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Advice Please? Dr. T or Dr. K?


DsMom
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I need some advice here; we are so fortunate to have a wonderful PANDAS doc unbelievably here, in WA state, only an hour from our town that's trying everything in her 'bag of tricks' to arrest my DS's PANDAS symptoms which for the last 10 months has been primarily an un-ending 'itching' that he wakes up with, and goes to sleep with. It moves all over his body, goes from awful up to insane intensity and is probably excess brain energy discharging through nerves which he 'reads'as an itch. Of course it took us 4.5 months to find and then see her, so we are about 6 months in with her.

 

He's had 3 IVIg infusions; the first one was for naught, as he was positive for Strep during, but the second (8/28-29) only served to really throw him into a tailspin of super crazy, and itchier than ever. He was terrified to do the third in case it made him feel even worse, but he did it 10 days ago(9/26-27)and no miracles yet. He's slightly less agitated, and the jerking tics seem to have settled down....but no traction on the itching.

 

Nothing we've tried, and believe me he's been on 100 meds, has helped him at all. His last Prednisone trial actually made all his symptoms way, way worse once he was off it (NIMH PANDAS page cautions steroids for kids that have tics from PANDAS, but we hadn't known that B4 we tried it) so we are super scared to try that again, although the 3 previous times he's tried steroids (the first week, 2nd month and 5th month respectivly)he didn't have that reaction, but he also didn't get any relief from the itch while on them either.

 

Anyway, here's my quandry; we are, as every one is, desperate for some type of relief for our boy. He can't function at all really, literally hasn't gone to school since this monster fell out of the sky on him overnight last December 8th, so he just stays inside and plays video games or watches movies to forget the itch, or if he feels good enough leaves w/ me or Dad on errands, etc. but that's pretty rare. I can't work anymore of course, and he's becoming seriously depressed.

 

I am wondering if I should consult with Dr. T or Dr. K. I love our Dr here but maybe just to hear another's ideas and maybe, just maybe there is another 'trick in the bag'? It's beyond hard for us to just sit tight and pray that we see some relief fromt he IVIg for him in 3 weeks, or 10 weeks, or longer with no back up plan ready to go if we don't. And, if the IVIg doesn't get him relief what do we do next?

 

Can anyone recomend one Dr. over the other? I know they are both wonderful. Our Dr. has worked w/ Dr. L in the past but she doesn't do phone consults as I understand it.

 

BTW, has anyone else's child experienced nausea or flushing this far into post IVIG (10 days)? I think it't pretty unusual this far in, isn't it?

 

Thank you to anyone who actually made it through this post; I think I needed to just ramble a bit to get it out of me, thanks for understanding. I sure appreciate this community, it's priceless.

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I need some advice here; we are so fortunate to have a wonderful PANDAS doc unbelievably here, in WA state, only an hour from our town that's trying everything in her 'bag of tricks' to arrest my DS's PANDAS symptoms which for the last 10 months has been primarily an un-ending 'itching' that he wakes up with, and goes to sleep with. It moves all over his body, goes from awful up to insane intensity and is probably excess brain energy discharging through nerves which he 'reads'as an itch. Of course it took us 4.5 months to find and then see her, so we are about 6 months in with her.

 

He's had 3 IVIg infusions; the first one was for naught, as he was positive for Strep during, but the second (8/28-29) only served to really throw him into a tailspin of super crazy, and itchier than ever. He was terrified to do the third in case it made him feel even worse, but he did it 10 days ago(9/26-27)and no miracles yet. He's slightly less agitated, and the jerking tics seem to have settled down....but no traction on the itching.

 

Nothing we've tried, and believe me he's been on 100 meds, has helped him at all. His last Prednisone trial actually made all his symptoms way, way worse once he was off it (NIMH PANDAS page cautions steroids for kids that have tics from PANDAS, but we hadn't known that B4 we tried it) so we are super scared to try that again, although the 3 previous times he's tried steroids (the first week, 2nd month and 5th month respectivly)he didn't have that reaction, but he also didn't get any relief from the itch while on them either.

