Stephanie2

Bio and adopt, thank you for the post. My boys are 2 and 5 and sometimes I don't feel like we will survive these years...meaning I wonder what level of functioning they will be capable of in the end. I put so much work into making my boys well and I just want to know that it will all pay off and they do have a chance for a bright future. My boys' pandas is relatively under control right now, but I still wonder what the impact of the dysfunctional early years will have on them. But when you said that your kids don't remember and now they laugh at your stories, that makes me so happy to hear!!! Thanks for sharing! Stephanie My PANDAS kids are now almost 20 and 15. They are both doing so much better than when they were younger. When I tell them stories about how difficult things were they don't even remember. They don't remember how I reacted to them when I thought they were just being a pain in the A**. They just laugh now when I tell them how frustrated and angry I got with them. They used to tell my all the time "you dont understand, I just have too". I could see in their eyes the terror. Ten years ago I knew that they had PANDAS, but could not get any medical professionals to believe me. So we just treated them as difficult kids with OCD and tics. If I had only had the info i know now. My kids survived. My oldest daughter was the most difficult and now she is a sweet(most of the time) functioning adult. She loves her mommy even though i didn't always do a great job with her behaviors. All of the my bad times were balanced with good mommy time. No parent is perfect, we all make mistakes, kids learn that the world is not perfect and neither are people. As our kids get older the bad times begin to blur and good times shine. When my youngest was five I remember saying I absolutely do not want any more kids(because two of them were so difficult(PANDAS). Now ten years later I have a four and two year old. So yes I must have forgotten how hard times were. Somedays the little kids remind me how hard it can be. Hopefully one day I will forget again so that my grandkids can remind me and then I will send them home to their parents, so my kids will know how difficult parenting can be. It is a cycle and I pray the next generation will not have to deal with PANDAS. This site is a step into making sure this terrible disease is understood and taken care of early. Thanks to everyone for all they do. From Not Such a Bad Parent After All

Yes, I have had zith make things worse, but before I get to that I just wanted to mention that I have heard that here in S. Florida I heard that there is a zith-resistant strep going around (lovely since both of my boys are on prophylactic zith). Anyway, back in Dec. on day 2 of a Z-pak my son went insane. We later found out that the zith exacerbated a klebsiella infection that he had going in his gut (due to ....too many abx!). So C. diff is not the only thing these kids can get. In fact, both of my boys had c.diff at one point and the behavioral side-effects were NOTHING compared to klebsiella. My son was the worst I had ever seen him with kleb!! VIOLENT aggression, his body went wild and when we tried to stop him he would try to overturn furniture, throw everything inthe room he could get his hands on, and attack anyone within reach. For absolutely NO REASON! We would ask him why he was so angry and he would say, I don't know! Then we would have to hold him down for 30 minutes to make him stop attacking everything. Worst thing I have ever been through in my life!! Had my husband and I, his grandparents, etc. weeping... Anyway, it doesnt' sound like your son is that bad off, but he could have some kind of bacteria going on, or even yeast. Is he taking diflucan? How is the probiotic situation? Stephanie

Well, if it makes you feel any better, my son told me that he wanted his friend's mom to be his mom b/c she is nicer. And the sad thing is that I couldn't argue with him b/c I have been so uptight lately with my husband being out of town and from being exhausted. It makes me sad to think that I give my life to these kids and that is the thanks that I get. But they will eventually understand everything. Listen, my parents were quite dysfunctional when I was growing up and I still talk to them! I even have a descent relationship with my mom. All is not lost. I have had to apologize to my son countless times. We are only human... BTW, are you absolutely certain that he does not have a bacterial infection from all the antibiotics? Like I said in another thread, both of my sons developed klebsiella in the gut after a few months of antibiotics. The klebsiella made each of them quite OCD (worse than your typical pandas symptoms). I had to give them both vancomycin to kill it and within 4 days the OCD went away for both of them. Many docs don't know about this stuff and how the antibiotics are affecting the gut and worsening symptoms for some kids. It wasn't until I increased the probiotics to 400 bill that they could tolerate the zithromax without having a severe kleb infection. I know that you are concerned with the high dose antibiotics b/c of the immune response, but I did not notice a worsening of symptoms when I increased. I have heard that the "immune response" to the probiotics is temporary and after that the probiotics mostly are just taking up space to keep the yeast and bacteria out. Just food for thought. Our doctor is a DAN doctor and he really specializes in these infections... Stephanie

