Confused, worried, running out of time

[MSmom]

I have been reading the forum, have talked with some moms(thank you!) and I am feeling paralyzed with confusion about which treatment path to follow, which doctor to see, etc. Long term prophylactic antibiotics seems to have worked for some, IVIG seems to have worked for some--I don't know which way to go.

Would love opinions/advice, as my daughter is 16, and I know that at her age, getting a handle on this cruel illness is critical. She has had bouts of very severe illness following strep infections at least 3 times. These were SEVERE physical illnesses that had her bedbound for months. It wasn't until the last bout, this last February that I made the connection with strep. Her strep had gone untreated for weeks. I was questioning whether she might have rheumatic fever, but when you ask physicians about rheumatic fever, they look at you like you are crazy and tell you that no one gets that anymore. She presented to me like a classis case of rheumatic fever (but her inflammation markers were not high when they checked them (?) Can't figure that out.) Along with the physical illness came the separation anxiety, the worries, doubts, anxiety, ADHD behaviors, handwriting deterioration. We could get no help locally. (We finally, this past year, found a rheumatologist who agrees she had a post strep reaction of some sort. But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. In between infections, she has much less anxiety and worrisome thoughts. It seems to always simmer just below the surface and explode with strep. When I say explode, it is that sudden---she does not even want me to leave her room at night when she is like that, and she worries about anything and everything she has ever said to anyone.) My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go.

Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me.

Pam

[LNN]

I don't know if you can look at everyone's stories and get a one-size-fits-all solution. I think you need to get a detailed picture of your own child and then use that to guide you.

 

Since you feel confident in a Pandas diagnosis, I don't know that a Cunningham test would add much to the picture.

I think I would have a second ASO and anti-D Nase B titer test done so you can see which direction they are headed - still elevated or on the way down.

Then I'd have an immuno work up done - IG sub-classes, pneumococcal titer panel, C3D - those were our tell-tale results.

I would also have both ELISA and Western Blot tests for Lyme to rule it out, plus mycoplasma. I'm sure others can suggest additional tests.

 

If you find evidence of immune deficiencies, you can feel more comfortable that IVIG is a logical treatment that will likely address the problem.

If you find evidence of co-morbid infections in addition to the strep, you can pursue antibiotics that are targeted to that particular bacteria

and if you still see evidence of strep (rising titers), you can try prophylactic abx

-or perhaps some combination of the above since it's rarely simple.

 

But I'd suggest additional testing to help you chart your course. You can't base a decision on what's worked for others - it needs to be based on the particular child. Then you need to follow your heart.

 

Best,

Laura

Edited May 24, 2010 by LLM

[dcmom]

Pam P.

 

I am sorry for what you and your daughter have been through.

 

It is hard to find a doctor who believes in pandas (as you know), but then sometimes even if they do, they don't understand the incredible toll pandas takes on the child (not to mention the family). I always think: if I took my kid to the doctor, and she was having trouble breathing, they would do EVERYTHING in their power (so called risky, or not) to make sure she could breathe easily, and not have this problem again. Most conventional medical docs have no experience with any mental illness, they do not realize that this crippling ocd, anxiety, anorexia, rage, depression, etc is equivalent to not being able to breathe.

 

So- what I say to everyone- Don't waste your time with these docs, get to a pandas doc, immediately. You need a doc that will do what your daughter needs, and that may be antibiotics, steroids, ivig and/or pex.

 

I would suggest Dr L or Dr K, asap. While waiting for the appt, I would get the cunningham test, if you can....

 

Medical treatment always looks at the risk of treatment vs the risk of no treatment. Unfortunately, most docs don't understand the risk of no treatment- so I do not believe they are qualified to make that decision.

 

Good luck- I am sure you will get more advice.

 

My suggestion of treatment is not to waste time: one month of full strength antibiotics (maybe zithromax) followed by a month long steroid burst. At the end of those two months re evaluate, and consider if needed- ivig or pex. Those treatments are nothing compared to the agony for these kids.

[jjk4]

I have been reading the forum, have talked with some moms(thank you!) and I am feeling paralyzed with confusion about which treatment path to follow, which doctor to see, etc. Long term prophylactic antibiotics seems to have worked for some, IVIG seems to have worked for some--I don't know which way to go.