 

Anyway, here's my quandry; we are, as every one is, desperate for some type of relief for our boy. He can't function at all really, literally hasn't gone to school since this monster fell out of the sky on him overnight last December 8th, so he just stays inside and plays video games or watches movies to forget the itch, or if he feels good enough leaves w/ me or Dad on errands, etc. but that's pretty rare. I can't work anymore of course, and he's becoming seriously depressed.

 

I am wondering if I should consult with Dr. T or Dr. K. I love our Dr here but maybe just to hear another's ideas and maybe, just maybe there is another 'trick in the bag'? It's beyond hard for us to just sit tight and pray that we see some relief fromt he IVIg for him in 3 weeks, or 10 weeks, or longer with no back up plan ready to go if we don't. And, if the IVIg doesn't get him relief what do we do next?

 

Can anyone recomend one Dr. over the other? I know they are both wonderful. Our Dr. has worked w/ Dr. L in the past but she doesn't do phone consults as I understand it.

 

BTW, has anyone else's child experienced nausea or flushing this far into post IVIG (10 days)? I think it't pretty unusual this far in, isn't it?

 

Thank you to anyone who actually made it through this post; I think I needed to just ramble a bit to get it out of me, thanks for understanding. I sure appreciate this community, it's priceless.

 

 

You have a lot of questions, so I'm going to try to answer them one at a time:

 

1) Your primary question is about Dr. K or Dr. T. IMHO (and I've worked with Dr. K, Dr T, Dr. L, Dr. B, and more), they really all do primarily the same types of treatment (abx, IVIG, PEX occasionally) it sounds like, that you've already tried. I really don't think you're going to get much help that is different from either of them.

 

2) That being said, I would be looking to see if there are other infections going on. I know we talk a lot about lyme and co-infections, but it does present in some pretty interesting ways. My DS used to get these horrendous shocks in all parts of his body, and it would make him scream and drop to the floor (sometimes felt like a sword was being stuck into him or an electric shock.) I finally found out that was a symptom of lyme, and sure enough he has lyme, bartonella, babesia, and erlichicosis.

 

3) You also asked about flushing and constant nausea. My DS gets both of these with strep, so I'm wondering if you haven't gotten rid of the strep. You mentioned ASO titers at 800? Are these current numbers? If so, maybe it's not responding to oral abx. DS has had IV abx, but then got sick again, and now we have been doing bicillin injections weekly (it's been 9 months now). So, I'm wondering if doing IV abx or weekly bicillin injections might be the way to go for chronic strep. But, that being said, I really believe that you should be looking for other infections, too, because since the immune system is affected, your child is probably not just dealing with only one infection.

 

4) Then, you should also see if your child is able to get rid of toxins. Check for MTHFR gene mutation, and if so, it is pretty easily treated with methylated B vitamins and folate.

 

5) On the same note, check vitamin levels, such as B12, and D (I've read that vitamin deficiencies can cause itching, and even read that possibly too much vitamin D can cause it. Also, what about zinc

 

6) Your child might also have developed a bad yeast infection with all the abx he's been on (probiotics are great, but doesn't always avoid the yeast buildup) Many of our kids are on taking nystatin or diflucan. Are you seeing any eczema?

 

7) Then, someone recently told me about not eating certain types of foods

 

8) Finally, another idea, made be...is the itching possibly seizure activity? Since you mentioned lamictal, that can be used for mood and for seizures.

 

So, here are some ideas to look into. Good luck.

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Forgive me if I have asked this before, as I think I remember responding to your post awhile back. Have you ruled out other infections? Lyme, co-infections, Mycoplasma, viruses, etc?

 

Even if you are not dealing with Lyme, a Lyme-literate doc (LLMD) could be a good resource. LLMD's are often good at finding hidden infections.

 

Parasites commonly cause itching. I don't have much else to offer, other than my daughter dealt with extreme bouts of itchiness and once we addressed intestinal parasites, the symptom abated.

