new and confused?

[oceanperiwinkle]

Hello! I am new to the board and will try to be brief with my questions/situation.

 

I have an almost 7 yr old daughter who started with "symptoms" (hoarding, dressing issues, extreme fears) at 3 yrs old shortly after starting preschool. She had strep twice during that year. I brought the idea of PANDAS up to my pediatrician but was shot down and so she was not tested.

 

Since then, every year, she has struggled with periods of OCD-like behaviors (fixation on breathing, frequent urination, fixation on getting her clothes/seatbelt/shoes just right). The behaviors vary and really only flare up once a year for a period of about a month or two. My husband and I kept thinking it might be PANDAS because her flare ups seemed to be around the times when she was also sick. However, rapid strep tests showed no strep so we didn't push for blood work.

 

Then about 3 weeks ago, she started with a tic (clearing of the throat and some uncontrollable noises-sort of like humming). I asked her to stop as this was a new behavior for her and seemed to come out of nowhere but she said she couldn't. It got pretty bad (although controlled somewhat at school) and was coupled with her feeling as though she couldn't get a deep enough breath. Then yesterday, she broke out in a rash which was from Fifth Disease. I read that Fifth Disease can stay be in your system 3 weeks before the rash appears. It was then I had an A-HA moment and thought maybe her OCD was related to viruses in addition to or instead of strep.

 

I am just starting to read about PITANDS. Some other info about my daughter: no learning disabilities-tested as gifted, becomes surly/moody when dealing with her flare ups otherwise happy and outgoing, brief stint with OT for sensory integration disorder to help deal with clothing thing although I am convinced it is more OCD vs. SID, pediatrician is of no help.

 

Of course, I have a million questions but a few are:

Is there a test for PITANDS?

 

Where should I start with all of this? New pediatrician? Psychiatrist? Neurologist? We are in GA.

 

Can someone have PANDAS and have rapid strep tests be negative?

 

Does this sound like OCD/TS not related to PANDAS or PITANDS to anyone?

 

Thanks for any input you may have. This seems like a wonderful site and I am so glad I found it!

[CSP]

HI and welcome OP,

 

I can't answer all your Qs, but I do think you should get a new Ped. I changed this year and I love my son's Dr. He has an Intergrative Dr. too. But I was very happy to get a Ped who was willing to do the IgG test and I only had to pay for the co-pay not the $200 (office visit) I would have had to pay for his Intergrative Dr. to do the same test. The only thing I found the Neuro good for was giving me DX of TS, that helped when I needed to address school. Otherwise all he wanted to do was drug him up.

 

Have you tried fish oil? High in EPA could help her.

 

Read as much as you can here you might answer some of your Qs just from reading.

 

Good luck,

C.P.

[Chemar]

Hi and welcome

 

rapid strep testing isnt an accurate dx for PANDAS. Only strep antibody titre testing can really give better indication

 

here is one of many many threads here on PANDAS testing and other PANDAS info

http://www.latitudes.org/forums/index.php?showtopic=1053

 

if you do searches here for PANDAS PITANDS you will get lots more

 

microbial infection seems to be very much a factor in a lot of neurological illness IMHO

[Greyhound]

and was coupled with her feeling as though she couldn't get a deep enough breath.

I've heard that this can be a symptom of magnesium deficiency. I don't know how true that is.

Source: http://www.healthy.net/asp/templates/artic...icle&ID=541

[oceanperiwinkle]

Thank you all for your information. Curiously my husband and his sister suffer from the "can't take a deep enough breath" thing. I will look into the Magnesium deficiency. I am such a Newbie when it comes to supplements and the like.

 

Its all so much to sort out ....I guess what I need to do now is find a doc who can help me find out if my daughter has OCD/TS which is aggravated by viruses or if the viruses bring on these behaviors.

[Chemar]

Hi again

 

magnesium deficiency is something many represented here seem to have. It convincingly appears to be so for those who have Tourette Syndrome and some of the other tic disorders, that show improvement with magnesium supplements ( and for many also epsom salts tubs & creams--magnesium sulfate)

 

 

 

re the OCD symptoms your dd is displaying...there are supplements that can be helpful like inositol, methionine or the samE version of it, and 5HTP or the tryptophan intself. All increase serotonin, which is what seems to be one of the underlying deficiencies with OCD, depression, some anxiety disorders etc. They should NOT be taken with meds that increase serotonin!! and only taken with each other under guidance. Serotonin spiking is something one wants to avoid as it is dangerous!

 

sorry to fly by with such quick posts but I am on a heavy work schedule plus caregiving sick hubby so kinda

 

hope you find the info you need here...dont forget the handy "search" button top right...you can do quick searches or more advanced ones to look for more specific topics or member posts on them.

