new and full of questions

[momoffive]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

[Suzan]

Hi, I am sorry you find yourself here but glad you found us!

 

Can you get your son's doctor to keep him on full dose abx ongoing? I would watch the singular as many kids have had increased symptoms on it. My 8 yr old can't take it. She takes zyrtex but my 7 yr old can't take zyrtec so it's all based on the individual.

 

I know you will get lots of great advice here. Good luck to you!

 

Susan

[KaraM]

Hi,

 

Are you giving him any ibuprofin? A lot of parents on here say that helps with inflamation. I believe it does for my duaghter. I

agree with Suzan's advice about the abx. Try to get a longer full course dose. After seeing Dr. Bouboulis, he put my 8 year old (63 lbs) daugher on a treatment dose for a month (1 1/2 tsp about 350 mg), then prophylactic (1 tsp - about 200 mg) indefinitely (every day). I can remember someone posting something about the half life of zithromax being something like 48 hours (someone who knows this, please chime in - I could be way off). If that's the case and he's only getting it once a week, he will be unproteced.

 

Who diagnosed your son? Did you see someone who is very well versed in PANDAS and has experience treating a lot of patients? If you haven't, you should try to get an appointment with either Dr. B, Dr. L, Dr. K, or Dr. T (see the abbreviations thread or the doctors thread at the top of this forum for details about who they are if you don't already know).

 

I hope this helps,

Kara

 

 

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

[momoffive]

hi. I just started ibuprofen today. can you give azithro daily at 200 mg? I'd rather that. we tried 2x per week at 200 mg and it was a nightmare. it did nothing and gave him red dye reactions to boot. I suspect he has yeast issues as well. he sees Dr Elia. thus far she is very responsive.

 

is there anything that one can do to calm the child in the mist of an attack of, say, rage?

[LNN]

hi. I just started ibuprofen today. can you give azithro daily at 200 mg? I'd rather that. we tried 2x per week at 200 mg and it was a nightmare. it did nothing and gave him red dye reactions to boot. I suspect he has yeast issues as well. he sees Dr Elia. thus far she is very responsive.

 

is there anything that one can do to calm the child in the mist of an attack of, say, rage?

 

We used to have big time rages. CBT was extremely helpful. My son was 6 when this first started, so we gave his rage a name - Edgar the Angry, When Edgar showed up, we addressed Edgar and told him to let DS go, almost the way the priest "commands" the demon in The Exorcist. It seemed to make my son relax, knowing we weren't mad at him, just at the emotion, and it let him know we were his allies, trying to help him get rid of the demon. Once we all got on the same page, we moved on to helping my son realize he was in control of Edgar. Edgar might be responsible for the rage, but my son was responsible for Edgar's words and actions. Just like as a dog owner, I'm responsible if my dog bites someone, even tho I didn't do the biting.

 

Depersonalizing, using CBT techniques, and maturity all helped, as did the proper medical care. But Pandas is best treated with both CBT/ERP therapy and medical. So I'd recommend both.

[kimballot]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

 

Hello - and welcome!

 

The families on this site are a world of knowledge! I can share with you some of what I've learned in the past few months that may be of help to you.

 

You mentioned Dr. Elia is seeing your child and recommending PEX. Is Dr. Elia planning to do the PEX or has she referred you to another doc? Dr. L is the only doc I know who is currently using PEX, though I may be mistaken on that one. Also, when she is talking about PEX, I am assuming she means plasmapharesis (which cleans the antibodies out of the blood) along with IVIG (which places new, donor antibodies into the blood).

 

Prior to starting PEX (or any treatment), I think it is important to have very good understanding of your child's immune system and any current or past infections. Has your son had bloodwork done? Most PANDAS docs seem to recommend an immune status panel with 14 serotypes of S. Pneumoniae, ASO, DNASE B, mycoplasma, Lyme with western blot, and several are now also looking at C3D levels. All of these are important to take at baseline, as they can help the doctor to understand what your child's underlying problems are and can help to justify PEX or IVIG so insurance is more likely to cover it.

 

Once you have a better understanding of what the possible infection is, then it may be easier to find the best antibiotic for the job.

 

Also, it is my understanding that it is important to remove any underlying infections before doing PEX or IVIG as these treatments may not "reset" the immune system if the immune system is still weighed down by fighting an ongoing infection.

