Aggie103c

DS, age 16, diagnosed with PANDAS almost 2 years ago. Improved with antibiotics, not with IVIG though. Diagnosed with Lyme and Bartonella Oct 2013. Treated for 8-9 months for Lyme/Bart with no improvement. Went for 2nd opinion. New LLMD said if he had Bart with all the meds he took, he would have improved. So he repeated blood work because he did not believe he had Bart. New blood work showed positive Babesia WA1 which was previously negative. Doc wanted that postive test repeated and it was confirmed positive 2nd time around. First time 1:1024 and 2nd test 1:512. Started Mepron 3 weeks ago. I think I see little tiny glimpses of improvement. How long does it take to see a bigger improvement or is it gradual and/or is it individual? Thanks Aggie

Does anyone have information regarding this positive test? My 16 yo ds was diagnosed with Bartonella, possible Lyme and PANDAS. Someone from his LLMD office called today to start him on a different folate/B supplement because of this positive test. I also requested the test results be sent to my home. This is all I was told so I don't know much else. Thanks, Aggie

Thank you.

Can anyone tell me about their experiences with Dr. Sponaugle in Florida? My ds16 was diagnosed with PANDAS at age 14 and then Bart last fall. Seeing an Llmd since October 31with minimal improvement. I live in CT but willing to travel although it will be more difficult for my ds to go. Any info good or bad is helpful Thanks

I feel your pain MissionMama! You wanted to know if anyone had experience with Dr. K. My ds15 was first diagnosed with PANDAS by Dr. T in NJ. We saw moderate improvement with abx, but a decline when abx were stopped. Dr. T had mentioned to me that Dr. K has more experience with adolescents so when Dr. T stopped replying to my phone calls and emails, I contacted Dr. K. Unfortunately, Dr. T had some family illness issues at the time. Dr. K helped my ds temporarily, but said he needed IVIG which we did in June. I think part of the problem with switching docs and doing everything by phone and email, is that some important points are missed. The IVIG did not work so thanks to the great people on this forum, I found an LLMD. My ds was diagnosed with Bartonella last week and possibly Lyme too. We will get lab results the end of this month. LLM has been a great resource for me. One of her thoughts was that not all docs have all of the answers. So Dr. K is great at diagnosing and treating the strep if that is the only cause. Dr. K will also do phone consults which can be scheduled fairly quickily. Best of luck to you. Aggie

Awesome...

As you can see from all of these replies, PANS puts a huge stress on the family as does many other illnesses. I was already divorced when my ds15 was diagnosed last year. His father added a lot of stress to an already stressful situation. He didn't believe in it and thought it was all behavioral. He was constantly on my case to get him to school and out of the house and be stricter with him. My ds never had behavior issues before. The problem is that PANS is not well known and my ex and I both had a lot of pressure from well meaning docs, family members, friends that it was a behavioral issue. The difference is that I knew something wasn't right and listened to my intuition and researched what it could possibly be. Ds' dad did not. Ds was diagnosed with PANDAS last December and after many different treatments, including IVIG, he did not get better. Last week he was also diagnosed with Bartonella and possibly Lyme by an LLMD. Ds' Dad called me last night and said he feels guilty that he did not do more research on his illness and apologized to me too. He finally gets it and it took only one year! So I am telling you to follow your heart, intuition, inner voice - whatever you want to call it. Your husband will hopefully catch up at some point. He is dealing with it differently than you are, but at least you have support from this forum. Good luck to you and your family! Aggie

I remember reading that someone set up an Excel spreadsheet to keep track of meds and/or observations for improvement or worsening of symptoms. Does anyone have that? I thought it might save me time from making my own. Thanks Aggie

