Different Docs Different treatments?

[lmkmip67]

We saw Dr. B today for our second appointment. He said it was positive that Ian did well on the steroid. He wants to keep him on antibiotics for a few months and added in Omnicef. I know after that, he said if he wasn't do a lot better we would consider IVIG. So I am curious about the different way doctors approach treatment and which is the preferred method of treatment? It seems like a lot of kids go on antibiotics for years. But Dr. B said no, he doesn't believe in years. It sounds like he treats for a few months and then IVIG is just the next course of action if not enough improvement is seen. I have heard many different stories on here, so what is the best? IVIG makes me nervous and there is no way we could afford it. Our insurance is said to not be IVIG friendly. I am still feeling a bit overwhelmed by everything.

 

Lisa

[PhillyPA]

My son is a patient of Dr. L. He started out with a month long steroid taper and augmentin. He was not back to baseline after three months antibiotics. He then had IVIG 2g/kg in May, July, and August 2010. We retested his blood via Cunningham test yesterday. Dr. L will see my son mid Dec. to decide the next course of treatment, if any. He will stay on antibiotics until he is in his 20's. We have a lot of rheumatic fever in my family so I am not at all intimidated by keeping him on antibiotics that long; especially something as benign as augmentin. Every Pandas doctor seems to be slightly different in their course of treatment. I think as a parent you have to do your own research, ask questions, and go with your gut as to what feels right. IVIG is scary but I really had no choice. My son had no quality of life. Constant suffering. IVIG gave him a big chunk of his life back. He is not back to baseline yet but for the most part, he is enjoying life. He is happy.

[Stephanie2]

We see a DAN doctor and this is what we did, and both boys are 100% in terms of pandas:

 

DS5: 1mg/kg IVIG, then spironolactone and LDN to keep the inflammation down and the immune system in check. he is now on OLE (olive leaf extract) to prevent strep, as he could no longer tolerate the antibiotics (made a mess of his gut, which we are still trying to clean up).

 

DS2: 20 day steroid taper, followed up by spiro and LDN. about a month later he got strep, gave antibiotics, then switched to OLE and he is doing remarkable. We are left with a recurrent clostridia infection from the use of antibiotics which I control with herbs and various probiotics. Before the steroid taper and spiro/LDN, I was in the process of getting IVIG lined up for him, in the end we did not need it.

 

I consider myself very lucky, both of my boys had very severe pandas presentations, i truly never thougt we would ever get to the bottom of it.

 

Here are some links to the use of spiro and LDN:

 

http://www.icdrc.org/documents/Bradstreet%20Spironolactone%20Author%20Copy.pdf

 

http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf

 

It is my personal opinion that LDN should be tried before the use of IVIG: less invasive, cheap, more effective, safer. The main PANDAS docs have not "dabbled" in LDN yet b/c there have not been trials specifically for pandas. But there is a lot of anecdotal evidence that it is a miracle for some children, including mine.

[ma2ar2rm2]

We saw Dr. B today for our second appointment. He said it was positive that Ian did well on the steroid. He wants to keep him on antibiotics for a few months and added in Omnicef. I know after that, he said if he wasn't do a lot better we would consider IVIG. So I am curious about the different way doctors approach treatment and which is the preferred method of treatment? It seems like a lot of kids go on antibiotics for years. But Dr. B said no, he doesn't believe in years. It sounds like he treats for a few months and then IVIG is just the next course of action if not enough improvement is seen. I have heard many different stories on here, so what is the best? IVIG makes me nervous and there is no way we could afford it. Our insurance is said to not be IVIG friendly. I am still feeling a bit overwhelmed by everything.

