

michele
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So you were able to convince a local Dr. to do the azith? Do most of you see local Dr.'s that know or understand PANDAS? Or do you travel to see the specialist who treats PANDAS? I have tried Dr. after Dr. locally and none of them believe or want to treat PANDAS. I even called a couple at Cleve Clinic that were on a PANDAS study and they were not interested. I don't get it? It seems OH has been tainted by someone on the subject of PANDAS. I can travel to Chicago or Penn or MD but it would be nice to have a local Dr. on board for the antibiotic azith at least. Even Gilbert in Cinn, OH who was on several Sweedo studies, seems really conservative to treatment. I keep dragging my son Dr. to Dr. with nothing gained but psych prescriptions. That is the belief in OH to treat PANDAS symptoms with psych drugs. It is so annoying! No local Dr's want to figure out why this is happening. At seven and eight my son was on bicillin injections every 21 days. I've since read bicillin should be given every 18 days. You might want to research recent trials using bicillin for prevention of bacterial infections. The benefits we saw w/bicillin included compliance (no BID!) and post-injection peak seemed to confer some ability to treat mild GABHS infections in a young child. Downsides--pain, soreness, low fever, and occasional yeast. Also, we saw evidence of declining efficacy when he was due for injections. At eight, he switched to daily oral pen. He had occasional break through GABHS infections on both bi & pen. Neither was very effective anti-inflammatory or to reduce wax & wane tics post-GABHS infections. We recently switched to azith proph. Took some convincing. MD favors pen for RF/SC. I already see modulatory & anti-inflammatory benefits. He doesn't have an active infection, but did in Apr, so titers aren't normal range yet. Azith controls his residual tics much better than bi/pen. We're not seeing tics most days, occasionally evening (or if he snarfs trigger food). A day or two after starting azith, he reported fewer urges, easily ignored. He now reminds me it's med time, which is high praise for a 12 y.o. I'll be monitoring break through frequency...and if azith expedites titer decline.
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Emma, You remember Alyssa the twenty one year old girl who has had PANDAS since age 10? She has posted here before. I talked to her and her mom. She had a relapse this year with a sinus infection. She has still been on azith for many years. It was her first big episode since she did alot of treatment years ago such as IVIG, and steroids at high levels. So I wouldn't be in a hurry to take her off of them yet. Especially if she is in remission. You never know. Better safe then sorry.
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Emma, I hadn't used Culturelle for awhile. I just got back from getting it at Walgreens. Maybe it will help. I am using Primodophilus and Kefir with it. If it doesn't help we will have to try to stop the antibiotics. Maybe I slacked on the probiotics for awhile and that is where this bowel problems came from when we added new meds. As ususal it is hard to know what is causing what. I hope your daughter is doing fine. I can understand your concern since she has been doing so well. Michele
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9 year old son with PANDAS on Cefdinir
michele replied to Alex's topic in PANS / PANDAS (Lyme included)
Hey Alex thanks for posting your information here. It sounds like you found out alot about PANDAS in a quick period of time. Lucky for you you were able to find some good Dr's who were knowledgeable and willing to help out your son. Many of us are not so lucky. Ohio is one of those states where the Dr's are still not beleieving in PANDAS being a seperate disorder then tourettes and ocd and aspergers. I have already went to Florida for a PANDAS Dr. and probably will be going to Dr. latimer in MD this summer with my son. Yes we use Omnicef /cefdinir. My son has been on it for two years. We started with pen vk and the augmentin but only omnicef stopped the compulsion urination and rituals you are describing. However sorry to tell you my son is having alot of bowel issues right now which I don't know what is causing it the antibiotic 300 mg a day, the other psych meds abilify and celexa or the PANDAS. He messes his pants daily and grabs at his bottom alot. My son's been pretty stable on the Omnicef. He has never had a major exacerbation while using it but some minor ones with the short fuse, and obsessive thoughts and tics verbal and motor tics. I have not gotten the Azith many post as being so wonderful because Dr's in OH don't want to use it. I have considered buying it from Canada though. Please post what you make out at the new Dr's. We have seen many and had good luck with few. Right now my guy is stable on the celexa and abilify and much less agitated then before and less obsessive. His symptoms have been going on for six years which seems like a lifetime and is since he is only seven. Each episode seems to last about eight weeks and he is less back to baseline with reoccuring episodes. The sooner you get the treatment the better results you should see. We went for many years with nothing not even antibiotics unless he was positive for strep or ear infections. Glad to hear your story, Michele -