I increased slowly. I would increase by 25 or 50 bill every 3 or 4 days. I didn't do this at the beginning, but toward the end I started using activated charcoal to decrease the die-off symptoms. It made a HUGE difference! I was kicking myself for not doing it all along. So I would give one dose of probiotic in the morning, then 45 minutes later give 2 activated charcoal capsules (had to open and put in juice cuz my son doesnt' swallow pills). Then I would do the same thing at night. It's a pain b/c everything has to be separated (along with the antibiotics) but it made life more bearable during the increase. I use (and so does SFmom) Custom Probiotics. If your son is casein free, they have a formula called "D-lactate free". Two adult scoops is 400 bill, so I give one scoop am and one pm. Stephanie We have never tried a probiotic with strep in it, as I am literally scared to death of "anything strep" at this point! The probiotic that we use is Klaire Ther-Biotic Detox Support. It has 50+ billion CFUs & no strep. - Karen

Any probiotic strain that starts with streptococcus, or just s., as in s. thermophilis Stephanie

OK, I will check this thread tomorrow! I voted and I am updating my Facebook status daily to remind friends to vote! Stephanie

We do diflucan, as well, any time one of my boys is on a high-dose antibiotics. My 5 yo gets hyper and very silly when he has yeast, but some kids can get aggressive, too. My 2 yo also gets silly, but he also gets very bad eczema when he has yeast. I don't know about the rash you are describing, but I do believe I have seen something like that in my 2 yo as well with antibiotics. The only other thing I can think of is a gut bacterial infection from the antibiotics killing off the good bacteria and allowing the bad bacteria to grow. But with that, I don't think you get a rash. When my kids get bacteria they get aggressive. Stephanie Check with the doc that prescribed the zithro to see if you can do diflucan too. It is a systemic antifungal and really helps to keep the yeast at bay. The probiotics are also excellent, but for my son they are not quite enough and they do not go throughout his whole system. My son gets fungal sinus infections if we don't do diflucan with antibiotics.

I remember you posting about this. You may have a good point. In our case we don't have a choice though b/c when he was on low numbers of probiotics he developed a nasty bacterial infection (klebsiella) from the antibiotics. When I raised the probiotics to 400 bill he was able to tolerate the antibiotics better and his aggression went away. But I am going to ask the doctor about what you are saying b/c I am just curious what his response will be. I know he will tell me that I have no choice, but still I'm wondering if he has thought of that... Stephanie

Does your child eat yogurt? I am wondering if I need to be THAT uptight about this!! Unfortunately, I AM that uptight b/c I am afraid to give him any more yogurt!! This disease play weird tricks with our heads!!! Stephanie We have never tried a probiotic with strep in it, as I am literally scared to death of "anything strep" at this point! The probiotic that we use is Klaire Ther-Biotic Detox Support. It has 50+ billion CFUs & no strep. - Karen

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it. I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!! Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it! I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!! Any thoughts, experience?? Stephanie

Are you trying it on both boys? What dose? Good luck! PM me after a few days and let me know how it is going! Stephanie No, just the older boy for now, then we'll see. 25 mg in the Am, 25 mg in the pm. Should be about right, based on what you had to say. My wife wants to wait until the weekend. Bet she sort of regrets it, we had a terrible morning. Well, if you get the same response I got you will wish you started it right away! You just may do a little dance!! That is interesting that you are doing 25 am and 25 pm. I am starting to think that my 2 yo's spiro is wearing off at the end fo the day. He starts fixating on things and getting really fussy. Then in the morning he is an angel. Thinking about splitting it up. maybe second dose in the afternoon so he is pleasant at the end of the day... I don't notice the wearing off so much with my 5yo, but maybe a little. Still observing. Also, my 5yo is not up to max dose yet. In a week or so we go up to 50 mg. Let me know if you get any constipation our doc gave us the perfect combination of buffered Vit. C and magnesium (which also helps the tics) and both of my kids are going once a day... Stephanie

Also, maybe get a dog that does not contribute to allergies...don't know what breed that would be but I know some are less allergenic (and shed less) than others. Stephanie

