Need Advice - Recent PANDAS Diagnosis

[jenann]

This is my first post here. I have been in the midst of my DS's (5) first PANS exacerbation myself (started Nov. 11th, 2013) and I feel a strong connection to your story. As well as others that have posted here that have had PANDAS/PANS children that were triggered by the FLUMIST. Hopefully my post/reply helps you and others to not feel so alone and help you to gleen some insight into the healing that I have I've seen so far. I also have a question, but want to give you all a little history on us first!

 

My DS 5, had the FLUMIST on 10/30/13. 3 days post mist he came down with a fever nausea, and slept a lot. At first I just thought it was viral infection. I gave him Ibuprofen, fluids and let him rest. A few days after his illness he started acting unusual. Stripping his clothes off, making growling noises and saying he felt like his skin was burning. He also was still complaining of nausea. For about a week he acted strange, very impulsive and regressing in his behavior. He started carrying his "tee tee"(baby blanket,) and mouthing everything in sight! I didn't make any connection at first with the flumist until on Nov. 12th, 2013 (his 5th b-day) the explosive exacerbation happened. He began full body tics, snorting, high pitched screaming, and having OCD "bad thoughts" and asking repetitive questions. Everything had to be his way, or he would have a complete melt down. He also had urinary frequency, aggressiveness, and could hardly get to sleep at night. He was completely off the wall in his behavior! I didn't sleep, or get out of my pajamas for 2 days. It was so very frightening to see my son become a completely different child overnight! In the middle of one of those sleepless nights, the"lightbulb" turned on, and I wondered if the flumist could have caused this? I searched the internet and made the connection here on ACN latitudes that yes, it could be an autoimmune/(inflammation in his basil ganglia) response to the mist and possibly PANDAS/PANS? I brought him to our pediatrician on Nov. 13th, explaining to her that I believed he was having a reaction to the flumist. To make a long story as short as I can, I sat there for 2 hours and still she couldn't explain to me what was happening. I was referred to a developmental pediatrician, then a psychiatrist who finally diagnosed him December 11th, 2013, with PANS, after 2 months of heartache! (In desperation, I live in MN, if I couldn't have gotten him help, I was very close to hopping on a plane to go to Chicago to see Dr. K.) My son has been on Augmentin chewables 1000 MG per day, since Dec. 11th. (400MG in the am, 200MG in afternoon, and 400MG at bedtime.) We have seen much improvement since going on the antibiotics. He is about 75% back to himself. We very much have been seeing the sawtooth pattern of healing, 2 steps forward one step back! Just when I feel he is doing better something will pop up again. He's also had two illnesses with fever and sore throat while on the antibiotics that caused "mini flares." He is on probiotics, and I am giving him Epsom salt baths. It's painfully SLOW! He has missed a lot of preschool. It feels like it will never end!

 

Question for you all- I am very nervous and scared, his Dr. wants to discontinue his antibiotics this Friday (after about 9 weeks.) She wants to stop abruptly, no tapering of his antibiotics. Is this the way the "PANDAS Specialists"do it? She doesn't believe in long term antibiotics. My Dr. had also went to a conference in the fall of 2013 and thought that this was how Dr. Murphy does it. She hasn't made any mention of steroids, or IVIG. I doubt she will go beyond giving antibiotics? The only tests run were strep titers, which were normal, so she is calling this PANS. I have not ruled out going to see Dr. K., in the near future if need be, but don't really have a choice at this point but to follow her direction. I do feel very grateful that I got the antibiotics with out a positive connection to a STEP test/or titers, but I am very worried everything will go back to where it was in the beginning! Any advice?

 

Thank you all very much for taking the time to read this and for all of the information posted on this website! It has been a source of comfort in a very weird and frightening time for me.

[jenann]

By the way -I forgot to mention that keeping a daily journal is extremely helpful to see if progress is being made. Since I have been in the midst of my DS's exacerbation, it's hard to see ANY improvement, but keeping a journal has definitely confirmed progress has been made for my DS. I highlight the positives and the negatives before Dr. appt's and bring it along for a reference. I am still on a high learning curve re: PANS/PANDAS, but I am also like you planning what to do next, or at least trying to since I've felt behind the 8 ball for the last 3 months!

