PANDAS and Dr. Murphy

[kkver]

Thnaks alot Michele for sharing this great experience. I had similar issues with my son for some time and was able to get help from Murphy mostly over the phone as i am on west coast. As you said key is keeping the strep away , multivitamins , lots of vegitables and fruits ( if organic better ) , fish oil . I used zithromax and found to be highly effective in reducing the tics in past.

[michele]

I have not been able to get Zith prescribed. Dr. Murphy said to ask for Augmentin or Omniseph. I will see if the Dr. 's here in Ohio will take her advice. Right now we are stuck on Pen V and see little improvement because he has been in a exacerbation period for a couple months. I go back to Cleveland Clinic neurology next week so we will see what I can get out of Erenberg on how to treat this. In the past it is see you in six months. If he got over it before it should go away again. I guess with his age its been let's watch and see game. The Dr. never even recommended supplements or diets I found that all here. If only we could keep him in a bubble! Did you have everyone in your home cultured ?

Michele

 

 

Thnaks alot Michele for sharing this great experience. I had similar issues with my son for some time and was able to get help from Murphy mostly over the phone as i am on west coast. As you said key is keeping the strep away , multivitamins , lots of vegitables and fruits ( if organic better ) , fish oil . I used zithromax and found to be highly effective in reducing the tics in past.

[michele]

Dedee,

Does he have trouble with behavior and emotions during exposure periods? If not boy you are lucky. Does he have any trouble focusing? I pray that doesn't come out for your sake and his. Blessings to you.

Mich

 

 

Michele,

 

So glad to hear that you also had a good experience with the Shands Clinic. I felt everyone there was so helpful and polite. Your information from Dr. Murphy will be a great help to so many. My son does not have the ADHD component to PANDAS, only the OCD and Tics. I feel very fortunate that we have avoided that so far. My pediatrician was agreable to the suggestion of continuous antibiotics with the letter she received from Dr. Murphy after our visit. We haven't had any problems since. It sounds like she gave you alot to work with. I hope you are able to make progress with this plan. It must seem a bit overwhelming right now. I know you will be able to get things organized and going for your son. You are a very dedicated mother. Just take a deep breath and take it one step at a time. Thanks again for your post. Good Luck and God Bless.

 

Dedee

[Dedee]

Michele,

Interesting that you would ask that. What I have seen since he has been started on continuous antibiotics is that when another child in the family has a strep infection, he will not actually have strep but he will have some real emotional issues like before only milder. Also, he starts having trouble concentrating on his homework and gets frustrated very easily and cries alot. Basically he exihibts milder PANDAS symptoms without the full blown episodes. His tics will come back very mild and I will start giving him epsom salt baths again and increase his calcium/mag for a while. Sometimes I notice that he begins going to urinate alot. Of course, we try to not to bring any of this to his attention and just keep on keeping on like it is just another day and usually after about a week things get back to normal. Actually since school has started back I have noticed a slight increase in his head turning tic. I suspect there is some mild exposure from school that has caused it. However, as I said before, all of this is sooooo much better and easier for him and us to live with compared to before, that it really is no big deal any more. Just like you posted, if it doesn't bother the child or interfere with his life, leave it alone. Well, my son is happier than I have ever seen him and has more friends than he has had before. So that makes me a happy Mom. His grades are good and he isn't struggling in school. We are even thinking about decreasing his OCD medicine again. We decreased it about 6 months ago and he is still doing well, so I think I am going to decrease it again. I would love to get him off of it all together. He has had to be on it since age 5, because his OCD has always been his most significant, life altering issue. I am praying we may finally be at a point where if we go slowly enough we could get him off.

 

I found the information you gave about NAC very interesting. I had not heard about that before. Are you using that now? If so, can you tell a difference. Also, what kind of multivitamin do you use? I haven't really ever found one that was what I wanted and cost effective at the same time as I have three children that really need to have the same type vitamins as far as dye free, etc.. Any suggestions? Again, thanks for posting. We all learn so much from each other. This board is such a blessing.

 

Dedee

[trubiano]

Michele, Dedee:

 

I was wondering if your children seemed confused at times? The past few days my son has had short term memory loss and seems confused at times. This morning was the worst. I found him in the kitchen opening the cupboard doors. When I asked him what he was doing he said "what are these" I kind-of laughed and said the cupboards silly. Then he looked at me strangly and said "what do we use them for". He also wanted to know when we got them. Later, I told him to go get dressed for school and a few minutes later I found him sitting in the car in his underware and backpack. I asked him what he was doing and he said he was waiting for me to take him to school. I told him I said to get your clothes on and he looked confused and said "oh, I forgot". Is this nornal PANDAS relapse behavior? I can't call my Neuro or Ped because they think I'm crazy for not medicating him. I do remember he was showing confusion before we got the diagnosis last March. Writing his name and doing any school work. How can I help him? Just when we think things are getting better something else pops up. I really was hoping that this wouldn't come and go with my child, but it does! Thank goodness for this forum.

