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cdnmom

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Posts posted by cdnmom

  1. B Complex vitamins

    in PANS / PANDAS (Lyme included)

    Posted

    Wow, well if I didn't already have info overload......how do you folks know all this? I am so grateful for you people. I have to go back and re-read every sentence 10 times just to get the jist of it....lol. Anyhow, what type of doc/specialist deal with MTHFR mutation? Does Dr. T. or B. test for this mutation? I'm afraid to give ds the B's now that I know it is aggravating his tics, but his BIE practioner says his body is lacking (she knows nothing about Pandas though). So, I can buy the B's separately and try one at a time to see how he reacts to each one individually? The MTHFR test itself sounds complicated.

  2. B Complex vitamins

    in PANS / PANDAS (Lyme included)

    Posted

    Yes, I recall reading the issues with methylation among pandas children....just information overload on my part. I'm still new to all of this and try to remember as much as possible. I searched the forum on vitamin B's but did not get much. I will try methylation. I have had a phone consult with Dr. T. who sent me a panel of 16 blood tests but the MTHFR gene mutation was not among them. I'm assuming it is not on the initial "basic screening" tests that he does? Maybe it's worth testing, seeing as my ds is reacting to the B Complex. His multi also contains B6, B12, inositol, and folic acid....now I'm wondering if I should take him off of this too?

  3. B Complex vitamins

    in PANS / PANDAS (Lyme included)

    Posted

    Can Vitamin B Complex aggravate tic symptoms? Started my ds8 on them yesterday morning and by this evening his tics have been acting up. He was on double the adult dose as per his BIE practioner. She said the body will deplete what it does not need. I've tried searching the forum but came up short.

  5. .

    in PANS / PANDAS (Lyme included)

    Posted

    I, too have had Pseudo Tumor Cerebri. Got it at the age of 34, 4 months after having my first child (the one who may have Pandas). The docs here in Canada told me that they really don't know why people get it, but usually present itself in obese women. Well I was 140 pounds when I got it, so that was not the case for me. They also told me it could be hormonal related and the fact that I had just gone through pregnancy and given birth, that may have been what caused it. 3 years later I was pregnant with twins and was terrified the disease would return, but, it did not (leading me to believe that it was probably not the pregnancy either). I was also given the stat's you were quoted, that 1 in 100,000 people develop this. You may be onto to something here, very interesting.....also discouraging, because just like Pandas, the docs don't know much about this disease either.

  8. tics starting again

    in PANS / PANDAS (Lyme included)

    Posted

    My ds8 has been ill 4 times now since Feb. He began ticcing a couple of days before each infection the first 3 times (I knew he was getting sick bc of his tics). After the 3rd infection, I rolled up my sleeves, gathered all the info I could and walked into my MD's office (I am from Canada), and "convinced" her to give my son zith. She shockingly gave me 15 days worth and once on the ABX, my son's tics almost completely subsided. Once off the zith, his tics slowly returned but were not bothersome as they were mild. His fourth time getting sick (last Tues - July 3rd), was different. He got sick and I was both surprised and delighted to see NO INCREASE in tics, that is, until 2 days ago. After being sick for 10 days, the tics reared it's ugly head. My question is this, if this is Pandas, and a doc was to RX ABX....how many days would they give him? I want to try to talk to the docs here again but don't have any evidence or facts relating to how many days to give him. If I can even find anyone to RX for us, they will likely only give me a regular course which is only 5 days. I was hoping you could share some of your experiences as ya'll have a lot more knowledge and experience with Pandas.

     

    Diane

  9. Dr. T. or B?

    in PANS / PANDAS (Lyme included)

    Posted

    So I am scheduled to see Dr. B. in Sep for my ds8 (we are from Canada)......it took me a few weeks to decide which doctor would be the best suited for our situation. I chose Dr. B. since I am aware he does a good workup on what could be possibly going on with his patients. I have since then, been hearing that he is not very good with long distance follow-ups.....and I have been hearing that Dr. T. is good at responding to e-mails, phone consults, etc. I was hoping for some feedback.....this trip will be very expensive for me and I really don't want to have to do it again with a different doc in order to receive the proper long term, long distance care. Any ideas?

