Help with my Son please

[Joshs_Mom]

Hi. I am a mother of a 6 year old boy that has had a bout with what my doctore believed was Pandas. It started in August 2009 with being diagnosed with Urinary Frequency Syndrome. We were told it would go away and it did after about a month or so. It came back and then it came back with "Confessions". He started obsessing about bad thoughts and things he had done. He had to confess everything. Then once he would tell you - we had to repeat it exactly the way he said it to show him we understood. To the point if we left the word a or the out we would have to start all over again. He broke out in a rash all over his body. Little tiny bumps. I took him to the doctors and my pediatrician brought information he had printed on PANDA. We tested him for strep- he was positive and we started antibiotics. Within two days he was perfect. He was back to his happy smart little self again. After the antibiotics were finished he started showing symptoms again. Immediately we took him to a weekend clinic and had him tested. He was positive again. After that course we went for a follow up and he was still positive but the symptoms were gone again. We found he was a carrier. So 3 weeks of strong antibiotics knocked the infection completely out. That was about 2 months ago. He has recently showed mild (nothing like it got before) and my husband demanded we get a strep test again. It was negative. This was about 1 1/2 weeks ago. My doctor now wants to rule out PANDA. I believe he is wrong. He is completely better after 2-3 days of antibiotics and thereafter for about 1-2 months. He has a sinus infection now and is now starting to mildly begin his confessions. Can he still have a negative strep test and have PANDA? Please help. My baby is tormented and is not himself. I don't know what to do for him. Does anyone know of someone in Maryland that specializes in PANDA and can help. I will travel to PA, DE any neighboring state if anyone has a great recommendation.

[Kayanne]

Hi. I am a mother of a 6 year old boy that has had a bout with what my doctore believed was Pandas. It started in August 2009 with being diagnosed with Urinary Frequency Syndrome. We were told it would go away and it did after about a month or so. It came back and then it came back with "Confessions". He started obsessing about bad thoughts and things he had done. He had to confess everything. Then once he would tell you - we had to repeat it exactly the way he said it to show him we understood. To the point if we left the word a or the out we would have to start all over again. He broke out in a rash all over his body. Little tiny bumps. I took him to the doctors and my pediatrician brought information he had printed on PANDA. We tested him for strep- he was positive and we started antibiotics. Within two days he was perfect. He was back to his happy smart little self again. After the antibiotics were finished he started showing symptoms again. Immediately we took him to a weekend clinic and had him tested. He was positive again. After that course we went for a follow up and he was still positive but the symptoms were gone again. We found he was a carrier. So 3 weeks of strong antibiotics knocked the infection completely out. That was about 2 months ago. He has recently showed mild (nothing like it got before) and my husband demanded we get a strep test again. It was negative. This was about 1 1/2 weeks ago. My doctor now wants to rule out PANDA. I believe he is wrong. He is completely better after 2-3 days of antibiotics and thereafter for about 1-2 months. He has a sinus infection now and is now starting to mildly begin his confessions. Can he still have a negative strep test and have PANDA? Please help. My baby is tormented and is not himself. I don't know what to do for him. Does anyone know of someone in Maryland that specializes in PANDA and can help. I will travel to PA, DE any neighboring state if anyone has a great recommendation.

 

Josh's Mom

 

Absolutely! because strep can be in many places where it is hard to get a specimen to perform the rapid or to culture....sinuses, adnoids, ear, vaginal, perianal, in the digestive tract....

 

Would you mind telling us which antibiotics he used, the dogages and his weight....

 

some antibiotics are found to be more efffective against strep

 

right now, I would cry, beg, plead, bring your husband with you to put your child back on the antibiotics...augmentin, zithromax, keflex, clindamycin (capsules)...these have good track records...

 

You are in luck, one of the best PANDAS doctors in the nation is in Bethesda, MD. Dr. Beth Latimer

 

some threads on this fourm that you should read:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

~Karen

[reactive]

Hi. I am a mother of a 6 year old boy that has had a bout with what my doctore believed was Pandas. It started in August 2009 with being diagnosed with Urinary Frequency Syndrome. We were told it would go away and it did after about a month or so. It came back and then it came back with "Confessions". He started obsessing about bad thoughts and things he had done. He had to confess everything. Then once he would tell you - we had to repeat it exactly the way he said it to show him we understood. To the point if we left the word a or the out we would have to start all over again. He broke out in a rash all over his body. Little tiny bumps. I took him to the doctors and my pediatrician brought information he had printed on PANDA. We tested him for strep- he was positive and we started antibiotics. Within two days he was perfect. He was back to his happy smart little self again. After the antibiotics were finished he started showing symptoms again. Immediately we took him to a weekend clinic and had him tested. He was positive again. After that course we went for a follow up and he was still positive but the symptoms were gone again. We found he was a carrier. So 3 weeks of strong antibiotics knocked the infection completely out. That was about 2 months ago. He has recently showed mild (nothing like it got before) and my husband demanded we get a strep test again. It was negative. This was about 1 1/2 weeks ago. My doctor now wants to rule out PANDA. I believe he is wrong. He is completely better after 2-3 days of antibiotics and thereafter for about 1-2 months. He has a sinus infection now and is now starting to mildly begin his confessions. Can he still have a negative strep test and have PANDA? Please help. My baby is tormented and is not himself. I don't know what to do for him. Does anyone know of someone in Maryland that specializes in PANDA and can help. I will travel to PA, DE any neighboring state if anyone has a great recommendation.