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Hi Ds Mom. I think all of them are so great and I am so grateful for them, but I found Dr. L's approach of High Dose IVIG's every 4 weeks for 6 months to be the most effective for my son who suffered from severe PANDAS. I think you are right, she doesn't do phone consults. I remember that wait for the IVIG to "kick in". IVIG's made my son MUCH worse, but eventually they worked. I think the PANDAS system responds to IVIG in the same way it responds to strep or other infections entering the body. Eventually, IVIG wins. DS also needed long term Augmentin and 5 weeks of intensive ERP treatment at the OCD Institute. I know it is very, very difficult right now but try not to get discouraged. PANDAS kids do get better. You will persevere.

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My daughter only had one IVIG with Dr. K. Her behaviors would improve and then regress until about 8 weeks post IVIG and then we started to see continual growth. We are almost at the 6 month mark post IVIG and she is doing great. It was a very anxious time for us waiting to see if she would improve and heartbreaking when she would regress. With that being said it might be worth the time and money to do a phone consult with Dr. K even if it is only to ease your mind a bit. He has really seen it all.

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TPotter hit many of the issues I'd also recommend looking at. And I agree with her - given your lack of success with prednisone and IVIG, I'm not sure these other doctors will be able to offer much beyond what you have locally. Not putting them down. Just looking at it from a cost/benefit analysis.

 

Like others have said, I think it's time to consider other sources of infection and nutritional issues. In addition to testing for a MTHFR genetic mutation, there's another gene HLA-DR, that has big implications for how well your body detoxes. You might also give some serious investigation into mold. Mold can cause serious allergic as well as neurological issues. I had mold growing inside my washing machine and it was making me itch all. It also gave me a chronic dry cough and tickle in my throat. For more information on mold, go to www.survivingmold.com. On the site, there's a list of blood tests you can do to see if inflammation markers are high and if things point to mold as a possible trigger.

 

Have you tried antihistamines? Quercetin is a natural antihistamine that blocks not only the histamine receptors but also calms the mast cells that are releasing histamine. So that's something else to look into (tho I've just learned that about 15% of people with african or Mediterranean backgrounds may have trouble with quercetin so if this is your child's heritage, it's something to be aware of).

 

If you like this doctor, I'd stick with her. Or you can look for an integrative doctor, an osteopath or a DAN (defeat autism now) doctor who look at a variety of triggers.

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I need some advice here; we are so fortunate to have a wonderful PANDAS doc unbelievably here, in WA state, only an hour from our town that's trying everything in her 'bag of tricks' to arrest my DS's PANDAS symptoms which for the last 10 months has been primarily an un-ending 'itching' that he wakes up with, and goes to sleep with. It moves all over his body, goes from awful up to insane intensity and is probably excess brain energy discharging through nerves which he 'reads'as an itch. Of course it took us 4.5 months to find and then see her, so we are about 6 months in with her.

 

He's had 3 IVIg infusions; the first one was for naught, as he was positive for Strep during, but the second (8/28-29) only served to really throw him into a tailspin of super crazy, and itchier than ever. He was terrified to do the third in case it made him feel even worse, but he did it 10 days ago(9/26-27)and no miracles yet. He's slightly less agitated, and the jerking tics seem to have settled down....but no traction on the itching.

 

Nothing we've tried, and believe me he's been on 100 meds, has helped him at all. His last Prednisone trial actually made all his symptoms way, way worse once he was off it (NIMH PANDAS page cautions steroids for kids that have tics from PANDAS, but we hadn't known that B4 we tried it) so we are super scared to try that again, although the 3 previous times he's tried steroids (the first week, 2nd month and 5th month respectivly)he didn't have that reaction, but he also didn't get any relief from the itch while on them either.

 

Anyway, here's my quandry; we are, as every one is, desperate for some type of relief for our boy. He can't function at all really, literally hasn't gone to school since this monster fell out of the sky on him overnight last December 8th, so he just stays inside and plays video games or watches movies to forget the itch, or if he feels good enough leaves w/ me or Dad on errands, etc. but that's pretty rare. I can't work anymore of course, and he's becoming seriously depressed.

