vermontmoms

Update... Ok I got the boys anti-neuronal antibodies back. Twin A - had normal values on Anti-Lysoganglioside and Anti-Dopamine 2, he had end of the normal range on Anti-Tubulin and his Anti-Dopamine 1 was 2x the highest normal value. Twin B - had the high end of every normal range except Anti-Dopamine 2 which was in the middle of normal. What does this mean in conjunction with their CamK values? Thanks, Jen

Where can I find out what the ranges and what the Values mean? Does Dr. Cunningham test these? Thanks! Jen

Thanks for all the new posts...Yes, we used to live in VT (Burlington) and yes, it was beautiful. We have since moved and currently live in Maryland about 20min from Dr. Latimer. We have set up an appointment with Dr. L now that we have had more testing on the boys. We have considered PANDAS for over a year and have been doing trial and error treatments with ABX. We have seen a clear pattern of reduction of symptoms everytime they are on an ABX, especially AZith. Our ped is reviewing the information and is going to call me today to discuss our next steps for the boys. Now about our other results...no we haven't received anything else from Kathy/Dr. Cunningham. The rest of the results were on Dr. C's desk and we will hopefully have them by tomorrow. Thanks again, Jen

Thanks for all the comments... I called their ped on Friday and she is reviewing the results and the article from Cunningham's office. Hopefully, she will start the boys back on Azith on Monday. It really takes their tics away...I will keep you posted on their progress. Thanks again, Jen

Thanks for your fast response...but things are still unclear. Do their numbers indicate PANDAS? Also, how would we test for those other infections you mentioned? Thanks, Jen

Well, we got the CAM II results from Dr. Cunningham's office today and I was wondering what this means. My twins had the following CAM II results: Twin A - 156 Twin B - 149 From her attached letter it appears both are in the mid-PANDAS range. Did I read this correct? The reason I asked is because we are in an exacerbated tic phase with our boys. They were doing so well after two rounds of antibiotics, which ended a month ago...now the tics are back in both boys (Vocal - throat clearing, clicking, and snorting, etc. - Motor includes: blinking, rolling left ankle, neck twitch, squatting tic, finger sniffing, etc.) Does this mean we should start the antibiotics again? Any help would be greatly helpful... Jen

Well, some of you responded to my post over the weekend when we were in die-off or (herxing) nightmare this past weekend. So I thought I would post an update... After I posted we talked to our ped and she said to add benedryl and magnesium. We added both and when he woke Sunday morning he was like a new child. Yes, his tics were still there but they were very mild (especially when compared to Saturday when he could barely breathe b/c of his constant tics and couldn't walk more then 12ft without having to stop and stretch or squat). On Monday, when he returned to school the teacher told me that afternoon that she would have sworn I sent a different child to class then the one she had on Friday. Today (Tues) was even better as I heard no tics before school and only minimal ones this evening. We still have a week and 2 days on this trial round of Augmentin but it is clear to me our son has PANDAS and not TS. We have been tracking his tic cycles since he was 5 (started when he was 3.5 after his first dx strep infection) and each bout has been associated with strep or a severe cold (which could have been strep but was dx as a flu or similar). This last episode has been the most obvious since he was tic free since his outbreak of scarlett fever (which documented and treated) last April until end of Oct. In the end of Oct. his best friend tested positive for strep. Once he was exposed to strep his tics started going crazy. In early Nov. he now had typical motor tics along with several complex tics. By the end of Nov. his motor and vocal tics were off the charts (approx. every 4sec.) and his complex tics were happening everytime he walked or stood. His behavior also drastically changed and he became very literal, rigid and difficult. During this episode we conducted testing (blood ASO titers along with other titers and extra blood work). In addition we requested the kit from Dr. Cunningham and got his CamK testing done also. Our ped. agreed with us that our son could be suffering from PANDAS and she agreed to put him on a trial does of Augmentin. So far the Augmentin is really helping give our son relief. He is thrilled b/c his tics are doing so much better. As any parent who has to witness PANDAS, we are elated that he is doing so much better on the abx treatment. All this said....I am unsure where we go next? Now that we know it is PANDAS...now what? We live near Bethesda, MD so we are going to get an appt w/Dr. Latimer scheduled and take all the results to her. But what do we do in the meantime? Do we keep him on ABX? Or do we finish this course of ABX and then see what happens when he stops? Thanks for any help you can offer as we feel clueless...this is a new territory for us, even though we had a feeling it was PANDAS for a year or more. Take care, Jen

