exasperation after tonsilectomy/adenoidectomy

[earnestfamily7]

We have been dealing with P.A.N.D.A.S. for past 4 years - We have seen our sons symptoms and the disorder wax and wane with illnesses. He shows symptoms when he gets an infection or is around people with infection - strep or other illness. Our pediatrician reluctantly gives hims antibitoics for the symptoms... He had a very good year and 1/2 taking antibiotics just a few times. We almost started to question whether or not he was miraculously "cured".

 

He had his tonsils/adenoids out in November and the symptoms exploded.... we saw them in recovery and by the time we got home from the hospital they were full blown - OCD checking behaviors "is it OK if I do "x".... "I did 'x'".... " I had a bad thought" - very emotional.... very distracted..... (some of the behaviors I chalked up to the surgery... but there were so many that screamed P.A.N.D.A.S..... It is BACK!!! He was on antibiotic for the surgery and we saw improvement within 3 days bt only about 85%..... The ENT kept him on antibiotic but we are holding steady with symptoms....

 

We went to see a neurologist on Friday - He didnt know much about the disorder - (dont you love it hen you educate the dr. on the disorder and then still need to pay the bill at the end of the day!) he wanted to continue to treat with antibiotic which I agree with but also wanted to give an antidepressant/antipsychotic for the OCD symptoms - to which I said no....

 

I asked about IVIG and he said it was reserved for severe cases that usually present in the ER.... so my question is what do I need to do to show this dr who knows little about the illness that it would be severe if he was not on the antibiotic for the last month!!!! At the end of the appointment he gave me a referral to an infectious disease doctor - we go on Monday.

 

I honestly can not believe how hard it is to find a doctor that knows about this illness and how to treat it! I know it is new but what I can not understand is wy they are so against the IVIG treatment.... my theory is that they are getting 'kick-backs" to continue prophylactic antibiotics and the anti-psychotic drugs!

 

It is time that we, as parents of P.A.N.D.A.S children, take a stand and DEMAND that our children get the care they need! I am tired explaining the illness to the drs and being told medicate medicate medicate!!!! I want a CURE!!!!

 

Thank you for this forum and to all the parents that post in search of answers!

[thereishope]

Others have seen issues a rise after t and a surgey. Not everyone, but some. However, I don't recall anyone saying it happened that fast. One theory someone suggested was that the anesthesia opens up the BBB. This makes sense to me since some others have issues after seeing the dentists and getting laughing gas. But this is just a theory. Another is that the child was exposed during surgery.

 

What antibiotics your child on? Also, you can try giving ibuprofen and see if that eases the symptoms for now. The Ibuporfen doesn't solve the root of the problem but works more like a temp bandaid. Still, for some, it offers relief and that is great.

[sf_mom]

I say skip all the nay-sayers or individuals that don't understand PANDAS and head straight to someone that dose know. You'll be relieved emotionally that you did and your child will be happy because they are feeling better. AND, then go back to those Dr's to educate hoping they treat some other child in the future.

 

Its so nice to talk with a Dr. that has had great success and knows how to treat you child based on experience.

 

-Wendy

[thereishope]

Here's an old thread about exacerbations following t and surgery you may be interested in reading

 

 

http://www.latitudes.org/forums/index.php?...ic=5488&hl=

[dcmom]

My daughter had a full blown pandas relapse post T&A. We used a month long steroid burst, and (at this point) permanent daily antibiotics (zithromax) to get her out of it.

 

Unfortunately, you need to get to a Dr who is knowledgeable and willing to treat pandas. Where do you live?

[peagreen]

Nitrous oxide used in surgery can cause a depletion of vit. B-12 which can cause behavioral changes. My son was a different child the day after his procedure. We had to increase his methyl b-12 injections to get him back.

 

Paula

[CSP]

Hi,

 

My son just had the T&A done almost 3 weeks ago. He increased in tics (vocals) around day 5 after the T&A. He has been doing very very well since last Sat. He has times when he is great for an hour where before he would tic every 2 to 3 seconds. He has a DX of TS.

 

My thought to you is my son has a bad yeast problem now because of all the ABX and is being treated for that. I was wondering if your son is having some issues with yeast too, and is reacting from that? Just a thought I would mention.

 

Sorry this is not going well, I hope this calms soon.

 

CP

[earnestfamily7]

Others have seen issues a rise after t and a surgey. Not everyone, but some. However, I don't recall anyone saying it happened that fast. One theory someone suggested was that the anesthesia opens up the BBB. This makes sense to me since some others have issues after seeing the dentists and getting laughing gas. But this is just a theory. Another is that the child was exposed during surgery.

 

What antibiotics your child on? Also, you can try giving ibuprofen and see if that eases the symptoms for now. The Ibuporfen doesn't solve the root of the problem but works more like a temp bandaid. Still, for some, it offers relief and that is great.