So sorry for what you are going through. A poster on another board Dee has a son with PANDAS that went into seizures. Now he is on seizure meds. She is on facebook PANDAS and aspergers group. She is very helpful. Michele
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He won't eat applesauce or bananas or yogurt. I will try rice and toast. Could he be getting IBS? I am wondeing if it can be a side effect of the antibiotics? Aren't others seeing this on longterm antibiotics? I feel so bad for him. And he is irritated so he rubs against things like the floor. Yesterday I found poop stains on his carpet, of course he soils his underwear and shorts daily. I will try to watch his diet better. I will try to get him to eat les sugars and fats. He is so skinny. 7 and 47lbs. He does eat alot more now. Maybe the runs are from the drug combo of the celexa, abilify and omnicef. I don't want him to get IBS disease from these meds I am giving and the Dr's are no help. I feel just awful if I am doing this to him. My naturopath said to try goats milk yogurt instead of cow's milk. Have you tried to keep his diet really simple? Maybe just switch to rice pastas, rice milk, and keep him off of veggies and fruit b/c they really can help feed the 'runs'. I have IBS so I know that when my GI system is going to be stressed that I have to eat small bites throughout the day and I beef up my defenses with applesauce, bananas, kefir smoothies(which I drink just a little bit a day b/c it has sugar), etc. I stay away from ALL sugar. Actually, I've lost 8 pounds since starting the antibiotics b/c of diet changes and b/c they suppress my appetite, too! B
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My son has been on Omnicef and antibiotics for awhile. For the past several months he is having bowel issues. He can't make it to the toilet on time and makes such a mess in his pants. He is 7. His bottom is always bothering him and he picks at it through his pants. No Dr. has been able to help us about it they tried worm meds twice. I am using Kefir, and probiotics daily. Do you think it could be related to the antibiotics? What else can we do? He is also on Celexa since May and Abilify since last jan 2008. I don't think it would be the meds bothering him since he started this butt picking before the Celexa and was on the abilify before also. I am getting very frustrated at a seven year old messing themselves everyday and walking around grabbing in their bottom. Help! Michele
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Hi Jack. Welcome. My son has the symptoms you list and his is chronic PANDAS. Most significant is my son gets mouth sores that can get pretty big! Kim has posted on this before here. Try the search under mouth sores. Our dentist has been able to apply a paste on his sores that really helps the pain and heals them much faster. We are currently on meds for the symptoms you described. The Abilify for the tics and moods and the Celexa for the anxiety and perceverence. My son did terrible on the ADHD meds and did not tolerate them and got worse. We never tried Ritalin though and Dr. Murphy Florida specialist in PANDAS suggests Ritalin for PANDAS, ADHD. We did try Celexa, Strattera and Adderall XR. Maybe the Ritalin could have worked and we should have done it before switching to Strattera. Currently my son is stable with a few obsessive things going on, minor tics and minor mood issues. We keep having to up meds every couple months though. Mouth biting is a compulsion, ulcers come from a deficiency in the gut. Try the Kefir. Dr's say tics are not a side effect fom the meds but like you I have to wonder because some of ours got so much more defined on the meds. The vocal squeals especially and this horrible bottom grabbing (through his shorts) compulsions that is making his bottom really hurt! Makes me wonder if it is a side effect also because it started on the Strattera but stuck around now for many months after it! My son's emotional meltdowns were much worse before as you describe over homework or giving them directions. I don't know if they are lessened because of the upped Abilify or the episode has calmed down. Jut try to keep daily notes to look at as a timeline. Some episodes comefrom exposure to strep, or other virals or stress in my son's case.He doesn't test poritive that often but it is what started the whole process by getting srep and fevers and immunizations. Good luck getting the Azith. We use Omnicef and he has never gotten strep on it but does still have episodes. In our case getting treatment has been a challenge. Dr's want to go the meds route to treat the symptoms and psych Dr's. Keep us updated on your process. Antibiotics are not always easy to get either. You've come to the right place. We have tried the supplements and all I can say is go slowly so you can see what is working, add one at a time. They get confusing when you add a bunch on. Good luck! Michele
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Frustrated after meeting "specialist"
michele replied to Kayanne's topic in PANS / PANDAS (Lyme included)