 

I am wondering if I should consult with Dr. T or Dr. K. I love our Dr here but maybe just to hear another's ideas and maybe, just maybe there is another 'trick in the bag'? It's beyond hard for us to just sit tight and pray that we see some relief fromt he IVIg for him in 3 weeks, or 10 weeks, or longer with no back up plan ready to go if we don't. And, if the IVIg doesn't get him relief what do we do next?

 

Can anyone recomend one Dr. over the other? I know they are both wonderful. Our Dr. has worked w/ Dr. L in the past but she doesn't do phone consults as I understand it.

 

BTW, has anyone else's child experienced nausea or flushing this far into post IVIG (10 days)? I think it't pretty unusual this far in, isn't it?

 

Thank you to anyone who actually made it through this post; I think I needed to just ramble a bit to get it out of me, thanks for understanding. I sure appreciate this community, it's priceless.

 

 

You have a lot of questions, so I'm going to try to answer them one at a time:

 

1) Your primary question is about Dr. K or Dr. T. IMHO (and I've worked with Dr. K, Dr T, Dr. L, Dr. B, and more), they really all do primarily the same types of treatment (abx, IVIG, PEX occasionally) it sounds like, that you've already tried. I really don't think you're going to get much help that is different from either of them.

 

2) That being said, I would be looking to see if there are other infections going on. I know we talk a lot about lyme and co-infections, but it does present in some pretty interesting ways. My DS used to get these horrendous shocks in all parts of his body, and it would make him scream and drop to the floor (sometimes felt like a sword was being stuck into him or an electric shock.) I finally found out that was a symptom of lyme, and sure enough he has lyme, bartonella, babesia, and erlichicosis.

 

3) You also asked about flushing and constant nausea. My DS gets both of these with strep, so I'm wondering if you haven't gotten rid of the strep. You mentioned ASO titers at 800? Are these current numbers? If so, maybe it's not responding to oral abx. DS has had IV abx, but then got sick again, and now we have been doing bicillin injections weekly (it's been 9 months now). So, I'm wondering if doing IV abx or weekly bicillin injections might be the way to go for chronic strep. But, that being said, I really believe that you should be looking for other infections, too, because since the immune system is affected, your child is probably not just dealing with only one infection.

 

4) Then, you should also see if your child is able to get rid of toxins. Check for MTHFR gene mutation, and if so, it is pretty easily treated with methylated B vitamins and folate.

 

5) On the same note, check vitamin levels, such as B12, and D (I've read that vitamin deficiencies can cause itching, and even read that possibly too much vitamin D can cause it. Also, what about zinc

 

6) Your child might also have developed a bad yeast infection with all the abx he's been on (probiotics are great, but doesn't always avoid the yeast buildup) Many of our kids are on taking nystatin or diflucan. Are you seeing any eczema?

 

7) Then, someone recently told me about not eating certain types of foods

 

8) Finally, another idea, made be...is the itching possibly seizure activity? Since you mentioned lamictal, that can be used for mood and for seizures.

 

So, here are some ideas to look into. Good luck.

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Hi - have you treated for yeast. We are with the same fabulous WA doctor, too for dd and ds. Ds gets the all over body itching that has come and gone. He is far worse at night.

 

I can't say 100% that it's yeast but so far we think yeast or possibly removing GMOs from his diet which is no easy thing as GMOs are everywhere but his best remission was when we treated for yeast and were doing our best to get GMOs out. It also coincided with a holiday to Oregon so a bit of confuing input going on.

 

The itching has returned recently. I am going to ask the doc if we can try yeast treatment again. And only after that will we get back on the GMO wagon fully so that I can see what really works rather than muddying the waters....

 

Hope you sort it out. Good luck..

