I am lost and need some serious advice - PDD NOS

[Topaz1968]

My 11 year old son has had the gamut of diagnosis's his whole life. It started with speech delays, and then lots of question marks from teachers. No one could ever put a finger on what was "wrong" with him. There was never a clear cut diagnosis until a few years ago. He started having tics in 1st grade and they continued off and on for over a year, so he was diagnosed with TS by a Neurologist. About a year later, he started to have Obsessive thoughts and other anxiety issues, along with hives. Not sure if the hives were ever related, but the OCD behavior was then diagnosed as Pandas from Dr. B in CT. He had blood work and it was confirmed by his results. He was put on Antibiotics and still takes them today.

 

Starting last year, in 4th grade, there were some observations done in school as he was still having some problems socially and a little bit academically. His grades were great, but he needed a lot of support. It carried over to this year, but the change in teachers was not helpful. We had an amazing teacher last year and a not so amazing teacher this year. After some more evaluations from the school - they told me that they felt he had PDD-NOS. I agreed to have it put on his IEP as a secondary diagnosis. I do want him to get the help he needs, but I am not sure how much I agree with the diagnosis, since I have not had any more testing done outside of school.

 

He does have a lot of social issues, and is extremely sensitive and full of anxiety. I do see some traits of the disorder, but since there seem to be so many things going on, once again, I can't get a clear cut answer. The pediatrician and the Pandas doctor don't necessarily agree with the diagnosis, but they don't see him that often.

 

Here is my dilemma. I have been reading so much about trying different diets, etc. I have also read about different medications, which we have tried a couple (tenex and clonazapem - both without success). But, my head is spinning from reading so many different approaches, I don't know where to start.

 

He sees the social worker at school a few times a week and he goes to OT outside of school every other week. The insurance will not pay for it, so that is all we can afford right now. I am trying to get another appt. with the neurologist to get some more advice, but I am not sure what else to do.

 

Should I start him on some Probiotics? I have some, just never gave them to him. Should I try something else? I am so confused right now, just need some advice from maybe someone in a similar situation with a child in the same age range. He knows that he is different but he does not know of any official "labels" as I don't want him to get a complex. He is going to middle school next year and I am mortified about him being teased, etc.

 

Any advice would be greatly appreciated - thanks

[Chemar]

Hi

did you intend for this to be in the Autism/Aspergers forum?

If not, I can move it to whichever forum you prefer.

[Topaz1968]

Yes, I did want it in this forum as I thought PDD-NOS is a form of Autism. If you think there is better thread for it, that is fine. Just not sure which one.

 

Thanks so much

Edited April 27, 2012 by Topaz1968

[TwoSocks]

I don't have any advice, since I need similar advice actually. However, I wanted to tell you that you aren't alone. My son, 6 and in first grade is similar. When I started reading your post I was thinking OMG he has undiagnosed PANDAS. But, luckily you found support in that area.

We were recently told to administer VSL 3 (probiotic) but since I found out there is strep in it, I haven't started it. I need to get a post together for the PANDAS board.

My son was diagnosed with PDD-NOS recently and I know he is on the autism spectrum because he has conversational & social problems. He is social, but, frequently it is odd. His level of anxiety is directly proportoinal to his PANDAS status.

It's so hard, the whole thing. Sometimes I just want to bury my head in the sand.

Hugs to you and your son.

[Ozimum]

We've had considerable success with a Biomed/DAN!(Defeat Autism Now!) dr who also diagnosed DS with PANDAS. A DAN! dr will check out symptoms and behaviours and test for Vitamin/mineral levels and food sensitivities etc and recommend supps/diet accordingly. Every child is different and it helps to have someone who has an integrative approach who has the knowledge and experience to sort what's going on with your child. Good luck!

Edited April 27, 2012 by Ozimum

[Topaz1968]

Thank you TwoSocks and Ozimum

 

Twosocks - I hope you find the info you need as well. Hugs to you and your son as I know exactly how you feel. I think because Pandas is such a new and sometimes controversial diagnosis, it is very hard to find concrete information about it. Still trying to solve the puzzle!!

 

Ozimum - I was thinking of trying to find a DAN doctor, but I was not sure exactly what they do, so I am glad you explained it to me. My son was tested for food allergies, but not found to have any. However, maybe there are some vitamin/mineral levels that are off.