 

I understand that inflammation is a big issue - it is for us all. I agree with others who have recommended ibuprofen. There are threads on this forum for anti inflammatory diets. Also, regarding yeast - there are threads about yeast as well. You may want to ask for some diflucan with your antibiotic, and be sure to use probiotics (a few hours apart from the antibiotic). The red dye in the azithromycin has been problematic for some. Perhaps someone will chime in with their solution!

 

Best wishes on your journey - please keep asking and reading!

[Suzan]

hi. I just started ibuprofen today. can you give azithro daily at 200 mg? I'd rather that. we tried 2x per week at 200 mg and it was a nightmare. it did nothing and gave him red dye reactions to boot. I suspect he has yeast issues as well. he sees Dr Elia. thus far she is very responsive.

 

is there anything that one can do to calm the child in the mist of an attack of, say, rage?

 

I give my kids L-theanine to calm them. dd8 gets very emotional, not rage but out of control upset, usually about whether or not I'm mad at her but other things too. I give her 100 mg of L-Theanine 2x a day and if I see the switch flipping to out of control, I give her more. It really helps us. Melatonin and 5-htp helps her too.

 

Susan

[matis_mom]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

Hi there,

So sorry about your son! At least now you have a diagnosis. If you've been reading the forum for a while, you probably run into one of my posts, and I am a broken record with this, but here it goes AGAIN

GET THE WHOLE FAMILY CHECKED FOR STREP. RAPID + CULTURE, AND IF YOU CAN CONVINCE YOUR DOCTORS, GET TITERS DONE TOO.

I heard this a year ago, and for some reason did not act on it right away (except I did always get my kids checked whenever my 12yo was showing an increase of symptoms). It turns out both my husband and I have high titers, and I believe this is why my kids kept getting strep (like 5 times since Oct. 09). It may turn out you are all clear, but it is so hard with large families! I have 8 kids, and believe me, it's not fun to have to take them all in. At the beginning I got that "oh you poor crazy thing" kind of look, but after my kids kept testing positive without symptoms, my pediatrician agrees we definitely have a strep problem going.

 

I would maybe try stronger antibiotics before proceeding with PEX. About getting him to sit still, I think the doctor can probably judge that. At Georgetown you have to go in the day before so they can make sure they child will be able to make it through.

 

About the diet thing, if you could the GAPS diet (www.gapsdiet.com) or the Specific Carbohydrate Diet (www.breakingtheviciouscycle.info) would be worth checking out.

 

Isabel

[momoffive]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

Hi there,

So sorry about your son! At least now you have a diagnosis. If you've been reading the forum for a while, you probably run into one of my posts, and I am a broken record with this, but here it goes AGAIN

GET THE WHOLE FAMILY CHECKED FOR STREP. RAPID + CULTURE, AND IF YOU CAN CONVINCE YOUR DOCTORS, GET TITERS DONE TOO.

I heard this a year ago, and for some reason did not act on it right away (except I did always get my kids checked whenever my 12yo was showing an increase of symptoms). It turns out both my husband and I have high titers, and I believe this is why my kids kept getting strep (like 5 times since Oct. 09). It may turn out you are all clear, but it is so hard with large families! I have 8 kids, and believe me, it's not fun to have to take them all in. At the beginning I got that "oh you poor crazy thing" kind of look, but after my kids kept testing positive without symptoms, my pediatrician agrees we definitely have a strep problem going.

 

I would maybe try stronger antibiotics before proceeding with PEX. About getting him to sit still, I think the doctor can probably judge that. At Georgetown you have to go in the day before so they can make sure they child will be able to make it through.

 

About the diet thing, if you could the GAPS diet (www.gapsdiet.com) or the Specific Carbohydrate Diet (www.breakingtheviciouscycle.info) would be worth checking out.

 

Isabel

 

thanks. wow - 8 kids. I have 5 kids I need to get them checked. My doc agreed to strep titers but not cultures. Do I need to get my newborn and 2 year old checked too, or just the bigger kids?

[peglem]

I'd get the 2 little ones checked- if you can get the doc to do it! Many pediatrician believe that little ones CANNOT get strep!

[matis_mom]

I'd get the 2 little ones checked- if you can get the doc to do it! Many pediatrician believe that little ones CANNOT get strep!

