basement to the main box which is below his room.
How would I neutralize that?
I did see on a home show once a family of engineers who smart wired their home using a mesh in the walls to keep the emfs away and they used a special paint on the walls. Does anyone know about that paint?
Is one measuring device more accurate than another?
-
Omnicef can cover pneumonia too. Can go to drugs.com and read about it. also rxlist.com
some strep pneumonia strains are zith resistant esp out east.
If you have omnicef and can give at least 10 days you could cover for both strep and pneumonia. It does sound like it could viral or strep.
In my prayers
-
Amy, I crush a zithromax for my children to take each day. I do use an actual pill crusher that really gets it into a powder. We have found that they do the best with chocolate ice cream. I put about 2 tablespoons of ice cream in a small bowl, let it get soft and mix it like soft serve ice cream and mix it all up. We do it in 2 big spoonfuls. They do ok with it and follow by regular scoop of ice cream or cookie. Washing down with milk helps too.
Otherwise, I have heard from our pharmacist that root beer masks anything.
-
LLM, that was the perfect amount of information. Thank you for sharing it. I appreciate every word.
I've ordered the Igenex test and will get that going. My dd's tic/compulsion is getting worse and I have to move forward.
Sarah, how it going today?
-
Sarah, Ithere too with my buttons being pushed with really extreme behavior and acting out. I feel like my fuse is so short and I am immediately thrown into fight or flight mode. I have to force myself to count to 10 and breathe steadily. It doesn't always work.
I am learning from your post here too Sarah so I hope
you don't mind my asking a few questions within your post.
LLM, I was recently thinking that family therapy could really help us. This is really taking its toll on all of us, and my marriage. But I have a stupid question. How do I begin to implement all of these things? I mean, how do I find a CBT and a family counselor? I asked my doctor about CBT and I don't think she had ever heard of it. AND, how did you go about your lyme discovery? Is it the lyme treatment that finally made a difference?
-
Sarah, I think we each replied around the same time. I see you are doing the motrin. Consider compounding it.
Also, did someone tell you that the Cunningham results will have an effect on insurance coverage? We haven't done it because it is so expensive and I already know we have pitands and it is research only. I'm curious about it being a "diagnosis".
Hang in there. I'm a mess too. I just couldn't believe I was staring at my second child beginning to tic the other day. I am so ensconsed in PTSD that it just keeps beating me down because there is no "post".
You have a very good doctor. Hang in there.
-
Hi Sarah,
I'm sorry a virus came through. I know you are anxious. Give it some time. It may exacerbate a bit and then settle down.
Can you explain more about not being able to control her body? With my 5yo who just developed a tic for the first time he spits at his sister and says really mean things when they fight over a toy etc. Is that what you are seeing in your dd? We just started zith on him as well and the tic is better. I have been doing motrin every 6 hours since yesterday. I think it has helped to calm my son, but my daughter's tic/compulsion is still the same.
Thanks to you, I revisited the idea of the compounding pharmacy and found a local one who made the zith for my son. The pharmacist also said that he can compound ibuprofen with a doctor's rx. I am going to do that this week. The children's dye free motrin still has preservatives like polysorbate 80 in it. I agree with maybe trying ibuprofen for a few days with that virus.
How about trying that enhansa again for her? I have been reading alot about it and it is very anti-inflammatory.
Keep us posted.
-
My 5 yo (until recently non pandas/pitands) son started with urinary frequency a couple of months ago. We tested the urine many times and even had an ultrasound. Our doctor gave him 2 weeks of zithromax because his sister was positive for myco p and the urinary frequency was no better and no worse. She then gave him 2 weeks of augmentin to cover for strep just in case, and his uf got much worse while on the augmentin. We did stick the 2 weeks out though.
We then went to a pediatric urologist, conventional, only one at our hospital, and she said that when all tests are negative you have to look at what the patient is reacting to in the bladder. She said that some of her pediatric patients are sensitive to drinks with high vitamin and mineral content and some are sensitive to dyes and artificial flavorings. She said that her cases of urinary frequency always increase after halloween and Christmas. She said you have to look at what is being dumped into the bladder. These things are not natural food and the bladder gets irritated. She suggested going dye free for 2 months to see if it helped. I think his urinary frequency increased with the augmentin because of one of the dyes/fillers in that liquid antibiotic.