It is not unusual to get turned away from Dr.'s on this diagnosis. I was dismissed on Fri. from a ped neuro who was suggested from TSA for specializing in OCD and Aspergers, but she doesn't believe in PANDAS. She told me to stick with the psychiatrist. I have seen probably 15 specialist and most of them didn't want to do a thing. The latest trend seems to be sending these cases to psychiatrist. I am taking him to two right now. However beware they will precribe meds for the moods and symptoms. Then they suggest CBT with a psychologist. The neurologist can help with tic meds but when things get complicated will pass you on to a psychiatrist. In all the Dr's I taken him to, only two would give the antibiotics and none the Azith lots of people here are using. The neuro on Fri was really against the antibiotics and the harm they could do. She had a full report from an immunologist we had seen at her hospital. She said he took a long time to research my son's case and had passed and he was one of the best on immune research. Baloney! He went to Case to study fulltime and he wrote me the script for antibiotics too. I probably could have gotten Azith from him. Just document everything as you did here. It will most likely take more then one episode to get Dr's attention. My son has been having this for six years. Dr's are not on the same page. There are a few that believe in IVIG and plasma therapy and steroid bursts. Dr. K is a good consult at web pediatrics, Dr, Leckman at Yale, Dr. Latimer in Maryland. I pray you won't need them. Your child's symptoms will probably last a few months until the antibodies go down. Each epsiode typically is 4-8 weeks for us. Maybe you'll be a one time episode. I have known some that have gotten better. As we have gone along with this illness things have progressed and gotten worse and more Aspergers/Tourettes like. Now they are daily behaviors. Our Dr's wanted to wait and see since my son was so young when he got this. Dr. Leckman is doing research with Dr. K right now so maybe we will have more answers for Dr's on what works soon. Right now Dr's are desputing if it is a real diagnosis and many are not willing to put out their necks to help and few want to do what is not suggested by NIMH. Keep us posted. Stick with this board because it will keep you up to date on what is out there. By the way my son is 7 and the stress of school really made his symptoms worse in kindergarten coupled with strep exposures. Stress makes things wosen for these kiddos. Also, many of these PANDAS kids have a gentic history of anxiety disorders in their families. Michele -
Yes we have had this off and on when symptoms are exagerated. He runs in and out of the bathroom feeling he needs to go but little comes out . I think this is a compulsion when symptoms are flaring. Right now he is having the trouble making it to the bathroom to make his bowel movements. He makes a mess in his pants. It is like he misses the urge and waits too long. Then he grabs at his bottom over and over through his pants. He has things really irritated. We are currently on Celexa and it should help with the anxiety but the bowel trouble has not improved. He has beenhaving the urge to grab his backside for four months. I have tried every treatment but seen no improvement yet.
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Congratulations. What a blessing. Enjoy your new little one! Michele
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new book on PANDAS journey due out fall 2009
michele replied to michele's topic in PANS / PANDAS (Lyme included)
Yesterday we saw yet another Neurologist who frowned on the use of antibiotics. Said she recently attended a conference on the superbug and how kids on prophylaxis can get really sick. Of course she seemed against the PANDAS disgnosis altogether. Said our rheum who passed on my son's case was a leading researcher in immunology and he didn't think there was enough to prove it existed. I get so mad. Why don't any Dr's in NE OH get this or believe it exists? Is it because of the Harvey study? They all believe in treating the sympoms with psychiatrists and psychologists. I keep hearing the same thing and I have went to 3 hospitals. Cleve Clinic, University Hospitals and Akron Childrens. Maybe Ohio State would know more. She believed the research is moving to the OCD and autism and tourettes and away from the PANDAS. I told her wait till 2011 Leckman will prove the relationship with PANDAS and the brain barrier. She said his focus will be on OCd and the tourettes. Another closed minded Dr. Doesn't want to help us I guess. Dr. Latimer said we could come to her. -
new book on PANDAS journey due out fall 2009
michele posted a topic in PANS / PANDAS (Lyme included)
Anyone here heard about this new book Saxing Sammy out this fall 2009 that discusses the recovery from PANDAS with the help of a Dr. Daniell Geller and Catherine D Nicolaides, MD Pediatrician Developmental Pediatrics 975 Tuckerton Rd Marlton, NJ 08053 (856) 983-6675 I am so excited to read this. Does anyone here know this woman named Beth Maloney? I heard of this from a few posts she made on serendips exchange http://serendip.brynmawr.edu/exchange/node/1769. I wonder if she has ever posted here and how we could talk to her? I bet we have to wait for the book to come out. I am really excited! http://www.savingsammy.net/index.html Check out her site. -
