vasculitis

[Tresse DeLorenzo]

My dd had a rash on her legs 2 years ago that her Primary Ped diagnosed as Perpera vasculitis. Her OCD arrived 6 months later. The rash has come back 3 times since. The OCD has become very severe and no meds alleviate OCD symptoms, she has tried 4 SSRI's, Anafranil and now Neurontin. We had blood work done and read by Dr. T and all tests for strep and immune issues were negative, though she was diagnosed with Lyme's and treated with Amoxicillin for 4 months prior to this which improved her OCD for short time.

 

Does anyone elses child have vasculitis as well as OCD and have any info? When I ask her pediatrician he tells me it's beyond medical knowledge!

Thanks,

Tresse

[KaraM]

Hi Tresse,

 

What is Perpera vasculitis and how was it diagnosed? Is it a test or a clinical diagnosis based on how it appears? I know the strep test was negative, but is it possible that it misdiagnosed and was actually strep in the skin?

 

As for the Lyme - I think a lot of parents on here have had experience with Lyme and might say that it could still be lurking (I'm not an expert at all in that area - no experience - just read other's posts). Hopefully some of them will chime in.

 

Kara

[laure]

My dd had a rash on her legs 2 years ago that her Primary Ped diagnosed as Perpera vasculitis. Her OCD arrived 6 months later. The rash has come back 3 times since. The OCD has become very severe and no meds alleviate OCD symptoms, she has tried 4 SSRI's, Anafranil and now Neurontin. We had blood work done and read by Dr. T and all tests for strep and immune issues were negative, though she was diagnosed with Lyme's and treated with Amoxicillin for 4 months prior to this which improved her OCD for short time.

 

Does anyone elses child have vasculitis as well as OCD and have any info? When I ask her pediatrician he tells me it's beyond medical knowledge!

Thanks,

Tresse

[laure]

Hi Tresse,

Wendy sent me Dr. Corcoran's slide show,which had great pictures of Lyme rashes. I have no expertise (yet) but there was good info there. read under the topic "igenex results"

[Fixit]

My dd had a rash on her legs 2 years ago that her Primary Ped diagnosed as Perpera vasculitis. Her OCD arrived 6 months later. The rash has come back 3 times since. The OCD has become very severe and no meds alleviate OCD symptoms, she has tried 4 SSRI's, Anafranil and now Neurontin. We had blood work done and read by Dr. T and all tests for strep and immune issues were negative, though she was diagnosed with Lyme's and treated with Amoxicillin for 4 months prior to this which improved her OCD for short time.

 

Does anyone elses child have vasculitis as well as OCD and have any info? When I ask her pediatrician he tells me it's beyond medical knowledge!

Thanks,

Tresse

 

I have also read that i probably, takes 18-24 months of abx to truly clear lyme.....just what i read, no experience

i have read about the same for myco infections...probably more true in our type kids, with some type of weakened immune system...

and the more i hear from parents the more quick fixes are less likely..though not impossible

[cobbiemommy]

Dear Tresse,

DS, 11, also has vasculitis, as well as lyme and pandas. We are waiting on blood work which will be done on Sat. For some patients, they use blood thinners, such as Heparin. The blood vessel is inflamed and the blood is thickened because of the Lyme bacteria. Not saying your child has this, but this is the case for SOME Lyme patients. I attached an article-note the use of plasmapheresis and IVIG at the end. Interesting. This is long....

 

Henoch-Schönlein purpura (HSP) is a systemic vasculitis that causes the blood vessels in the skin to become inflamed, causing red spots. When the blood vessels in the skin get inflamed, they can bleed, causing a rash that is called purpura. This rash is typically seen on the lower legs or arms. The specific skin lesion is characterized by the tissue deposition of an immune system product, called IgA immunoglobulin, which is also found in kidneys of patients with a renal disease, called IgA nephropathy.

 

HSP occurs more often in children than in adults, and many cases follow an upper respiratory tract infection (infection in your sinuses and /or lungs). Half of affected children are under age five, although kidney involvement is more likely to be severe in older children. Compared to children, adults had more severe and frequent kidney involvement.

 

Symptoms occur over a period of days to several weeks: skin rash, joint aches and pains, usually in knees and ankles, occasional swelling, abdominal pain and renal disease manifesting mostly as hematuria (blood in your urine), proteinuria (abnormal excretion of proteins in urine), edema (swelling) or alteration in the volume of urine. The hematuria may be noticed as red or tea-colored or cola-colored urine or the amount may be so small that it can only be seen under a microscope. The brain or the lung may also be involved in HSP.

 

Gastrointestinal symptoms are present in the majority of patients including abdominal pain that is frequently associated with vomiting. The pain typically develops within eight days of the appearance of the rash. Bleeding of the gastrointestinal duct presenting with black or bright red color in stools is seen in these patients. Although rare, more serious complications may develop like intussusception, a situation in which one portion of the bowel slides into the next creating an obstruction in the bowel, leading to swelling, inflammation, and decreased blood flow to the intestines involved or inflammation of other organs leading to pancreatitis, cholecystitis, and entero nephrotic pathy.

 

Renal (kidney) involvement is common, occurring in 30-70 % of patients. Kidney disease is usually noted after the onset of systemic symptoms. More marked findings may also occur including nephrotic syndrome, a situation characterized by abnormal excretion of proteins and lipids in urine, swelling (edema), low level of albumin in blood and hyperlipidemia. High blood pressure (hypertension) and acute kidney failure may also be seen. Worsening of the kidney symptoms and biopsy-confirmed worsening of the kidney lesions may be observed in patients with repeated attacks of rash or hematuria (blood in the urine).

