seeking advice & support - hopeful

[zabet]

Just joined this list after following a link w/info on probiotics - and some cautionary notes. I am in deep with my two wonderful boys and so hopeful that we can find a path to wellness for them. I am more and more convinced that PANDAS may be part of the puzzle - although there is much else going on as well. Both boys - ages 7 and 4.5 - have underlying neuromotor issues (low tone, indep. walking around 3, strabismus, apraxia of speech, sensory issues - very bright with autistic traits) These all as I can tell have been present since birth (took time to be believed by docs but there were early signs). Both boys also have an unbalanced translocation found by CMA testing - really little know about the area - but associated with motor and behavioral issues. My older son received a PDD-NOS diagnosis just before turning 6 - his primary issues are around anxiety, obsessive thinking, attention issues and social pragmatics. My younger son was diagnosed with a brain tumor last spring - we are very grateful he did beautifully with surgery and is recovering...but that is where my pandas questions start...

 

Last summer as he recovered from surgery we began to notice the onset of OCD type symptoms. It would be really intense and then by the time we got to see the doctor a couple of weeks later I'd think what was I so worried about as all seemed more normal. AT the same time he had strep back to back several times. Most times no complaint of sore throat but odd behavior, really red lips - sore mouth. He had some anxiety and what we thought was an occasional tic before surgery (maybe saw a handful total in his whole life). SO I started asking about PANDAS last summer fall - but doctors didn't seem to think it and given all else on out plates let it float. SO two weeks ago (after a series of three strep infections for the boys) my younger son had a sudden onset of pretty intense tics. Started when we were out for dinner and counted 50 or so before we were able to leave restaurant. Thought they might be seizures but eeg checked out clear. Did have something that appeared to be more seizure like sunday evening - odd fit of giggling hands in mouth - really out of it then exhausted/lethargic. That Monday did strep test as well as eeg - both clear. Tics continued all week - a bit less intense - until vomiting started Friday and something that again looked like a seizure followed by a fever. Ended up in the er again (because of vomiting and possible seizure w/no fever) so felt good about fever. Maybe the cause. Sat pm complained of sore teeth - sore tongue - something stuck in my throat. Sunday am strep positive again. SO here we are Thursday -- midway through ped's 10 day amox course. My son's PT said his balance and strength back to normal in therapy. School saw no tics yesterday - I saw maybe one. OCD behaviors decreased. I am very hopeful. Neuro who has been very helpful with our full range of issues wants to do just 10 day course and then see what happens. We have appt. w/Dr. Boubolis end of the month (made several months ago when I thought this might be an issue).

 

Older son was the one who also had me asking about PANDAS. He also has strep now for 4th time in a row since early dec. When he is on amox. he is SO much clearer and more focused - less obsessive thinking. Goes away several days after course finished. We noticed it - so did school and on last course out of the blue he said "look mom - its a whole new me!" We don't discuss any of this around him but he definitely felt it himself. Peds tried keflex for one course and didn't see benefits of that.

 

So here we are...know this isn't the only issue but think it is a big part of the swinging highs and lows I see with the guys. I am switching probiotics based on advice seen here. Continuing current amox course and keeping appt. w/Dr. Boubolis. Any other advice or things you wish you had known at the outset? QUestions to ask? Had been to a DAN doctor years ago for older son but PANDAS and lyme testing neg at that point. Also - any advice for good resources around tics/ocd/pandas for little ones? We are in CT/RI area and also see docs in Boston. Many thanks & sorry to go on so long. Glad to find such a good source of info. -Betsy

[KeithandElizabeth]

Hello:

 

Welcome to the forum. There are many great threads on this forum and I think that you can help your children. I would advise you to look over at the lyme forum because many families on this forum have discovered that lyme and/or mycoplasma have been an underlying infection. Some of the sickest children do not initially have positive lyme tests because lyme likes to live in the organs instead of the blood. Most good LLMD's will start a symptomatic child and specific antibiotics before doing a lyme test in order to bring the lyme out of hiding. I would especially recommend reading MichaelTampa's Klinghardt post on the lyme forum because Dr. Klinghardt discusses chronic infections and its role on development disorders, autism, and brain tumors in children.

 

We are here for you,

 

Elizabeth

Edited February 10, 2011 by KeithandElizabeth

[momofgirls]

Welcome to the forum. I think its great that you are going to see Dr Bouboulis. He will order a ton of lab work and will help guide you in your next steps. I also think its a great idea as keithandelizabeth suggested to browse over on the lyme board and definately read up. Can I ask where about do you live and how did you rule out lyme?There is a great post started by michaeltampa that includes a talk given by Dr Klinghardt. There is help for your boys and you've come to a good place.

