Regression ?

[Topaz1968]

My son is 10 and his maturity level is more like a child who is 7 or 8. This does usually happen more over the summer, but I thought as he got older, maybe it would be better. He was diagnosed with TS and Pandas last year during the summer. He has seen Dr. B and has been on and off ABX for over a year now. I am having a hard time giving him ABX now because he does not like the large pill or the liquid, so I am going to contact the Dr. to see if we can come in and start him on a different med. But, I am not sure if the regression is from the Pandas or not.

 

He had an episode a few weeks ago that led me to believe he had some sort of infection because of his OCD and angry outbursts. They were out of control, so I started him back on the ABX.

 

He was on Clonazepam from the Neurologist to see if that would help his anxiety, but it did not. I am tempted to start him on a mood stabilizer, depending on what Dr. B suggests.

 

Anyway, back to the regression. He starts to play with toys that he played with in first grade and also starts to have fantasies that things are real, when he knows they are not. Then, he gets upset when he can't have something right away - like a costume, so he can pretend to be a character.

 

He is going into 5th grade and is already getting upset about going back to school. All he wants to do is play with his toys,etc. It is not something a 10 year old usually does.

 

I am worried about the school year and I am hoping Dr. B can help with an additional med.

 

I was wondering if anyone else has gone through something similar.

 

I should add that he has a lot of fears - thunderstorms, dark, sleeping alone, etc.

 

Thanks

[eljomom]

I wish I had some advice for you...I struggle to decipher what is "normal" for a child (aren't they all "abnormal" to some degree sometimes?), and what is part of pandas. Some of what you describe could be "normal" for a 10 year old BOY. Or it could not be.

 

I am interested in your diagnosis of TS AND Pandas. Who diagnosed that? I was led to believe that the TS symptoms we are seeing (tics, some ocd, etc...) are from PANDAS. At the same time, they aren't going away, and it's been over a year, so in some sense, it is also TS.

 

Did the antibiotics ever help? Did Dr. B recommend IVIG?

[nicklemama]

Regression was a big part of my DS7's PANDAS symptoms. Most of his regressive behavior went away on abx. We found the most improvement after IVIG. OCD is more prominent in my DS during exacerbation but he did develop tics about a yr after the major episode and before his diagnosis.

 

My DS was put on lamictal, which is primarily an antiseizure med that has mood stabilizing and anti anxiety properties. It really helped w/ anger and agression before his diagnosis but it did nothing for the regressive behaviors. I would really hesitate before going the mood stabilizing route. These psych meds don't always work well in PANDAS kids.

 

I'd try to get to the bottom of any infection and try and get him in long term abx before I'd go the psych med route. We didn't know our DS had PANDAS when he was put on lamictal. We are currently weaning him off lamictal. Its not horrible but its certainly not been a smooth road this past week since we started the tapering.

[Topaz1968]

So far, the doctor has not recommended IVIG, and I am not sure I want to go that route unless absolutely necessary. My son is deathly afraid of needles and I have heard about side effects and that it may not always work. Hopefully, changing his meds will help. My Neurologist diagnosed the TS, and then I went to Dr. B who diagnosed with Pandas. The Neurologist does not agree that the Pandas is causing the tics. I am not sure it is either. I do think it causes the OCD for sure. It is so difficult to distinguish what is causing what symptom.

 

I agree with not putting him on a mood stabilizer unless I need to, but I have not heard of lamictal. Is it used for tics as well? I think I just want to make sure he is not going to have major meltdowns during the school year, like he did at the end of last year. I need to make sure I meet with his teacher at the beginning of the year to fill them in on what went on over the summer.

 

He has a 504 plan, but it may need to be updated a bit.

 

Thanks for all the advice.

 

Elijomom - the antibiotic did work for the OCD and some of the tics, but the tics never really went away 100% and they have gotten worse over the last few months. The OCD seems to be what flares up the most. I still do not know about the regression - you could be right that it is just his personality. He is an only child and does not have a lot of friends he plays with on a regular basis.

[911RN]

 

I agree with not putting him on a mood stabilizer unless I need to, but I have not heard of lamictal. Is it used for tics as well? I think I just want to make sure he is not going to have major meltdowns during the school year, like he did at the end of last year. I need to make sure I meet with his teacher at the beginning of the year to fill them in on what went on over the summer.

 

The OCD seems to be what flares up the most. I still do not know about the regression - you could be right that it is just his personality. He is an only child and does not have a lot of friends he plays with on a regular basis.