     

    Diane

  12. suggestions for antibiotic use

    in PANS / PANDAS (Lyme included)

    Posted

    He was on 10 days of penicillin when he tested pos for strep a year ago....then tics began 6 weeks later, then on cefprozil (can't remember how long) but was either 5 or 10 days....no longer. On the 3rd day of cefprozil, the tics completely stopped for 5 days, then started up again but less severe and continued for 2 months, then disappeared for almost 1 year.

     

    My husband got the extra 5 days today, does anyone know how long they are good for? A note on the bottle says to discard any unused portion after 10 days....just wondering if I have the option of holding onto it for future use at this point.

  13. suggestions for antibiotic use

    in PANS / PANDAS (Lyme included)

    Posted

    I did tell the family doc that DS's tics had initially stopped a year ago after 2 rounds of antibiotics but she was not convinced. She took a throat swab this time (couple of weeks ago) which came back negative for strep and for that reason was reluctant to give him the antibiotics. I think what convinced her was all the information I brought with me regarding pandas, available to me through this wonderful forum, along with my persistence....but she gave me only a 5 day course. Once that ran out, I went back to her and told her that his tics were almost gone.....she did document that in her file, then gave me another 5 day course with a repeat but warned me of the side effects. She did not advise me to give my son the 2nd or 3rd round of ABX, but was merely being receptive to my thoughts, ideas and research.

     

    So I guess I am a little afraid to make these types of decisions on my own without the guidance of a knowledgeable doctor, but I also felt the need to act somewhat quickly while DS was going through his episode. I did not want to miss that "window of opportunity" if it meant the possibility that the ABX might send him into remission, as I believe it did last year.

     

    I thought this forum was the best place for answers....given my situation. I have read that many folks try long term antibiotics but they usually have somewhat of a diagnosis.....I, unfortunately do not. But, based on my son's history, I believe there is a good possibility he may be a Pandas child. I am the only person who can treat him right now, with what I have available, just not sure what treatment is best for him.

     

    Thanks for your thoughts.

    Diane

  14. suggestions for antibiotic use

    in PANS / PANDAS (Lyme included)

    Posted · Edited by ash

    I am from Canada and as many of you know, it is extrememly difficult to get any medical support out our way for Pandas. My DS8 has not been seen by a Pandas specialist yet (we are in the process of getting a doc over the border), so we have not been given any "formal" diagnosis of Pandas. When he was 6 he tested positive for strep, 6 weeks later began eye ticcing. He was put on antibiotics twice and tics disappeared for 1 yr. Since this past Feb he has had 3 infections (no pos strep infection), each of which came about 2 days after severe new tics (eye rolling, head jerking, vocal inhalations, etc).....in fact, by the third onset of tics, I told my husband I had a feeling he was going to wake up sick and sure enough, he did.

     

    This is when my naturopath, and I, began to travel down the Pandas road. I was lucky enough to get 14 days of zithromax from family doc (who has never heard of Pandas), and was reluctant to give me the antibiotic but gave in to my pleading. Since starting the antibiotic, his tics have almost completely come to a halt.

     

    My doc gave me another 5 day repeat (which I have not filled yet). I am not sure if I should give him the last 5 days of zithromax and was hoping to get some suggestions here. I am not a Pandas expert, in fact, I am in the initial phases of dealing with whatever it is that is going on with him. Nor do I have any doc who can guide me in any way, so it all boils down to me making a decision on my own.

     

    I just dont know if I should continue with the repeat of abx. Am I harming him by giving it to him for an additional 5-6 days? Any information would help. Today is the last day of the intial 14 day course of abx.

     

    Diane

  15. Pandas doctor in Buffalo area

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks everyone....I have contacted Kim Ballot who has informed me that there are no Pandas specialists in the Buffalo area....stretching all the way to Syracuse, so I really don't know where to go. I was hoping for a place that was not too far to drive since budgeting for this is an issue for us. We are only about a 2 hr drive to Buffalo. Well, back to the drawing board.

