3boysmom

Put your name on the wait list for a PANDAS doctor, because if your neuro is not truly understanding or non believing in PANDAS then you will have waisted precious time to then be starting over to look for help. Trust me, most of us have gone that route and then they will send you to a psychologist and push for SSRI's! Save you're money and time. Call the office of the neuro and ask if they treat PANDAS or PANS. This is a complicated illness. Maybe get a phone consult with Dr. T. Did your child happen to recently get any vaccinations?

From Dr. T. http://www.ncbi.nlm.nih.gov/pubmed/18608177 "So the combination of Coxsackie and strep may be particularly bad . I have to thank Madeline Cunningham for pointing out the Coxsackie-Strep connection High dose Valtrex does seem to help Coxsackie. It is not an "official treatment" (you will read there is no treatment for Coxsackie in mainstream textbooks) but many report it does work. It may do so by inducing interferon. Dr. T"

Ok, since you are new, I don't want to throw too much at you at once. The NIMH changed the name PANDAS to PANS and mainly because these symptoms and problems come from other illness besides strep. One illness that a lot of us battle and seems to create tics is Coxsackie Virus which is Hand, Foot, and Mouth. If he had strep and coxsackies at the same time then this can create problems. Even if he had Coxsackie without strep, it could cause problems. Most doctors do not think that the Coxsackie virus can be treated with medicine, however many other doctors have treated our kids with Valtrex or Acyclovir with great success. Even though his strep test came back negative, strep could be hiding out else were besides his throat. Did they do a rapid swab or send in a culture? Many of our kids test negative. You should start with Strep ASO and Anti D-Nase testing as well as tests for Coxsackie Virus A & B. others will chime in with more info. Needs to be treated as soon as you can. Prayers to you and search the topic area for Coxsackie.

Biberglund: don't forget to give probiotics to help avoid yeast issues. Search the topic and read more about probiotics. 2 basic things to remember are: give a few hours apart from antibiotics and don't use a brand with any strep----in the ingredients-(long word and can't remember the spelling, but starts with strep). Also may help with the diarrhea.

Pych or neuro issues do not only come from chemical imbalances in the brain. PANDAS is an autoimmune that effects part of the brain. One of the leading PANDAS doctors is a neurologist. Inflammation of this part of the brain causes all types of problems.

Not rubella, but measles titers were off the chart. He never had the measles sickness, so the titers had to come from vaccinations. Discovered he was given the MMR at 12 months and 15 months . Dr. told me that they could do that 13 years ago. Never looked into if that was true, but definitely we had issues since that time. Dr. put him on amedidyn (spelling) for the measles titers . This was last year before the Coxsackie virus but while we were discovering MANY co-infections

Our DS13 has been on Acyclovir for 5 months now. He is also on Augmentin XR 1000. This all started after strep and we couldn't find help 3 years ago (he was just turning 10) so he became very dysfunctional before anyone would help. Drs only were willing to give SSRI's . His problems from Strep were mostly OCD and attention but no tics then. But the Prozac made him worse and then he had body movements and was diagnosed with Sydens hymes cohrea (spelling) so then he got the antibiotics. His Strep titers were almost 2000, one of the highest they've ever seen. So now I guess we have moved from PANDAS to PANS as this last flare was not from strep. He will stay on Augmentin until we have a stable handle on all of this. We have done a lot more than I am listing because it would take pages and we have 2 other sons that are on antibiotics but caught early in the game through Dr. L and Dr. B and Cunningham tests on all 3 boys. Yes, his tics from Coxsackie were loud vocal tics like animal noises and sounds but he had loud gasping noises between every word he spoke and he was worn out by the time he said a sentence, so he began to make up his own type of "signing". He had about 3 refills of Valtrex and as time passed on the medicine he kept slowly decreasing the tics. When the medicine script ended, his vocal tics were better but still bad and then started to get worse when the medicine ended. So they gave him more scripts (this time acyclovir ) and we are playing it by ear right now. Dr. said some are on it for years. I hope this helped, this is a very difficult illness to figure out, but keep digging for answers... Prayers to you, Linda

Wow amazing! I am so happy to hear that you have improved. I am sure those 3 years were pure he** for you and your family. I had a friend tell me a similar story of a collage professor that became (at age 13)mentally ill overnight and was put in an institution. A few weeks before a scheduled lobotomy he was put on antibiotics for an illness and his mental illness "issues" just "coincidently" went away and he went back home. That was probably 35 years ago.

Haven't retested Coxsackie titers. Dr. T started him on Valtrex in January and it cost us almost $400. A month, so our pediatrician switched us to acyclovir. (Virtually the same medicine as Valtrex, but affordable) When Coxsackie first hit DS, he couldn't speak 2 words together without ticing so he began to use sign language. Now months later, he is about 85-90% tic improved (not tic free but manageable). Can't say it happened overnight but it is definately what did the trick for us this time. Best of luck! Linda

We are also going to retest for yeast this week.

Have you checked for yeast? Our son had toxic levels of Candida Glabrada. Our 3rd major flare came with terrible tics, couldn't put 2 words together - cause was Coxsackie. Our 1st flare however had the body movements after the sudden dysfunction (before we knew about PANDAS). And this led to sydenhyms cohrea. The Valtrex and now acyclovir is slowly improving the tics. I DO know about the "long bathroom" issues-so sad. I hate that one. And the new one for our DS13 is hard for me to know how to advise. He asks "how do I know if I am bisexual or it's OCD?" With all the different OCD he's had over these last 3 years, how do you discriminate and councel?

