Back from Dr. Latimer with prescriptions!

[matis_mom]

We saw Dr. Latimer this afternoon. She was very nice, took all our symptoms, did the neuro evaluation and looked at all our labs. She is pretty confident high dose Augmentin and a month of steroids will bring great relief. I though my son was not so bad compared to other PANDAS kids, but she noticed a lot of tics and movements I guess we had just kind of gotten used to, and talked to him and could tell he is just the kind of kid that holds it all in.

Up to know ds12 was being treated by an MD group which also does alternative medicine. They run tons of tests, have him on abxs and supplements, and even though he is better overall, we have seen no great improvement in OCD symptoms, after spending hundres and hundreds of dollars on non-conventional tests and supplements/homeopathic meds.

So we are leaning toward going with Dr. Latimer's recommendations.

I am just afraid of any possible adverse effects of steroids, or that they might not work.

She put him on Augmentin 875mg twice daily plus Prednisone. She was a bit sceptical of all the tests our other doctor run, and basically said it's all part of the same thing and this course of treatment should take care of it all.

I am not sure how long my son has had this, we think since Feb, but maybe longer, and I feel I owe to him to do all we can to get him back to normal asap.

 

Well, I have to go, I think I just need some words of encouragement/reassurance that this is the right path...

 

Isabel

[Guest Angela Shaw]

We saw Dr. Latimer this afternoon. She was very nice, took all our symptoms, did the neuro evaluation and looked at all our labs. She is pretty confident high dose Augmentin and a month of steroids will bring great relief. I though my son was not so bad compared to other PANDAS kids, but she noticed a lot of tics and movements I guess we had just kind of gotten used to, and talked to him and could tell he is just the kind of kid that holds it all in.

Up to know ds12 was being treated by an MD group which also does alternative medicine. They run tons of tests, have him on abxs and supplements, and even though he is better overall, we have seen no great improvement in OCD symptoms, after spending hundres and hundreds of dollars on non-conventional tests and supplements/homeopathic meds.

So we are leaning toward going with Dr. Latimer's recommendations.

I am just afraid of any possible adverse effects of steroids, or that they might not work.

She put him on Augmentin 875mg twice daily plus Prednisone. She was a bit sceptical of all the tests our other doctor run, and basically said it's all part of the same thing and this course of treatment should take care of it all.

I am not sure how long my son has had this, we think since Feb, but maybe longer, and I feel I owe to him to do all we can to get him back to normal asap.

 

Well, I have to go, I think I just need some words of encouragement/reassurance that this is the right path...

 

Isabel

Isabel,

This all sounds so promising. Can I ask how much your son weighs? we go back to our family doctor tomorrow and I'd like to be able to tell her how much Augmentin other kids are on and their weight and length of time the prescription is for. Thanks.

Angela

[smartyjones]

So we are leaning toward going with Dr. Latimer's recommendations.

I feel I owe to him to do all we can to get him back to normal asap.

 

Well, I have to go, I think I just need some words of encouragement/reassurance that this is the right path...

 

Isabel

 

Isabel - i know it is so hard when you are trying to get it right especially after seeking help from so many people and when they have varying ideas about what is best. i think you've done a great job in seeking opinions,covering many bases and learning options. i would really encourage you to listen to your own inner voice and follow the treatment options and drs leading them that make the most sense to you as to what is best for your son and your family. through just knowing you in your posts, i have much confidence that you are a smart, dedicated mom!

 

i didn't feel our first naturopathic dr gave enough credence to the fact that the strep was the root cause of other presentations of problems. she wanted to work on healing his gut and letting his immune system heal his body. i just couldn't get on board with this b/c i thought we needed to address the strep stronger. through a few 'chance' conversations and some info on this board, i feel a good path of treatment has unfolded for us. trust yourself to place your trust in who you believe makes sense.

[memom]

Hi Isabel,

 

My daughter is 17yo and has just completed her 5 weeks of Prednisone prescribed by Dr. Latimer along with Augmentin 500mg bid. On the Prednisone we saw definate improvement to about 75% of normal. No bad side effects from the steroids except increased appetite and weight gain (which are reversing off the med). She had amazing clearing of her chronic sinusitis, allergies, asthma, eczema and chorea and improved but not gone OCD. She did have one day of severe leg pain that I think she caused by skipping a dose on a day that we were tapering anyway. She was unable to walk much for about 6-8 hour due to severe leg pain. Don't taper too quickly! Take the med as prescribed. I would do it again if we had to. Saw much improvement. Good luck.