 

Lisa

I myself am so confussed about PANDAS treatments and what I should be doing for my DD. She was realy bad last year and this past spring hit her all time worse, That is when she had a full blow strep infection.. and it was then that her pedi changed his mind before he was saying she had OCD, anxeity, with a converstion disorder where she changed her anxeity into a physical symptom.. he said that because she was having sensory issues of anything that touched her(like cloths) was putting her in pain and having her flip out about how much it hurt.. When when she got sick sick with the strep throat she was over the top.. After that Pos strep test, the doctor told me he had good news and bad news, Good new was he no longer thought she had a conversion disorder but the bad new was she had PANDAS..

She responded well to antibiotic Started them on May 1, 2010 and has been on them every day since... I would have said over the summer she was 99% better and back to her normal self.. then school started she started with milder stuff.. So Now I would say she is only 90% better..

My questions is what do I do with that 10% of stuff that seems to be hanging on, which seems to be emotional, and anxeity??? Like one min. she will be perfectly fine the next the tiniest little thing can set her off, either crying, or yelling at someone(which isn't her normal personality) Or she will get very fearful over things that isn't something that should be scaring her.. Like just seeing the dark outside, or sleeping in her room, or even our pet cat(who we have had since she was born)OH DD will be 9 years old in Jan 2011 so these are not really normal age type fears. Three times in the last two months those anxeities and emotional outbreaks had made it next to impossable to get her to school or have her go about her day. Her pedi checked her ASO titer at two of those times and they have been normal.

Over the last Month he had done blood work on her 3 times all 3 times it has been in the normal range.

So her pedi is talking about stopping her antibiotic and wanting to put her on zoloft. I so do not want to go the zoloft route.

 

I have spoke to Dr T once and was going to bring him on board with this but my DH has been laid off, just got back to work and DR T. for the phone consult was $450(and next week I have to pay $1400 for dental work she has to have done) so I was waiting just a bit before setting that up. I just feel like I need someone who has treated PANDAS before to tell me what needs to be done next, because while my pedi is a very good doctor, he has never seen PANDAS before and before seeing what my DD went though would have said in he didn't buy into PANDAS..

 

I just feel so lost as to what to do.. I'm hoping to keep her on her antibiotic till the new year and by then beable to bring on a PANDAS doctor to help.

[KaraM]

That's interesting. We see Dr. B., too. My dd8 has responded very well to abx - she's been on them since the end of March. He thought she should stay on through the winter (unless things get bad again and we have to consider IVIG). The plan is if she continues to do well, to try taking her off in the spring. So clearly he'll go more than just a few months. But apparantly not for years...

 

The other thing I think we all have to remember is that every child is different, so it makes sense if treatments vary a bit as well.

 

As someone else said, just educate yourself as much as possible so you know what questions to ask...

 

Kara

[bronxmom2]

Be careful with dental work. Many on here have said it triggered episodes in their kids... because of bacteria getting released. I have seen this in my own son. I try to get him to scrub really well at home and will avoid the dentist until I'm sure he's healthier. Is the dental work something you can put off, use the resources for PANDAS instead?

[lmkmip67]

Thanks for the replies. I guess we just need to see how he does. I am hoping he has more improvement on the two antibiotics. I would like to avoid IVIG. But if it is what has to happen, then I will do it. It just seems so many really bad cases did well on antibiotics alone, Saving Sammy didn't do IVIG.

[ma2ar2rm2]

Be careful with dental work. Many on here have said it triggered episodes in their kids... because of bacteria getting released. I have seen this in my own son. I try to get him to scrub really well at home and will avoid the dentist until I'm sure he's healthier. Is the dental work something you can put off, use the resources for PANDAS instead?

 

I don't think it is something we can put off.. I"m pretty sure it is the dential stuff that is bringing on her symptoms at the moment. She has an abscessed tooth. She had 3 weeks without one single symptoms and then boom out of nowhere on 10/22 woke up a mess, crying, fussing, bitting peoples heads off, throwing fits, and just basicly couldn't stop crying and couldn't tell me what was wrong.. So she didnt make it to school because she couldn't pull it together, Which started her on an anxeity kick about worrying about not being at school and how she is going to flunk(mind you the girl has all A's) which started a whole new round of crying.. She cried for over 3 hours non stop. That whole weekend it was just tears after tears. We all walked around on eggshell trying not to send her over the edge that weekend..