I pray you are right...It has gotten progressively worse since the antibiotics started (is that ABX?). End of day today will be 72hrs for us...if we last! I just had him in the tub w/epsom salts and he was much better...he said being in the tub was like a time-out for his tics. I made him stay in for almost 30mins and he was in up to his ears. He was having fun and blowing bubbles and making funny noises in the water. He was being a normal kid and it gave me hope...now he has been out for almost an hour and we are back to constant ticcing and severely moody. All I can say is I pray 72hrs is our lucky number...I feel like I am fighting a losing battle right now as all his symptoms from the last 7yr are coming out at once and about 1000times/min. I am going to go out and run an errand and get more epsom salts...I have never looked forward to Walmart more than I do right now. I hate to say that but it is no fun where we are right now! Please send positive thoughts our way...Thanks for your reassurance! Jen

Ok, background....my son started having tics when he was 3.5yrs. He is now 7...In the end of Oct. his best friend had strep. My son tested negative on a rapid test but his tics started again almost immediately after exposure (last time he had them was last April when he had scarletina). They started off mild but have progressed to where he can't even complete a word. Before antibiotics were started, at his worst they were every 4 secs (vocal sniffing/snorting noise). We have suspected PANDAS so we already requested the kit from OSHSC (Cunningham) and met with our ped on Wed. On Thurs. we took them (my twin boys) for blood work and had the plasma shipped to OSHSC. Our ped also started our son on Augmentin. Since Wed. his tics are getting drastically worse! His complex tics are elevated (has to stretch/squat every few steps), shoulder shrugs and trunk movements are also happening several times in a 10min period and his sniffing is constant (as soon as 1 snif/snort stops the next on begins). IT IS CONSTANT! My muscles are so tight from the noise and it is affecting everyone. Is this normal die-off or is it something else. Is there anything that can help? I am going to get earplugs today b/c I need to help him but can't take the noises as they make me so edgy from the constant snif noise. How can we help him? We are doing several massages daily for him as his shoulders are like rocks from the constant sniffing which makes his muscles tighten in order to make the tic. He is also very irritable and very pushy to everyone. I am going to do a epsom bath on him and let him sit in it to see if that pulls out the toxins that are being released. This is so painful to watch and deal with....Please HELP!!!! Jen

I was wondering if anyone had a link to a tic/OCD tracking log (ie. symptoms/freq/intensity)? We are creating a tracking log for our son's teacher and didn't want to recreate the wheel if there was one we could use already... Thanks!

Thanks for the information about the antibiotic, unfortunately we can't get them changed today b/c everything in the DC metro area is closed due to blizzard conditions. When our Peds office reopens, I will forward the article to her and ask to have them changed. How long should I ask that they be on Augmentin or azithromycin? This is interesting b/c with H1N1 they were both given a azithromycin (z-pak) and recovered rapidily. How often can you take Azithromycin? My one son, twin B, has been on it during the first week of Nov. and again over Christmas break (Dec. 23 to 29th) and the other one, twin A, was only on it during the first week of Nov. Given their symptoms and behaviors does it seem like we are battling PANDAS? Thanks again for all your input! Jen Ps. Can anyone tell me more about what to expect from Dr. Latimer? And what treatments she will recommend for treating PANDAS?