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Wow, you already got some great advice from the other moms and I would follow up with that if I were you, but I wanted to add my own experience with yeast. When my 3rd baby was just born it hurt to nurse on one side, and soon became unbearable. I had no other symptoms of yeast. I had not been on antibiotics. Within 2 days it was so excruciating that I had to go on fluconazole for 2 weeks for mastitis. But as soon as I went off then, the symptoms started to return. A nipple itch, and it was slightly red. Then pain with nursing. I had to be on fluconazole for 4 more weeks. Everytime I tried stopping it, the symptoms returned. We treated the baby, too, and it didn't help. After a few months I was finally able to get off it, but I had to take a Critical Care probiotic from Whole Foods every day. If I missed a day, symptoms would start to return. I'm looking into this as part of my dd's treatment, and Dr. T does prescribe high-dose antifungals as empirical therapy. FYI I know some kids take nystatin but there is alot of resistant candida to nystatin. I guess it's another avenue to look into. Good luck to you

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I need some advice here; we are so fortunate to have a wonderful PANDAS doc unbelievably here, in WA state, only an hour from our town that's trying everything in her 'bag of tricks' to arrest my DS's PANDAS symptoms which for the last 10 months has been primarily an un-ending 'itching' that he wakes up with, and goes to sleep with. It moves all over his body, goes from awful up to insane intensity and is probably excess brain energy discharging through nerves which he 'reads'as an itch. Of course it took us 4.5 months to find and then see her, so we are about 6 months in with her.

 

He's had 3 IVIg infusions; the first one was for naught, as he was positive for Strep during, but the second (8/28-29) only served to really throw him into a tailspin of super crazy, and itchier than ever. He was terrified to do the third in case it made him feel even worse, but he did it 10 days ago(9/26-27)and no miracles yet. He's slightly less agitated, and the jerking tics seem to have settled down....but no traction on the itching.

 

Nothing we've tried, and believe me he's been on 100 meds, has helped him at all. His last Prednisone trial actually made all his symptoms way, way worse once he was off it (NIMH PANDAS page cautions steroids for kids that have tics from PANDAS, but we hadn't known that B4 we tried it) so we are super scared to try that again, although the 3 previous times he's tried steroids (the first week, 2nd month and 5th month respectivly)he didn't have that reaction, but he also didn't get any relief from the itch while on them either.

 

Anyway, here's my quandry; we are, as every one is, desperate for some type of relief for our boy. He can't function at all really, literally hasn't gone to school since this monster fell out of the sky on him overnight last December 8th, so he just stays inside and plays video games or watches movies to forget the itch, or if he feels good enough leaves w/ me or Dad on errands, etc. but that's pretty rare. I can't work anymore of course, and he's becoming seriously depressed.

 

I am wondering if I should consult with Dr. T or Dr. K. I love our Dr here but maybe just to hear another's ideas and maybe, just maybe there is another 'trick in the bag'? It's beyond hard for us to just sit tight and pray that we see some relief fromt he IVIg for him in 3 weeks, or 10 weeks, or longer with no back up plan ready to go if we don't. And, if the IVIg doesn't get him relief what do we do next?

 

Can anyone recomend one Dr. over the other? I know they are both wonderful. Our Dr. has worked w/ Dr. L in the past but she doesn't do phone consults as I understand it.

 

BTW, has anyone else's child experienced nausea or flushing this far into post IVIG (10 days)? I think it't pretty unusual this far in, isn't it?

 

Thank you to anyone who actually made it through this post; I think I needed to just ramble a bit to get it out of me, thanks for understanding. I sure appreciate this community, it's priceless.

 

 

You have a lot of questions, so I'm going to try to answer them one at a time:

 

1) Your primary question is about Dr. K or Dr. T. IMHO (and I've worked with Dr. K, Dr T, Dr. L, Dr. B, and more), they really all do primarily the same types of treatment (abx, IVIG, PEX occasionally) it sounds like, that you've already tried. I really don't think you're going to get much help that is different from either of them.

 

2) That being said, I would be looking to see if there are other infections going on. I know we talk a lot about lyme and co-infections, but it does present in some pretty interesting ways. My DS used to get these horrendous shocks in all parts of his body, and it would make him scream and drop to the floor (sometimes felt like a sword was being stuck into him or an electric shock.) I finally found out that was a symptom of lyme, and sure enough he has lyme, bartonella, babesia, and erlichicosis.

