PANDAS returns...

[patty]

Michelle,

 

Just read the book "The Out of Sync Child". The book is about children with sensory issues. And from what you described about your son's licking habit and tantrum. Your son may have sensory related issues that comorbid with OCD.

 

Patty

[Chemar]

where sensory issues (sensory integration dysfunction=SID) are common in kids in general and especially in those with neurological problems, the things being described ie licking, telling people what is being done or thought or felt etc, intensity in collecting things etc etc sound far more like OCD characteristics than SID, although there is anecdotal evidence that shows so much overlap in all these things in TS/PANDAS kids

 

however, we know that especially in PANDAS, there is a heightened OCD/anxiety etc reaction and certainly many people with TS find their OCD to be far more bothersome than just the tics alone

 

In addition to the CORRECT antibiotic treatment in PANDAS (and again here azithromycin/zithromax seems to -- at least anecdotally -- have been found to work best, especially as it appears to have immuno-modulating properties )

 

the OCD itself is best helped by a combination of Cognitive Behavioral Therapy (CBT, really beneficial) and supps or whatever works best to boost serotonin levels

 

many doctors recommend SSRIs (Luvox, Paxil, etc) for this, but our personal experience was that these bring more nasty side effects and minimal benefit

 

just on a personal note, before we started the supps and CBT to help my son's OCD, he exhibited many of the symptoms being discussed above.

 

ps re Sensory issues, the book Patty mentioned is excellent http://www.out-of-sync-child.com/

[trubiano]

What is a DAN? Try the coins for his licking. My son also did the bottom of the shoe and other GROSS things that were not good for him! It was really hard to stop yelling "what are you doing" when I would see him put things in his mouth. If my Ped doesn't change his PCN to zithromax I'm finding another doc who will. I have learned from this site I am the only one who is going to help my son cope and get some-what better. I'm also emailing Oprah everyday and asking her to put this PANDAS issue on air. It was only after 4 hours in the middle of the night trying to figure out what was wrong with my son that I found this forum. More parents and doctors should be able to get answers more quickly. I remember feeling completely lost and thinking I was the crazy one. It is so good to hear that this is really happening and there are some things we can do to help it. Thanks everyone!

[Chemar]

trubiano

 

a DAN doctor is one that specializes in treating autism, but many of them also deal with PANDAS, TS and many other issues too.

 

they are all either MD or DO so conventionally trained doctors who are specializing in more alternative or lesser generally used treatments

 

 

the sticky thread pinned to the top of this forum has info on finding DAN and other Integrative MDs/Dos

 

Do always ask FIRST before making appointments that they do in fact have the experience in treating these issues and not just autism.

Not ALL DAN docs do, tho many are broadening their patient base and gaining more experience in ASD and other neuro stuff too

[Dedee]

Michelle,

 

Wow, your son is really having a time. I am so sorry. It sounds like he is such a classic case of PANDAS. When I took my son to see the specialist in Florida, she described my son to a tee. She discussed his intermittent issues with frequent urination. She believes that he does this after a Strept exposure whether he actually acquires the illness or not. In the past, only once, he did the thing with his fingers. It was during a strept infection and it stopped after about three weeks. She said this was a classic PANDAS symptom, that almost all PANDAS patients will do this at some time. In regards to his repeating words and sentences, my son does this off and on also. She said it was a type of tic. He mostly does it during times of stress and I notice that his facial tics are more prominent during those times as well. Usually, as long as he is on his antibiotics he does well. However, there are still rare times when he will have a week here and there when old habits will show themselves and them slowly disappear. It's a terrible illness. I will pray for you and your son. Take care of yourself, so that you can be there for your family.

 

Dedee

[michele]

Michelle,

 

Wow, your son is really having a time. I am so sorry. It sounds like he is such a classic case of PANDAS. When I took my son to see the specialist in Florida, she described my son to a tee. She discussed his intermittent issues with frequent urination. She believes that he does this after a Strept exposure whether he actually acquires the illness or not. In the past, only once, he did the thing with his fingers. It was during a strept infection and it stopped after about three weeks. She said this was a classic PANDAS symptom, that almost all PANDAS patients will do this at some time. In regards to his repeating words and sentences, my son does this off and on also. She said it was a type of tic. He mostly does it during times of stress and I notice that his facial tics are more prominent during those times as well. Usually, as long as he is on his antibiotics he does well. However, there are still rare times when he will have a week here and there when old habits will show themselves and them slowly disappear. It's a terrible illness. I will pray for you and your son. Take care of yourself, so that you can be there for your family.