I did some research and also found that people sensitive to dyes (which have phenols) are also sensitive to salicylates. My son stopped with the urinary frequency after we eliminated dyes/artificial everything and eliminated salicylates like blueberries, pineapples, apples etc. We did forget about the pineapples one day and he had a pineapple drink and had urinary frequency all that evening.
Now, with that all said, I do believe in the brain organ connection that Colleen described. I think that somehow things with the brain are triggered. I think that the connection of the brain to all of our organs is delicate and important and when disturbed things go awry. The DAN! doctor protocol for autism certainly recognizes the connection between the intestine and the brain as they describe and treat the "leaky gut".
My son did have alot of dyes around the time of his onset of urinary frequency and salicylates. Those were also in his intestine obviously. Although his urinary frequency improved, he now has started with a complex facial/leg tic. He could have a sinus infection as he had some stuffiness/cold symptoms and pain around his eyes. Our doctor is treating him with 10 days of zithromax and we are already seeing an improvement.
So, in my opinion, the wheels were put in motion with these sensitivities and we had a breech in the blood brain barrier at some point (he has had strep in the past, with symptoms and treated) and now we have PITANDS. And I continue to have PTSD. Except there is no post scenario yet.
-
Tampicc, did the head nod come back after a while? Even after the steroids? How long had the head nod been there before you tried the steroids? How long and what dose of steroids did you give?
Thanks, just want to know because we have a tic/compulsion now for 5 months now that is not going away on just abx. Have been afraid of trying steroid but have to do something.
-
Maryland mom,
My dd8 ha a T&A in Nov, and I am seeing those clear, very small blister like things in the area where her tonsils used to be. It is still bumpy back there as well, like just bumpy tissue. Do you see those bumps in your dd who had a T&A? Where the tonsils used to be?
My dd has been in an exacerbation for a while now, maybe stating to come out of it, I hope. They are not painful to herand I haven't checked lately - she is still asleep so I can't check now. She has also had white stringy stuff in the very back of the throat, where you see post nasal drip. I did see that post T&A and wonder if it is still draining from the adenoids. Or if it is from milk is my other guess.
Do you mind looking for me and telling me what you see?
For your 5yo, I have never heard of clear bumps for strep, maybe something else, or a virus. I do know that little red dots especially on the top of the uvula are strep. Like pin tip size dots, but a fair amount of them.
-
I sent my pediatrician the NIH article and then called her today to tell her that my daughter is doing significantly better. She said she does not believe my daughter has PANDAS. Her reasoning...
1. No Choreiform movements.
2. she would not be reacting so well to the antibiotics if it was PANDAS
3. she said since it has been going on so long? I had explained to her that my daughter has gone through phases before where she was obsessed with something. I know it was not everyday but rather I can now remember back(a year or two ago) that she my have had periods where other things may have been going on. I have no idea if it was tied to illness or not.
She said too that even if she did have PANDAS we would send her to a neurologist and get her treated with the same medication that they use on kiddos with OCD.
I am not denying that there is a possibility that my daughter truly has OCD but I still feel like this looks suspiciously like PANDAS. So, now I am doubting myself and my assumptions. Could use your help here to give me that nudge in the right direction. I am not a Dr. and don't want to act like I am. My Dr. said that there are pediatricians that still do not believe in PANDAS but that was not how she felt. Anyways.....support would be great right about now!
I understand the doubting. You are so new to all of this information. Your doctor has no experience with this. I believe yours is a case of classic pandas. Did you buy the Saving Sammy book?
What I would do if I were you, post here where you are, ask for doctors who have experience in your area. You can do phone consults with many if not all of the pandas docs. Dr. Trifilleti in NJ is a good one to work with on the phone. He can work with you or with your doctor. Google him for his website. I would suggest a longer trial of antibiotics, trying if you can to not have a period of time in between. You can get some testing done like titers, other infections etc. while on the longer dose, giving you time to make decisions. You may want to seriously consider prophylactic antibiotics when she is back to 100% or close to it. Make the call tomorrow so you can get the ball rolling. you may just need to get a new doctor soon unless she is willing to consult and listen to a pandas doc. And in time, do consider blood work for other infections to rule things out.