 

Josh's Mom

Hi Josh's mom...I am pretty new to this forum and there are many many more persons on here better versed in this than I am. But, I saw your message and wanted to reply asap. Please read as many of the prior posts on this forum as you can. Get on pandasnetwork.com and read all of that. Read any and all of Buster's information. You will note that there are three PANDAS experts they talk about here...Dr. K, Dr. T and Dr. L. Dr. L would be closest to where you live...or you could travel further or do a phone consult with one of the others. Reading more will give you an idea of which physician may be the best fit for you regardless of travel or distance.

 

For what it is worth, if I were you I would try to arrange to see the specialist asap instead of wasting any time. I feel if the word PANDAS is mentioned just get to one of them. We are now just getting set up to see Dr. K, but my 9 year old son has dealt with a lot of this since age 3 or 4. What a lot of wasted time!! We have dealt with many issues over the years and some of them were not covered by insurance (and I have great health coverage). I just recently got 2 bills, one for a $115 visit and the other for a $171 visit that was not covered...So I figure $350 to see Dr. K is nothing as at least this guy can tell me something!!

[thereishope]

.

Edited October 18, 2016 by vickie

[sf_mom]

Your son may have strep in his sinuses. What antibiotic is he on and how much does he weigh? If you can... culture his nose and test for strain. You are definitely having problems eradicating the strep (perhaps original infection) and it might call for IMMEDIATE higher dose antibiotics longer term. Augmentin and Azithromycin are two antibiotics used commonly by the parents on this forum. AND, test everyone in the house for strep.. rapid, cultures, ASO and Anti-DNAse-B.

 

-Wendy

[momaine]

Hi,He most certainly can have a negative strep test and still have PANDAS. See if your doctor will prescribe Augmentin or Zithromax as those seem to work best against strep. Sometimes strep can be in places on the body other than the throat. It can be on the skin, in the gut, vaginally for girls, in the adnoids or tonsils, etc. It certainly sounds like PANDAS to me, a mom who has a dd with PANDAS and who has spent hours reading these boards. Hang in there. You've caught it early and he will get better. Sometimes the kids need to be on antibiotics prophylactically. (as a preventative)

 

Angela

 

Hi. I am a mother of a 6 year old boy that has had a bout with what my doctore believed was Pandas. It started in August 2009 with being diagnosed with Urinary Frequency Syndrome. We were told it would go away and it did after about a month or so. It came back and then it came back with "Confessions". He started obsessing about bad thoughts and things he had done. He had to confess everything. Then once he would tell you - we had to repeat it exactly the way he said it to show him we understood. To the point if we left the word a or the out we would have to start all over again. He broke out in a rash all over his body. Little tiny bumps. I took him to the doctors and my pediatrician brought information he had printed on PANDA. We tested him for strep- he was positive and we started antibiotics. Within two days he was perfect. He was back to his happy smart little self again. After the antibiotics were finished he started showing symptoms again. Immediately we took him to a weekend clinic and had him tested. He was positive again. After that course we went for a follow up and he was still positive but the symptoms were gone again. We found he was a carrier. So 3 weeks of strong antibiotics knocked the infection completely out. That was about 2 months ago. He has recently showed mild (nothing like it got before) and my husband demanded we get a strep test again. It was negative. This was about 1 1/2 weeks ago. My doctor now wants to rule out PANDA. I believe he is wrong. He is completely better after 2-3 days of antibiotics and thereafter for about 1-2 months. He has a sinus infection now and is now starting to mildly begin his confessions. Can he still have a negative strep test and have PANDA? Please help. My baby is tormented and is not himself. I don't know what to do for him. Does anyone know of someone in Maryland that specializes in PANDA and can help. I will travel to PA, DE any neighboring state if anyone has a great recommendation.

 

Josh's Mom

[Joshs_Mom]

Thank you so much for your quick and VERY helpful responses. Being new to all of this - you all have given me direction and I am starting to feel like I am not alone. I am in tears right now... thank God I found this site. Please keep sending information and I will keep posting. THANK YOU THANK YOU!

[P_Mom]

Josh's Mom...

 

After PANDAS is in motion...you will see a milder flair of symptoms (as opposed to the big ones with strep) with ANY immune stressor....any illness allergies, vaccinations, etc.

[Joshs_Mom]

Josh's Mom...

 

After PANDAS is in motion...you will see a milder flair of symptoms (as opposed to the big ones with strep) with ANY immune stressor....any illness allergies, vaccinations, etc.

 

 

Wow so a simple cold or sinus infection could be causing this? sigh... I can't wait to get an appt and blood work up done.

[thereishope]

.

Edited October 18, 2016 by vickie

[Kayanne]

Josh's Mom...

 

After PANDAS is in motion...you will see a milder flair of symptoms (as opposed to the big ones with strep) with ANY immune stressor....any illness allergies, vaccinations, etc.

 

 

Wow so a simple cold or sinus infection could be causing this? sigh... I can't wait to get an appt and blood work up done.

Sinus infections could be strep

[EAMom]

From Swedo's first 50 cases paper http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf I added the bold :

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

 

Also, as others have said...strep can "hide out" in non-throat locations (eg sinuses).