 

 

My son is on Lamictal- no, it does not help with tics. My son has developed severe motor and vocal tics (following Strep) while taking Lamictal. He is tic free at present following 90 days of Azithro 500 mg in the Spring. Lamictal was prescribed for abnormal EEG but it has great mood modulating properties. Glutamate blocker. It does help with anxiety, fears, meltdowns and immature behaviors (to some extent). My son, too, is 11. He is actually talking about starting school in a somewhat positive manner for the first time EVER that I can recall. We started Prozac 9 weeks ago and I have been pleasantly surprised at results. For fears, anxiety and OCD behavior. SSRI's tend to target anxiety, fears, OCD behaviors better than Lamictal. Lamictal and Prozac are the only 2 prescripton meds my son is on with exception of a multivitamin, low dose Vit B6 and Vit D3.

 

I have used Inositol/choline combo in the past for tics with success. I have also used Motrin routinely twice a day for a week or two to calm things down. My son also acts younger than his peers with few common interests. He loves cartoons. Not toys.

 

Good luck with whatever you and Dr B decide.

[eljomom]

So topaz....did a pandas doc agree with the TS AND pandas diagnosis? Can it be both??

 

 

So far, the doctor has not recommended IVIG, and I am not sure I want to go that route unless absolutely necessary. My son is deathly afraid of needles and I have heard about side effects and that it may not always work. Hopefully, changing his meds will help. My Neurologist diagnosed the TS, and then I went to Dr. B who diagnosed with Pandas. The Neurologist does not agree that the Pandas is causing the tics. I am not sure it is either. I do think it causes the OCD for sure. It is so difficult to distinguish what is causing what symptom.

 

I agree with not putting him on a mood stabilizer unless I need to, but I have not heard of lamictal. Is it used for tics as well? I think I just want to make sure he is not going to have major meltdowns during the school year, like he did at the end of last year. I need to make sure I meet with his teacher at the beginning of the year to fill them in on what went on over the summer.

 

He has a 504 plan, but it may need to be updated a bit.

 

Thanks for all the advice.

 

Elijomom - the antibiotic did work for the OCD and some of the tics, but the tics never really went away 100% and they have gotten worse over the last few months. The OCD seems to be what flares up the most. I still do not know about the regression - you could be right that it is just his personality. He is an only child and does not have a lot of friends he plays with on a regular basis.

[Topaz1968]

The Pandas doctor does not agree that it is TS. He thinks it is just Pandas. But I think if it was, the tics would have gone away by now. The Neurologist says that Pandas is not the cause of the tics. I don't know who or what to believe. I just know that my son is not better and I need to keep trying to find what is going to work for him. It is difficult and I am sure we still have a long road ahead, but I just want him to be happy. Believe it or not, the tics do not bother him, it is the anger episodes that bother him more than anything. The Neurologist says that most kids with TS get better after adolescence. I am hoping that is the case with my son. I know the Pandas can be ongoing but I believe that is more manageable than the TS.

[jka021979]

My son is 10 and his maturity level is more like a child who is 7 or 8. This does usually happen more over the summer, but I thought as he got older, maybe it would be better. He was diagnosed with TS and Pandas last year during the summer. He has seen Dr. B and has been on and off ABX for over a year now. I am having a hard time giving him ABX now because he does not like the large pill or the liquid, so I am going to contact the Dr. to see if we can come in and start him on a different med. But, I am not sure if the regression is from the Pandas or not.

 

He had an episode a few weeks ago that led me to believe he had some sort of infection because of his OCD and angry outbursts. They were out of control, so I started him back on the ABX.

 

He was on Clonazepam from the Neurologist to see if that would help his anxiety, but it did not. I am tempted to start him on a mood stabilizer, depending on what Dr. B suggests.

 

Anyway, back to the regression. He starts to play with toys that he played with in first grade and also starts to have fantasies that things are real, when he knows they are not. Then, he gets upset when he can't have something right away - like a costume, so he can pretend to be a character.

 

He is going into 5th grade and is already getting upset about going back to school. All he wants to do is play with his toys,etc. It is not something a 10 year old usually does.

 

I am worried about the school year and I am hoping Dr. B can help with an additional med.

 

I was wondering if anyone else has gone through something similar.

 

I should add that he has a lot of fears - thunderstorms, dark, sleeping alone, etc.

 

Thanks

[jka021979]

Iam a parent of an 8 year old boy. I have been dealing with behavioral issues of all sorts with him since he wad a toddler. Ranging from bathroom accidents, 1 and 2 nuymerous times of the day, defiant behavior, refusing to shower/bathe, anxiety and ocd, and most recently anxiety separation and age regression. Motor Tics of all kind being seen as well.

 

Just this past week I noticed that my son is wanting to do the types of things he did when he was around the ages 3-5. Examples: jumping on the bed, spinning in a chair, watching Disney cartoons, eating the foods that he liked when he was 3, calling me mommy, and talking like a baby, etc. After testing positive for strep, and abnormalities in the blood, this Psychiatrist suggested get him treated for PANDAS...it all makes sense

[butterflymom]

=

Edited October 7, 2015 by tampicc