antibiotics and decline

[Kay]

I am sorry if there is a discussion some place else on this, I have looked for a few days and I have been unable to find it. My daugther 19 was on augmetin for 28 days ( quick description of issues, anxiety, gi issues, onset over night with anxiety issues, been the conventional route, therapy etc, no help) found dr. k, got a perscription for the augmentin she felt very good regained energy etc. she has been off now for 1 week and slowly her energy is waning and a few things she hadn't thought of as Pandas and didn't realize she hadn't been doing them until she was off the augmentin came back. mostly sensory where she has to touch certain things...she thought it was just something she did. but now she sees she wasn't doing while on the augmetin and now again she is and anxiety seems to be come on fast and furious some days along with the no energy again. dr k wants her to see dr. lechman since she seems to be getting worse since off the augmentin. anyone out there seen dr. lechman (yale) know what he is about and what he offers and or have you had children backslide off the antibiotic? i guess i am confused why we aren't just going for more augmentin. any info would be helpful.

thanks.

[peglem]

I am sorry if there is a discussion some place else on this, I have looked for a few days and I have been unable to find it. My daugther 19 was on augmetin for 28 days ( quick description of issues, anxiety, gi issues, onset over night with anxiety issues, been the conventional route, therapy etc, no help) found dr. k, got a perscription for the augmentin she felt very good regained energy etc. she has been off now for 1 week and slowly her energy is waning and a few things she hadn't thought of as Pandas and didn't realize she hadn't been doing them until she was off the augmentin came back. mostly sensory where she has to touch certain things...she thought it was just something she did. but now she sees she wasn't doing while on the augmetin and now again she is and anxiety seems to be come on fast and furious some days along with the no energy again. dr k wants her to see dr. lechman since she seems to be getting worse since off the augmentin. anyone out there seen dr. lechman (yale) know what he is about and what he offers and or have you had children backslide off the antibiotic? i guess i am confused why we aren't just going for more augmentin. any info would be helpful.

thanks.

Yes, huge backsliding when going off abx here...I'm curious, too, why Dr. K is not putting her back on the abx. Does he think there is something else going on, other than PANDAS? The lack of energy doesn't sound like a PANDAS symptom. (but maybe others have seen that?) I'd sure ask Dr.K what he's thinking here.

[dut]

Hi- can't offer advice on treatment offered by Dr. Leckman or why Dr k would refer you to him but I did speak with him a couple of years back and he was very knowledgeable and SUPER nice. He was willing to talk to me for over an hour and responded to subsequent e-mails re our dd at no charge and felt as tho' he really understood and cared. Is it your dd's age that would cause Dr k to refer out to Dr leckman?

[Kay]

Hi- can't offer advice on treatment offered by Dr. Leckman or why Dr k would refer you to him but I did speak with him a couple of years back and he was very knowledgeable and SUPER nice. He was willing to talk to me for over an hour and responded to subsequent e-mails re our dd at no charge and felt as tho' he really understood and cared. Is it your dd's age that would cause Dr k to refer out to Dr leckman?

 

 

Not sure, we have emailed him back to get a little more info...just thought in the meantime I would do my own type of searching. thanks for your reply. It nice to know he is nice and will be helpful in all this.

[Kay]

I am sorry if there is a discussion some place else on this, I have looked for a few days and I have been unable to find it. My daugther 19 was on augmetin for 28 days ( quick description of issues, anxiety, gi issues, onset over night with anxiety issues, been the conventional route, therapy etc, no help) found dr. k, got a perscription for the augmentin she felt very good regained energy etc. she has been off now for 1 week and slowly her energy is waning and a few things she hadn't thought of as Pandas and didn't realize she hadn't been doing them until she was off the augmentin came back. mostly sensory where she has to touch certain things...she thought it was just something she did. but now she sees she wasn't doing while on the augmetin and now again she is and anxiety seems to be come on fast and furious some days along with the no energy again. dr k wants her to see dr. lechman since she seems to be getting worse since off the augmentin. anyone out there seen dr. lechman (yale) know what he is about and what he offers and or have you had children backslide off the antibiotic? i guess i am confused why we aren't just going for more augmentin. any info would be helpful.

thanks.