I'm so sorry your family is going through this ScaredMommy. I also live in CT. My 15 yo ds was diagnosed with PANDAS last December. He had an appointment with Leckman at Yale last June. The IVIG study is now closed if that is the study you were looking in to. I ended up cancelling the appointment even after completing 27 pages of paper work and sending it in. One of the nurses called to ask questions before the appointment. I told her I wasn't sure if this appointment was appropriate for my son because his worst symptoms were anxiety and depression and that he had PANDAS. She said "now now, don't put all of your eggs in the PANDAS basket". I had already wasted a lot of time with docs who didn't know anything about PANDAS and didn't want to take a chance. I told I was looking for a doc to administer IVIG and she said Leckman will evaluate and if he thought the patient had PANDAS he would refer to Dr. B in Darien. I don't want to confuse you, but I think the more information you have, the better you can make decisions. MY son ended up having IVIG with Dr. K in Chicago. He is not better yet, but I suspect he has Bartonella also. We are seeing a LLMD in Berlin, CT tomorrow. If you want his name IM me. Best of luck to you, Aggie

I understand rowingmom as he has been very sick for one year - missed school for one year so far. I believe he has had PANDAS/PANS for 4 years though. It would be nice to get him back to life in the real world. Just to have that glimmer of hope that something is on the horizon is very uplifting.

Thank you rowingmom! The pics #3 and #5 look exactly like what my ds has. Can't wait for that appointment. How long to see relief of symptoms given the corect antibiotics?

Can anyone tell me a little more about the stretch mark looking lines that may be indicative of lyme? My ds has them on his chest and back near his armpits. He was bench pressing for a short whilevand thought it was from that. He also has had a headache for one year along with intermittent joint pain, debilitating fatigue, depression , anxiety. He has appointment with LLMD on Thursday. Any info is appreciated. Thanks, Aggie

Thank you LLM. I only wish I read this a while ago. My son had IVIG with Dr. K in mid June. He is still not better. He has an appointment with an LLMD October 31 thanks to this fourm! I suspect he also has Lyme or some other tic borne infection. You are all helping me so much! Aggie

Dr. K replied to my emails by asking that I make an appointment for telephone consultation. I had to send payment (check) before the consult. They do not take credit cards for phone consults. He was very thorough on the phone. Good Luck! Aggie

Thank you all. I am going to try the 5-HTP first. He already takes Vitamin D. I will also give him Magnesium as I am sure there isn't much in the multivitamin. Melatonin (3-9 mg)and 100 mg ( 4 tabs) Benadryl no longer work. He used to take 50 mg Benadryl for sleep which worked beautifully for aout 6-8 weeks only. Can't wait for that LLMD appointment!

My 15 year old ds was diagnosed with PANDAS almost one year ago. His insomnia is a real problem right now. He has taken melatonin, Benadryl, Trazadone, Remuron, Valium, Lunesta and valerian root. Some did not work at all and others worked for 6-8 weeks and now are no longer effective. Any other suggestions? He also has an appointment with Llmd October 31 because he is not improved despite various antibiotics and ivig. Thanks Aggie

Thank you all. I expressed to the doc that I think he is co-infected with something other than strep. ASO titer was 800 and he did take amoxicillin, Cefdinir and maybe another one I can't remember too. I saw the most improvement with augmentin. His lyme titer was negative but done at a local lab although mycoplasma was positive. I will investigate Lyme. Thanks again!

Hi My 15 yo ds diagnosed with PANDAS last December. He was on various abx and augmentin for 4 weeks showed moderate improvement. Prednisone was best. He had Ivig 16 weeks ago with no improvements. Doc wants him on psych Meds to get over the hump. Does anyone have info on that. He is on Celexa and Remuron for sleep. Biggest issues are fatigue and headache. He also has joint pain depression and anxiety with no tics. Aggie

HI, My 15 year old DS was diagnosed with PANDAS in December 2012. He has depression and anxiety, achiness, fatigue and horrible headaches. He has not been to school in one year. Amoxicillin helped a little, Augmentin 875 mg much better and 5 days of prednisone was great! It didn't last though. He had IVIG 16 weeks ago and I do not see any improvement. His doctor said to try psychiatric meds to get him over the hump. He was already on Lexapro and was recently switched to Celexa. He is taking Remuron for sleep. He would go to school if he didn't ave the headache and fatigue. Has anyone tried IVIG that didn't work? what do we do next? I feel lost and don't know what to do for him. Aggie