[kleek3]

Just wanted to share our experience when it comes to tics. We were told that the tics don't hurt our son and he doesn't know he is doing it, so don't focus on them. As a Mother, that was and still is a challenge for me. Tics were one of our first big symptoms. I watch ds5 daily and try not to put my attention where he doesn't need to be. Its more productive for me to point out positive behaviors vs. something he can't control. Welcome to the forum mpatti.

 

All the best,

kk

[Agnes26]

This is my first post here. I have been in the midst of my DS's (5) first PANS exacerbation myself (started Nov. 11th, 2013) and I feel a strong connection to your story. As well as others that have posted here that have had PANDAS/PANS children that were triggered by the FLUMIST. Hopefully my post/reply helps you and others to not feel so alone and help you to gleen some insight into the healing that I have I've seen so far. I also have a question, but want to give you all a little history on us first!

 

My DS 5, had the FLUMIST on 10/30/13. 3 days post mist he came down with a fever nausea, and slept a lot. At first I just thought it was viral infection. I gave him Ibuprofen, fluids and let him rest. A few days after his illness he started acting unusual. Stripping his clothes off, making growling noises and saying he felt like his skin was burning. He also was still complaining of nausea. For about a week he acted strange, very impulsive and regressing in his behavior. He started carrying his "tee tee"(baby blanket,) and mouthing everything in sight! I didn't make any connection at first with the flumist until on Nov. 12th, 2013 (his 5th b-day) the explosive exacerbation happened. He began full body tics, snorting, high pitched screaming, and having OCD "bad thoughts" and asking repetitive questions. Everything had to be his way, or he would have a complete melt down. He also had urinary frequency, aggressiveness, and could hardly get to sleep at night. He was completely off the wall in his behavior! I didn't sleep, or get out of my pajamas for 2 days. It was so very frightening to see my son become a completely different child overnight! In the middle of one of those sleepless nights, the"lightbulb" turned on, and I wondered if the flumist could have caused this? I searched the internet and made the connection here on ACN latitudes that yes, it could be an autoimmune/(inflammation in his basil ganglia) response to the mist and possibly PANDAS/PANS? I brought him to our pediatrician on Nov. 13th, explaining to her that I believed he was having a reaction to the flumist. To make a long story as short as I can, I sat there for 2 hours and still she couldn't explain to me what was happening. I was referred to a developmental pediatrician, then a psychiatrist who finally diagnosed him December 11th, 2013, with PANS, after 2 months of heartache! (In desperation, I live in MN, if I couldn't have gotten him help, I was very close to hopping on a plane to go to Chicago to see Dr. K.) My son has been on Augmentin chewables 1000 MG per day, since Dec. 11th. (400MG in the am, 200MG in afternoon, and 400MG at bedtime.) We have seen much improvement since going on the antibiotics. He is about 75% back to himself. We very much have been seeing the sawtooth pattern of healing, 2 steps forward one step back! Just when I feel he is doing better something will pop up again. He's also had two illnesses with fever and sore throat while on the antibiotics that caused "mini flares." He is on probiotics, and I am giving him Epsom salt baths. It's painfully SLOW! He has missed a lot of preschool. It feels like it will never end!

 

Question for you all- I am very nervous and scared, his Dr. wants to discontinue his antibiotics this Friday (after about 9 weeks.) She wants to stop abruptly, no tapering of his antibiotics. Is this the way the "PANDAS Specialists"do it? She doesn't believe in long term antibiotics. My Dr. had also went to a conference in the fall of 2013 and thought that this was how Dr. Murphy does it. She hasn't made any mention of steroids, or IVIG. I doubt she will go beyond giving antibiotics? The only tests run were strep titers, which were normal, so she is calling this PANS. I have not ruled out going to see Dr. K., in the near future if need be, but don't really have a choice at this point but to follow her direction. I do feel very grateful that I got the antibiotics with out a positive connection to a STEP test/or titers, but I am very worried everything will go back to where it was in the beginning! Any advice?

 

Thank you all very much for taking the time to read this and for all of the information posted on this website! It has been a source of comfort in a very weird and frightening time for me.

She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers.

Edited February 12, 2014 by agnes26

[jenann]

Thanks Agnes 26! I greatly appreciate your response.