 

I appreciate your time

[911RN]

My 11 year old son has had the gamut of diagnosis's his whole life. It started with speech delays, and then lots of question marks from teachers. No one could ever put a finger on what was "wrong" with him. There was never a clear cut diagnosis until a few years ago. He started having tics in 1st grade and they continued off and on for over a year, so he was diagnosed with TS by a Neurologist. About a year later, he started to have Obsessive thoughts and other anxiety issues, along with hives. Not sure if the hives were ever related, but the OCD behavior was then diagnosed as Pandas from Dr. B in CT. He had blood work and it was confirmed by his results. He was put on Antibiotics and still takes them today.

 

Starting last year, in 4th grade, there were some observations done in school as he was still having some problems socially and a little bit academically. His grades were great, but he needed a lot of support. It carried over to this year, but the change in teachers was not helpful. We had an amazing teacher last year and a not so amazing teacher this year. After some more evaluations from the school - they told me that they felt he had PDD-NOS. I agreed to have it put on his IEP as a secondary diagnosis. I do want him to get the help he needs, but I am not sure how much I agree with the diagnosis, since I have not had any more testing done outside of school.

 

He does have a lot of social issues, and is extremely sensitive and full of anxiety. I do see some traits of the disorder, but since there seem to be so many things going on, once again, I can't get a clear cut answer. The pediatrician and the Pandas doctor don't necessarily agree with the diagnosis, but they don't see him that often.

 

Here is my dilemma. I have been reading so much about trying different diets, etc. I have also read about different medications, which we have tried a couple (tenex and clonazapem - both without success). But, my head is spinning from reading so many different approaches, I don't know where to start.

 

He sees the social worker at school a few times a week and he goes to OT outside of school every other week. The insurance will not pay for it, so that is all we can afford right now. I am trying to get another appt. with the neurologist to get some more advice, but I am not sure what else to do.

 

Should I start him on some Probiotics? I have some, just never gave them to him. Should I try something else? I am so confused right now, just need some advice from maybe someone in a similar situation with a child in the same age range. He knows that he is different but he does not know of any official "labels" as I don't want him to get a complex. He is going to middle school next year and I am mortified about him being teased, etc.

 

Any advice would be greatly appreciated - thanks

 

MY DS11 has similar symptoms as yours. Speech issues, OCD, some mild anxiety, social issues, sensory issues, intermittent vocal and motor tics etc. He, too, is moving on to middle school next year. I have tried probiotics twice in the last year for trials (once for about 3 months then for about 1 month) and both times his ticcing got worse (probiotics that DID NOT contain Strep strains). Ticcing improved going off the probiotics. I made a direct cause and effect relationship (twice) thus I am not a big fan of probiotics for my child.

 

Your son does seem to have diagnosis all over the map? Personally, I think PDD, NOS is a junky diagnosis, however, I am a big believer in that the school can write down whatever they want to as long as it it helps my son get the services he needs. I have told them my DS!! has PPDFED- Purple Polka Dotted Flying Elephant Disease!!LOL:) Which is as good as what any of the high paid specialists have come up with. He's unique, he's one of a kind, they have never met another child like him...after 7 years, 100's of doctors, lots of testing, lots of conflicting opinions etc- I really just don't care what they call IT- whatever IT IS. They know he needs an IEP, he needs services and he gets it. His IEP is based on OHI. He never fit well into any of the common 'boxes'. They, too, said at age 6-7 they thought he was PDD, NOS but he was ADOS negative when tested- not on the cut off for Autism spectrum for any of the 6 cut off areas so they had to withdraw from that diagnosis.

 

Going to Neuro for guidance seems like a good idea. With prior history of TS- I'm guessing that this has not been decidedly a correct, lasting diagnosis?? What about something more generic like Tic disorder (which often includes OCD, anxiety etc).A neuropsychiatrist may be helpful in interpreting testing and forming a better diagnosis and treatment plan also?? They typically recommend without actually prescribing. My son knows he is different also--he does not seem to be too bothered about this. Remember, this is the only life they know. This is their reality. They have nothing to compare it to... to note a difference. I, too, am worried about move to middle school with teasing, bullying etc. But, move on he will and we'll take it one day at a time....just like we have done the last 7 years.