[michele]

Hello,

 

Yesterday Andrew's teacher said he had a blank stare on his face. Also he said he dove onto the carpet square. This is something he had not seen before and just gave him verbal warning. He came home and said he wanted out of the Koala room. He did not like being disciplined by his teacher. The teacher wanted to know what kinds of things to expect during these exacerbation periods. He wanted to know how much worse it might get. Well guess what? I took the girls for throat cultures after school and one was positive. Yeh Dr. Murphy! She said whenever he starts symptoms to test the whole family for strep. Also our ped put him on Omniseph. Anyone try this with PANDAS? She wouldn't agree to Azith or Augmentin. I guess there is a lot of resistance coming towards Ohio for strep with these drugs. Hopefully Omniseph makes a difference at 250 MG once a day. Dr. Murphy did not suggest dosages.

 

The confusion your son is having could be from the OCD meds. I know on methotrexate for RA I get into a fog. I can't take that stuff it causes me anxiety. Also ADD causes kids to zone out.

 

I am working at getting Andrew OT and possibly Speech T at school. Anyone have any luck with this? I guess there is a process but for schools to follow with IT's. I do have a diagnosis and prescription from Dr. Murphy for OT and Clev Clinic for ADHD.

 

I have not tried NAC yet but we are stll using NAG now. I will get it when we run out. I think they are both antioxidants and help with immunity from what I read. Dr. Murphy said she new of research on NAG for decreasing neurotoxicity. I figured the NAG could help for my arthritis inflamation and connective joint tissue. My arthritis is flared now too probably due to stress from my worrying about him. Plus I've been eating sugar.

 

He is also taking Nordic Naturals Nordic Berries Vitamins they are orange and the kids love the taste. No gelatin or added flavor or artificial color or gluten or yeast or milk. I don't know they are the best but they were recommended at the health store. I would like to give a b-12 supplement in liquid too I need to order it I think from Kirkman's. Plus he takes Culturelle for lactobillius. Also monolaurin for lauric acid and Coremega for omega 3's. Also Calm Child syrup. We just finished our daily doses and I bribe him to call a friend to come play when he is done. He does great for 5 taking so many big capsules. Next I will try GABA Calm when it comes in at the store in orange tablets. All the best.

Michele

 

 

 

Michele, Dedee:

 

I was wondering if your children seemed confused at times? The past few days my son has had short term memory loss and seems confused at times. This morning was the worst. I found him in the kitchen opening the cupboard doors. When I asked him what he was doing he said "what are these" I kind-of laughed and said the cupboards silly. Then he looked at me strangly and said "what do we use them for". He also wanted to know when we got them. Later, I told him to go get dressed for school and a few minutes later I found him sitting in the car in his underware and backpack. I asked him what he was doing and he said he was waiting for me to take him to school. I told him I said to get your clothes on and he looked confused and said "oh, I forgot". Is this nornal PANDAS relapse behavior? I can't call my Neuro or Ped because they think I'm crazy for not medicating him. I do remember he was showing confusion before we got the diagnosis last March. Writing his name and doing any school work. How can I help him? Just when we think things are getting better something else pops up. I really was hoping that this wouldn't come and go with my child, but it does! Thank goodness for this forum.

[Dedee]

Trubiano,

 

My son does occasionally get a bit scatter-brained, but nothing like you are describing. I would be very concerned if he is not able to identify everyday items. I'm not sure what medications he is on or what but I think I would contact a physician if this continues. It could be a serious issue. Let me know how things go. I'll be praying for you.

 

Michele, my daughter usually is given Omnicef for her strep when she gets it. It seems to work well. I did hear one doctor say that Augmentin would be better. We don't use plain Amoxicillin on her because it never has gotten rid of the strep before when she had it, so they moved up to something stronger. Augmentin is very hard on little tummies though, so that may be why they chose Omnicef. Plus you can give it only once a day so it is easier for school age children. Either way it should knock it out. Good idea to test them. Don't forget to change out everyone's toothbrushes. That is always a huge source of cross-contaimination in families. Hope things settle down soon.

 

Dedee

[trubiano]

I have refused all normal medications. He is on a fish oil, muti vit, Pen V, and a probiotic. When tics flare I use cal/mag. I live in the country and the closest health store is 1 hour away. I ran out of probiotic so he has been off it for about a week. I wonder if yeast could be an issue? I do have a GNC about 40 minutes away do you think they have a good probiotic I can use until I go to the health store on Tuesday next week? I'm going to watch him for a few more days and see if the confusion gets any worse. The Ped will say call the Neuro and the Neuro will say come in for appointment, we'll drive 1 1/2hrs to the office, wait 2 hrs to be seen, and then be told this is normal give him clonidine to calm him down. I wish I could find a doctor that could offer help with PANDAS issues. I don't know what is normal and when to worry. Does Dr. Murphy do phone consults? I should call and see where we are on the waiting list. This is truly an up and down illness for him and myself!