 

talk later! bye

[dut]

Hello

 

I'm new here too and trying to get used to the idea of a daughter with PANDAS.. so don't know much but did wonder if you had a positive on the Fifth's disease.. it couldn't be a scarlet fever rash from strep? dunno just a thought..

[kim]

oceanperiwinkle,

 

Thank you for posting.

 

I know you're new to the forum, and I hope that I don't confuse the heck out of you, but within 5 minutes of reading about fifth disease, I was sitting here shaking my head, thinking "here it is again." I certainly don't have all of this figured out, but I think there is some important stuff here. I don't know what all of this means, by a long shot. There are only a few words here that I was really looking at. It appears that my boys have an problem with something that catalyses GlcNAc to the cell surface. There is another substance too, but we'll skip that, until you see if you can digest some of this. Boy, I'm afraid people are going to start hating to see my name pop up on their thread, but I can't help but get the feeling that we have work to do here (on this forum) and I need help!

 

First read this article

http://www.newscientist.com/channel/health...=mg19426074.500

 

Previous studies suggested that glucosamine, a dietary supplement commonly taken by people with osteoarthritis, has some immunosuppressive effects. This led Michael Demetriou and colleagues at the University of California, Irvine, to investigate a similar but more potent compound called N-acetylglucosamine (GlcNAc)

 

 

Ok, I googled fifth disease and saw where it is human parvo virus.

 

This is just a heading from the search, didn't open the article

 

Human Parvovirus B19 Infection: Autoimmune Disease Trigger Human Parvovirus B19 has been linked to a number of different autoimmune diseases, including vasculitis and connective tissue disorders.

 

Then I saw this one

 

http://www.wadsworth.org/databank/b19virus.htm

 

The most common manifestation of human parvovirus B19 infections is erythema infectiosm ("Fifth Disease"). This is characterized by mild symptoms, fever (in some patients) and a red rash on the face ("slapped cheek").

 

and

 

Erythema is redness of the skin caused by capillary congestion.

 

Then this

 

http://www.jtrauma.com/pt/re/jtrauma/abstr...#33;8091!-1

 

Results: Thromboelastogram data show that poly-N-acetyl glucosamine fibers (p-GlcNAc) significantly reduced the R time in platelet-poor plasma, PRP, and PRP supplemented with red blood cells. Poly-N-acetyl glucosamine fibers increased, but not significantly, Annexin V and factor X binding to platelets, platelet microparticles, and red blood cell Annexin V binding. Poly-N-acetyl glucosamine fibers increased the production of thromboxane B2 by PRP.

 

Conclusion: Poly-N-acetyl glucosamine slurry activates platelets.

 

and this

 

 

http://glycob.oxfordjournals.org/cgi/conte...ract/15/11/1067

 

The bisecting N-acetylglucosamine (GlcNAc) structure, formed through catalysis by UDP-N-acetylglucosamine : ß-D-mannoside ß-1,4-N-acetylglucosaminyltansferase III (GnT-III), is responsible for a variety of biological functions.

 

Can you (or anyone) spend some time figuring out what the role of GlcNac is that is talked about in the last two articles? It may take you week or a day, it may take an hour of googling words, don't know, but it could be important, not only to your daughter but other's as well.

 

Again, I'm sorry for throwing this at you periwinkle. I know you are probably upset by what's happening with your daughter anyway and the last thing you need is to look at all these words that make no sense to you, but if you stick with it and read other posts here, it just might start to.

[oceanperiwinkle]

Hello

 

I'm new here too and trying to get used to the idea of a daughter with PANDAS.. so don't know much but did wonder if you had a positive on the Fifth's disease.. it couldn't be a scarlet fever rash from strep? dunno just a thought..

 

 

I am assuming it was fifth disease because other children in her class had it or at least their moms thought they had it (?). BTW..my daughter's tic has REALLY subsided since breaking out in the rash. I believe when they get the rash this indicates that the virus is leaving the system.

[oceanperiwinkle]

oceanperiwinkle,

 

Thank you for posting.

 

I know you're new to the forum, and I hope that I don't confuse the heck out of you, but within 5 minutes of reading about fifth disease, I was sitting here shaking my head, thinking "here it is again." I certainly don't have all of this figured out, but I think there is some important stuff here. I don't know what all of this means, by a long shot. There are only a few words here that I was really looking at. It appears that my boys have an problem with something that catalyses GlcNAc to the cell surface. There is another substance too, but we'll skip that, until you see if you can digest some of this. Boy, I'm afraid people are going to start hating to see my name pop up on their thread, but I can't help but get the feeling that we have work to do here (on this forum) and I need help!