Ok, we are still very new in this PANDAS expedition. My twins are 6 and one (twin A) was dx w/TS and OCD almost 2yrs ago. However, his tics started at age 3 and his behavior has been very difficult way before 3 but it does get drastically worse when tics flare. His twin bro, Twin B, never had tics until they had strep at age 4 and those only lasted about 2mths and he has been tic free until now. That said, he is very sensitive to textures, dirt on hands, wetness, and smells; he also is very busy and always is moving in his seat, so much so it is very hard for him to sit w/out getting up and walking while eating. In school he is fine but he is very sensitive to any criticism and cries easily. So now to our recent event....On Wed of last week, Twin A came down with Scarlet Fever. This was confirmed on Friday when we went to the peds and were prescribed antibiotics. The ped did cultures on both boys and they both came back today as + for strep. Neither twin has had any tics and only a few behavior issues since Nov. (they both had H1N1 and were put on antibiotics and drastically changed and all tics stopped for 3mths). This last week we have noticed that Twin B has started smelling his fingers after he touches anything. Twin A's behavior has also gone rapidly downhill and his tics are back. His hand tic is so bad that I could barely cut his fingernails; his vocal throat clearing has also returned. Behavior wise Twin A has become very rigid again and literal. He also has severe tantrums and is yelling at us over little things again. His Twin, Twin B, has also started being very negative (ie. calling his twin and random items dumb and losers). The boys and myself are on Amox. for 10 days (we are only on day 5). The antibiotics are not helping the tics/behavior which is increasing in severity daily. Does this suggest PANDAS? We haven't done their titers yet but have the script to go and will go as soon as we get our kit from Dr. Cunningham. We are also doing all allergy panels at that time for both boys too as they both have had excema. What do you suggest? Does this sound like PANDAS? When is the best time to do labs with this recent infection? We will see Dr. Latimer after our panels are done in about 3wks. She is going to see both boys during our initial visit. What can we expect from her? What is the normal treatment if she confirms PANDAS? Thanks in advance for your time and help!!! Jen

Well, we were officially dx with Scarlet Fever this AM. My twin boys are on Amox. for the next 10days. My one twin has already been dx w/TS over a year ago and we are due to see Dr. Latimer in3wks. How will this new infection affect his testing? Could this new infection make his symptoms worse or will the antibiotics make his tics subside? Also, my non-TS twin has started showing signs of OCD type behaviors over the last week. He is smelling his fingers over and over after he touches things. He had mild tics (brushing up of his bangs and a clicking noise) during his first strep infection when he was 4 (2yrs ago) but those went away after 2mths post-infection. We are very concerned that he will develop tics from this new strep/scarlet fever infection. What do you recommend? Should we have Dr. Cunningham test run on both boys for PANDAS? Should we have Dr. Latimer see both boys? Thanks for any help and suggestions you can provide! Jen...

If you don't find a coat before you land you could try some shops once you get here. Trust me you will want a coat while you are here...it has been bitter cold. We were in the mtns of Colorado and it was warmer there than here...the moisture plus the wind will chill your bones.... Here is a list of a few consignment shops in Gaithersburg: Life 4 Animals Thrift Shop (301) 963-1444 15938 Luanne Dr, Gaithersburg, MD 20877 Tina's Consignment Shop Incorporated (301) 921-9220 289 Muddy Branch Rd, Gaithersburg, MD 20878 Chic to Chic Consignment 15900 Luanne Drive Gaithersburg, MD 20877 Ph: (301) 926-7700 E-mail: info@chictochic.com Also, don't forget about Walmart. They had the puffy coat that Oprah had on her giveaways...at our local store the price is really cheap now. If you are staying off of Fredrick Rd. in Gaithersburg there is a mall nearby and Walmart and Target. If you are staying on the westside of Gaithersburg, there is also tons of options near the Washingtonian Center off Sam Eig. We live very close to where you staying. Hope that helps.... Jen