 

Dedee

 

I think I will call the specialist in Florida tomorrow. I tried to call her for a referal once but never heard back from her. Possibly I could get in to see her. It would be worth a twenty hour drive to make some progress with this. My son has been having trouble since age one wih this. I have seen many neurologists and an immunologist and several pediatricians. Nobody seems to have had worked with Pandas before. In fact at the Cleveland Clinic Dr. Erinberg who is quoted in the tourettes book chooses not to medicate at all. He has very seldom even run any labs or throat swabs for Andrew. He keeps saying to wait till he is older. Does your son yell or scream out alot? My son can be very loud. He talks excessively. Mostly about his compulsions like WEBKINZ right now. Today at a party he was too scared to swim in the pool. He kept chewing his fingers till they were bleeding. He just wanted his WEBKINZ out of the car. Ifeel sad for him.These thoughts must interfere with his having fun! Yet yesterday in a zero entry pool he did great! What was Dr. Murphy's recomendation for antibiotic therapy? What was her plan for your son? Did youhave trouble getting in with her? Has she published articles on the use of azithromiacin in treating PANDAS? His immunologist is stuck on penicillin since that is what he believes to be documented as the treatment of choice. Andrew may be under stress with school starting or has been exposed to a virus but he has been off the wall. I only wish there was someone near to me who new about this illness. When I try to explain it to people they just look at me like I am making it up. It can be exhausting. I appreciate your prayers. They need to set up a support group for parents like they do for autism.

Michele

[michele]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

 

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles?

Thanks,

Michele

I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again!

 

How interesting you used the word freaked out. I asked my son why he repeatedly bends back his fingers and he said because he is freaked out! Whatever that means to a five year old. Andrew drives us nuts with the repeating phrases too. My eleven year old will cover his mouth and beg him to stop talking. Does your son stretch his fingers or bend at the knees? I find this odd but it must give him a relaxed feeling. Andrew is very emotional too. Today he has cried alot over little things. He is complaining of a headache. I've had him on time out twice because he has been mean and refused to listen. How does your son do with the diet? Andrew craves sweets. I try to eliminate dies and colors. We try to stay away from candy. He has no allergies that we know of. My mother-in-law took him Wed. and bought him alot of candy and junk food. Took him to a movie and bought him a Webkinz. He has been off the wall for two days. My husband refuses to explain it to his family. They won't even accept the ADHD. Does giving into these obsessions just make them worse. He tries to collect all of things. He just can't stop thinking and talking about it either. It goes beyond a usual interest. He finds it hard to drive by the stores that sell them without stopping to look or getting the Happy meals to collect the toys. It is nice to share with someone else.Thanks for listening.

Michele

It seems like our children are the same! My son just started cracking his fingers on his head. I'm not sure if it is a tic or what. He will hit his hand on the side of his head and says he is "stretching his fingers". We deal with collecting too! If he gets one race car he needs every number, webkinz.com announces the new ones coming out and he must have them all, and he got a Simpson toy this week and he has begged everytime he plays with it to go back and get more from Burger King. I also have an older son who likes to interrupt when he talks. He thinks it is funny to make him start a sentence over. There has to be something more we can do. I have not limited his diet yet. We went June and July without any major symptoms. I was hoping the diagnosis was wrong and he was back to normal. As for giving in to what they want, when this first started we took him to a psychologist and she told him everytime he felt like doing something (ex: touching the hot stove) he needed to stop himself and tell us that he wanted to do it. We give him a coin and when he gets five he can have a toy of his choice for his collections. She said this would teach him to fight the OCD urges. So far it has worked. He had an issue with needing to lick things. He would come up to us 100 times a day telling us things he wanted to lick. Thank goodness that has gone! My husband thinks I baby him and that is why he is so emotional. Who has ever seen a 6 year old laying on the ground in a crying fit not being able to calm himself for 30 minutes? So, I understand about your family thinking there is nothing wrong. They are not around enough to hear him repeat something funny he has seen on tv over and over again all week long! As for the headache I would call your neurologist just incase. When my son was at his worst it was a headache and tummy ache that would not go away that made the doctors listen to me when I said something was wrong. It could be strep again. Especially with his behavior changes. My son's MRI showed some swelling, but after all the high doses of antibiotics in the beginning it is normal now.