 

First read this article

http://www.newscientist.com/channel/health...=mg19426074.500

 

Previous studies suggested that glucosamine, a dietary supplement commonly taken by people with osteoarthritis, has some immunosuppressive effects. This led Michael Demetriou and colleagues at the University of California, Irvine, to investigate a similar but more potent compound called N-acetylglucosamine (GlcNAc)

 

 

Ok, I googled fifth disease and saw where it is human parvo virus.

 

This is just a heading from the search, didn't open the article

 

Human Parvovirus B19 Infection: Autoimmune Disease Trigger Human Parvovirus B19 has been linked to a number of different autoimmune diseases, including vasculitis and connective tissue disorders.

 

Then I saw this one

 

http://www.wadsworth.org/databank/b19virus.htm

 

The most common manifestation of human parvovirus B19 infections is erythema infectiosm ("Fifth Disease"). This is characterized by mild symptoms, fever (in some patients) and a red rash on the face ("slapped cheek").

 

and

 

Erythema is redness of the skin caused by capillary congestion.

 

Then this

 

http://www.jtrauma.com/pt/re/jtrauma/abstr...#33;8091!-1

 

Results: Thromboelastogram data show that poly-N-acetyl glucosamine fibers (p-GlcNAc) significantly reduced the R time in platelet-poor plasma, PRP, and PRP supplemented with red blood cells. Poly-N-acetyl glucosamine fibers increased, but not significantly, Annexin V and factor X binding to platelets, platelet microparticles, and red blood cell Annexin V binding. Poly-N-acetyl glucosamine fibers increased the production of thromboxane B2 by PRP.

 

Conclusion: Poly-N-acetyl glucosamine slurry activates platelets.

 

and this

 

 

http://glycob.oxfordjournals.org/cgi/conte...ract/15/11/1067

 

The bisecting N-acetylglucosamine (GlcNAc) structure, formed through catalysis by UDP-N-acetylglucosamine : ß-D-mannoside ß-1,4-N-acetylglucosaminyltansferase III (GnT-III), is responsible for a variety of biological functions.

 

Can you (or anyone) spend some time figuring out what the role of GlcNac is that is talked about in the last two articles? It may take you week or a day, it may take an hour of googling words, don't know, but it could be important, not only to your daughter but other's as well.

 

Again, I'm sorry for throwing this at you periwinkle. I know you are probably upset by what's happening with your daughter anyway and the last thing you need is to look at all these words that make no sense to you, but if you stick with it and read other posts here, it just might start to.

 

 

Thank you for all this information . I have to admit I am a bit confused but am willing to look into all of this!

[camsmom]

Hi and welcome

 

rapid strep testing isnt an accurate dx for PANDAS. Only strep antibody titre testing can really give better indication

 

here is one of many many threads here on PANDAS testing and other PANDAS info

http://www.latitudes.org/forums/index.php?showtopic=1053

 

if you do searches here for PANDAS PITANDS you will get lots more

 

microbial infection seems to be very much a factor in a lot of neurological illness IMHO

[Chemar]

oceanperiwinkle...I noticed that you did not have a clear dx of Fifth's and so do also want to mention the SCARLATINI rash associated with strep/scarlet fever

 

It is believed that the strep rash is a result of an allergic skin reaction to the toxins that are created by the strep bacteria. What are the characteristics of this type of skin rash? The strep skin rash consists of very fine red pimples all over the body. The pimples feel rough to the touch and the skin is often described as having a fine sandpaper type texture or fine goose bumps. The skin may also appear very red, similar to the appearance of a sunburn. Typically, the chest and the abdomen show the first signs of the rash, but within a day the whole body can become covered. The skin folds in the groin, armpits, etc. usually are affected to a greater extent than the rest of the skin areas of the body. It takes approximately seven days for the strep rash to fade. Peeling of the skin is a common healing symptom and may last from one to two weeks. In more severe cases, the skin flaking can go on for several weeks.

 

Scarlet fever has some other symptoms associated with it such as a pale looking area around the mouth and flushed cheeks, a white coating (white strawberry tongue) or subsequently a very red coating (red strawberry tongue) with red dots on the surface of the tongue, and darkening of the skin creases in various areas of the body – groin, underarms, elbows, and neck (Pastia's lines). The scarlet fever rash also disappears or whitens briefly when pressure is applied to the skin's surface.

 

Hello

 

I'm new here too and trying to get used to the idea of a daughter with PANDAS.. so don't know much but did wonder if you had a positive on the Fifth's disease.. it couldn't be a scarlet fever rash from strep? dunno just a thought..

 

 

I am assuming it was fifth disease because other children in her class had it or at least their moms thought they had it (?). BTW..my daughter's tic has REALLY subsided since breaking out in the rash. I believe when they get the rash this indicates that the virus is leaving the system.