My youngest got swabbed at 4 months because 6 out the other 7 kids had either strep or an ear infection. My pediatrician said: "supposedly infants don't get strep, but I've seen them get it." After a year of this, any time we are there for anything, I asked them to check for strep!

The 2-yo definitely needs to be swabbed.

Make an appointment with the doc and have them check ears, lymph nodes, everything.

I don't understand why they would have a problem sending in the 72-hr culture, it's pretty standard in most practices.

Don't just go in for a nurse appointment if you can help it.

 

And, you will have to be Nazi about sharing cups, utensils, etc. Get each kid a separate cup for their toothbrush and give them each their own toothpaste. Sorry, don't want to make you paranoid, but I've learned the hard way!

Edited August 9, 2010 by mati's mom

[momoffive]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

 

Hello - and welcome!

 

The families on this site are a world of knowledge! I can share with you some of what I've learned in the past few months that may be of help to you.

 

You mentioned Dr. Elia is seeing your child and recommending PEX. Is Dr. Elia planning to do the PEX or has she referred you to another doc? Dr. L is the only doc I know who is currently using PEX, though I may be mistaken on that one. Also, when she is talking about PEX, I am assuming she means plasmapharesis (which cleans the antibodies out of the blood) along with IVIG (which places new, donor antibodies into the blood).

 

Prior to starting PEX (or any treatment), I think it is important to have very good understanding of your child's immune system and any current or past infections. Has your son had bloodwork done? Most PANDAS docs seem to recommend an immune status panel with 14 serotypes of S. Pneumoniae, ASO, DNASE B, mycoplasma, Lyme with western blot, and several are now also looking at C3D levels. All of these are important to take at baseline, as they can help the doctor to understand what your child's underlying problems are and can help to justify PEX or IVIG so insurance is more likely to cover it.

 

Once you have a better understanding of what the possible infection is, then it may be easier to find the best antibiotic for the job.

 

Also, it is my understanding that it is important to remove any underlying infections before doing PEX or IVIG as these treatments may not "reset" the immune system if the immune system is still weighed down by fighting an ongoing infection.

 

I understand that inflammation is a big issue - it is for us all. I agree with others who have recommended ibuprofen. There are threads on this forum for anti inflammatory diets. Also, regarding yeast - there are threads about yeast as well. You may want to ask for some diflucan with your antibiotic, and be sure to use probiotics (a few hours apart from the antibiotic). The red dye in the azithromycin has been problematic for some. Perhaps someone will chime in with their solution!

 

Best wishes on your journey - please keep asking and reading!

 

yes, Dr E does plasmapharesis. the only continuous infection I am aware of is strep, but it has not been in his throat. he also has very high bacteria count in his stool [?] could that be strep? I will follow-up re testing and trying other meds.

thanks for the info!!

[matis_mom]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

 

Hello - and welcome!

 

The families on this site are a world of knowledge! I can share with you some of what I've learned in the past few months that may be of help to you.

 

You mentioned Dr. Elia is seeing your child and recommending PEX. Is Dr. Elia planning to do the PEX or has she referred you to another doc? Dr. L is the only doc I know who is currently using PEX, though I may be mistaken on that one. Also, when she is talking about PEX, I am assuming she means plasmapharesis (which cleans the antibodies out of the blood) along with IVIG (which places new, donor antibodies into the blood).

 

Prior to starting PEX (or any treatment), I think it is important to have very good understanding of your child's immune system and any current or past infections. Has your son had bloodwork done? Most PANDAS docs seem to recommend an immune status panel with 14 serotypes of S. Pneumoniae, ASO, DNASE B, mycoplasma, Lyme with western blot, and several are now also looking at C3D levels. All of these are important to take at baseline, as they can help the doctor to understand what your child's underlying problems are and can help to justify PEX or IVIG so insurance is more likely to cover it.

 

Once you have a better understanding of what the possible infection is, then it may be easier to find the best antibiotic for the job.

 

Also, it is my understanding that it is important to remove any underlying infections before doing PEX or IVIG as these treatments may not "reset" the immune system if the immune system is still weighed down by fighting an ongoing infection.