 

Wow do our boys have similarities. Andrew licks odd things too. Like today he licked the door brass inside lock. Sometimes he licks shoe bottoms. It is so gross. The urge thing is interesting. I have never discussed it with Andrew. With the crying fits we also experience them. I describe them as age regression. He acts like a two year old toddler. Actually he was better behaved at two. I kept thinking the diagnosis was wrong too. But when you see the behaviors repeat themselves over and over with time and illness they are so extreme that you can mark a day on the calandar that they begin. My mom thinks we gave into him too often so we didn't have to hear him scream. Maybe sometimes but I put up with a lot of screming too. The Burger King thing is hilarious. My son always wants a different toy. So when they give him the same he wants to trade it back in. He doesn't get that A .they don't care if they give the same toy aand B. they really don't know what the toys are. He will have crying fits for an hour because he wants to return the toy. One time I sent him in to return it when it was the same Superman toy. He got something else. They say collect them all but he takes it literally. We are visiting a DAN Dr. Dr. Demio next week for the first time. I don't know what to expect. He definately has something going on right now.

Michele

What is a DAN? Try the coins for his licking. My son also did the bottom of the shoe and other GROSS things that were not good for him! It was really hard to stop yelling "what are you doing" when I would see him put things in his mouth. If my Ped doesn't change his PCN to zithromax I'm finding another doc who will. I have learned from this site I am the only one who is going to help my son cope and get some-what better. I'm also emailing Oprah everyday and asking her to put this PANDAS issue on air. It was only after 4 hours in the middle of the night trying to figure out what was wrong with my son that I found this forum. More parents and doctors should be able to get answers more quickly. I remember feeling completely lost and thinking I was the crazy one. It is so good to hear that this is really happening and there are some things we can do to help it. Thanks everyone!

 

Yes this is a wonderful place. I fell upon it by accident also and it has been the only saving grace in the whole thing for me. I have not found any support elsewhere. I thought Oprah did talk about it a few years ago but more on the side of anorexia. I would love for her to discuss it too along with neurological issues. The more Dr.'s I go to I begin to wonder if people will think I am obsessive and making this up. I keep hearing this well he is a boy and he is only five and maybe he is active but do you think it is really anything else? Only my mom and I seem to get it. My husband offers little support because he says little. He is so scared of thgings too. Like he won't take off his traing wheels. He is scared of the pool water, scared of bees. Cries over every cut or boo boo. Acts very babyish. What about your son? Is he able to do any team sports? Andrew doesn't seem to stick to things that are structured. We've tried swim team, basketball. He quit them both.I signed him up for soccer so we will see how it goes.

Michele

[trubiano]

The more we talk the more upset I get! Our children are all one in the same and yet our Doctors are making us feel crazy! My son has to sleep with every stuffed animal in the house, the training wheels coming off his bike scared him from even going outside, and if there is a moth or bug anywhere around he is running and crying hysterically. One strange thing he has always been afraid of is dead flowers. If there is a vase on the table and something in it has whilted he can not even go into the room until I move it. We have tried evey sport and he just could not stay focused. He has a real problem making friends because of his strange noises and lack of "personal space". It's not a tic. He just is acting out something he has seen on TV in his head and makes weird noises and will pretend his fingers are what ever character he is thinking about. He isn't vocalizing to anyone that his fingers(or a piece of string in his hands) are really Sponge Bob jumping in the water. He will just start yelling ahh!!! and make his fingers jump on someones back. Then they think he is crazy. Very imaginative, but other kids have no idea what he is doing. I am on the waiting list for the Sands Clinic, but that could be 4-6 months. I am curious for anyone who has been there already what Dr. Murphy has told them. It would be very helpful to the rest of us to know what we should be doing now until our appointment.