Totally can relate! I even sometimes find it difficult to join in conversations with other moms as they discuss what they view to be difficult decisions..."football vs basketball" " ballet or tap"....really? These are your big decision making crises for your child? Our decisions are " IVIG or PEX?". I sometimes want to say "why us?" but why not us? I see families with very sick kids with uncurable illnesses and I become grateful for an illness that still offers HOPE. The difficult part of this illness was losing the son I knew so quickly overnight with no warning and nowhere to turn, no one to understand, no doctor willing to help and watching him suffer with no way to revieve his torment. Then when he is finally improving.... holding our breaths wondering when he will be gone again and having my heart ripped out again. Faith, hope and love..... we have a deeper understanding and this gets us through the tough times. Prayers to you, Linda

True...... Linda

Possibly get a strep culture and check ASO and Anti DNase titers. Those tests are not that expensive. Also, has she happen to have recent vaccinations? Oh, and yes, many of us have multiple PANDAS kids. Our oldest has stuggled the longest, suffered the most and is harder to put into remission. Next 2 boys caught early and treatment began quickly and they were relitivly easy and quick to put into remission ( because we knew what was going on). I often wish our pediatrician would have known about this for our older son as ALL the signs were there, but we were sent down a very long and wrong road)

Coltonsmom- please begin a new thread for your topic because I don't want it to get missed! Your son's anti D-Nase titers of 1480 are VERY HIGH!!! Please seek a specialistbecause if you are new to this then you have not yet realized that your run of the mill doctors will more than likely NOT give PANDAS the time of day. You will more than likely have them throw SSRI drugs at your child and making more sick. The sooner correct treatment begins, the better the outcome. Post A new thread and mention where you live. Blessings, linda

Wow, what a fighter you are for your son! What an inspiration you are for me.....he is so blessed. His ART doctor saved his life, but so did you!!! Way to go mom. I love how you don't except ". No" ( from the surgeon ). and get the testing done anyway. I hope I can be that strong for my son as we fight our way through this long road to health....stay strong....for your son as well as those of us that need a role model on how to handle these though situations. Prayers to you and your son! Thank you, Linda

Our son was doing fairly well on Augmentin XR 1000 x 2 until the coxsackie virus in November. Didn't know what infection we had until February and so then he was put on Valtrex. This helped with the néw loud vocal tics that he got with the coxsackie virus. The problem was that the Valtrex was $350. a month. In the mean time I inquired about acyclovir for attention and the doctor said they were almost exactly the same thing and so he could not be on both at the same time. He did change him to Acyclovir because it is only $40. a month because it is not prescribed as much any more. The dose needs to be higher with Acyclovir. Our DS is 13 and 5.6 feet and 135 pounds....Instead of Valtrex 1000 x 2, he is now on Acyclovir 800 MG x 4 (2 in the morning = 1600 and 2 in the evening = 1600). Started the change on June 5 and I do believe he is actually doing better. His vocal tics that began in November were improved greatly with Valtrex but were still obvious and made it difficult to talk. It seems that he is struggling less to speak and I am not hearing the loud gasps for air as often. Hope that helps.

Have you tested for viruses as well? We found Coxsackie virus and added anti vitals to his augmentin. He is better but a piece to this puzzle is still missing as he is still struggling with issues. So back to the lab we go and we are going to re- run Lyme tests as well (3 years later). Best wishes! Linda

Sorry, just read your question toe! You can test for coxsackie virus through your regular doctor's ( may send you to a local lab like quest). Coxsackie is also known as: "hand, foot, and mouth disease" Linda

Also....Yeast issues as in Candia Glabrada and such.

If you get a perscription for antibiotics, then don't forget to give probiotics to protect from a yeast issue. Remember this is an immune issue and these kids have flare ups from yeast overgrowth from antibiotics. You can search the topic on probiotics to learn more (they can be purchased over the counter) Prayers for healing...Linda

We are doing k12 and it is working out great for us. What did you mean when you said " the program is "getting cut next school year"? Did you mean K-12 or the gifted program?

OMG, yes it is very significant.in my opinion. I believe it means that the throat culture may or may not be positive but strep is hiding somewhere else. Strep in different places will show different problems.

Our son struggled with straight forward PANDAS and much OCD for three years without any tics. This year he had a mild fever for 1 day and the tics began right away. This time we could not figure out what he had. Our regular PANDAS doctor did not know either. A phone consult with Dr. T; he suggested to test for coxsackie virus and that is what he had. Most illnesses with him present neurologically instead of phisically, so I had no symptoms to describe. I would test for coxsackie virus and for yeast issues along with the other sugestions. Hang in there.....we ALL know how you are feeling (unfortunately) blessings, Linda

We are in Tx. DS is 13 and in 7th. He is more mature than most 18 year olds though. He is not a gamer and doesn't have FB. I would get him onto FB if there was a PANDAS kid type support page. He is mostly into playing basketball and is interested in cars....already trying to pick out what car he will drive. He wears a size 11 shoe and has a complete mustache! I think when he got this illness, life became so serious, he can no longer relate to silly old boy stuff. Hunter starts his k12 in the morning and it takes him twice as long as the average child to do his work. So sometimes he is on the computer for 8-10 hours a day. If he doesn't make a 100, he retaked the lesson ( even if it is a 90). If you want the boys to exchange emails, PM me.... He would love to connect with a peer that can relate. Linda