 

Ellie

[matis_mom]

Isabel,

This all sounds so promising. Can I ask how much your son weighs? we go back to our family doctor tomorrow and I'd like to be able to tell her how much Augmentin other kids are on and their weight and length of time the prescription is for. Thanks.

Angela

Angela,

He weighs 77 lbs. and she put him on Amox/K Clav 875-125 twice daily, along with Prednisone 10mg 4/day for the first week, 3/day the second week, 2/day third week, 1/day fourth week. We have an appointment in a month to see how it works out. She also wants him to stay on probiotics.

 

Isabel

[matis_mom]

Hi Isabel,

 

My daughter is 17yo and has just completed her 5 weeks of Prednisone prescribed by Dr. Latimer along with Augmentin 500mg bid. On the Prednisone we saw definate improvement to about 75% of normal. No bad side effects from the steroids except increased appetite and weight gain (which are reversing off the med). She had amazing clearing of her chronic sinusitis, allergies, asthma, eczema and chorea and improved but not gone OCD. She did have one day of severe leg pain that I think she caused by skipping a dose on a day that we were tapering anyway. She was unable to walk much for about 6-8 hour due to severe leg pain. Don't taper too quickly! Take the med as prescribed. I would do it again if we had to. Saw much improvement. Good luck.

 

Ellie

Thanks Ellie, that's encouraging news!

I am just wondering about the dosage as it seems my son's prescription is a lot stronger (Amox/K Clav 875-125 twice daily for a 77-lb 12-yo)

But maybe it's due to the fact that he has been on other abxs for the last 4/5 months an they don't seem to be making a dent?

I have to look up the thread where people posted different dosages...

Isabel

[matis_mom]

Isabel - i know it is so hard when you are trying to get it right especially after seeking help from so many people and when they have varying ideas about what is best. i think you've done a great job in seeking opinions,covering many bases and learning options. i would really encourage you to listen to your own inner voice and follow the treatment options and drs leading them that make the most sense to you as to what is best for your son and your family. through just knowing you in your posts, i have much confidence that you are a smart, dedicated mom!

 

i didn't feel our first naturopathic dr gave enough credence to the fact that the strep was the root cause of other presentations of problems. she wanted to work on healing his gut and letting his immune system heal his body. i just couldn't get on board with this b/c i thought we needed to address the strep stronger. through a few 'chance' conversations and some info on this board, i feel a good path of treatment has unfolded for us. trust yourself to place your trust in who you believe makes sense.

Thanks for the encouragement! It's just a tough decision.... Dr. Zackrison's approach makes sense to a certain extent, but it seems they are not addressing the antibodies directly, which are the real culprit at the end of the day. Dr. Latimer is going straight for what she knows by experience works for a vast majority of kids. I wish I could do both!

[Kayanne]

Isabel,

 

I'm really glad that you had a good visit with Dr. Latimer. My daughter was also treated with 6 weeks of prednisone by Dr. Latimer, and I too would do it again.

 

Best of Luck.

 

~Karen

[CZL]

Hi Isabel

 

I am "new" here b/c I had few posts in the past, but I read this forum everyday and email with moms here many to seek help. My son has been suffering this for 7 years. Long history for short, I am doing my son Amoxicillin/Clav acid as well for about 3 weeks so far. just upped the dose to 2000mg/day last evening ( from 1800mg/day ). Some improvement has been showed up after I put him on Amoxicillin/Clav, but he is still on some other meds ( SSRIs and Psych med ) which there is one I started him at mean time with starting Amoxicillin. I am currently tappering those dose down slowly. I am not 100% sure yet to attribute the improvements to Amoxicillin/Clave acid until I wean his those med off. He is turning 13 next Jan and weight 170 lbs --- a lot of weight gain from those long term SSRI and psych med in the past years. He is taller than common as well.

I have a question, Did Dr. Latimer recommended a probiotic for you? Or you found some on your own for your ds? which kind, brand? Besides probiotic what else do you give your kid to help keeping the balance in the body? I do give my son probiotic which is available locally, last night and this morning, he had loose bowels, not very bad though. I am scared as I don't have doctor helping me, we are in Beijing, no doctor knows PANDAS. this forum and all moms and dads here are my doctor!