Good luck on your upcoming trip! We are just outside of Bethesda and it is VERY cold here so pack warm clothes. We are to get more snow late Friday to Sat. which could affect your return flights. I am eager to hear about your appt. w/Dr. Latimer b/c our appt is next month... Now about flying....I am not sure where you are flying from but we just flew cross country w/our two boys and I got two new lego sets for my boys; I had them gift wrapped and had the airline attendant give them to our boys since we flew on Christmas day. It took them most of the flight to put the new lego set together and the flight went awesome. On our connecting flight the boys got a Rubics 360 and a Rubics Twist again the new items kept them busy and entertained for hours. I don't know what your child is interested in but for us something new always helps us travel better. Also, I packed lots of approved (feingold diet) snacks for my boys so we had plenty to munch on which helped keep them regulated. We also always bought water bottles at the terminal to take on the flight and pre-purchased some approved gum so my boys ears didn't hurt on take-off and landing. Well, good luck on your trip and please keep us posted on your appt! Take care, Jen

Ok, this topic is near and dear to me as well. My twins bookend a girl in their kindergarten class who just came down with H1N1 yesterday. Even before the outbreak in their class I had decided that I would not vaccinate. We haven't vaccinated them in over 2yrs I am not going to start now....That said, I am doing all I can to keep them healthy (see supp list below) so we will see how we fair over the next few weeks....In my personal opinion, there are just too many loop holes and too many additives in vaccines today and I am not willing to risk my children's future. If you want, take a look at these websites before you make your final decision: 1) http://www.mercola.com/article/swine-flu/S...lu-Update-2.htm 2) http://www.nvic.org/ 3) http://www.drjaygordon.com/development/new...efluhighanxiety 4) http://www.medicalvoices.org/en/vaccination/articles/ 5) Adjuvants and Cytokines I - the Curious Case of IL-6 http://www.newfluwiki2.com/diary/4045/adj...ous-case-of-il6 6) Adjuvants and Cytokines II - The Meaning of "Reactogencity" http://www.newfluwiki2.com/diary/4051/adju...-reactogenicity Now, about staying healthy and building up your natural immunity....For us, I give my boys antivirals that have been shown effective during previous swine flu outbreaks and the bird flu. Elderberry extract has a long history of providing protection against similar flu strains....just google Elderberry and flu and you will get a ton of results....Now for our personal run down of supplements... Our Supplement list:-Elderberry extract (The elderberry w/out echinacia b/c echinacia builds up mucus and can help the H1N1 virus replicate. -Zinc, -2000iui of D3, which I will up to 5000iui if they get sick (if you are worried about toxicity see references below) -Probiotics, -High doses of vitamin C -We also do salt water gargles and salt water on Q-tips in the nose which changes the chemical make up in the nose and makes it unfriendly to viruses -Multi too. Now about vitamin D toxicity....2000iui is not too much for kids according to the docs that I follow. Here are some links to his website and some of the published preliminary findings about vitamin D. 1) http://homefirst.com/ 2) http://www.generationrescue.org/pdf/H1N1-Vitamin-D.pdf (end of doc has dosing info for kids) 3) http://www.vitamindcouncil.org/newsletter/...swine-flu.shtml Also, here are interesting tidbits about Vitamin D toxicity: (1) Vitamin D is one of the least toxic substances to humans, overdose of vitamin D3 doesn't occur until more than 100 times (approximately one bottle of vitamin D3 tablets) the daily RDA has been taken daily for several months. Acute, one-time overdoses require over 50 mg (10,000 times the RDA). http://www.vitamindcouncil.org/research.shtml (2) We present a risk assessment based on relevant, well-designed human clinical trials of vitamin D. Collectively, the absence of toxicity in trials conducted in healthy adults that used vitamin D dose 250 µg/d (10 000 IU vitamin D3) supports the confident selection of this value as the UL (upper limit). American Journal of Clinical Nutrition, Vol. 85, No. 1, 6-18, January 2007 (3) Growing evidence supports a low risk of toxicity with vitamin D use in fortification or supplementation, despite its past reputation of potential toxicity in excess. J Nutr. 2006 Apr;136(4):1135- 9. (4) http://www.vitamindcouncil.org/vitaminDToxicity.shtml Well, I wish us all well in whatever route we choose for our families....For us the shot is too new and in my opinion the shots lately have caused too many injuries and deaths and I am not willing to take that risk with my child. I rather take the natural route that has shown no harm in past flu seasons. Already we are seeing people die from the vaccine and injured...here are just a few of the latest one making headlines... a) In Sweden they have already had 4 deaths from the H1N1 shot: http://www.theoneclickgroup.co.uk/news.php...d=3927#newspost b ) http://www.theautismnews.com/2009/10/15/je...siree-jennings/ c) http://www.belfasttelegraph.co.uk/news/loc...l#ixzz0VLgOTe38 d) http://www.wigantoday.net/wigannews/Soldie...cine.5768722.jp Hope you find this helpful... Jen