Yes, huge backsliding when going off abx here...I'm curious, too, why Dr. K is not putting her back on the abx. Does he think there is something else going on, other than PANDAS? The lack of energy doesn't sound like a PANDAS symptom. (but maybe others have seen that?) I'd sure ask Dr.K what he's thinking here.

 

for the older ones chronic fatigue does seem to be an issue. she fits the older kids description for all of it. we have emailed him back to see what he thinks we might accomplish there. so we will see, just doing my own research...once you saw the backslide was antibiotics again resumed? thanks for your reply.

[coco]

Hi- can't offer advice on treatment offered by Dr. Leckman or why Dr k would refer you to him but I did speak with him a couple of years back and he was very knowledgeable and SUPER nice. He was willing to talk to me for over an hour and responded to subsequent e-mails re our dd at no charge and felt as tho' he really understood and cared. Is it your dd's age that would cause Dr k to refer out to Dr leckman?

 

 

Not sure, we have emailed him back to get a little more info...just thought in the meantime I would do my own type of searching. thanks for your reply. It nice to know he is nice and will be helpful in all this.

Hi Kay, We saw Dr. Leckman at Yale over the summer and he was kind and compassionate...super advocate for pandas parents and an outstanding resource. He referred us to Dr. Bouboulis in Darien, Ct (immunologist) for subsequent treatment. I am sure Dr. Leckman will be able to point you in the right direction very quickly. Good luck!

[peglem]

for the older ones chronic fatigue does seem to be an issue. she fits the older kids description for all of it. we have emailed him back to see what he thinks we might accomplish there. so we will see, just doing my own research...once you saw the backslide was antibiotics again resumed? thanks for your reply.

 

Oh yes, they were resumed and at a higher dosage, with regained improvement.

[Kay]

Hi- can't offer advice on treatment offered by Dr. Leckman or why Dr k would refer you to him but I did speak with him a couple of years back and he was very knowledgeable and SUPER nice. He was willing to talk to me for over an hour and responded to subsequent e-mails re our dd at no charge and felt as tho' he really understood and cared. Is it your dd's age that would cause Dr k to refer out to Dr leckman?

 

 

Not sure, we have emailed him back to get a little more info...just thought in the meantime I would do my own type of searching. thanks for your reply. It nice to know he is nice and will be helpful in all this.

Hi Kay, We saw Dr. Leckman at Yale over the summer and he was kind and compassionate...super advocate for pandas parents and an outstanding resource. He referred us to Dr. Bouboulis in Darien, Ct (immunologist) for subsequent treatment. I am sure Dr. Leckman will be able to point you in the right direction very quickly. Good luck!

 

coco, thanks for your reply I feel a little bit at ease. I guess I was worried that we finally found an explanation for all this and when the augmentin made changes for the better with her it felt good to see my girl back again. The backslide scared me and I guess I had a knee jerk reaction to not being put back on the augmentin but now understand that this route is good. Thanks for posting. Are you in CT? I can see I will be learning about different parts of the state soon. Not too far from New Haven but if Darien is the next stop possibly I will be seeing new things! mapquest will become my new best friend. thanks again for your post. breathing easier today.

[Kay]

for the older ones chronic fatigue does seem to be an issue. she fits the older kids description for all of it. we have emailed him back to see what he thinks we might accomplish there. so we will see, just doing my own research...once you saw the backslide was antibiotics again resumed? thanks for your reply.

 

Oh yes, they were resumed and at a higher dosage, with regained improvement.

 

Great! good to know. I am just itchy about the changes and waiting to make appointments and such. Thanks for posting it all helps!