 

"She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers."

 

Given this information, I will call the office today to request that our Dr. consults with Dr. Murphy re: Augmentin, dosage length, and discontinuation. I wasn't confident the the Dr. was certain that stopping abruptly is what is done, as she had to go get her notes from the conference to find information.

 

 

Another question: what would a maintenance dose of Augmentin be? (50 lb 5 year old) -and tapering dosage? I'd like to be informed prior to our next appt. Thanks!

[Agnes26]

Thanks Agnes 26! I greatly appreciate your response.

 

"She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers."

 

Given this information, I will call the office today to request that our Dr. consults with Dr. Murphy re: Augmentin, dosage length, and discontinuation. I wasn't confident the the Dr. was certain that stopping abruptly is what is done, as she had to go get her notes from the conference to find information.

 

 

Another question: what would a maintenance dose of Augmentin be? (50 lb 5 year old) -and tapering dosage? I'd like to be informed prior to our next appt. Thanks!

 

Dr. M had our DD on a pretty hefty dose of Augmentin 600 ES at 55 lb., but I can't tell you what would be right for your kiddo. As far as the taper would go, Dr. M's advice was to stay on the abx until symptoms remitted and then wait until summer break to begin scaling back on the dose. Dr. M has written a ton of medical papers. Have your doctor read those. There's also more info on PANDAS Network you can arm yourself with. http://pandasnetwork.org/treatments/antibiotics/

[jenann]

 

Thanks Agnes 26! I greatly appreciate your response.

 

"She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers."

 

Given this information, I will call the office today to request that our Dr. consults with Dr. Murphy re: Augmentin, dosage length, and discontinuation. I wasn't confident the the Dr. was certain that stopping abruptly is what is done, as she had to go get her notes from the conference to find information.

 

 

Another question: what would a maintenance dose of Augmentin be? (50 lb 5 year old) -and tapering dosage? I'd like to be informed prior to our next appt. Thanks!

 

Dr. M had our DD on a pretty hefty dose of Augmentin 600 ES at 55 lb., but I can't tell you what would be right for your kiddo. As far as the taper would go, Dr. M's advice was to stay on the abx until symptoms remitted and then wait until summer break to begin scaling back on the dose. Dr. M has written a ton of medical papers. Have your doctor read those. There's also more info on PANDAS Network you can arm yourself with. http://pandasnetwork.org/treatments/antibiotics/

 

Was the 600 ES an oral suspension? Did you give it 2x's daily? Sorry for asking more questions... I am SO concerned about this issue, as we have seen much improvement and I don't want ds to backslide, or.. (as I have read) have a more serious exacerbation if it were to happen again.

I am looking up information on this at the PANDAS Network site as well.

Again, I am very grateful for your help!

[Missmom]

I would agree, try to convince your ped to stay on a full dose of augmentin until at least summer then try to taper. Spring is always our worst season around here. Looking back through my records my son use to get strep every spring.

[jenann]

I would agree, try to convince your ped to stay on a full dose of augmentin until at least summer then try to taper. Spring is always our worst season around here. Looking back through my records my son use to get strep every spring.

Thank you missmom! Unfortunately our pediatrician isn't on board with this PANS/PANDAS diagnosis (yet?!) But I have called the Psychiatry Clinic where he was diagnosed and left a message for the Dr. sharing my concerns, (she's on vacation) I referenced the research in this area and asked if we could taper to a prophylactic dose and for them to consider consulting with Dr. Murphy. Also, ds did have 2 "mini flares" while on this full dose 1000MG augmentin/clav a day, after he seemed to have some type of viral infection, (fever & sore throat.) I would think given that he had those "flares" I have some evidence that a Prophylactic dose would be prudent.

You are right about spring being a time for of all types of illnesses popping up, allergies, Croup, Strep, etc.! I will also use that concern to discuss with the Dr. as to why a prophylactic dose would be wise as well. It is so concerning to have our kiddos on these drugs so long, but the alternative, thinking about a worse exacerbation is frightening. This road seems so long : (

You all are amazing, to be so helpful! Thank you!