 

 

Just joined this list after following a link w/info on probiotics - and some cautionary notes. I am in deep with my two wonderful boys and so hopeful that we can find a path to wellness for them. I am more and more convinced that PANDAS may be part of the puzzle - although there is much else going on as well. Both boys - ages 7 and 4.5 - have underlying neuromotor issues (low tone, indep. walking around 3, strabismus, apraxia of speech, sensory issues - very bright with autistic traits) These all as I can tell have been present since birth (took time to be believed by docs but there were early signs). Both boys also have an unbalanced translocation found by CMA testing - really little know about the area - but associated with motor and behavioral issues. My older son received a PDD-NOS diagnosis just before turning 6 - his primary issues are around anxiety, obsessive thinking, attention issues and social pragmatics. My younger son was diagnosed with a brain tumor last spring - we are very grateful he did beautifully with surgery and is recovering...but that is where my pandas questions start...

 

Last summer as he recovered from surgery we began to notice the onset of OCD type symptoms. It would be really intense and then by the time we got to see the doctor a couple of weeks later I'd think what was I so worried about as all seemed more normal. AT the same time he had strep back to back several times. Most times no complaint of sore throat but odd behavior, really red lips - sore mouth. He had some anxiety and what we thought was an occasional tic before surgery (maybe saw a handful total in his whole life). SO I started asking about PANDAS last summer fall - but doctors didn't seem to think it and given all else on out plates let it float. SO two weeks ago (after a series of three strep infections for the boys) my younger son had a sudden onset of pretty intense tics. Started when we were out for dinner and counted 50 or so before we were able to leave restaurant. Thought they might be seizures but eeg checked out clear. Did have something that appeared to be more seizure like sunday evening - odd fit of giggling hands in mouth - really out of it then exhausted/lethargic. That Monday did strep test as well as eeg - both clear. Tics continued all week - a bit less intense - until vomiting started Friday and something that again looked like a seizure followed by a fever. Ended up in the er again (because of vomiting and possible seizure w/no fever) so felt good about fever. Maybe the cause. Sat pm complained of sore teeth - sore tongue - something stuck in my throat. Sunday am strep positive again. SO here we are Thursday -- midway through ped's 10 day amox course. My son's PT said his balance and strength back to normal in therapy. School saw no tics yesterday - I saw maybe one. OCD behaviors decreased. I am very hopeful. Neuro who has been very helpful with our full range of issues wants to do just 10 day course and then see what happens. We have appt. w/Dr. Boubolis end of the month (made several months ago when I thought this might be an issue).

 

Older son was the one who also had me asking about PANDAS. He also has strep now for 4th time in a row since early dec. When he is on amox. he is SO much clearer and more focused - less obsessive thinking. Goes away several days after course finished. We noticed it - so did school and on last course out of the blue he said "look mom - its a whole new me!" We don't discuss any of this around him but he definitely felt it himself. Peds tried keflex for one course and didn't see benefits of that.

 

So here we are...know this isn't the only issue but think it is a big part of the swinging highs and lows I see with the guys. I am switching probiotics based on advice seen here. Continuing current amox course and keeping appt. w/Dr. Boubolis. Any other advice or things you wish you had known at the outset? QUestions to ask? Had been to a DAN doctor years ago for older son but PANDAS and lyme testing neg at that point. Also - any advice for good resources around tics/ocd/pandas for little ones? We are in CT/RI area and also see docs in Boston. Many thanks & sorry to go on so long. Glad to find such a good source of info. -Betsy

[zabet]

Thank you so much for your replies. I will read up on lyme....we live in CT in a very ticky area. Have removed deer ticks from both boys. Negative tests have come from bloodwork ordered periodically by pediatrician, neurologist and once by a DAN doc for older son. Will look into the brain tumor piece. Before we new my younger son had a tumor, I kept thinking lyme so had tested since balance issues and fatigue were showing. Strep came up first in my mind since it seems like there is such a close connection between episodes of strep and some of the symptoms. Will read up on the forums tonight after the kids get to bed. So glad to have found this resource. We also go back for an MRI every 3 mo. to check tumor not regrowing...next check next week. Looks like another tic free day w/amox. -Betsy

[momofgirls]

Betsy, I sent you a private message.

 

 

Thank you so much for your replies. I will read up on lyme....we live in CT in a very ticky area. Have removed deer ticks from both boys. Negative tests have come from bloodwork ordered periodically by pediatrician, neurologist and once by a DAN doc for older son. Will look into the brain tumor piece. Before we new my younger son had a tumor, I kept thinking lyme so had tested since balance issues and fatigue were showing. Strep came up first in my mind since it seems like there is such a close connection between episodes of strep and some of the symptoms. Will read up on the forums tonight after the kids get to bed. So glad to have found this resource. We also go back for an MRI every 3 mo. to check tumor not regrowing...next check next week. Looks like another tic free day w/amox. -Betsy