Our doctor said that he caught his second son early at the age of 5. He started an antibiotic and a steroid at the first sign of pandas. He said that is what kept his son from progressing to the point of not needing IVIG, etc. I know you may have to fight for this, but be really proactive and you may be able to keep his pandas to a minimum... BTW, I know what it is like when they are both exacerbating at the same time. Pure h###! I panic and become completely paralyzed when they do that!! I am so sorry! Stephanie

I sympathize with you on the poop. My 5 yo used to withhold as well. He did not potty train until he was 4 yrs. and 10 months old!! I was so happy that he was out of pull-ups by the age of 5! He had severe constipation, at times I had to give him fleet enemas...ugh! Then I had my 2 yo and at 4 months old he started with constipation, then diarrhea, then constipation, and so on. Still trying to get him regulated! When our DAN doc first prescribed spiro I did not give it to my kids for that reason, too. It took my 5 months to fill the rx! Anyway, yes you need to find out what is going on, but one thing that just entered my mind is that maybe if the spiro helps with her pandas/anxiety, she may stop withholding...? You never know! Let me know the results when you find out. Oh, my chiari son (2 yo) does not have the sensory seeking issue. His is more of a low muscle tone. Also, he used to be very sensitive to bright light which is common for chiari pts. My 5 yo is a big sensory seeker. Gets him in trouble at school b/c he can't keep his hands to himself...Drives me nuts! Stephanie

Are you trying it on both boys? What dose? Good luck! PM me after a few days and let me know how it is going! Stephanie

My husband is a wonderful father and husband, but he is not into the research like I am. I don't know why, I guess b/c we, as moms, are wired to differently. It used to annoy me, but I guess I have come to realize that it is this way in most households where the kids are sick. I have to tell you that even though I get so tired of it falling on my shoulders, I am glad it is me and not him b/c I am the one with the tenacity and the science background. We wouldn't even know that our kids have PANDAS if it were up to him. They would be zoned out on some serious meds and even still they would probably end up living out their days in psych wards (OK, maybe not, but MAYBE they would!!). My friend's son has autism and it is the same with her and her husband. These kids are part of us, the moms. When they are not well, we are not well. Plain and simple. My husband has come to recognize and understand that my happiness is tied to the wellbeing of my boys. Anyway, if it helps, my husband has been much more supportive as time has gone on and he has come to accept this diagnosis (as something that is real and not something I pulled off the internet and diagnosed my kids with). He has seen the ups and downs, the tics, the OCD, the good days and the bad. Also, as we came to the point of needing IVIG, I ended up emailing him a bunch of links and I told him to read them ASAP so he could help me make an informed decision. Stephanie

Diana, are you saying that Swedo told you she was not aware that our kids react to viruses/bacteria THIS YEAR? In 2010? I thought that was common knowledge among treating physicians. This just goes to show you that the MD's/researchers/parents really need to have a venue to talk, exchange ideas, etc. Seems like the researchers are just too far removed from the parents. She should at LEAST be talking to the MD's on the front-lines! Stephanie

Well, with my 5 yo I perceive it to be pure baby talk b/c he changes his sentence structure to 1 and 2 word sentences as if he were just learning to talk. Then he has a meltdown if I don't understand what he is saying With my 2 yo, he is speech delayed and the ST says that maybe he has apraxia. She can't quite figure out why speech comes and goes. She has also wondered if his Chiari Malformation (brain disorder) could be hindering speech from time to time. But the more and more I read this forum, it seems that pandas does cause speech delay. So, I guess it affects speech in multiple ways ?? Glad to hear you are in a better place! Stephanie

OMG, it is "surrounded by morons week" in your world!! If you don't mind me asking, where on earth do you live???!! Is it a rotten school district? Underfunded? Stephanie Ok, speaking of common sense, how does this one grab you?? The "school" tutor came this afternoon. She has a bit of an "anal" streak to her right out of the shoot, but I take a deep breath and give it a chance. She talks about herself in the second person, "Oops, Mrs. Jones dropped her pencil" or "Mrs. Jones needs to take a drink of her water..." They two of them sit at this white pottery barn table in a room off the kitchen. I putz around, occasionally eavesdrop and otherwise leave them to work quietly. Well after the session today I walk in with my usual "how are things going" and see the white table is COVERED in pencil drawings, grafetti, scribbles. I say "what happened here???!" She answers, "dd would not stop when I told her to and she did it for 15 minutes. I almost called for you." I said why didn't you just take her pencil away and tell her the session is over?! She knows not to do this and we cannot have her think this is OK under any circumstances! She replies, "Without a behavior plan I can't do anything." I said, "Do you have a common sense plan?" She had no reply other than "I'm sorry I can not do more." thud, thud, thud.....there goes my head on the wall again.