Thanks for all your help!!! We have contact Dr. Cunnigham and Dr. Latimer's office. We are transferring over my son's files and have an appt. scheduled for a PANDAS consult... Now another question this is about my other son (TS child's twin)... My other son has also had a strep infection but does not have tic symptoms like his twin brother. He did have mild tics (2 tics - one a pushing up of the bangs on his head and the other a vocal swishing noise). His tics went away 3mths after his Strep infection, however, he does still show some OCD behaviors (need to change outfit if drop of water gets on clothing, etc.) and some ADHD tendencies (ie. can sit still, sometimes he eats standing up or walking...getting him to sit still consistently in a chair to eat dinner is a task in itself), he also has difficulty focusing when external noise is present, etc.) Should we get the tests run on this twin also? If yes, how do we get this testing approved since his is not symptomatic? Finally, has anyone had success with getting insurance reimbursement through CIGNA with Dr. Latimer? The $580 is hard enough to swallow if we have to double that it will be almost too high for us to do w/out hope of reimbursement. Thanks again for all your help... Jen

I would rate my TS child a 5-6....he is sensitive to odors, doesn't like bananas, strawberry or yogurt smells along with others also....He is sensitive to sound especially as it relates to noises next to his ear (ie. kissing on cheek near ear, etc.), he is also sensitve to touch, tags and socks bother him, hot and cold also bother him and has caused numerous issues w/bathing and getting dressed. Taste and lights are also sensitivities to him as the TV makes his tics way worse and other flashing lights do as well. Taste is probably the least sensitive area for him b/c we attribute this to his personal likes and dislikes...but he has items that he will definitely not eat due to his tastes... HTH ~ Jen

My name is Jen and my son is 6 he has been dx w/tourettes, mild ocd and some sensory issues. His tics have gotten worse since his first episodes at 3.5yrs. Over the past 3 years we have been dealing with his TS, no one has mentioned PANDAS to us. He has had a strep infection at 4yrs 10mths that was confirmed by a strep test in the docs office. His strep titers were never run before or after that infection. This past year his tics have increased 10 fold and we are really going crazy with his constant vocal tics. We live in the DC metro area and would like to see a specialist that can help us. Can anyone recommend a doc that understands TS and PANDAS? Also, what type of tests will be run on my son to determine if he has PANDAS? How will these tests be run, stool, blood work, etc.? Thanks for your help, Jen

I have 6yr old twin boys. I don't know if we have Pandas. My one twin was dx w/tourettes, OCD, SPD a year ago but symptoms since 3.5yrs old. My twins have had speech therapy since 18mths and are finally being discharged. My twin with a TS dx had psychological testing and is in the superior gifted range...his memory is off the charts and he is very advanced in all subjects but his writing is just at grade level or slightly behind. His twin who also shows ADHD symptoms and had mild TS type tics after his strep infection at age 4, also appears to be in the highly gifted range as well.