Help, Advice, Prayers Needed

[melimelo]

I'm new to Latitudes and this forum. The short story is my ds, 12, developed severe ocd, tics, and rage issues over a few days in October 2012. His brother has bipolar disorder, so his PCP assumed that my son did, too. I insisted he be tested for strep. While the culture was negative, his titers were extremely high. Another doctor in the practice thought he had Sydenham's Chorea, so he sent us to Children's Hospital in Boston. He was put on IV antibiotics and ALL of his symptoms disappeared within 24 hours. (Children's does not 'believe' in PANS or PANDAS) and discharged him with a diagnosis of OCD and possible mood disorder. He stayed on antibiotics for 6-8 weeks. He also began trying different mood stabilizers and atypical antipsychotics with little success. His symptoms slowly returned, ebbed and flowed, and came to a head this January. He was hospitalized at Franciscan's Hospital for Children (psych hospital) for 9 weeks. He is on a host of psych meds, has been home for a few weeks, and his symptoms are all escalating again. We started him on Keflex 2xday over the weekend. He is very angry, violent, and irritable. He can't get into MGH to see a PANS specialist until August. I don't know what to do. Should I hospitalize him again, just so my family can have some relief and so that he can be safe? Hospitalization didn't work last time, and I don't think the meds are helping. Can you help me figure out where to start? My heart tells me this isn't 'ordinary' mental illness. The website is wonderful, but I just don't know how to get started, especially without a PANS-friendly doctor on my side.

 

Thanks,

Melissa

[Chemar]

Welcome Melissa

I am just bumping your first post up so others here can respond.

[LNN]

Welcome to the forum. Many here have found that lyme, as well as strep and other chronic infections, can also cause "overnight" symptoms. I'm going to send you a private message with a doctor recommendation in central CT. He's very knowledgeable in both Pandas and lyme and should be able to offer you the support your son deserves.

 

To access your private messages (PMs), look at the top of the page, right hand corner, and you'll see your log in name. To the left of that, you'll see an icon of an envelope. Click on that to get to your mailbox.

[pr40]

dr K and dr T are, apparently, easier to reach if you can travel.

if abx helped, i would try the same again. based on our experience, don't go to Children's Hospital in Boston again.

[qannie47]

My ds was dx with Pandas about 2 years ago. After all the reading I have done to learn about this autoimmune linked disorder, I have come to conclusion that all psyche disorders are in some way linked to either autoimmune, methylation, and gut issues. There are just too many parallels to make this a coincidence.

 

My pandas twin is on a waiting list with Dr. James Greenblatt. He is out of MA. He is an integrative psychiatrist whom believes in looking at the things listed above before he reaches for the prescription pad. It seems that he has had a lot of success in treating kids from this perspective. He has published books and articles that you may find interesting.

 

 

You can ask your peds doc to order a metabolic and autoimmune panel. There is also the oats test. The Cunningham panel. Did they run a basic blood panel to see white blood cell? There are lots of ways you can approach this. There is lyme, 23&me. If you can, get your doc to order all at the same time so you don't have to keep running to doc for blood draws (not all blood though).

 

Having the results from these test be very revealing and time saving.........

 

Best of luck.

[3bmom]

My heart is with you. We too had a terrible episode. If antibiotics worked I would definitely get on them again. We also had huge success with anti-virals. Dairy can cause explosive and angry behavior along with gluten. You will find clues based on what foods they want to eat, hence ice cream, mac n cheese, and pizza. I once met a mom who's 3 year old demanded a fast food milkshake and hamburger everyday. They get an opiate like reaction from the immune response and it is very addictive.

 

What really jumps out at me is the increase in behavior at home. I would gamble on the fact your bi-polar child probably has an asymptomatic infection that is additionally triggering your other child. Both should have blood work done for infections and allergies.

 

Environmentally any water/mold issues in the house? Windows upside down with no drainage holes at the bottom. New carpet, bed, pillow etc. Chemicals will also contribute.

 

New pet? They can have allergies or strep.

 

Sounds overwhelming and when you are in the heat of a flare it is very difficult to think. His immune system is overwhelmed so it has sent all troops out to attack and some are inflaming the brain. Each layer addressed reduces the load.

 

Food is huge and unfortunately we can't stop eating. Our Dr. will not treat if you don't change food. Everyone approaches it in a different way. Organic as much as possible. I allowed sweet cereal with almond milk (we don't have nut allergies) until dairy cravings went away...then the sweet cereal went away. We had done Red Gatorade than switched to clear until we found out it had flame retardant in it. Soda has GMO corn syrup so we did Coke from Mexico, now only water. Once the craving is gone better choices are easier. He is younger so hopefully it will be easier.

 

Playing and running can help too. A neuroscientist once told me it helps discharge some of the built up emotions.

 

Lots of great info here. Breathe for yourself too it will help your son. Keep us posted and hugs for being a terrific mom.

[midwestmama]

You and your son are in my thoughts and prayers. Agree with the other posters who said to have your bipolar son checked...When you find a good PANDAS doc, you may want to bring both in to be seen as a) PANDAS can look a lot like bipolar, and it may be worthwhile to rule out any autoimmune stuff with everyone in the family and treatment and healing will happen fastest if everyone is treated and healthy in the house (no hidden infections). Latitudes and pandasnetwork both have lists of drs--my advice would be to choose a PANDAS expert (one of the "big ones" frequently mentioned here and id'd as expert on the lists) and start calling to see who can fit you in soonest for a consult. If your son is not able to travel, many of the drs will do a phone consult. Phone consults are not covered by insurance, and you will find, if you haven't already, that most of the PANDAS experts don't take insurance anyway, for a variety of good reasons. I know this is an overwhelming time and the cost is one more overwhelming thing, but for us it was absolutely money well spent. When you call the offices, share with them about what's going on and ask for the earliest possible appointment.

 

If you are at a loss, you can also try calling NIH (Dr. Swedo's office). There may be trials open where some of the dx workup can be done at no charge (this was the case last year) even if treatment isn't included. If nothing else, they are sometimes very helpful in giving you an idea of where to look or what tests to ask for.

 

Hugs and prayers. Hang in there. Have you read 'Saving Sammy' and many of the posts on this forum? These can be tough days but it will get better. Your sons are lucky to have you in their corner.