Wow things worked out so well for you. That is awesome you have a Dr. on board locally too. Did your local Dr. do the steroid burst first? I wish things could fall into place for us like this. I have talked to Dr. K and Dr. Leckman and Dr. Latimer but our Dr's here have never made an attempt to talk to them. I printed off emails and articles and gave them to all our Dr's here. I wanted our ped to do the steroid burst but she said she'd read everything over and let me know. A couple questions, were you on Azith before and after the IVIG? I wish I could get Azith to try it first. Did you have to go off any meds before the procedure ? Dr's here in OH are still not undersatnding or truly believeing PANDAS because of the contraversy in medical journals. I think that is why I can't get much help. My ped said the dev neuro spoke about it recently at a meeting and said it is still not understood. Thanks for explaining your process.
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I had an interesting call today from a mom of a Pandas child who first had Guillain Barre at age 6. It was treated with IVIG. Then a few months later he comes down with PANDAS where symptoms came on overnight dramaticly after strep. So she is not believing that IVIG can cure the PANDAS because why would her son have gotten it after the IVIG? Just thought I'd bring it up. Also her second child age 5 is now being diagnosed with Pandas and he has always been a bit different and needed early intervention. There has to be a hereditary linK to this stuff. I just wish we knew which was the best way to go plasma, steroids, or IVIG?
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Glad to hear you are seeing such progress. Keep us updated as time goes. It seems like things are really improving. Where do you live? Did you travel to Dr. K once for the procedure or did he see you prior to the procedure? How often will he stay in touch with you now or when do you plan to see him again? I was just wondering how this works if you live at a distance? Michele
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Buster, thanks for your great post as always. You break it down for us average medical readers. Interstingly, my son also struggles Math and spelling and writing/handwriting. Do you think my son's symptoms would be less controled on Omnicef? He is about your daughters size 50lb so how much Azith would he need and how often? I also want to get him treatment this summer. However I am torn because a Dr. and parent of a daughter with PANDAS for 11 years feels the best treatment that worked for her daughter was a pulse corticosteroid treatment given over several days at high amounts. She had IVIG and a predisone treatment longterm and neither of them helped as much. Have you researched the pusle corticosteroids? Here is hr history she is now 22. This is from her mom who is a Dr.: To make a very long story short, she developed PANDAS, both, ocd and tics following a strep infection at the age of 10. She also developed a post strep arthritis and now has mitral valve prolapse, so I wonder sometimes if it was PANDAS or Sydenham's, but regardless, she was completely debilitated. We finally found help at New York Hospital. Dr. Rosario Trifiletti a peds neurologist gave her the first treatment which was a five week course of methylprednisolone. Steroids long term, cause big health problems, but short term sort of stun the immune system into compliance. This helped, but did not bring her to where she is today. During that period, she developed the arthritis and we were sent to a peds rheumatologist who did the IVIG. This is collected blood from around the world that has been cleaned. It helped,but I wouldn't recommend it as I don't trust it's safety and I don't think NIMH does it anymore either. Again not satisfied, we sort a third pediatric rheumatologist who got it right. She treated her with 30mg/kg of methylprednisolone for three days straight. This is huge dose of 900mg each day. Gradually across the next four months, she improved and we found we could wean her from the Luvox. She stays on 500mg of zithro twice weekly and has not had a break through strep infection in 9 years. I think zithro and prayer are what worked here. I hold all vaccinations as my own feelings are they stimulate the immune system and will cause problems. She used to take vitamin E,C,CoQ 10 and a probiotic along with a multivit. Now she just takes a multi-vit and probiotic with zithro. She is well, but not cured. Her symptoms do flare right around menses,but she is doing very well. Sadly she did have a flareup of tics and OCD this winter with a sinus infection and had sinus surgery. This time she responded to Levaquin. Here is her mom's suggestion: I would if I were you opt for the pulse corticosteroids, it's clean (IVIG has risks)and the results come fairly quickly whereas IVIG caused a massive exacerbation of symptions and the results were not as good. We use zithro as it is a broad spectrum antibiotic and works the best. What do you think? Would any Dr's treat with the high dose pulse corticosteroids? Please let us know what research is telling you because I am following your lead. Michele
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I saw Pat mentioned the NIDS protocal today and wanted to bring this up again since nobody replied on it last time. This approach is being used for kids like ours with immune issues and PANDAS and PITANDS. It is about fixing the gut issuues and healing the blood flow to the brain. Has anyone tried this protocal? Someone I know who is using it for a child with Autism said they are showing signs of improvement. I think it was M. Carol that told me about this awhile ago. It has groups that follow it on Yahoo.
