Has anyone dealt with Catatonia?

[davros]

16yo ds has been catatonic for over a year. In 2009 had periods of being "stuck in thoughts" - couldn't describe thoughts but couldn't concentrate to do schoolwork or participate in social activities. Counseling and SSRIs didn't help. Went to Pfeiffer Center (nutritional treatment). Blood test showed zinc deficiency and low ceruplasmin (but 24 hour urine test and eye exam showed no KF rings so Wilson's disease ruled out). After about a month of high zinc supplements, ds developed a movement disorder (looked like Parkinson's for about a week, then one neurologist thought it was complex motor tics and other chorea). CT scan, MRI and EEG normal. I asked for ASO test even though we couldn't recall a strep illness because ds admitted some previous OCD rituals and "stuck in thoughts" symptoms happened for about a week out of every month. Result was borderline high but neurologist said that didn't prove anything. End of 2009 was good; then Jan. 2010 ds became much worse - had trouble talking and eating. Went to Dr. K - DNASE B very high and mycoplasma also elevated. Tried prednisone, augmentin and zith - no improvement. While considering IVIG (Dr. K unsure whether it would help because of son's age and lack of response to steroid burst), tried some herbal and homeopathic remedies. Ds got worse - lost bowel and bladder control; eventually couldn't eat (had to be syringe fed), couldn't talk or move. When we tried to make him move, he fought us. Eventually he wouldn't be syringe fed. Took him to ER - diagnosed as catatonic, a rare condition of unresponsiveness - spent a month in psychiatric hospital. Ativan helped but Risperdal given too because Catatonia is tied to Schizophrenia in DSM - newer thinking is its more often associated with mood disorder or physical condition. wWent to another doctor and found out atypical antipsychotics can worsen catatonia - ds weaned off Risperdal but had developed tolerance to Ativan, losing effectiveness. Ds hospitalized again - Electroconvulsive Therapy was recommended - had to go to court because of state law. Ds almost got better with ECT but then relapsed. DNASE B and mycoplasma titers have stayed high although came down a little (ASO normal). Since then many tests have been done including spinal tap. Consulted DAN doctor -ruebela titer slightly high at 69; otherwise everything has been normal. Haven't done IGENEX. Finally last month Dr. Cunningham tests came back (abnormal CaM level, normal antibodies) and now IgG level is low - doctor decided to try IVIG - did it for 2 days about 10 days ago. So far ds is somewhat worse but we know it can take weeks for IVIG to help. Doctor wants to do another psychiatric drug - Bromocriptine because concerned catatonia is getting worse and court order for ECT will run out in a few weeks; ds is already on 8mg Ativan (we're very worried about that high a dose) as well as Tegretol (mood stabilizer) but going off can worsen catatonia. We're trying to walk balance between DAN doctor who is recommending various supplements but has no experience with catatonia and neuropsychiatrist with experience with catatonia but not with PANDAS and is suspicious of anything alternative. Have read on forum of some severe PANDAS patients with a catatonic like encephalitis who respond to high dose steroids - don't know if thats the same thing we see - imaging is normal and steroid burst didn't help; if anything made it worse. Does anyone have experience with PANDAS and Catatonia?

[browneyesmom]

Oh gosh... my heart goes out to you! I'm sorry, I do not know about PANDAS & Catatonia links; however, I was wondering what dosage/med your son had for the IVIG. When my DD11 had subQ & lower dose Ig, she got worse. The higher dose helped in her case. We see Dr. B in a couple of weeks to see how to proceed from here. I wish I could be more informative, but sending you hugs and hoping you find the answers for him to improve soon.

[NancyD]

I do not BUT I have a friend/colleague whose child has ASD and PANDAS and had catatonia. He is also around 15 or 16 and his catatonia has been treated successfully. If you want to email or PM me I can put you in touch with him. He would be the perfect person for you to speak with as he is very well connected and steeped in research. He could recommend who you should see. As I recall the treatment was fairly simple once they found the right clinician.

 

Nancy

 