 

My son takes Lamictal-for previous abnormal EEG, although he has never had a seizure. This medication has proved useful for other parents with their children with PANDAS, anxiety etc. He also takes Prozac which helped the OCD behavior. He has been on it for nearly a year with no adverse effects. We have tried Intuniv in the past and Clonazepam without much success either. Prozac and Lamictal combo has been the best so far (for us). I have tried various supplements in past---none that have made a huge differences. Diets- he is so OCD about food choices that I have just not had the stomach to put he or myself through the torture. Although, I'm sure dietary improvements would make a difference.

 

Good luck with whatever you try and do.

[Topaz1968]

My 11 year old son has had the gamut of diagnosis's his whole life. It started with speech delays, and then lots of question marks from teachers. No one could ever put a finger on what was "wrong" with him. There was never a clear cut diagnosis until a few years ago. He started having tics in 1st grade and they continued off and on for over a year, so he was diagnosed with TS by a Neurologist. About a year later, he started to have Obsessive thoughts and other anxiety issues, along with hives. Not sure if the hives were ever related, but the OCD behavior was then diagnosed as Pandas from Dr. B in CT. He had blood work and it was confirmed by his results. He was put on Antibiotics and still takes them today.

 

Starting last year, in 4th grade, there were some observations done in school as he was still having some problems socially and a little bit academically. His grades were great, but he needed a lot of support. It carried over to this year, but the change in teachers was not helpful. We had an amazing teacher last year and a not so amazing teacher this year. After some more evaluations from the school - they told me that they felt he had PDD-NOS. I agreed to have it put on his IEP as a secondary diagnosis. I do want him to get the help he needs, but I am not sure how much I agree with the diagnosis, since I have not had any more testing done outside of school.

 

He does have a lot of social issues, and is extremely sensitive and full of anxiety. I do see some traits of the disorder, but since there seem to be so many things going on, once again, I can't get a clear cut answer. The pediatrician and the Pandas doctor don't necessarily agree with the diagnosis, but they don't see him that often.

 

Here is my dilemma. I have been reading so much about trying different diets, etc. I have also read about different medications, which we have tried a couple (tenex and clonazapem - both without success). But, my head is spinning from reading so many different approaches, I don't know where to start.

 

He sees the social worker at school a few times a week and he goes to OT outside of school every other week. The insurance will not pay for it, so that is all we can afford right now. I am trying to get another appt. with the neurologist to get some more advice, but I am not sure what else to do.

 

Should I start him on some Probiotics? I have some, just never gave them to him. Should I try something else? I am so confused right now, just need some advice from maybe someone in a similar situation with a child in the same age range. He knows that he is different but he does not know of any official "labels" as I don't want him to get a complex. He is going to middle school next year and I am mortified about him being teased, etc.

 

Any advice would be greatly appreciated - thanks

 

MY DS11 has similar symptoms as yours. Speech issues, OCD, some mild anxiety, social issues, sensory issues, intermittent vocal and motor tics etc. He, too, is moving on to middle school next year. I have tried probiotics twice in the last year for trials (once for about 3 months then for about 1 month) and both times his ticcing got worse (probiotics that DID NOT contain Strep strains). Ticcing improved going off the probiotics. I made a direct cause and effect relationship (twice) thus I am not a big fan of probiotics for my child.

 

Your son does seem to have diagnosis all over the map? Personally, I think PDD, NOS is a junky diagnosis, however, I am a big believer in that the school can write down whatever they want to as long as it it helps my son get the services he needs. I have told them my DS!! has PPDFED- Purple Polka Dotted Flying Elephant Disease!!LOL:) Which is as good as what any of the high paid specialists have come up with. He's unique, he's one of a kind, they have never met another child like him...after 7 years, 100's of doctors, lots of testing, lots of conflicting opinions etc- I really just don't care what they call IT- whatever IT IS. They know he needs an IEP, he needs services and he gets it. His IEP is based on OHI. He never fit well into any of the common 'boxes'. They, too, said at age 6-7 they thought he was PDD, NOS but he was ADOS negative when tested- not on the cut off for Autism spectrum for any of the 6 cut off areas so they had to withdraw from that diagnosis.