[MPatti]

Thanks again for the welcome and all of the responses to my post. It certainly gives me comfort to know that I am not alone, but at the same time brings me such sadness that our children have to suffer with this. To give an update - as I mentioned my son has not yet shown any improvement. In fact, beginning last night he has again started becoming very emotional - crying about things that normally would not upset him at all. I called Dr. L's office today and left a message - the receptionist called me back to let me know she had passed along my message and instructed me to stop the steroid after day 14. I am not sure what stopping the steroid might do?? I hope some improvement is in our near future. Thanks again to all of you - I really appreciate everyone's kindness and advice.

[Agnes26]

mpatti, so sorry he didn't have positive response to the steroids. Hang in there. Jenann, yes Augmentin ES is a suspension and is dosed 2x day.

[MPatti]

Thanks, agnes26. Since he did not have a positive response to the steroids does that mean he may not have pandas?

[jenann]

Thanks, agnes26. Since he did not have a positive response to the steroids does that mean he may not have pandas?

mpatti- I am by no means experienced at this and am not 100% positive this is peer researched paper information, but I've read in a few Lyme forums that if LYME is part of the equation to "stay AWAY from steroids." Please research & look for yourself? The reason I am sharing this is because I have considered Lyme as being our underlying infection as ds didn't test positive for Strep. We have a cabin in the Northwoods of Minnesota that ds has been going to since he was 6 months old. I was worried about chemicals so I can tell you I haven't used a lot of DEET to prevent tick bites. He has had many, many insect and who knows what other type of bites. He swells up with even a gnat bite, so he has had many " odd rashes" so to speak! Our home is also in an area with a LOT of ticks as well. We also have two four legged friends as well, that could bring ticks into the house. (For you dog lovers~ A Boxer and a Golden) But.. I am still researching all of this and trying to figure out what my son's underlying infection is. I also am planning to test for Lyme in the future after speaking with Elizabeth Maloney, a Lyme expert, (Not the Saving Sammy Maloney) but was told (by her) to wait, as antibiotics would not help with test results. Possibly PANS can be triggered by Lyme, so don't be so sure it's not PANS? Maybe post again so the "Lyme experts" will chime in, as I am very inexperienced. It would be beneficial to me as well to get some advice in the Lyme area from these ANGELS on ACN Latitudes! For now, I am going to try to keep my ds on Augmentin at least until summer as per the much respected advice I have gotten here!

 

My son as you may remember has not been given Steroids and is improving SLOWLY on the antibiotics alone. He is not the same as he was prior to the FLUMIST but has improved. He is maybe at 75% baseline.

 

Agnes26-Thanks again, for the information~ I am forever grateful! I left a message with our Dr.'s nurse today, re: my concerns on the abrupt stopping of Augmentin this Friday. I cited research regarding prophylactic Antibiotics and mentioned a connection with a parent of a child with PANDAS, and your experience with Dr. Murphy's protocol. (Not to say it hasn't changed) and that perhaps she could consult Dr. M?

[jenann]

Thanks, agnes26. Since he did not have a positive response to the steroids does that mean he may not have pandas?

Saw Dr. B on Friday & hopeful...

m patti-

 

Read the full post…its very informative. Especially her experience with Dr.'s…and her recent exploration of Lyme.

 

"4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later."

[jenann]

Hello--

 

I can concur that it takes time. Our son was diagnosed by Dr. Latimer last May and received IVIG in early June. She warned us that it might take as long as 6 months for the IVIG to take effect. He has been on Augmentin since May and will continue it through the school year. His primary symptom was OCD and attachment anxiety. We couldn't take him to school because of his panic attacks. So we chilled last Summer after the treatment, and then to help him with re-entry to school in the Fall we started him on a low dose of an SSRI. We were reluctant but felt we needed to help him any way we could, and school is the best place for a 7 year old. It worked. The first few months were challenging, but I think the combination of the SSRI helping him build his confidence by making it through each school day, and the 6 months it took for the IVIG to kick in, led to him being able to go to school all day, alone, happily starting in December.

 

Every child is different, but I can attest to the truth in that it takes time. Although dealing with Dr. Latimer can be frustrating, I believe in her judgement.

 

Hope this helps. Don't stop looking and trying. All the best to you--

 

OBDad

May I what SSRI was used? My sons Dr. is considering trying one in the future. Thanks in advance...