16yo ds has been catatonic for over a year. In 2009 had periods of being "stuck in thoughts" - couldn't describe thoughts but couldn't concentrate to do schoolwork or participate in social activities. Counseling and SSRIs didn't help. Went to Pfeiffer Center (nutritional treatment). Blood test showed zinc deficiency and low ceruplasmin (but 24 hour urine test and eye exam showed no KF rings so Wilson's disease ruled out). After about a month of high zinc supplements, ds developed a movement disorder (looked like Parkinson's for about a week, then one neurologist thought it was complex motor tics and other chorea). CT scan, MRI and EEG normal. I asked for ASO test even though we couldn't recall a strep illness because ds admitted some previous OCD rituals and "stuck in thoughts" symptoms happened for about a week out of every month. Result was borderline high but neurologist said that didn't prove anything. End of 2009 was good; then Jan. 2010 ds became much worse - had trouble talking and eating. Went to Dr. K - DNASE B very high and mycoplasma also elevated. Tried prednisone, augmentin and zith - no improvement. While considering IVIG (Dr. K unsure whether it would help because of son's age and lack of response to steroid burst), tried some herbal and homeopathic remedies. Ds got worse - lost bowel and bladder control; eventually couldn't eat (had to be syringe fed), couldn't talk or move. When we tried to make him move, he fought us. Eventually he wouldn't be syringe fed. Took him to ER - diagnosed as catatonic, a rare condition of unresponsiveness - spent a month in psychiatric hospital. Ativan helped but Risperdal given too because Catatonia is tied to Schizophrenia in DSM - newer thinking is its more often associated with mood disorder or physical condition. wWent to another doctor and found out atypical antipsychotics can worsen catatonia - ds weaned off Risperdal but had developed tolerance to Ativan, losing effectiveness. Ds hospitalized again - Electroconvulsive Therapy was recommended - had to go to court because of state law. Ds almost got better with ECT but then relapsed. DNASE B and mycoplasma titers have stayed high although came down a little (ASO normal). Since then many tests have been done including spinal tap. Consulted DAN doctor -ruebela titer slightly high at 69; otherwise everything has been normal. Haven't done IGENEX. Finally last month Dr. Cunningham tests came back (abnormal CaM level, normal antibodies) and now IgG level is low - doctor decided to try IVIG - did it for 2 days about 10 days ago. So far ds is somewhat worse but we know it can take weeks for IVIG to help. Doctor wants to do another psychiatric drug - Bromocriptine because concerned catatonia is getting worse and court order for ECT will run out in a few weeks; ds is already on 8mg Ativan (we're very worried about that high a dose) as well as Tegretol (mood stabilizer) but going off can worsen catatonia. We're trying to walk balance between DAN doctor who is recommending various supplements but has no experience with catatonia and neuropsychiatrist with experience with catatonia but not with PANDAS and is suspicious of anything alternative. Have read on forum of some severe PANDAS patients with a catatonic like encephalitis who respond to high dose steroids - don't know if thats the same thing we see - imaging is normal and steroid burst didn't help; if anything made it worse. Does anyone have experience with PANDAS and Catatonia?

[Fixit]

I am so sorry for all you and your ds are going through....

i have no real info...just some questions and thoughts...

 

have you tried abx and what dose and for how long?

maybe you need a different type/higher dose/longer term

 

Do you know of doc latimer in MD..she is neuro and treats pandas

 

sounds like nancy D has a great contact to pursue

 

God Bless

[sf_mom]

I am so sorry.... If you haven't read the book 'Awakening's' I would recommend it highly. Your son sounds very similar to the patients in the book that were diagnosed with encephalitis lethargica. I have heard some cases being 'successfully' treated. Notice it is linked to both SC and PANDAS.

 

http://en.wikipedia.org/wiki/Encephalitis_lethargica

 

Definitely rule out as many potential co-infections as possible and perhaps pursuing a good LLMD could help with additional testing. Where do you live? I believe Dr. Latimer has dealt with patients that have had catatonia.

 

-Wendy

Edited January 16, 2011 by SF Mom

[EmersonAilidh]

I've never read anything about Catatonia & P.A.N.D.A.S. but I'm so sorry! Let me know if there's any way I can help.

 

Are you considering anything besides P.A.N.D.A.S.? & I'm probably going to get jumped on for asking this... But after the elevated Mycoplasma, did you look into Lyme? Physical symptoms like that are more often seen in Lyme than P.A.N.D.A.S.

[PhillyPA]

Emerson that is not true. Be very careful about making statements that "it is seen more often in Lyme" especially when a case is a serious as this one. You could offer the suggestion to get tested for Lyme and other conditions but be careful about such strong statements. In response, I will offer my strong statement - To me, catonia screams auto-immune or encephalitis or a combination of auto-immune and encephalitis.

[KeithandElizabeth]

I agree with Emerson in terms of checking for all possible infections. Here is a brief abstract about one case of catatonia cause by enchephilities which was caused by borrelia (lyme bacteria) I think that no stone can be left unturned and all infections, bacterias and viruses should be considered. A good LLMD would look at parasites, bacterias and viruses.

 

http://www.ncbi.nlm.nih.gov/pubmed/8437717

 

I feel for your pain and we are all trying to help.

