Desperately looking for help.....

[Twomeymk4]

Hi all,

I have spent hours reading your posts over the last few days and weeks. My 12 year old son is exhibiting all of the symptoms of PANDAS. He was officially diagnosed by a LLMD here in Northern Virginia six months ago, after MY LLMD reviewed his blood work for me, and caught his Strep titers at over 2800. The test was originally ordered by a pediatric psychiatrist two years ago, when he suddenly "flipped out" in the car one day, suddenly refused to leave my side, couldn't attend school, was walking on his toes and cried all the time. His solution at the time was heavy doses of SSRIs, which lead to threats of suicide. Our son begged us to take him to a hospital, where we were told we didn't want to admit our 12 year old to a psychiatric hospital. Luckily they got us into another Dr. who helped us wean him from the SSRIs and we saw some improvement. A couple of months later, we went on spring break and he couldn't get in the car to come home. I took him to a new LLMD and asked her to humor me and run the test again. His strep titers were again over 2000. We started a course of antibiotics , Minocycline (he is allergic to amoxicillin) and within two weeks he was better. Attending school, playing lacrosse and even cried because he said for the first time his knees and ankles didn't hurt. She stopped the abx after one month and he deteriorated. Second round we did not see drastic improvement, but looking back now, it wasn't awful. In May 2013 he couldn't attend school at all. He complained of "intrusive thoughts", stomach problems, couldn't handle the chaos in class or the halls, wouldn't ride in the car, would go through phases of "Is this safe to eat?", started doing weird repetitive motions with his hands, twitches all night long, doesn't sleep, complains of restless feelings....the list goes on and on.

 

He has NEVER in his life tested positive for strep throat. He had perfect attendance in school, since kindergarten, until last year. This is day three of school here in Virginia and he has attended for a total of an hour. He says he can't do it.

What do I do?

Who do you recommend?

 

I know you are all busy with your own issues, but I don't know where to turn to. His Dr. says she will do whatever I need her to do, but I don't know what that is. The psychiatrist we are seeing just keeps prescribing heavier drugs, which make him angry and violent and suicidal. This is a child who has never even raised his voice to me. He says that all of the "positive thinking", deep breathing, etc. from therapy don't work. I am at a loss.

 

We were turned away from the study at NIH, because we didn't have a positive throat culture. Ever.

 

Neurologist? ENT? Infectious disease? Storch clinic in FL?

 

Wanted to add that I tested positive for the MTHFR gene and am now taking Deplin. I feel quite a bit better. The Psych did write him a prescription also, but I haven't seen any changes...its been two weeks.

So..Minocycline x2 a day

Probiotics

Prozac 20mg

Deplin

 

My son was a smart, athletic, popular, happy and very social kid. We just want HIM back.

I will be incredibly grateful if you share your knowledge and suggestions and will in turn support others.

With gratitude ,

Karina

[beeskneesmommy]

get an appt. w/Dr. Latimer in Bethesda and an immunologist (we see Dr. Bouboulis in CT) to work in conjunction w/your LLMD. Your son needs to be on antibiotics longer than 1 month.

[LexMom]

I live in Sterling. Dr. Williams at Reston Pediatrics has been treating my son. She is open to trying different things. We also see Dr. Alpan in Fairfax. He won't really diagnose PANDAS, but he treats my son as if he has it. He is committed to at least helping him, unlike some of the neurologists and psychiatrists we have seen. Currently he has my son on long-term abx.

[pr40]

if I were you, in addition to an apt with a Pandas specialist and immunologist, preventively, you may want to start a new diet with nothing that can exacerbate inflammation. usual culprits are gluten, dairy, legumes like soy, peanut, and beans, nightshades like tomato, and egg whites. lots of meat is fine. you are working with LLMD, so I assume ds is on supplements.

diet plus abx long term plus supplements plus exercise plus therapy helped us. we have MTHFR mutations too.

best of luck

[rowingmom]

Has your LLMD tested him for lyme and co-infections (Igenex test)? Even though his strep titers are high, his symptoms do not have to be necessarily caused by strep, there could be other infections playing a part as well. The joint pain could be caused by strep or lyme.