 

3) You also asked about flushing and constant nausea. My DS gets both of these with strep, so I'm wondering if you haven't gotten rid of the strep. You mentioned ASO titers at 800? Are these current numbers? If so, maybe it's not responding to oral abx. DS has had IV abx, but then got sick again, and now we have been doing bicillin injections weekly (it's been 9 months now). So, I'm wondering if doing IV abx or weekly bicillin injections might be the way to go for chronic strep. But, that being said, I really believe that you should be looking for other infections, too, because since the immune system is affected, your child is probably not just dealing with only one infection.

 

4) Then, you should also see if your child is able to get rid of toxins. Check for MTHFR gene mutation, and if so, it is pretty easily treated with methylated B vitamins and folate.

 

5) On the same note, check vitamin levels, such as B12, and D (I've read that vitamin deficiencies can cause itching, and even read that possibly too much vitamin D can cause it. Also, what about zinc

 

6) Your child might also have developed a bad yeast infection with all the abx he's been on (probiotics are great, but doesn't always avoid the yeast buildup) Many of our kids are on taking nystatin or diflucan. Are you seeing any eczema?

 

7) Then, someone recently told me about not eating certain types of foods

 

8) Finally, another idea, made be...is the itching possibly seizure activity? Since you mentioned lamictal, that can be used for mood and for seizures.

 

So, here are some ideas to look into. Good luck.

 

OMgosh so many good ideas here; but another question for you - how did you get to the ABX via IV? Was your DS still testing pos for Strep but no traction w/ oral ABX> my DS is testing neg to Strep now for 2 months straight...could he still have Strep, I think yes.

 

And you bring up a great point: the flush and naus can be Strep symptoms still. Sigh. Oh, he definately has a yeast infection now after 5 straight months on heavy doses of abx, no excema, but he had a GI culture done to identiy the parasite (supposedly it's a 'who cares' parasite) and the yeast came back high. Not causing the itching though, it's neuro, I'm certain of that. We have gone down the co-infections route to no avail so far. We see a LLMD next week who our current Dr. referred us too. DS has had 2 Lyme tests, both neg, and our CA doc said now he's had IVIg he will test pos to Lyme and the others because of the antibodies he's been given, so we can't trust those tests now. But DS had a suspicious bite a year ago that did get target shaped. The pediatrician just said spider bite and I could see the puncture hole. Seattle Childrens Hosp poopooed any ideas we had of Lyme and later we came to find out that our admitting Dr suggested PANDAS on the intake forms, but they just blew us off and it took me another 3 months to get the diagnosis after I figured it out. His B's are ok, his D is super low, so I was high-dosing, but after reading other ACN blogs I've almost stopped it altogther, his zinc is way, way low so we suplementing that. going to check out the MTHFR, and he's been basically on such a elimination diet all he ate was rice and water for 10 + days then added chix and pears. Nothing. Now w/ the stupid arsenic in rice so much (and his levels are, yep, high) no more rice for him. Honestly. Ok, really I thank you SO much for all the wise words, really wonderful.

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Hi Ds Mom. I think all of them are so great and I am so grateful for them, but I found Dr. L's approach of High Dose IVIG's every 4 weeks for 6 months to be the most effective for my son who suffered from severe PANDAS. I think you are right, she doesn't do phone consults. I remember that wait for the IVIG to "kick in". IVIG's made my son MUCH worse, but eventually they worked. I think the PANDAS system responds to IVIG in the same way it responds to strep or other infections entering the body. Eventually, IVIG wins. DS also needed long term Augmentin and 5 weeks of intensive ERP treatment at the OCD Institute. I know it is very, very difficult right now but try not to get discouraged. PANDAS kids do get better. You will persevere.