T

 

Thank you for the response! He is on amoxicillin - 400 mg - 1tsp 2x/day. I did not know about the ibuprofren use - I gave him a does as soon as I read your post!

[earnestfamily7]

We have been dealing with P.A.N.D.A.S. for past 4 years - We have seen our sons symptoms and the disorder wax and wane with illnesses. He shows symptoms when he gets an infection or is around people with infection - strep or other illness. Our pediatrician reluctantly gives hims antibitoics for the symptoms... He had a very good year and 1/2 taking antibiotics just a few times. We almost started to question whether or not he was miraculously "cured".

 

He had his tonsils/adenoids out in November and the symptoms exploded.... we saw them in recovery and by the time we got home from the hospital they were full blown - OCD checking behaviors "is it OK if I do "x".... "I did 'x'".... " I had a bad thought" - very emotional.... very distracted..... (some of the behaviors I chalked up to the surgery... but there were so many that screamed P.A.N.D.A.S..... It is BACK!!! He was on antibiotic for the surgery and we saw improvement within 3 days bt only about 85%..... The ENT kept him on antibiotic but we are holding steady with symptoms....

 

We went to see a neurologist on Friday - He didnt know much about the disorder - (dont you love it hen you educate the dr. on the disorder and then still need to pay the bill at the end of the day!) he wanted to continue to treat with antibiotic which I agree with but also wanted to give an antidepressant/antipsychotic for the OCD symptoms - to which I said no....

 

I asked about IVIG and he said it was reserved for severe cases that usually present in the ER.... so my question is what do I need to do to show this dr who knows little about the illness that it would be severe if he was not on the antibiotic for the last month!!!! At the end of the appointment he gave me a referral to an infectious disease doctor - we go on Monday.

 

I honestly can not believe how hard it is to find a doctor that knows about this illness and how to treat it! I know it is new but what I can not understand is wy they are so against the IVIG treatment.... my theory is that they are getting 'kick-backs" to continue prophylactic antibiotics and the anti-psychotic drugs!

 

It is time that we, as parents of P.A.N.D.A.S children, take a stand and DEMAND that our children get the care they need! I am tired explaining the illness to the drs and being told medicate medicate medicate!!!! I want a CURE!!!!

 

Thank you for this forum and to all the parents that post in search of answers!

 

 

We had our visit with the Infectious Disease Dr. at Akron Children's Hospital this morning. He ordered complete panels and wants to stay the antibiotic course for now.... He will contact us next week to review the results and come up with a long term treatment plan. Good news - Jordan's symptoms began to dissipate yesterday and this morning he showed no outward signs/symptoms... no asking - no checking - no bad toughts - WANTED to return to school! and actually opened his school books on his own to review for a test!!!

 

So far I am very happy with this Dr as much as one can be after visit - but he is willing to work with us - knows the disorder and understands the recommended treatments.... I will keep you posted as we go through the steps and on what the dr says next week.

Thanks for comments and support!

~steph

[earnestfamily7]

We had our visit with the Infectious Disease Dr. at Akron Children's Hospital this morning. He ordered complete panels and wants to stay the antibiotic course for now.... He will contact us next week to review the results and come up with a long term treatment plan. Good news - Jordan's symptoms began to dissipate yesterday and this morning he showed no outward signs/symptoms... no asking - no checking - no bad toughts - WANTED to return to school! and actually opened his school books on his own to review for a test!!!

 

So far I am very happy with this Dr as much as one can be after visit - but he is willing to work with us - knows the disorder and understands the recommended treatments.... I will keep you posted as we go through the steps and on what the dr says next week.

Thanks for comments and support!

~steph

[earnestfamily7]

We had our visit with the Infectious Disease Dr. at Akron Children's Hospital this morning. He ordered complete panels and wants to stay the antibiotic course for now.... He will contact us next week to review the results and come up with a long term treatment plan. Good news - Jordan's symptoms began to dissipate yesterday and this morning he showed no outward signs/symptoms... no asking - no checking - no bad toughts - WANTED to return to school! and actually opened his school books on his own to review for a test!!!

 

So far I am very happy with this Dr as much as one can be after visit - but he is willing to work with us - knows the disorder and understands the recommended treatments.... I will keep you posted as we go through the steps and on what the dr says next week.

Thanks for comments and support!

~steph

[earnestfamily7]

Hi,

 

My son just had the T&A done almost 3 weeks ago. He increased in tics (vocals) around day 5 after the T&A. He has been doing very very well since last Sat. He has times when he is great for an hour where before he would tic every 2 to 3 seconds. He has a DX of TS.

 

My thought to you is my son has a bad yeast problem now because of all the ABX and is being treated for that. I was wondering if your son is having some issues with yeast too, and is reacting from that? Just a thought I would mention.

 

Sorry this is not going well, I hope this calms soon.

 

CP

I am sorry I have not been on for some time -- he did seem to improve for a few days and then went back to the asking/checking... ow can I tell if he has a yeast problem? Thanks!