Would love opinions/advice, as my daughter is 16, and I know that at her age, getting a handle on this cruel illness is critical. She has had bouts of very severe illness following strep infections at least 3 times. These were SEVERE physical illnesses that had her bedbound for months. It wasn't until the last bout, this last February that I made the connection with strep. Her strep had gone untreated for weeks. I was questioning whether she might have rheumatic fever, but when you ask physicians about rheumatic fever, they look at you like you are crazy and tell you that no one gets that anymore. She presented to me like a classis case of rheumatic fever (but her inflammation markers were not high when they checked them (?) Can't figure that out.) Along with the physical illness came the separation anxiety, the worries, doubts, anxiety, ADHD behaviors, handwriting deterioration. We could get no help locally. (We finally, this past year, found a rheumatologist who agrees she had a post strep reaction of some sort. But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. In between infections, she has much less anxiety and worrisome thoughts. It seems to always simmer just below the surface and explode with strep. When I say explode, it is that sudden---she does not even want me to leave her room at night when she is like that, and she worries about anything and everything she has ever said to anyone.) My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go.

Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me.

Pam

 

 

Hi. I would like to add to LLM's suggestion to make sure you have as much information about the possible bacterias that are triggering your daughter's symptoms. It is critical for her healing.

My daughter (9) also had repeated illness with strep but also has food allergies. Treating these issues with diet and full dose Augmentin for 6 months helped some with her compulsions, anxiety, fatique and general behavior, but the biggest change we have seen was when we started treating her for Lyme/Bartonella 3 months ago. Addressing the combination of the above has made a big difference. According to our Lyme doctor, the co infection Bartonella can trigger neuropsychiatric symptoms and needs to be addressed (we currently are doing this with Zythromax, Bactrim and pulsed Tindamax). We have not ruled out the need for IVIG in the future but are giving this a try first...we are seeing results.

This can be such a confusing process but keep digging to get the answers you need. We cycled thru seeing 8 different doctors, had an endoscopy, tonsilectomy, and numerous tests (blood...including 2 negative standard Western Bolts, CT scan, EEG, echocardiogram) before getting proper testing thru IGENEX and treatment specific for Lyme/Bartonella.

Hang in there and follow your gut...you will find a way to help you daughter!

Good luck.

Joanne

[parents4eyes]

x

Edited July 17, 2010 by parents4eyes

[peglem]

I didn't read everything here, but it seems to me like the doc could offer some temporary relief, while at the same time addressing long term immune problems.

[Rowens1214]

My son is 15 so i can understand your need to do something sooner then later. We have decided to pursue the IVIG route. He has been on antibiotics for 5 weeks and is slowly getting better. He has minor tics. Its the OCD, (obtrusive thoughts, sep anxiety that is so hard for him. We had to take him out of public school 6 weeks ago. We were lucky to find a Dr in my home town that is familiar with PANDAS. I did a phone conf with Dr. K and gave our local docr all my notes from our consultation. She is willing to follow his recomendations for antibiotics and the IVIG dose he recommended. You will find so much info and support here. Keep us posted

 

Robin

 

P.S. I live in NC on the coast if anyone here is looking for a dr in this area.

[pathfinder]

I have a 16 yrs old son with anxiety, intrusive thoughts ( can't let go and forgive ), and highly allergy to practically everything.

I can totally relate your situation as I am in a very similar spot. It makes it that much harder for a older kids like ours. I don't mean to offend anyone but I can not help myself from contradicting from your dr. . I believe pandas is as serious as any life threatening illness and I would not stop to pursue the right treatment for my son (only problem is that I don't know what is the right treatment) I wonder if anyone has right to decide pandas is less important than any other serious illness ( maybe insurance co can ) We go on fighting for our kids to get the best treatment modern science can offer.

My heart goes out to your daughter and you.

thank you for sharing your story.

From Diamond Bar

[T_Mom]

Hi -- I don't have much to add to what all have so aptly stated.

 

I strongly agree with DCMom that there is good reason to find someone that has had EXPERIENCE treating kids with PANDAS... If you cannot get to someone like this, then call them on the phone and pay for a phone consult--well worth trying it in my opinion--

 

The PANDAS experienced doctor can advise the local doc. as necessary.

 

Our d did very well with full strength antbiotics and steroid bursts (2 in one year). We considered these to be very BENIGN compared to what she was experiencing. These have been effective in erradicating her OCD and tics.

 

It sounds like your child may have additional considerations to contend with--I am so sorry you have had to find this forum, but I do wish you fast success in finding the right treatments--

[matis_mom]

Hi Pam,

I am sorry to hear what you are going through, it definitely seems your daughter has PANDAS. It is very frustrating when you know what is wrong with your child but the doctors don't see it! I do believe my son had RF too, but it went undiagnosed. Only now looking back I am tying all the strings and saying "duh!"