Appreciate your help,

Jack

[memom]

Hi Isabel,

 

Don't fret about that dosage. In fact, we may be going to that dose. As others have posted, the higher dose has been successful for so many other children when the lower dose was so-so. I am anticipating going up to the same dose if I don't see more improvement before I would consider more invasive and expensive therapies. This was the first time we were ever given antibiotics for treatment. I do agree with other posts about making sure he is on a good quality probiotic for the gut every day to help prevent diarrhea or other gi complications.

[matis_mom]

Hi Isabel

 

I am "new" here b/c I had few posts in the past, but I read this forum everyday and email with moms here many to seek help. My son has been suffering this for 7 years. Long history for short, I am doing my son Amoxicillin/Clav acid as well for about 3 weeks so far. just upped the dose to 2000mg/day last evening ( from 1800mg/day ). Some improvement has been showed up after I put him on Amoxicillin/Clav, but he is still on some other meds ( SSRIs and Psych med ) which there is one I started him at mean time with starting Amoxicillin. I am currently tappering those dose down slowly. I am not 100% sure yet to attribute the improvements to Amoxicillin/Clave acid until I wean his those med off. He is turning 13 next Jan and weight 170 lbs --- a lot of weight gain from those long term SSRI and psych med in the past years. He is taller than common as well.

I have a question, Did Dr. Latimer recommended a probiotic for you? Or you found some on your own for your ds? which kind, brand? Besides probiotic what else do you give your kid to help keeping the balance in the body? I do give my son probiotic which is available locally, last night and this morning, he had loose bowels, not very bad though. I am scared as I don't have doctor helping me, we are in Beijing, no doctor knows PANDAS. this forum and all moms and dads here are my doctor!

Appreciate your help,

Jack

Jack,

Wow, all the way in Beijing and with no doctor to guide you! I feel for you. About probiotics, she did not recommend any specific one, she just said to change them every now and then (instead of doing the same one every month). I don't know what you have available, but over here the good quality probiotics are kept refrigerated, so something you get off a shelf would not be your best choice. Also try eating yogurt and kefir, and other lacto-fermented products, you might have more of that available.

BTW, Dr. Latimer does phone consults if you ever need it. All the best!

Isabel

[matis_mom]

Hi Isabel,

 

Don't fret about that dosage. In fact, we may be going to that dose. As others have posted, the higher dose has been successful for so many other children when the lower dose was so-so. I am anticipating going up to the same dose if I don't see more improvement before I would consider more invasive and expensive therapies. This was the first time we were ever given antibiotics for treatment. I do agree with other posts about making sure he is on a good quality probiotic for the gut every day to help prevent diarrhea or other gi complications.

Thanks Memom,

I was looking at a thread where others posted their dosages and it seems the dose is strong, but I am happy to try it. We've waisted about 4 months already on other abxs!

Isabel

[Kayanne]

mati's mom,

 

Did Oil of Oregano ever come up in your conversation with Dr. L? Just curious because I know you were giving it to your son, and I was wondering if it reacted with antibiotics the way Olive Leaf Extract is sopposed to?

 

I really like all of the properties that it has, but am afraid it will make my dd6's pen vk less effective...just wondering if you covered that?

 

Thanks,

 

Karen

[matis_mom]

mati's mom,

 

Did Oil of Oregano ever come up in your conversation with Dr. L? Just curious because I know you were giving it to your son, and I was wondering if it reacted with antibiotics the way Olive Leaf Extract is sopposed to?

 

I really like all of the properties that it has, but am afraid it will make my dd6's pen vk less effective...just wondering if you covered that?

 

Thanks,

 

Karen

Karen,

I did not ask. I have not been given it to him for a while. Right now the plan of action is to just keep things simple. I will do the prescriptions, the probiotics, some vitamins, and maybe keep up the silver to ward off viruses. I am really counting on the Amox/K Clav to do the trick!

 

Isabel

[CZL]

Thanks Isabel,

 

the probiotic I have in hand is Biostime Probiotics (made in France) and the other one is CVS pharmacy Probiotic which I bought in the US. They are not kept refrigerated. I will search more about it.

Hope your ds will see improvement soon.

thanks,

Jack

 

[

Jack,

Wow, all the way in Beijing and with no doctor to guide you! I feel for you. About probiotics, she did not recommend any specific one, she just said to change them every now and then (instead of doing the same one every month). I don't know what you have available, but over here the good quality probiotics are kept refrigerated, so something you get off a shelf would not be your best choice. Also try eating yogurt and kefir, and other lacto-fermented products, you might have more of that available.

BTW, Dr. Latimer does phone consults if you ever need it. All the best!

Isabel