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Please help ~ kindergarten aide or no aide?
michele replied to momof4boys's topic in Tourette Syndrome and Tics
Ditto on this since our school also pushed everything out and waited till the last minute and wanted to do the bare minimum. Finally I contacted the new special ed director and he got TS more then anyone else I had dealt with on the IEP process. He made sure they gave him additional support. Remember other 5 and 6 year old will have trouble sitting still also. My son had trouble on the carpetting. That is when we decided to medicate in Jan. after the teacher did the ADHD scales on him. Also they learn to let out verbal tics at home or on the playground and gym. My son never did them in the class that I am aware of. They tell me he is perfect there. However at home he is acting out more because of the stress of holding it together there. We had some bad evenings and mornings. We use meds for the tics and behaviors and have had to up it during the school year. That has been hard doing all the med updates and Dr's appointments during school. That is why an understanding teacher means so much. I find it interesting if my son is as perfect as the teacher claims why he never got student of the month. I have a feeling she is trying to overlook things with him. She didn't get real close with me and refuses to admit to his TS at school. I guess they thought I was a bit overprotective with him. You can always have your own ed advocate sit in and observe them in the classroom setting. A 1:1 aide would make your son stand out more. He may just need a tutor as we have. They can come in and out of the classroom and your child can leave some and go out to work with them to review. My son is to see her up to four times a week for up to forty-five minutes a day. Again I think they aren't always incompliance there because if she has meetings or has to substitute for a teacher he doesn't get her that day. Try to get them to put the accomodations into writing. Good luck. I stressed all summer over it and then the beginning of the year was hard too. I good teacher helps and try to meet her ahead of time. I waited in kindergarten because I wanted to see if he needed help (and he did realitively early and then it took all year to get the help) but your school already knows your situation. You are ahead of the game already! -
Before we went on prophylaxis antibiotics he had the urinary issues where he ran in and out of the bathroom constantly thinking he had he urge to urinate but only a drip ever came out. That was when his symptoms were really waxing. I thought it was from the compulsions. We were on the Strattera for the ADHD symptoms. It just seemed to give him tummy issues and diareah so we stopped it. I bought him wipes and use vaseline on it. He has gotten it on everything even the floor resisters in his room, bedding, carpeting and driveway and walls. I don't know why he was wiping it there? Maybe because it itches? I really feel we need to see an expert in PANDAS again. I just don't think I will find them in OH and those in other states won't prescribe anything will they? His temper issues are better and his school work since the Celexa, but now this. Poor kid. I think once school is out I will see about the steroid and IVIG. Dr. K gave the email request but I have to get a Dr. to administer it. I should probably seek out a rheum or IDD again. I have a new neuro next month but I don't know how she feels about PANDAS. It is too mny Dr's and putting him through too many appointments. Is there a way to measure or see the brain inflammation? I have not had tiers run in ages. I wonder if I should get the steroid treatment now and see if it helps? I am so scared the symptoms will get worse as Chemar's husbands did. How else can you treat the brain inflammation? Cquote name='mom md' date='May 12 2009, 10:43 PM' post='32900'] My son has that issues and it is from inflammation of the basal ganglia. He has had that issue since he got PANDAS. Soem kids get urinary issues but because it is from brain swelling you get a mixed bag of tricks. When the Basal ganglia is inflammed the messages to the brain can not be filtered. All messages are equally compeating. He does not get the message and doesn't have to go until the bowle movement is right there. The treatment for this whole thing is to treat the swelling in the basal ganglia. Drugs like Strattera treat symptoms not the cause. I am starting to believe that IVIG may be the only true treatment. Claire