I understand your predicament as we too went through a holistic doctor who, thank God, diagnosed PANDAS right away. They put him on abxs, but at a low strength, and we saw some improvement in physical well-being, but the neurological symptoms were still very strong. So we did that for awhile, but then decided to go see a PANDAS specialist (Dr. Latimer). It was not until he started with the heavy duty antibiotics plus steroids that we saw a dramatic improvement. At their age, even a week wasted is precious time. At least for my son, each day he seemed more and more "caged" and limited by his OCD (it seems from your post your daughter is going through the same?)

So yes, I am all for the natural thing and trying to "fix" the immune system, but this disease is something you need to tackle head on. A new exposure will only make it worse (we've had 4 re-exposures so far!!!), so it's not like you can sit an hope she is never exposed to strep again.

My advice is to find a specialist, try full strength antibiotics (my son is only 12 and taking 2000mg of Augmentin XR daily), and then on top of that you might need to do IVIG or plasmapheresis, but first thing is to get her on heavy duty abxs. I know, the mess up a lot of other stuff, but that can be worked on later. Right now you need to stop the strep cycle.

 

Hope this helps, and PM me if you have any questions.

 

Isabel

[T_Mom]

Hi Pam,

I am sorry to hear what you are going through, it definitely seems your daughter has PANDAS. It is very frustrating when you know what is wrong with your child but the doctors don't see it! I do believe my son had RF too, but it went undiagnosed. Only now looking back I am tying all the strings and saying "duh!"

I understand your predicament as we too went through a holistic doctor who, thank God, diagnosed PANDAS right away. They put him on abxs, but at a low strength, and we saw some improvement in physical well-being, but the neurological symptoms were still very strong. So we did that for awhile, but then decided to go see a PANDAS specialist (Dr. Latimer). It was not until he started with the heavy duty antibiotics plus steroids that we saw a dramatic improvement. At their age, even a week wasted is precious time. At least for my son, each day he seemed more and more "caged" and limited by his OCD (it seems from your post your daughter is going through the same?)

So yes, I am all for the natural thing and trying to "fix" the immune system, but this disease is something you need to tackle head on. A new exposure will only make it worse (we've had 4 re-exposures so far!!!), so it's not like you can sit an hope she is never exposed to strep again.

My advice is to find a specialist, try full strength antibiotics (my son is only 12 and taking 2000mg of Augmentin XR daily), and then on top of that you might need to do IVIG or plasmapheresis, but first thing is to get her on heavy duty abxs. I know, the mess up a lot of other stuff, but that can be worked on later. Right now you need to stop the strep cycle.

 

Hope this helps, and PM me if you have any questions.

 

Isabel

 

 

Well said Isabel--

Once I saw my child getting better with treatments I only wished we had treated more aggressively earlier

--for her sake.

[momaine]

Pam,

One piece of advice I would offer is to get to Dr. Bouboulis in CT or Dr. K in Chicago. One of those two doctors will help you immediately without messing around trying to convince another doctor of the need for antibiotics or deal with someone who cannot offer IVIG if it becomes neccesary. In the meantime, if you can get a local doctor to prescribe antibiotics, great. And if you can get some of the tests done before you see Dr. B or Dr. K, then you'll be more prepared.

 

Good luck.

Sorry you are in these shoes.

 

Angela

[Stephanie2]

Pam, I just responded to your PM, but I wanted to give you my opinion regarding not using antibiotics and allowing the doc to fix her immune system over time. I have struggled with that concept so many times and I really am not sure what is the right path to choose.

 

In our case, our original DAN doctor in Miami (who is very well-respected and lectures at the DAN conferences, he's on TV, yada, yada) wanted me to wait for the "tincture of time" as he called it to allow the body to move back in balance with natural treatments, etc. He gave my son 5 days of zithromax and that was his extent of treating strep. He also did not suggest IVIG. I wanted so badly to "trust" him, but in actuality we were living a nightmare and my son was barely functional and our whole family was so severely disrupted by it. Not to mention, my younger son was just starting to have tics/ocd which later exploded. I mean, how can any mom deal with two completely raging and dysfunctional boys? I decided that I had to "jump ship" on our first DAN doc or my own life was going to be in danger b/c I was going down with these boys - BIG TIME!