 

Even though the symptoms of HSP make it easier to diagnose in children, confirmation of the diagnosis of HSP requires evidence of tissue deposition in the skin or kidney of IgA immunoglobulin. Renal biopsy is another method to establish the diagnosis, but is reserved for patients in whom the diagnosis is uncertain or in whom there is evidence of more severe renal involvement.

 

The overall outcome is good in most patients. All of the manifestations of active HSP usually resolve spontaneously, although recurrent episodes of skin rash and hematuria may be seen. Among those with kidney involvement, only a minority have persistent disease. The kidney prognosis is excellent in most patients. However some patients will have persistent protein in their urine, high blood pressure, and renal insufficiency. It is estimated that HSP accounts for approximately 3% of cases of end-stage kidney disease in children. Poor renal prognosis is more common among those with the nephrotic syndrome, renal insufficiency, and more advanced findings on biopsy.

 

Recurrences are common, occurring in approximately one-third of patients.

Since complete recovery occurs in 94% of children and 89 % of adults, respectively, most patients receive no specific therapy. There is suggestive evidence that corticosteroids enhance the rate of resolution of the arthritis and abdominal pain, although they do not appear to prevent recurrent disease.

 

However, specific treatment is recommended in patients with marked proteinuria (protein in the urine) and/or impaired kidney function during the acute episode. A kidney biopsy can be performed to reveal the severity of the lesions which appears to be the best indicator of prognosis. Advanced disease, usually defined as crescentic nephritis, is treated with a regimen consisting of pulse intravenous methylprednisolone followed by oral prednisone.

 

Other regimens that have been evaluated in children with kidney disease include corticosteroids and azathioprine and multidrug regimens such as corticosteroids, cyclophosphamide, and dipyridamole, or corticosteroids, cyclophosphamide, heparin/warfarin, and dipyridamole. However, since spontaneous recovery is often observed in these patients, it remains unknown whether these regimens are superior to no or less aggressive therapy.

 

Plasmapheresis has also been used in a number of patients with severe disease although its efficacy is uncertain. Intravenous immune globulin has been tried in a small number of patients with heavy proteinuria and a progressive decline in kidney function.

[KeithandElizabeth]

Hi Tresse:

 

I would recommend contacting an ILADS (Lyme literate doctor) to make sure that your daughter has completely dealt with the lyme and to make sure there were no other coinfections with the lyme. Some lyme literate doctors believe that 80% of people with lyme have at least one coiinfetion.

 

A lyme literate doctor will also make sure that you have dealt with the cyst form of lyme with a cyst bursting drug because lyme can "seem' dormant when it goes into cyst form and then reactivate with another illness, vaccination and/or an emotional trauma. These doctors are also experts on all microbes, including mycoplasma and strep.

 

Both of my children had lyme disease and strep was the trigger for their neurological/psychological symptoms. When we finally got rid of the strep, they still had OCD and TICs and we then found the lyme.

 

There is some really good information over on the lyme board as well.

 

Elizabeth

Edited November 9, 2010 by KeithandElizabeth

[kim]

http://www.ctv.ca/CTVNews/Health/20101017/small-vessel-vasculitis-101017

 

Hope for kids with dangerous inflammatory disease

 

Researcher Dr. Susanne Benseler says doctors should ask themselves: "When a perfectly healthy child presents with a new neurological problem, seizures, movement disorders, could this possibly be an inflammation or irritation of the blood vessels of the brain?"

 

 

I guess anyone who is questioning these things instead of automatically handing out psyc drugs is a friend, but still a little frustrating to read.

 

could this possibly be an inflammation???????

[PANDAS_Denmark]

My dd had a rash on her legs 2 years ago that her Primary Ped diagnosed as Perpera vasculitis. Her OCD arrived 6 months later. The rash has come back 3 times since. The OCD has become very severe and no meds alleviate OCD symptoms, she has tried 4 SSRI's, Anafranil and now Neurontin. We had blood work done and read by Dr. T and all tests for strep and immune issues were negative, though she was diagnosed with Lyme's and treated with Amoxicillin for 4 months prior to this which improved her OCD for short time.

 

Does anyone elses child have vasculitis as well as OCD and have any info? When I ask her pediatrician he tells me it's beyond medical knowledge!

Thanks,

Tresse

 

Hi Tresse,

 

My DS9 was diagnosed with vasculitis and PANDAS at the age of 6, having his first severe PANDASexacerbation at the age of 5 (when he was diagnosed with fever seizures and Acute Disseminated EncephaloMyelitis and Meningitis as well).

 

Sorry to say, that the doctors have shown no interest in and have had no luck to find out what kind of vasculitis he has.

 

Whenever my son is exposed to strep and mycoplasma especially, but other bacterias and viruses as well, he reacts with petekkia as a result of the vasculitis and neuropsychological symptoms as a result of the PANDAS. When exposed to strep, he reacts with a scarlatina form rash and peeling feets and hands as well.

 

I have asked the local doctors, what the connection might be between the/his vasculitis and the PANDAS. Could the vasculitis be responsible for a breakdown of the blood-brain-barrier for example ?

 

The doctors however have no other answers than agreeing, that both diseases are immunological diseases and that exacerbations are caused by infection/exposure.

 

My son gets no treatment for the vasculitis.

 

Untill recently he was given 250 mg of Azithromycin 3 times per week prophylactically in an attempt to prevent PANDASexacerbations. The last month he has been given 250 mg per DAY with good results.

 

Best regards,

PANDAS_Denmark