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We did two rounds of worm pills. He has been digging in his bottom since Feb. I at first thought it was hygene from poor wiping. Then thought it was connected to meds since Strattera can bother their tummies and then we stopped it, then I thought of yeast. Yesterday we started the Kefir, and Primodophilus again. Also I thought it could be a tic making him pick his bottom. I feel so bad because it has gotten this bad. I will call the ped tomorrow and see what she suggests. These Dr's don't seem to get any of these symptoms though! Hi Michelle, Sorry to hear your ds is dealing with this. My dd did have this strange phenomenon at the height of her most recent exacerbation. It lasted right along with all the rest of the symptoms for about 5 months and vanished the day after IVIg. I don't know what else to tell you about this. My child does take a supplement "Mastic" and that seems to kept her gut problems under control?? I don't know. She doesn't seem to need a probiotic much at all anymore despite Augmentin 250mg daily. It (Mastic) was recommended by a lyme disease specialist that she saw once who is also knowledgeable on PANDAS. I did read that it was not tested for use past 30 days but we were given a 90 day supply and have had no problems. At this point I'm deathly afraid to change anything in our regimen. Also have you checked for parasites? Just a thought. We had checked but there were none. We got special 'wet' wipes for the bathroom. It seemed to happen for my dd even when she would sneeze she would be incontinent of stool. And she was completely paranoid of other people being able to 'smell her butt' and always in the bathroom to try to clean herself up but would inevitably make more of a mess. Good luck to you. It is simply amazing how many parts of their precious little lives that PANDAS infiltrates. It's sickening. Keep us posted. Regards, amy s
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Please help ~ kindergarten aide or no aide?
michele replied to momof4boys's topic in Tourette Syndrome and Tics
We have just been through this in the past year. I will tell you in our school district they don't want to do too much early on. I guess our disabled kids don't stand out that much from the typical pack if you know what I mean, in the early grades. That is one reason they don't like to test them too soon with the MFE. Their scores don't differentiate enough in the lower grades because they haven't learned that much. Even in first grade I had to fight tooth and nails for the OHI, IEP. Although we had alot of professional opinions and diagnosis the school district was stubborn about it. For some reason they like to see them fail before they will give them help. We did get the weekly OT for the fine motor delays in kindergarten and first grades. You are right once a week is not much and these kids do struggle with handwriting and drawing and visual perception tasks. In the beginning other kids will have touble with keeping in the lines also and with pencil control. Now at the end of grade 1, I can pick his story and drawings off the wall line up. We also do private OT once a week. He is getting better at his pencil tasks and now through the IEP the school will accomodate him. I wish we had gotten him a scribe on standard tests in his IEP. He is going to struggle with writing tests and getting the thoughts on paper is rough, and spelling and mechanics. My son never had any behavior issues at school and they claim they don't see the TS. I figure each year we are moving towards more success with the school. It is a work in progress. I am trying to be civil because we have a long time to deal with them! I don't want to cause too many waves early on. At least you had the EI and the school was already on board for his IEP. I had to fight that which took a good year. Good luck with everything. Michele -
Are any of you having encopresis or soiling self trouble with your PANDAS kids? I don't know if it is from the ADHD or what but he, seven years old, rarely makes it to the bathroom before soiling. He makes sucha mess in the bathroom plus in his pants and he smells. As if we didn't have enough issues to deal with. Any ideas on how to solve this one? I think it started a few months ago when we started Strattera but we stopped it last month and the soiling is worse now. Before it was loose and now it is hardened. Sorry to be so graphic. Plus his bottom is so irritated and he scratches at it constantly. Michele
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Faith, I think my son is having encopresis now. He soils his underpants daily and makes such a mess and he smells. He is 7. Do you know anything about treatments? Thanks. Michele
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HAVE TO READ THIS - Rages, itching, yeast, etc.
michele replied to pmoreno's topic in PANS / PANDAS (Lyme included)
Yeh! I am so happy for you Pat! This has been a long time coming! Do you mind listing the exact brand names you are using in probiotics, kefir and omega 3's. I want to go shopping for them. I want to get the right things. Michele