Actually, back when I was making our initial appt, Scott Smith, the PA in the group, did not have a long wait (less than a month I believe). I took the appt with him and I couldn't be happier. He has two boys with ASD and also PANDAS. He is SO good at what he does and very accessible. From the autism message boards, I get the feeling that many ppl actually prefer Scott b/c he is so personable... If you talk to him, tell him I sent you :-) He reads this forum... Stephanie Let me know if you are ever interested in trying a DAN doctor. We use Bradstreet's office in Melbourne and they have been fantastic in helping us to control pandas. they also work very well with the issues of yeast and bacteria of the gut which can become a problem with many autistic kids when the child is on long term antibiotic use. The mainstream medicine docs are not aware of these issues and can really dig the child into a hole sometimes. My 5 yo developed yeast and a klebsiella (bacteria) infection after several months of zithromax for pandas. The klebsiella really did us in - violent rages in a child who was previously not aggressive. Worse than any pandas symptoms we have ever seen (had to pull him from school for 3 months while we got on top of the bacteria)! If it had not been for our DAN doctor, I think we would have just increased the antibiotics thinking that his pandas was flaring and we would have been in a world of pain!! Either way, Dr. Murphy is great and I'm so glad that you are staying on top of pandas for your kids. they will greatly benefit from your diligence! Stephanie Oh yes, I've heard of Bradstreet. Only good things. I even called once, but never made an appointment. Is there still an incredibly long wait to see him?

Wow, coco. I don't know what to say! My oldest is going into kindergarten in the fall so I have no experience, but after reading your post I am pretty scared!!! :-0 Best of luck! Stephanie

We had my in-law's dog tested (b/c my children are small and get licked in the face, etc.) and she came back positive for....drum roll please......group A strep! The vet thought we were crazy but we needed to know! So now my kids are not aloud in the same room as the dog when they go over (we are not as strict with this with our 5 yo b/c we just tell him not to touch the dog). Our doc tells me to keep the kids away from dogs. We do our best. Everywhere we go someone has a dog. You can only do so much. You could actually treat the dog with penicillin if it ever becomes an issue. Stephanie Stephanie

Yes, our DAN doc found strep in my 2 yo's STOOL ANALYSIS (he was only about 15 months at the time)! And that was the same week that we first noticed his tics/pandas symptoms! Stephanie

Let me know if you are ever interested in trying a DAN doctor. We use Bradstreet's office in Melbourne and they have been fantastic in helping us to control pandas. they also work very well with the issues of yeast and bacteria of the gut which can become a problem with many autistic kids when the child is on long term antibiotic use. The mainstream medicine docs are not aware of these issues and can really dig the child into a hole sometimes. My 5 yo developed yeast and a klebsiella (bacteria) infection after several months of zithromax for pandas. The klebsiella really did us in - violent rages in a child who was previously not aggressive. Worse than any pandas symptoms we have ever seen (had to pull him from school for 3 months while we got on top of the bacteria)! If it had not been for our DAN doctor, I think we would have just increased the antibiotics thinking that his pandas was flaring and we would have been in a world of pain!! Either way, Dr. Murphy is great and I'm so glad that you are staying on top of pandas for your kids. they will greatly benefit from your diligence! Stephanie

Why did he want you to get the MRI done again? Let us know how it goes. Don't forget that my 2 yo has Chiari, just in case that comes up. His Chiari symptoms are in remission right now, so I am blessed with that. No sign of the need for surgery any time soon. Praying that he will completely grow out of it in time. I have never had my 5 yo get an MRI and sometimes I want to b/c he has such sensory issues that Chiari can cause. But then I think, what would I do? I would not go out and have surgery done just to get rid of some mild/moderate sensory issues (well, maybe I would :-) ). By the way, when you talk to him again about spiro, if you get a chance ask him what he thinks about LDN (low dose naltrexone). I know some DANs prefer that over spiro and I don't know why. Would love to hear what he has to say about it. Best of luck! Stephanie