Then on Sunday night it was time for her evening antibiotic but she didn't want to take it, she has never fought me before on taking it because she knows it is what made her feel better and what is keeping her safe.. normally she is the one reminding me it's time. But not that night she was fighting and crying and telling me I hate her and all this stuff..

I wasn't going to battle with her I just filled it in the dropper and put it in her mouth..As she was screaming in a weird way, trying not to drip the antibiotic out of her mouth and also trying not to swallow she was holding her gum up in a weird way and that is when I saw the big ball of puss on her gum... and it hit me, that must be the infection that has brought on all these symptoms..

The next day I called her doctor and he got her in to see him on Tuesday. He upped her antibiotic from 250mg twice a day to 500mg twice a day.. and after the 1st dose she was sleeping better(the 4 days before that she kept waking up screaming and scared for hours at a time though out the night)After 24 hours on the stronger dose most of the emotional stuff was gone..

but we did see the dentist and the tooth is really bad and she has alot of other teeth needing work there is a 2nd tooth tettering on the edge of abscessing.. I'm pretty sure it is the infection which brought on the new round of symptoms so I need to get it taken care of.

We are just going to do all the work at once, putting her under to do it all... But I am prepareing myself for the posibility that after the work she could have alot of symptoms.. But we are going to keep her on the stronger dose for a week afterwards.. and I'll fight for it to be longer if I see she is having symptoms.

 

DD's very 1st melt down was in a dental chair it was the 1st time she seemed lost to me where nothing I did or said could get her to stop screaming and crying.. That was in Feb 2009 So we have sort of avoided the dentist since then, mostly because we were dealing with far bigger stuff then teeth cleaning.. but I don't think this is something I can put off.

[AmySLP]

My daughter is also being treated by Dr. B on ABX so I was surprised by the thought that he would not go more than a few months with ABX or is it that he wouldn't if they were not working (rather at that time trying IVIG). My daughter too will be on them 1 yr a least before we reduce her dose or stop it. My understanding is that he feels some kids will need these for years to some degree. My daughter is young (6, dx at age 4 by Latimer & started treatment then). She responds well to abx and does poorly without them (I've tried several times to take her off) She has primarily tics and choreiform movements. I have thought about trying the OLE that stephanie talked about b/c my daughter does have what I would consider a milder case compared to many on this forum, so thinking that if Stephanie's children who were severe are doing well maybe mine will too. SHe is so susceptible to strep that it does scare me to go off abx. I've decided to wait it out until late spring & try OLE at that time, if she continues to do well. The plan with Dr B is to reduce or eliminate the ABX at that time, so the timing may be right. Although with PANDAS we all know the best laid plans may never come to be. So at this point we are taking it day be day with ABX. My daughter is so done with liquids ABX that she is trying really hard to learn to swallow pills-yesterday she did it for the first time!

 

Good luck- I hope the new med change brings about better results for your son. Long term abx are scary enough, so I understand your concern about IVIG.

[lmkmip67]

My daughter is also being treated by Dr. B on ABX so I was surprised by the thought that he would not go more than a few months with ABX or is it that he wouldn't if they were not working (rather at that time trying IVIG). My daughter too will be on them 1 yr a least before we reduce her dose or stop it. My understanding is that he feels some kids will need these for years to some degree. My daughter is young (6, dx at age 4 by Latimer & started treatment then). She responds well to abx and does poorly without them (I've tried several times to take her off) She has primarily tics and choreiform movements. I have thought about trying the OLE that stephanie talked about b/c my daughter does have what I would consider a milder case compared to many on this forum, so thinking that if Stephanie's children who were severe are doing well maybe mine will too. SHe is so susceptible to strep that it does scare me to go off abx. I've decided to wait it out until late spring & try OLE at that time, if she continues to do well. The plan with Dr B is to reduce or eliminate the ABX at that time, so the timing may be right. Although with PANDAS we all know the best laid plans may never come to be. So at this point we are taking it day be day with ABX. My daughter is so done with liquids ABX that she is trying really hard to learn to swallow pills-yesterday she did it for the first time!

