Holding Saliva -- OCD

[T_Mom]

I am curious if any other PANDAS/PITAND kids have had holding saliva in their mouths as a symptom during exacerbations?

 

In looking at the Serendip/brynmawr... website there were a number of posts by PANDAS parents talking about kids not swallowing their saliva. I almost fell off my chair.

 

This was one of the first symptoms our daughter had last summer, holding saliva in her mouth until it would just spill out...then full blown OCD set in. The holding of the saliva continued for about 4 weeks, at the worst she was soaked. (She developed other severe regressive manifestations of OCDish behaviors-but the saliva holding was one of the first things that was noticeable.)

[boychildsmom]

I'm falling out of my chair. During my son's last strep infection, I noticed him making a saliva slurp sound. My first thought was some funky new tic developing. He said no, it was like "the other stuff" (OCD). Then I remembered something similar for a short time as a child, lowering & raising thick spit out my mouth to see how far it could go and still return (yuck, sorry). My son got a kick out of hearing Mom's spit story. His noise was shortlived. If I had to guess, it might have been a compulsion.

[lss]

OMG! My son just recently started to do this as well! I have to constantly tell him to swallow his spit.

Lindal

[pmoreno]

yes, this was one of Gaby's things too a year and a half ago. It luckily only lasted about 4 days (as many of her odd behaviors would last for a while and then disappear to be replaced by others). It was kind of like she would complain that she had to spit and she went through towels and towels every day for several days. She would say that she hated it and couldn't stop spitting. This repeated one time with the second episode but not as severe and lasted only one day. Pat

[EAMom]

My dd went through a "spitting" phase spring 08. We think it was related to her weight obsession, anorexia nervosa. She was trying to "spit out a pound".

[P_Mom]

My older son also had a spitting tic with onset...all he said is.."geez, I am spitting a lot lately and I don't know why."

 

This resolved quickly with antibiotics.

[sandree]

My daughter just recently starting spitting. She also is spitting on things to sort of "decontaminate" them but she also seems to have a lot of spit/mucus.

 

We have sort of ruled out PANDAS as she tests negative but I still think her OCD is related to something - probably something viral. We tried 2 homeopathic remedies for viral issues - Vaccistat and Neurostat and she immediately got symptoms - headaches, nausea, eczema on her face, worse behaviorally. We only made it about two weeks and then she refused to take it. This week after stopping the drops has been a bit better for her. I do think they were helpful. But only confirms for me that her problems are viral or possibly bacterial.

 

Is there a doctor or a test who could confirm chronic virus? She has not shown anything on the strep testing we have done.

 

Sandy

[dcmom]

Sandy,

 

There is no test for pandas, so I assume that you mean she tests negative for strep, or has low titers. Did you do a culture (vs a quick test)?

There are others who will speak to this better than I, but many children have their first episode with strep, which may go undetected, and then react to other bacterias or viruses (or even stress). It is possible to culture too soon, or miss the spot the strep is hiding (if pharyngitis is not present). My daughter had a positive strep test (and all of the behavior issues), but normal titers.

 

I am not saying it is pandas, I am just suggesting there are SO many variables...

[sandree]

Yes - she had a throat culture which was negative. After reading the requirements for PANDAS over and over, I think I am just going to give up on it. I don't think we have a clear connection between strep and the OCD though I do think she has viral/bacterial issues. Maybe in the future, they will find that many neurological problems are connected to an impaired immune/methylation system.

 

Sandy

 

Sandy,

 

There is no test for pandas, so I assume that you mean she tests negative for strep, or has low titers. Did you do a culture (vs a quick test)?

There are others who will speak to this better than I, but many children have their first episode with strep, which may go undetected, and then react to other bacterias or viruses (or even stress). It is possible to culture too soon, or miss the spot the strep is hiding (if pharyngitis is not present). My daughter had a positive strep test (and all of the behavior issues), but normal titers.

 

I am not saying it is pandas, I am just suggesting there are SO many variables...

[T_Mom]

Sandy,

 

I am sorry, I know how frustrating this entire diagnosis-issue can be...

 

I guess I would ask if your daughter's "OCD" --or any tics, go away with long term (or even short term) antibiotics?

 

Full strength antibiotics. I am not advocating, but my daughter (when tested this past year) never has been positive for strep--

 

She did have sinusitis show up on an initial MRI during a bad exacerbation...treated with her with antibiotics and OCD goes away-- R C Dale in London has done work on Pitand issues. Also, if your child had strep previously, you may never see it, but you may only see the reactions that are later triggered by other illnesses. This has certainly been our experience--

 

Best.

TMom

[Darla]

My son who is eight has been dealing with many issues that fit some where in this forum, we were not sure if it was

PANDAS or not. The last time he had strep was xmas vaca which was a horrible experience between his rage, and movements, and ocd/anxiety. We did not put him on prohibitic antibiotics b/c of the side effects and decided to wait for another bout of strep. His symptoms subsided a few weeks after the xmas strep infection, however holding his spit was one of the major things he did. It lasted for a few weeks. He said he was afraid there was hair in there, he would also wash his face as a result. I never really give him anything other than his mulitvitamin, but i tried inositol b/c i read that it helps with ocd. It did. I bought the powder form (it's in the vitamin b family). I would mix it with a sweet drink. He also had to count before taking his vitamin,brush his teeth, give a kiss good night, lots of other ocdish things. It truly helped. He just got over another bout of strep and he has some movements, but not holding spit. He did wash his face out of the blue the other day, hoping it passes, but just in case im giving him a little inositol for a while. Also magnesium as i've read that antibiotics deplete magnesium and it attributes to anxiety and movements. So i figure im helping his sympathetic nervous system out by replenishing his magnesium levels. He was crying the other night at bed time saying he felt like he was going crazy and felt like he needed to push in his eyeball. ??? So i think the ocd is creaping back with anxiety and panic, im just trying to ease his discomfort. i feel so bad for these kids, they feel crazy at times. Hes a moody little bugger too, so im hoping that the magnesium calms him a bit so he doesn't get hyperactive which alwasy leads down a bad road. hope this helps.

 

 

I am curious if any other PANDAS/PITAND kids have had holding saliva in their mouths as a symptom during exacerbations?

 

In looking at the Serendip/brynmawr... website there were a number of posts by PANDAS parents talking about kids not swallowing their saliva. I almost fell off my chair.

 

This was one of the first symptoms our daughter had last summer, holding saliva in her mouth until it would just spill out...then full blown OCD set in. The holding of the saliva continued for about 4 weeks, at the worst she was soaked. (She developed other severe regressive manifestations of OCDish behaviors-but the saliva holding was one of the first things that was noticeable.)

[EAMom]

Sandy, T.mom...

 

Diana's son was the same way as T.mom's...negative throat culture. However, an MRI revlealed a sinus infection. Her son resonded to abs as well (azith. in his case.) You can't always get the positive culture (or titers--my dd had low Aso/anti-dnase b ) . That is why I feel that a trial (1-2 mo.) of abs (esp. Azith) is worthwhile in many of these kids.

 

Sometimes the strep "hides out" (eg. in the sinuses) where you cannot easily culture.