[michele]

The more we talk the more upset I get! Our children are all one in the same and yet our Doctors are making us feel crazy! My son has to sleep with every stuffed animal in the house, the training wheels coming off his bike scared him from even going outside, and if there is a moth or bug anywhere around he is running and crying hysterically. One strange thing he has always been afraid of is dead flowers. If there is a vase on the table and something in it has whilted he can not even go into the room until I move it. We have tried evey sport and he just could not stay focused. He has a real problem making friends because of his strange noises and lack of "personal space". It's not a tic. He just is acting out something he has seen on TV in his head and makes weird noises and will pretend his fingers are what ever character he is thinking about. He isn't vocalizing to anyone that his fingers(or a piece of string in his hands) are really Sponge Bob jumping in the water. He will just start yelling ahh!!! and make his fingers jump on someones back. Then they think he is crazy. Very imaginative, but other kids have no idea what he is doing. I am on the waiting list for the Sands Clinic, but that could be 4-6 months. I am curious for anyone who has been there already what Dr. Murphy has told them. It would be very helpful to the rest of us to know what we should be doing now until our appointment.

 

I am crying reading your reply. Finally letting it out. My son is so sweet and it is not his fault his brain is attacking itself. Andrew is very imaginative too. At four he could perform every song from High School Musical. He has Harry Potter memorized. He can type and read Wekinz World. However emotionally he is very immature. He loves his animals too. I am very worried about the brain damage too until we get the right treatment figured out. I will try to get into Shand tomorrow with Dr. Murphy. In the mean time I will see Dr. Demio who is biomedical. Until then we will stick with the antibiotics Pen V, Children's DHA by nordic naturals, (Although I read on here that Max EPA fish oils by Nordic Naturals may be better) I pray I am giving the right one. Even the people at the Vitamin shops have not a clue what I am describing with my son. I give him Primadophilus too and Nordic Berries Vitamins. He has sores in his mouth again. I wonder if it is from the berries, or the primadophilus? Tonight I was reading some old posts here from Dominique I believe. Read Dr. Vojdani's article in lattitudes. It is very good. Also testing information from his lab on PANDAS. Also a new book to read called Freeing your child from OCD by Chansky. I guess it mention PANDAS. Good luck researching. God bless.

Michele

[kim]

Tonight I was reading some old posts here from Dominique I believe

 

I thought you might want to read a few post here. Dee (Dominique) found a Dr. in Calif. who follows Dr. Amy Yasko's strep protocol. The last I heard, her son was doing very well. I always hope she will pop in and update us as to whether the improvements "stuck."

 

There is also a lot of info on this forum for the Mom who recently talk about low muscle tone (or no visable muscle in arms)?

 

http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=11920

 

http://www.ch3nutrigenomics.com/phpBB2/vie...aso+titers+test

 

http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=12524

 

http://www.ch3nutrigenomics.com/phpBB2/viewforum.php?f=19

[Dedee]

Michelle,

 

No, it was not really hard to get in. When I called, they put me on a waiting list for an appointment and told me it would be two to three months. After about 10 or 11 weeks they called back and gave me an appointment for one month away. I think they had one sooner but we couldn't get there then. I gave them all the insurance information over the phone and called my ped. and asked them to fax a referal and my sons records down. We went down the day before and spent the night, had an early morning appointment. We saw her "assistant" first who is only a psychiatric resident. Don't let them worry you. The one we saw knew little about PANDAS and kept telling us all kinds of things that was wrong about antibiotics and so forth. When she came in, she corrected him. She did suggest we leave him on amoxicillin 250mg twice daily. She preferred that to Zithromax if the child is doing well because she said that they get less resistance to the penicillins. She has seen quicker resistance to Zithromax, but said we can go to that if the amoxicilling stops working. I had a very detailed history of how well my son does on antibiotics and how his symptoms return when we stop the antibiotics. I had made a spread sheet with dates and symptoms because my doctors had insisted that we stop my sons antibiotics several times and he had gotten so much worse, so I documented it. She said that was very helpful to show a trend and kept it for his chart. My son has also been on low dose Celexa for his OCD for several years. We were simply unable to control it any other way and he was absolutely not able to function in the real world. This was a life saver for him. When he was first diagnosed with OCD at age 5 after a strep infection, he took a very low dose of Zoloft. That worked well for several years until he had another strept infection and his OCD went into overdrive and we could not get it under control with any amount of Zoloft. That was when we switched to Celexa. It only took a small dose and he was back to his old self. Then when he was 11 he had a series of strep infections that set of the tics and mood changes. It was such a nightmare. I am so blessed that people here helped me find the guidance I needed and pointed me in the right direction. The only other things the doctor suggested was a good vitamin (which he was on), and the fish oil. I do however, give him cal/mag, and occasionally epsom salt bath as I am a true believer in these supplements.