Thank you so much, just reading that your son was accutely impacted (I'm so, so sorry) too but has made it through to the other side is so encouraging. Did every one of the IVIGs make your son get worse in his symptoms? Was it an up and down or just all down? My DS doesn't want to do them because he feels to rotten after them (itchier and nuttier mentally) although this last one was the best so I think I can get him in again with out too much fuss. It is SO hard to just 'wait' for the IVIG to kick in - especially when my DS doesn't think he's ever going to get better. Thank you so much for sharing your story, its very helpful to me knowing others have walked where I walk now.

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Wow, you already got some great advice from the other moms and I would follow up with that if I were you, but I wanted to add my own experience with yeast. When my 3rd baby was just born it hurt to nurse on one side, and soon became unbearable. I had no other symptoms of yeast. I had not been on antibiotics. Within 2 days it was so excruciating that I had to go on fluconazole for 2 weeks for mastitis. But as soon as I went off then, the symptoms started to return. A nipple itch, and it was slightly red. Then pain with nursing. I had to be on fluconazole for 4 more weeks. Everytime I tried stopping it, the symptoms returned. We treated the baby, too, and it didn't help. After a few months I was finally able to get off it, but I had to take a Critical Care probiotic from Whole Foods every day. If I missed a day, symptoms would start to return. I'm looking into this as part of my dd's treatment, and Dr. T does prescribe high-dose antifungals as empirical therapy. FYI I know some kids take nystatin but there is alot of resistant candida to nystatin. I guess it's another avenue to look into. Good luck to you

Thank you so much for the info, don't know Nystatin only Fluconazole....he's on double dose HCL child probiotics, but I think I am going to even go heavier than that due to the yeast.

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Hi - have you treated for yeast. We are with the same fabulous WA doctor, too for dd and ds. Ds gets the all over body itching that has come and gone. He is far worse at night.

 

I can't say 100% that it's yeast but so far we think yeast or possibly removing GMOs from his diet which is no easy thing as GMOs are everywhere but his best remission was when we treated for yeast and were doing our best to get GMOs out. It also coincided with a holiday to Oregon so a bit of confuing input going on.

 

The itching has returned recently. I am going to ask the doc if we can try yeast treatment again. And only after that will we get back on the GMO wagon fully so that I can see what really works rather than muddying the waters....

 

Hope you sort it out. Good luck..

 

We haven't treated yeast...yet. Its a new one for us. I have heard that when the yeast is dying it can really cause itching! That would be beyond terrible if he got itchier as we treat, he will literally go insane if he gets any worse. What happened, if anything, to your DS when he treated the yeast? My DS does seem to get worse itching as the day goes on, but we think it's due to his tireing out and not being able to disconnect from it as well as he can after he's well rested. How did Dr. treat, w/ Fluconazole? We see her tomorrow, will definately be a topic we hit.

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Hi - have you treated for yeast. We are with the same fabulous WA doctor, too for dd and ds. Ds gets the all over body itching that has come and gone. He is far worse at night.

 

I can't say 100% that it's yeast but so far we think yeast or possibly removing GMOs from his diet which is no easy thing as GMOs are everywhere but his best remission was when we treated for yeast and were doing our best to get GMOs out. It also coincided with a holiday to Oregon so a bit of confuing input going on.

 

The itching has returned recently. I am going to ask the doc if we can try yeast treatment again. And only after that will we get back on the GMO wagon fully so that I can see what really works rather than muddying the waters....

 

Hope you sort it out. Good luck..

 

We haven't treated yeast...yet. Its a new one for us. I have heard that when the yeast is dying it can really cause itching! That would be beyond terrible if he got itchier as we treat, he will literally go insane if he gets any worse. What happened, if anything, to your DS when he treated the yeast? My DS does seem to get worse itching as the day goes on, but we think it's due to his tireing out and not being able to disconnect from it as well as he can after he's well rested. How did Dr. treat, w/ Fluconazole? We see her tomorrow, will definately be a topic we hit.

Yes, fluconazole

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Yep we used diflucan and florastor HMF/pharmax probiotics and as much fermented type foods as he'd take. Our itching didn't get worse but day 2/3 he was super low, flu kind of and behaviour definitely tanked some until about day 11/12. We are also there today so we may cross paths! going to also ask for more diflucan :)

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