-
Nojo,
I can tell you that we have chased strep for years for my dd because of PANDAS with strep infections. Most recent onset of motor tic/compulsion, we had full immune work up through Dr. B and mycoplasma pneumonia came up positive IGM (current) no other symptoms. Follow up test showed slight increase in IGG and IGM normal. She was put on zithromax by chance and did improve well at first.
In reading alot about myco p, there are proven, researched links to neurological issues, like with lyme. It is a nasty bug, like all of them.
You asked about co-infections, on the lyme board I have read that ticks can carry strains of mycoplasma, although I have read not the myco p.
My guess is your immunologist will be open to all testing. Just do it all!!! Lyme, myco p, viruses, immune complexes. See if your immunologist will do lyme through Igenex. We broke up the blood draws into 5 vials each time so my dd could handle it. You never know what you will find. We were very surprised at the myco p!
-
Yes, I'd say your angels were guiding you. I would print out all the helpful threads pinned here, buy 2 copies of Saving Sammy and give one to your doctor before this rx runs out and request a longer dose, at least double, and in my opinion, ideally a month. Then go from there to consider/research prophylactic dose if she is back to 100%. If she is on amox know that there is a high failure rate with it. Augmentin and omnicef have better clinical records. Do your best to get enough for your other child to clear him as well. I would check both of their titers. ASO & Antidnase b.
She has textbook PANDAS with the proven strep.
-
My goodness. This is a tough road. I am so glad you are getting answers. Do you mind sharing what these tests were exactly and how do they know they are chronic? Not doubting it of course, just wondering is is an IGG verses an IGM. Also how do you find out about fungal infections? Just wanting to know exactly how to get these answers. Blood, stool, urine etc.
So what is your first step?
-
I'm just throwing this out there Wilma. What if you took out all milk products for 10 days or so and see what happens. Not just with the headache but with everything. I know you don't think food affects her, but you never know. It could be worth a try.
-
I was going to ask the same about the bentonite clay. And what does it do exactly in conjunction with the high dose probiotics?
Also, LLM, I think it was you who told me about theralac and I now give the children's powder once a day. With my dd in school, I can only fit in one time away from the abx. I didn't know about the bedtime though. That is good to know. I could give 2 X on weekends.
And LLM, with the poop test, all was clear? no yeast, etc.?
Our plumbing issues are constipation. I used to give florastor too as I read it was good to keep yeast away, but also read it can cause constipation so we stopped it. I would say we are maybe a little better without it in terms of the constipation.
Lismom, we give zith once a day too and our exacerbation is not getting better either. I do wonder about yeast as well. We need a lyme or DAN! doctor right to do the poop test?
-
Hi Sarah,
I don't know if you saw my response to you in another post... but I know your mommy gut was telling you zith! How long are you going to give it? Are you getting it through a compounding pharmacy?
-
Joan, my mom had it and in the hospital she was given iv zosyn. She was sent home on augmentin so that may be the oral equivalent. I know that there is an antibiotic that is becoming resistant to strep pneu. especially out east. I am pretty sure it is zithromax. Does this non pandas have any symptoms? Any issues whatsoever?
-
Joan, Yes I would agree it is time for a new doc, for both children. Are you thinking about longer run of abx for non pandas son? To eradicate. I would say fight for that. Good that they are running sensitivity testing on the bacteria. Let us know the type. I know you have been on here a long time but if you post again where you are maybe others can help find a new doc. Sorry you have this struggle.
Identical Twins - Only one with Pandas
in PANS / PANDAS (Lyme included)
Posted
yes, EAmom read my mind about the second son being pandas/pitand also and the tetracycline use helping him. Have your doctor friend read the Sammy book and read all the things you print, she may likely be a non-believer. We all have lots of strep in our mouth all the time that is normal etc. Strep is part of what causes cavities. Lots of bacteria in there. That's why they used to have people with mitral valve prolapse take abx with dental work. I would bet that had something to do with it, and perhaps exposure to his aunt. Sounds like you have a good base to start with. Good luck.
http://en.wikipedia.org/wiki/Streptococcus_sanguinis