  16. Pandas doctor in Buffalo area

    in PANS / PANDAS (Lyme included)

    Posted

    Hello all,

     

    I am from Canada and as most of you know, it is a real problem trying to find a doctor who supports the Pandas idea out here. I am willing to travel to Buffalo to see a Pandas doc. Does anyone have any referrals for a good doctor out there? I've been on the facebook Pandas page where they have a long list of Pandas docs in the U.S. but there are none listed in Buffalo.

     

    Also, out of curiosity, does anyone know how much it costs to get ivig treatment in your hospitals? I'm sure it's expensive, just wanted to get a general feel for what I may or may not be looking at down the road.

     

    Thanks,

    Diane

  19. milk substitutes

    in Tourette Syndrome and Tics

    Posted

    Chris....it was not you who discouraged me, it's this entire process that is extremely difficult....just accepting the fact that my son has TS has been a challenge. This is the beginning for me, and I am sure, that with most people, probably everyone who has a child with TS has felt those same discouraging feelings at some point or another. Thank you for your input and sharing your knowledge, please do not keep quiet. What you now said, in fact, has made me feel better....I am seeing an environmental doctor in 2 weeks time and I was not sure he was the most appropriate (but that is just because of lack of knowledge on my part), but after speaking to the nutritionist there and knowing that folks like yourself have had success with one, really helps ease my mind as far as moving in the right direction goes. I just wanted to get a head start and wean him off of milk since the appt is still 2 weeks away but that just didn't go so smoothly. In a perfect world there would just be a handbook of all specific foods to eat that we could all follow but if it was a perfect world, we would not be dealing with TS to begin with.

     

    I do appreciate your input, even if I let my emotions get the better of me, learning and becoming knowledgeable will only help me to help my son.

     

    Thanks,

    Diane

  20. milk substitutes

    in Tourette Syndrome and Tics

    Posted

    If I wasn't confused to begin with, now I really am!!! Who do we turn to to advise us on what to feed our children? Where do I start? Are nutritionists a good place...I don't know where to turn or who to talk to. The internet is resourceful but overwhelming at the same time. What seemed to be a fairly easy task (buying substitute milk) has turned out to be discouraging to say the least. I can't imagine changing pretty much our entire diet. I feel like I am failing before I even start. I could really use some suggesstions. I don't want this to send me into a downward spiral but I'm finding it very hard to stay positive right now.

     

    Distraught mom,

    Diane

  21. milk substitutes

    in Tourette Syndrome and Tics

    Posted

    I have an appt to see a naturopathic doctor middle of April for my 7 yr old son who may have TS so I thought I'd start off by eliminating his dairy for now. I visited the grocery store this morning to find a milk replacement and was quickly discouraged and overwhelmed by what I saw. I was going to try an Almond based milk but these were the ingredients:

     

    Almond Base (filtered water, almonds)

    tricalcuim phosphate,

    tapioca starch,

    canola lecithin and/or sunflower lecithin,

    salt,

    natural flavour,

    sodium bicarbonate,

    carrageenan,

    vitamin A palmitate,

    zinc gluconate,

    riboflavin,

    vitamin D2,

    vitamin B12

     

    I am no specialist when it comes to healthy eating but I have no idea what most of these indredients are. And most of the other types of milk were no different (rice milk). How do I start my son on a strict diet when I can't even get past what seemed to be an easy task of buying almond milk. Would this milk have been a healthy substitute? Does anyone have any suggestions regarding milk substitutes?

     

    Diane

  24. integrative doctor vs. naturopath

    in Tourette Syndrome and Tics

    Posted

    Hello everyone,

     

    I am new to this site and new to the entire tourettes syndrome.....I am in the initial stages of dealing with my 7 yr old's TS symptoms and am having a difficult time making a decision between seeing an intergrative medical doctor or a naturopathic doctor who specializes in ADHD, OCD, TS, etc. Does anyone have any advice/experiences or shed some light???

     

    Diane

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