 

I understand that inflammation is a big issue - it is for us all. I agree with others who have recommended ibuprofen. There are threads on this forum for anti inflammatory diets. Also, regarding yeast - there are threads about yeast as well. You may want to ask for some diflucan with your antibiotic, and be sure to use probiotics (a few hours apart from the antibiotic). The red dye in the azithromycin has been problematic for some. Perhaps someone will chime in with their solution!

 

Best wishes on your journey - please keep asking and reading!

 

yes, Dr E does plasmapharesis. the only continuous infection I am aware of is strep, but it has not been in his throat. he also has very high bacteria count in his stool [?] could that be strep? I will follow-up re testing and trying other meds.

thanks for the info!!

I wanted to add if he has GI issues and the strep was in his gut (is that right?), it is probably a good idea to look into the Specific Carbohydrate diet. I mention this because you said sugar makes him worse. Sweets and other stuff lower your PH, and microbes thrive in an acidic environment.

[momoffive]

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

 

Hello - and welcome!

 

The families on this site are a world of knowledge! I can share with you some of what I've learned in the past few months that may be of help to you.

 

You mentioned Dr. Elia is seeing your child and recommending PEX. Is Dr. Elia planning to do the PEX or has she referred you to another doc? Dr. L is the only doc I know who is currently using PEX, though I may be mistaken on that one. Also, when she is talking about PEX, I am assuming she means plasmapharesis (which cleans the antibodies out of the blood) along with IVIG (which places new, donor antibodies into the blood).

 

Prior to starting PEX (or any treatment), I think it is important to have very good understanding of your child's immune system and any current or past infections. Has your son had bloodwork done? Most PANDAS docs seem to recommend an immune status panel with 14 serotypes of S. Pneumoniae, ASO, DNASE B, mycoplasma, Lyme with western blot, and several are now also looking at C3D levels. All of these are important to take at baseline, as they can help the doctor to understand what your child's underlying problems are and can help to justify PEX or IVIG so insurance is more likely to cover it.

 

Once you have a better understanding of what the possible infection is, then it may be easier to find the best antibiotic for the job.

 

Also, it is my understanding that it is important to remove any underlying infections before doing PEX or IVIG as these treatments may not "reset" the immune system if the immune system is still weighed down by fighting an ongoing infection.

 

I understand that inflammation is a big issue - it is for us all. I agree with others who have recommended ibuprofen. There are threads on this forum for anti inflammatory diets. Also, regarding yeast - there are threads about yeast as well. You may want to ask for some diflucan with your antibiotic, and be sure to use probiotics (a few hours apart from the antibiotic). The red dye in the azithromycin has been problematic for some. Perhaps someone will chime in with their solution!

 

Best wishes on your journey - please keep asking and reading!

 

yes, Dr E does plasmapharesis. the only continuous infection I am aware of is strep, but it has not been in his throat. he also has very high bacteria count in his stool [?] could that be strep? I will follow-up re testing and trying other meds.

thanks for the info!!

I wanted to add if he has GI issues and the strep was in his gut (is that right?), it is probably a good idea to look into the Specific Carbohydrate diet. I mention this because you said sugar makes him worse. Sweets and other stuff lower your PH, and microbes thrive in an acidic environment.

 

that is very interesting because I give him something called alkalime [like a baking soda/lemon mixture] and he feels better. I will look at that diet ASAP! I never knew I needed to be a medical professional to be a mom:)

[kimballot]

yes, Dr E does plasmapharesis. the only continuous infection I am aware of is strep, but it has not been in his throat. he also has very high bacteria count in his stool [?] could that be strep? I will follow-up re testing and trying other meds.

thanks for the info!!

 

I did not know DR. E did plasmapharesis! That is good information to have- thank you for sharing that! Another parent (lismom) dealt with strep in the gut - with high bacteria count in the stool - and had issues with sugar, I recall. You may want to put her name in the search box and look for posts. I don't think she ever did IVIG or plasmapharesis, and I think it has been a long haul for them, but I believe they have seen improvement.

 

Also, is Dr. E doing plasmapharesis (basically, cleaning out the blood) or Plasma exchange (cleaning out the blood and adding donor antibodies). There may be different criteria for insurance coverage for the two different procedures. I know some other parents have been dealing with insurance reimbursement for PEX - perhaps they will chime in.

 

You are doing a great job finding answers - I am sure it has taken quite a bit of detective work to get to the point you are at! I wish you all the best!