 

Elizabeth

Edited January 16, 2011 by KeithandElizabeth

[PhillyPA]

I have no issue with checking everything and leaving no stone unturned. MRI, CAT scans, blood work, spinal taps. EVERYTHING must be looked at. My problem is statements saying that these type of symptoms are more indicative in Lyme. They may very well be seen in Lyme but they are also seen in PANDAS. I have spoken with many parents who has seen catatonia in their Pandas child. So when I stated "That is not true" my intent was to say that it is not true that these symptoms are seen more in Lyme disease than PANDAS.

[wornoutmom]

oh my goodness what you have been through! My heart is just breaking that you have been in this medical system and things just get worse and worse. I too was thinking encephalitis lethargica when I read your post. THere is some very good information on it in the PANDASnetwork website. My son (15) this fall that we thought might be catatonic-like. He was non responsive and when we were able to get something out of him it was grunts or finger movements (thumbs up/thumbs down). But nothing like what you are experiencing. Can I ask what state you live in? Maybe someone has a nearby connection for you? Perhaps a phone consult with Dr L or Dr T? My heart goes out to you!!

[davros]

Thanks for the suggestions. We live in IL - because of son's resistance to movement we are afraid to travel - to get him to hospital we had to tie him in - very difficult with a 16 year old.

Someone asked about abx - he took Augmentin 875 mg for a month and Azithromycin 500mg for 2 weeks. Asked Dr. K about using higher dose as in Saving Sammy but he says he hasn't found it to be effective.

Have had regular blood test for Lyme and also checked in spinal fluid. Have not done IGeneX but I assume because of recent IVIG we need to wait - how long? Someone asked about dose of IVIG - I think it was 1.5g.

I had heard of Awakenings but didn't know there was link to PANDAS. MRI and spinal tap showed no signs of encephalitis but doesn't totally rule out. 5 day steroid burst (50 mg prednisone) didn't help.

While we wait to see if IVIG is effective, does son need to be on prophylactic antibiotics?

Does anyone know if treating zinc deficiency helps or hurts? I read somewhere that supplements that boost immune system can aggravate auto immune response?

Has anyone dealt with low ceruplasmin? Read on Wilson disease forum that it is sometimes seen in PANDAS. Son doesn't seem to have Wilson's Disease (24 hour urine test ok and no KF rings in eyes) but don't know for sure without doing liver biopsy which is quite invasive. Trying to decide whether to follow low copper diet. Its hard enough to get food in son without restrictions but will try if important. Tried gluten free, dairy free for month but saw no improvement. I appreciate all the caring comments - it gives me hope.

[PacificMama]

Davros,

 

I will pm you the name of a doctor who practices outside of Chicago. He treats patients with lyme and related infections, and also PANDAS. He has a relationship with Dr. K, and refers his IVIG patients to him. This doctor could most certainly help you to consider and test for infectious possibilities.

 

Best wishes.

Mary

[JAG10]

Hi, so sorry for your family's trauma!

 

The first doctor who turned us on to PANDAS was Josephine Elia, a psychiatrist at CHOP (Childrens Hospital of Phila.) Everyone says she's CHOP's PANDAS expert, but she doesn't treat many kids at all, most get turned away. Anyway, I remember when first researching PANDAS, I searched it with Dr. Elia's name and she had co-authored some research on PANDAS and catatonia. You could try searching with her name, maybe even email her, but I can't say for sure she will respond.

 

Prayers for your son's wellness and your strength and perseverance.

Jill

[Megs_Mom]

Do you find that the catatonia is due to a general inability to move due to a specific movement disorder? Or is the inability to move due to a compulsion (OCD) - perhaps that movement will cause harm? Your statement that "he fights us if we try to move him" makes me think this may be a very severe OCD symptom? I'm sure there are multiple ways that this could be PANDAS, but if it is related to OCD (and you can show this) and you had sudden onset & a positive Cunningham result, then many of the docs will support your efforts to treat this as PANDAS.

 

Since he is 16, your son might also qualify for the OCD Institute at McLean. Although I firmly believe that a PANDAS child shoudl be treated medically, should ERP therapy be needed, you may find expert help there.

 

What a horrible situation - please know that I am thinking of you and hope you find the right answers for your son.

[Megs_Mom]

Here are a few links to papers about OCD & Catatonia:

 

http://www.ncbi.nlm.nih.gov/pubmed/2760002

 

I can't get to this paper - maybe someone else can help? Obsessive-compulsive Disorder and Catatonia Can be Caused by Antibasal Ganglia Antibodies by Nicholson, Tim. Maybe you can email some of the authors directly.

http://journals.lww.com/cogbehavneurol/Citation/2007/12000/Obsessive_compulsive_Disorder_and_Catatonia_Can_be.11.aspx