 

So, now we are with Scott Smith, as you know. Do we have both boys under 100% control? No, but I have not yet followed all of his suggestions (taking our time) and I would say we are definitely 50-75% better than before I went to him. Scott knows what it is like when your children fall apart and you can't function. I can tell you that he will not leave you hanging with a strep infection...and he won't make you go driving around town chasing down a positive strep culture, either. You just call him and tell him what you are observing. If you thing there is any chance your daughter has strep, he will have an antibiotic called in stat...

 

I still HATE throwing meds at my kids! My husband hates it too. But the way I look at it is, yes these integrative docs know how to cure or really control autoimmune illness. But do they know how to cure/control PANDAS? Do we have the year or so to wait around and see if they can? If I didn't have so much on my plate, maybe I would wait around and see if they could do it, but I don't think I would last that long!! I don't even think I could administer all these supps/meds to screaming, raging boys so bottom line is there's no way we could do it...

 

With that said, once you get your daughter under better control, maybe then you could pursue a more natural approach (I still believe I will do this in the back of my mind if I have any energy left!).

 

Just my thoughts!

Stephanie

 

 

 

I have been reading the forum, have talked with some moms(thank you!) and I am feeling paralyzed with confusion about which treatment path to follow, which doctor to see, etc. Long term prophylactic antibiotics seems to have worked for some, IVIG seems to have worked for some--I don't know which way to go.

Would love opinions/advice, as my daughter is 16, and I know that at her age, getting a handle on this cruel illness is critical. She has had bouts of very severe illness following strep infections at least 3 times. These were SEVERE physical illnesses that had her bedbound for months. It wasn't until the last bout, this last February that I made the connection with strep. Her strep had gone untreated for weeks. I was questioning whether she might have rheumatic fever, but when you ask physicians about rheumatic fever, they look at you like you are crazy and tell you that no one gets that anymore. She presented to me like a classis case of rheumatic fever (but her inflammation markers were not high when they checked them (?) Can't figure that out.) Along with the physical illness came the separation anxiety, the worries, doubts, anxiety, ADHD behaviors, handwriting deterioration. We could get no help locally. (We finally, this past year, found a rheumatologist who agrees she had a post strep reaction of some sort. But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. In between infections, she has much less anxiety and worrisome thoughts. It seems to always simmer just below the surface and explode with strep. When I say explode, it is that sudden---she does not even want me to leave her room at night when she is like that, and she worries about anything and everything she has ever said to anyone.) My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go.

Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me.

Pam

[Joan Pandas Mom]

Pam, I'm so sorry to hear of this. I know what a nightmare it is. My son is 15 1/2 and we just had our first IVIG last Thursday and Friday with Dr. K. From my personal experience, I wish I had done it much sooner. Tonight his OCD is off the charts, but I expected it. Dr. K. and parents here have said it is a rough couple of weeks post IVIG but then things do get better. I would go to one of the docs here that do IVIG. It takes can take months to get in so start tomorrow. I trusted Dr. K. He has so much experience is is so smart.

[MSmom]

Wow, I can not thank you all enough for all of these informative and encouraging messages. I am going to print out this entire thread! Thank you all so much. I am VERY grateful for this forum.

Pam

I have been reading the forum, have talked with some moms(thank you!) and I am feeling paralyzed with confusion about which treatment path to follow, which doctor to see, etc. Long term prophylactic antibiotics seems to have worked for some, IVIG seems to have worked for some--I don't know which way to go.

Would love opinions/advice, as my daughter is 16, and I know that at her age, getting a handle on this cruel illness is critical. She has had bouts of very severe illness following strep infections at least 3 times. These were SEVERE physical illnesses that had her bedbound for months. It wasn't until the last bout, this last February that I made the connection with strep. Her strep had gone untreated for weeks. I was questioning whether she might have rheumatic fever, but when you ask physicians about rheumatic fever, they look at you like you are crazy and tell you that no one gets that anymore. She presented to me like a classis case of rheumatic fever (but her inflammation markers were not high when they checked them (?) Can't figure that out.) Along with the physical illness came the separation anxiety, the worries, doubts, anxiety, ADHD behaviors, handwriting deterioration. We could get no help locally. (We finally, this past year, found a rheumatologist who agrees she had a post strep reaction of some sort. But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. In between infections, she has much less anxiety and worrisome thoughts. It seems to always simmer just below the surface and explode with strep. When I say explode, it is that sudden---she does not even want me to leave her room at night when she is like that, and she worries about anything and everything she has ever said to anyone.) My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go.

Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me.

Pam