 

Michelle, my heart aches for you and your son. If he can not enjoy being a little boy, he really needs more intervention. I do not think your doctor is being aggressive enough. I can tell by your posts that you are working hard to find the answer for your child and I believe that you will. A mother must fight for her child. It may not happen over night but it will happen. I hope for your sake and for Andrews that it is soon. Please take care of yourself. Let me know how he is doing.

 

Praying for you - Dedee

[michele]

Michelle,

 

No, it was not really hard to get in. When I called, they put me on a waiting list for an appointment and told me it would be two to three months. After about 10 or 11 weeks they called back and gave me an appointment for one month away. I think they had one sooner but we couldn't get there then. I gave them all the insurance information over the phone and called my ped. and asked them to fax a referal and my sons records down. We went down the day before and spent the night, had an early morning appointment. We saw her "assistant" first who is only a psychiatric resident. Don't let them worry you. The one we saw knew little about PANDAS and kept telling us all kinds of things that was wrong about antibiotics and so forth. When she came in, she corrected him. She did suggest we leave him on amoxicillin 250mg twice daily. She preferred that to Zithromax if the child is doing well because she said that they get less resistance to the penicillins. She has seen quicker resistance to Zithromax, but said we can go to that if the amoxicilling stops working. I had a very detailed history of how well my son does on antibiotics and how his symptoms return when we stop the antibiotics. I had made a spread sheet with dates and symptoms because my doctors had insisted that we stop my sons antibiotics several times and he had gotten so much worse, so I documented it. She said that was very helpful to show a trend and kept it for his chart. My son has also been on low dose Celexa for his OCD for several years. We were simply unable to control it any other way and he was absolutely not able to function in the real world. This was a life saver for him. When he was first diagnosed with OCD at age 5 after a strep infection, he took a very low dose of Zoloft. That worked well for several years until he had another strept infection and his OCD went into overdrive and we could not get it under control with any amount of Zoloft. That was when we switched to Celexa. It only took a small dose and he was back to his old self. Then when he was 11 he had a series of strep infections that set of the tics and mood changes. It was such a nightmare. I am so blessed that people here helped me find the guidance I needed and pointed me in the right direction. The only other things the doctor suggested was a good vitamin (which he was on), and the fish oil. I do however, give him cal/mag, and occasionally epsom salt bath as I am a true believer in these supplements.

 

Michelle, my heart aches for you and your son. If he can not enjoy being a little boy, he really needs more intervention. I do not think your doctor is being aggressive enough. I can tell by your posts that you are working hard to find the answer for your child and I believe that you will. A mother must fight for her child. It may not happen over night but it will happen. I hope for your sake and for Andrews that it is soon. Please take care of yourself. Let me know how he is doing.

 

Praying for you - Dedee

 

Dedee,

 

Thank you for the reply. I did talk to Dustin who handles Dr. Murphy's schedules today. He told me once he gets Andrew's files faxed from the Dr. he will schedule his appointment. He said they are 3-4 weeks out in scheduling. She only sees PANDAS on Fri. He said once he gets the forms he will call for a phone interview. I am hopeful this will lead to some help. It seems hard to get the medical records. They all want me to mail a form. We have been to several Dr. I hope my pediatrician has some records she can send that have been sent to her. I wish I would have taken better notes of dates and symptoms myself. Then I have an appointmant with the DAN Dr. Wed. That is not covered by insurance. How helpful do you think they will be? I guess the initial appointment can be like $450. Will he believe in antibiotic prophylaxis? He is biomedical. This is very hard. I guess Dr. Demio sees PANDAS. I called the immunologist office and told them about the relapse but they said to let them know what I find out with the other Dr. Does your son still have relapses maybe when exposed to virus or strep? Should I wait till Wed for the strep test or get it sooner? I wish there was a book to follow on the treatment. Maybe someone out here on this site could write one and be the first. Thanks.

Michele

[Dedee]

Michele,

 

Yes, my son does have relapses when he is exposed to others with strept, even when he doesn't actually get it. He has not gotten strep since he had his tonsils removed last Dec. His flare ups, the doctor believes, are from exposure to others when they have it. Thank goodness since we have had the tonsils removed and subsequently started him on antibiotics, he has been very healthy. Only a few sniffles here and there. His flare ups are very mild, usually including some night time fears, causing him to want to sleep in our room. Also, I will notice a few eye blinks and head turns that most folks wouldn't even pay attention to. He may mumble some under his breath, those sorts of things. It is just enough to scare me that it is all coming back. I usually start with epsom salt baths or increase his cal/mag or something and eventually, maybe in a week or two they will slowly go away. It's never enough to really cause problems, only anxiety for me. I don't think he has issues with viruses, but maybe just haven't put it together. He is sooooo much better since the tonsils came out and we started the amoxicillin. Not sure which it is or both, but I am so glad that our life has turned around and he is smiling and making good grades and good friends again.