 

Good luck- I hope the new med change brings about better results for your son. Long term abx are scary enough, so I understand your concern about IVIG.

 

Thanks. yes, my son is not loving the liquid. I also won't keep him on two antibiotics for too long. I will try it for the two months and see. But I don't think it is good for his stomach, and everything in moderation. I wish he could swallow pills, but it is still hard for him. I might start trying with Motrin or something else before getting antibiotics in pill form or I will be stuck crushing them all the time. lol I also was curious about the OLE, and even bought some about a month ago before we started the antibiotics in case we couldn't get in anywhere very soon. But I am waiting on that now. I just want to put the least amount of STUFF into his body that I need to for improvement. IVIG is a big thing to us and we will not jump on it unless I feel it is necessary. Right now we couldn't pay for it anyway. What a long road this is.

[JAG10]

What insurance do you have? Did any of your testing come up with immune deficiency?

[AmySLP]

Just wanted to let you know that I bought small probiotic capsules-it's a Jr formula. She can do them well in pudding or applesauce ( I work in a nursing home & wonder why I hadn't thought to try this months ago!). Anyhow, this way it's not the antibiotic and thus not a problem if she can;t get one down-but again today she did it. Also I called the pharmacy and learned that Augementin is available in a chewable in I think 400 mg & 200 mg doses. The pills are coated and can be cut, but not crushed & have more clavaic (sp?)acid. I know there is a max based on weight so I think I'll call Dr B about the chewables tomorrow. The liquids getting unbearable to give her-today she spit it back at me twice! I had to walk away the second time and remind myself this is the PANDAS. Ugh, I really need those pills in time for tomorrow's dose!

[ma2ar2rm2]

Just wanted to let you know that I bought small probiotic capsules-it's a Jr formula. She can do them well in pudding or applesauce ( I work in a nursing home & wonder why I hadn't thought to try this months ago!). Anyhow, this way it's not the antibiotic and thus not a problem if she can;t get one down-but again today she did it. Also I called the pharmacy and learned that Augementin is available in a chewable in I think 400 mg & 200 mg doses. The pills are coated and can be cut, but not crushed & have more clavaic (sp?)acid. I know there is a max based on weight so I think I'll call Dr B about the chewables tomorrow. The liquids getting unbearable to give her-today she spit it back at me twice! I had to walk away the second time and remind myself this is the PANDAS. Ugh, I really need those pills in time for tomorrow's dose!

I hope you are able to get those pills quickly..

[JAG10]

Just wanted to let you know that I bought small probiotic capsules-it's a Jr formula. She can do them well in pudding or applesauce ( I work in a nursing home & wonder why I hadn't thought to try this months ago!). Anyhow, this way it's not the antibiotic and thus not a problem if she can;t get one down-but again today she did it. Also I called the pharmacy and learned that Augementin is available in a chewable in I think 400 mg & 200 mg doses. The pills are coated and can be cut, but not crushed & have more clavaic (sp?)acid. I know there is a max based on weight so I think I'll call Dr B about the chewables tomorrow. The liquids getting unbearable to give her-today she spit it back at me twice! I had to walk away the second time and remind myself this is the PANDAS. Ugh, I really need those pills in time for tomorrow's dose!

 

Amy- I LOL when I read your comment about the applesauce! I've been giving my dd10 her meds in applesauce since she was 6 and have often thought about my old nursing home patients with their applesauce and mashed potatoes!!! If you ever run out of applesauce, whipped cream also does the trick!

[AmySLP]

Whipped cream-she'd always want to take her meds!!!