[tlkinser]

Trubiano, my 5 yr old son shows some confusion similar to what you described. I have to repeat simple directions over and over again and sometimes he looks at me like he has no idea what I'm talking about. For ex, I will tell him over and over again to get his shoes on for school and I will look back at him in the car as I'm backing down the driveway and realize that he has no shoes on. Sometimes he will repeat a different question back to me that makes no sense (I will say, "Let's get ready to go" and he'll say something like, "Let's get red or show?? What does that mean??") His 3 yr old sister very often helps him by getting his shoes for him or getting his lunchbox, etc. His hearing is fine and ADD/ADHD hasn't really come up yet. It's as if he's just confused sometimes.

 

I understand why you are concerned. I get a jolt of panic when he shows this kind of confusion. I remember being very concerned last spring when he first exploded with the symptoms and he looked right at me and kept calling me "Daddy". It was as if he were looking through me rather than at me. I took him for a CT scan that night at the ER b/c he also had taken a big blow to the head the week prior. The CT scan showed nothing and it was then that we began our journey into this TS/PANDAS dx. I have no advice, but hope that there is an answer to all of this in the form of diet and suppplementation. We are awaiting some test results for our son and will soon have some direction regarding all of this (hopefully!). You are in my thoughts. Let me know if there's anything I can do to help. You are in GA, right?? I will let you know about our test results with Spherios as soon as they come in.

 

tlk

[trubiano]

tlk,

 

Thank you! I am not happy your child has the same issues, but happy I'm not crazy. We also repeat things over and over before he hears it or understands. He had an MRI in April and it was normal. Just some swelling in the BG, which they said was due to the antibodies being fought. His school work has gone downhill the past two weeks. He came home with 20 questions wrong on a 30 question test. He said he got confused. I don't know what to do. This is all the same stuff coming back from April. Maybe I should take everyone in for a strep test. Thank you again for your reply!

[michele]

Trubiano,

If you have a pharmacy ask them for Culturelle. It is 10 billion lactobacillus GG. There is 30 in a package and it runs $15. My son takes it once a day. Call Dr. Murphy's office again. I called Dustin once a week to remind him of our place on the list and the original date I called him.Also I read this board someone did a phone consult. I really think she may be concerned about the Clonidine. She seemed against meds unless the tics nd OCD was really bad and impairing to daily functioning.

 

Dedee and TLK,

Is 250 of omniseph once a day stronger then 250 pen V twice a day? I sure hope it works too. We are right with you repeating the same things over and over. I think that is the ADD. It is something all of our kids have such similar issues yet in the scope of everyday they seem so alone on the PANDAS.

Michele

 

 

 

I have refused all normal medications. He is on a fish oil, muti vit, Pen V, and a probiotic. When tics flare I use cal/mag. I live in the country and the closest health store is 1 hour away. I ran out of probiotic so he has been off it for about a week. I wonder if yeast could be an issue? I do have a GNC about 40 minutes away do you think they have a good probiotic I can use until I go to the health store on Tuesday next week? I'm going to watch him for a few more days and see if the confusion gets any worse. The Ped will say call the Neuro and the Neuro will say come in for appointment, we'll drive 1 1/2hrs to the office, wait 2 hrs to be seen, and then be told this is normal give him clonidine to calm him down. I wish I could find a doctor that could offer help with PANDAS issues. I don't know what is normal and when to worry. Does Dr. Murphy do phone consults? I should call and see where we are on the waiting list. This is truly an up and down illness for him and myself!

[emma1]

Michele, Just trying to clarify. Dr. Murphy recommended fish oil, vitamins (like a multi-vitamin) and probiotics. But she did NOT recommend antibiotics? Did you ask her why? I am confused that she would not recommend them.

[michele]

Sorry for the confusion. She was fine with us continuing on the Pen V 250 Mg twice a day as a prophylaxis. What I meant to say is she did not say anything about changing the daily antibiotic. She did recommend to step up the antibiotic to Augmentin or Omniseph during exacerbation periods. That is what we are currently doing. Trying Omniseph for three weeks. She also recommends Coremega and a multi vitamin. She said Digestive Enzymes like AFP Protease by Houston were fine to continue on. Also she said the Monolaurin would be fine.

Michele

 

quote name='emma1' date='Oct 5 2007, 01:27 PM' post='17761']

Michele, Just trying to clarify. Dr. Murphy recommended fish oil, vitamins (like a multi-vitamin) and probiotics. But she did NOT recommend antibiotics? Did you ask her why? I am confused that she would not recommend them.

[emma1]

Thanks, Michele! You are so very, very kind to share all the information from your visit with Dr. Murphy. Your information has been invaluable to me. I am trying not to jump the gun, but I was sure I was noticing some tic/ocd symptoms this morning with my daughter. She has been doing very well, but she has been on amoxicillin for 20 days. I think my doctor would prefer that I watch for 7-10 days, but it is difficult.

[Dedee]

Michele,

 

To answer your question, yes Omnicef and Augmentin are both stronger than plain penicillin. Regarding the dose of Omnicef, it depends on the weight of the child and whether you are giving it once or twice daily. Antibiotics are dosed by weight in children. Good Luck.

 

Dedee