 

I do not know anything about DAN doctors. Many here do, and have good experiences and may give you input. I can not offer any advise on that. We did go to a ID before we went south, and the ID was absolutely no help what so ever. Now, they are all different. Ours just did a throat swab, said he was negative and brushed us and PANDAS off. She said she had heard of it and he probably did have it, but she wasn't giving out any anitbiotics to someone who didn't have a current infection. It was more frustrating than anything. Our neurologist basically said the same thing. So you can see what a relief it is to finally find a doctor that listens to you and agrees with you and even offers up information and a treatment plan for your child. Do not give up, this is a knowledge deficit issue with most physicians, and it is really hard to tell a specialist that is "top" in their field that maybe they don't know everything. Best to just move on to the real PANDAS pro's. There are a handful scattered around the country, all very good, but unless you are fortunate enough to live in the right state, you have to travel. Hope the info is helpful. Keep us updated.

 

Dedee

[michele]

Michele,

 

Yes, my son does have relapses when he is exposed to others with strept, even when he doesn't actually get it. He has not gotten strep since he had his tonsils removed last Dec. His flare ups, the doctor believes, are from exposure to others when they have it. Thank goodness since we have had the tonsils removed and subsequently started him on antibiotics, he has been very healthy. Only a few sniffles here and there. His flare ups are very mild, usually including some night time fears, causing him to want to sleep in our room. Also, I will notice a few eye blinks and head turns that most folks wouldn't even pay attention to. He may mumble some under his breath, those sorts of things. It is just enough to scare me that it is all coming back. I usually start with epsom salt baths or increase his cal/mag or something and eventually, maybe in a week or two they will slowly go away. It's never enough to really cause problems, only anxiety for me. I don't think he has issues with viruses, but maybe just haven't put it together. He is sooooo much better since the tonsils came out and we started the amoxicillin. Not sure which it is or both, but I am so glad that our life has turned around and he is smiling and making good grades and good friends again.

 

I do not know anything about DAN doctors. Many here do, and have good experiences and may give you input. I can not offer any advise on that. We did go to a ID before we went south, and the ID was absolutely no help what so ever. Now, they are all different. Ours just did a throat swab, said he was negative and brushed us and PANDAS off. She said she had heard of it and he probably did have it, but she wasn't giving out any anitbiotics to someone who didn't have a current infection. It was more frustrating than anything. Our neurologist basically said the same thing. So you can see what a relief it is to finally find a doctor that listens to you and agrees with you and even offers up information and a treatment plan for your child. Do not give up, this is a knowledge deficit issue with most physicians, and it is really hard to tell a specialist that is "top" in their field that maybe they don't know everything. Best to just move on to the real PANDAS pro's. There are a handful scattered around the country, all very good, but unless you are fortunate enough to live in the right state, you have to travel. Hope the info is helpful. Keep us updated.

 

Dedee

 

I went out tonight and got some new books from the library. I felt bad because the entire time Andrew was conversing with the librarians he was constantly pressing and bending his fingers against his face. Poor kid. This would be a good time to test his titers. My daughter had her tonsild out last year. Andrew still has his. He said he has a belly ache tonight. Do your children on antibiotics ever complain of this? He had a bit of diareah twice tonight. Might be viral or from medicines. Plus he is having canker sores again. I wonder if the Nordic Natural vitamins cause these because they are citrus? He gets sores often. I am still debating what to tell the schools. Maybe after the DAN appointment I will know more. Talk to you soon.

Michele

[Chemar]

Hi Michele

 

I do hope you are also giving ProBiotics while he is on the antibiotics....really important as the antibiotic kills both his good and bad bugs and that is when gut problems, candida yeast etc can occur

 

good to give the probiotic at least 3 hours before or after the antibiotic(otherwise the anti will just zap it too)

 

I personally like kefir and plain natural yoghurt like (stoneyfield farms) but one can also get excellent probiotic cultures in the cold section of health stores