 

Going to Neuro for guidance seems like a good idea. With prior history of TS- I'm guessing that this has not been decidedly a correct, lasting diagnosis?? What about something more generic like Tic disorder (which often includes OCD, anxiety etc).A neuropsychiatrist may be helpful in interpreting testing and forming a better diagnosis and treatment plan also?? They typically recommend without actually prescribing. My son knows he is different also--he does not seem to be too bothered about this. Remember, this is the only life they know. This is their reality. They have nothing to compare it to... to note a difference. I, too, am worried about move to middle school with teasing, bullying etc. But, move on he will and we'll take it one day at a time....just like we have done the last 7 years.

 

My son takes Lamictal-for previous abnormal EEG, although he has never had a seizure. This medication has proved useful for other parents with their children with PANDAS, anxiety etc. He also takes Prozac which helped the OCD behavior. He has been on it for nearly a year with no adverse effects. We have tried Intuniv in the past and Clonazepam without much success either. Prozac and Lamictal combo has been the best so far (for us). I have tried various supplements in past---none that have made a huge differences. Diets- he is so OCD about food choices that I have just not had the stomach to put he or myself through the torture. Although, I'm sure dietary improvements would make a difference.

 

Good luck with whatever you try and do.

 

 

911RN - I love everything that you wrote - it fits my son to a "T" - I especially love the diagnosis of PPDFED - I think I will tell my school about that one I was thinking about Prozac for his anxiety and possible depression, that might be a next step for us. I found that certain meds made his tics worse, so I am wondering about the probiotics - it might have the same effect as it did for your son. I agree that PDD-NOS is a huge umbrella diagnosis. It is what they want to call the kids who they just can't figure out. My son's first listing on his IEP is also OHI, and the PDD is the 2nd one. I also agree that if it gets him the help he needs, I am fine with it. I have not told him any of this because the one thing he tells me all the time - "Mom, I am not Autistic". And, this is only from being around children he knows are Autistic. He is actually friends with some of them, and he did not even realize they had the disorder, so I am not sure he even completely understands. I think I am most worried about his anxiety and depression. If we can get that under control, I think that would get us at least 50-60% of the way to where we need to be. Thanks again

[MomWithOCDSon]

I will add another positive vote to 911RN's with respect to what lamictal has done for my PANDAS son who also has had previous diagnoses of PDD-NOS and Asperger's. His first behavior set was OCD, and while it remains so, the anxiety also seemed to drive a behavioral regression and communication problems that the psych, ped and therapist all looked at and, early on anyway, dropped one of those two diagnoses on his chart, along with the OCD.

 

Antibiotics did a lot for him in terms of bringing him out of the depths of all his behaviors, the PDD-NOS ones included. But he still had this perseverative, "blinders-on" sort of focus on things and some communication issues; mostly, he would repeat and repeat a phrase . . . sort of an elongated form of stuttering . . . before he could complete a sentence. And then, once complete, he might repeat that sentence again and again before moving on to the next thought. It was bizarre and present only for a couple of months in the "middle," I'd say, of the healing path we've been on.

 

He's been taking lamictal for almost a year now, and it was a turning point in every respect. Our psych said that it has been shown to be helpful for anxious kids who also have some other traits -- like cognitive inflexibility, communication issues, perseverative thinking -- emblematic of some ASDs. He flipped like a light switch within 3 or 4 days of his first lamictal doses. Would let things go in terms of thinking and focus. His speech patterns returned to normal. He "lighted up" all the way around and found his sense of humor again. After everything else we'd been through and tried, it was almost bizarrely "the right answer," finally.

 

They think lamictal, because it impacts sodium channels in the brain, may help protect the NMDA receptors and help modulate the impact of glutamate in the brain; Johns Hopkins has recently published some studies regarding the role of brain glutamate in autism. I do think the two are connected.

 

Good luck! Hang in there!

[TwoSocks]

How are you Topaz? Have you found any sucess with anything new?

We are status quo here, although we had an EEG this morning for possible absence seizures, so we are waiting for the results of that - and I was thinking, maybe lamactil will do something for my son as well?

I don't know.

Hope things are improving for you!