 

Have him tested for MTHFR deletions. Many here use 23andme. Addressing methylation blockages often helps.

 

Our daughter reacted with PANDAS symptoms to strep infections although this was not her primary infection. Lyme and bartonella suppressed her immune system and allowed other infections to become problematic. If you have lyme/MTHRF deletions, there is a distinct possibility that your son is dealing with these issues as well.

[rowingmom]

Some good links for this type of diet:

http://perfecthealthdiet.com/

http://www.thepaleomom.com/

http://www.marksdailyapple.com/#axzz2e1lS80HB

http://www.againstallgrain.com/

 

you may want to start a new diet with nothing that can exacerbate inflammation. usual culprits are gluten, dairy, legumes like soy, peanut, and beans, nightshades like tomato, and egg whites. lots of meat is fine.

[msimon3]

Several LLMDs will use a combination of antibiotics, not just one, that have shown to be more effective against Borrelia and coinfections. I recall reading a study where the -cyclines are very good at CNS penetration and killing spirochete forms of the bacteria, but they also tend to create relatively more cyst forms of the bacteria. A secondary antibiotic like an -azole is commonly used to go after the cyst form, something like Flagyl or TIndamax. Cycling the antibiotic therapy on and off and on again is also sometimes used to allow time for the cysts to revert back to a form where they are more readily killed. A good LLMD will understand these various forms and have a treatment approach for them. I will PM you with our doc if you are interested.

[nicklemama]

Make an appt with Dr Latimer. It will take awhile to get in. See one of the local docs recommended. Test for Lyme and coinfections. We've been at this 4 years. We saw improvement after dx and starting antibiotics. More improvement after IVIG. Caught pneumonia 19 months later and had 2nd IVIG. Found local doc who is Lyme friendly. Tested and found ehrlichia and anaplasma. Started treating that. He's the best he's been in 4 yrs on augmentin, biaxin, diflucan, treating for compound heterozygous MTHFR and some other supplements and enhansa.

[PowPow]

I am in Northen Va, also. Go see Dr Latimer.

We saw Dr Z (llmd) in ffax . she was good.

 

Dr latimer brought my kids back from the brink.

PM me if you like.

[bigmighty]

While you are figuring this out, try ibuprofen 3x daily for a couple of days and see if there is any difference. If yes, it may be brain inflammation. See if one of your current docs is open to a steroid taper in addition to extending antibiotics.

[cobbiemommy]

Steroid taper is the suggestion I would make. Not only is it a valuable way to bring down inflammation; if it is effective, it is somewhat diagnostic.

[rowingmom]

Yes, a steroid taper would be diagnostic of brain inflammation, but inflammation can be caused by different things, antibodes, cytokine cascades.

 

If you have an active bacterial infection that is not being properly addressed by the correct abx, you risk exacerbating the infection with the immune- suppressing effects of the steroids. Steroids have worked for many here, but if you are not sure of the infections you are dealing with, I would be cautious.

[Twomeymk4]

Thank you all, I really appreciate your suggestions. We have never done the IgenX test, even though I know it is recommended. Two years ago he tested positive for two bands, which his pediatrician considers negative. My LLMD will not treat him, I think because she doesn't want to get in trouble. His Ped was named to the Loudoun Lyme Board as the "naysayer". This explained why a year prior he refused to even test my son for Lyme. I have had it, my dog has had it twice that we know of...didn't make a difference in his eyes. I am learning about the diet management...and certainly makes complete sense. Seems so daunting, but certainly worth it, if it works. I am also trying to research the supplements, although all seems so VERY overwhelming. I was trying to follow the conversation about the different probiotics and became overwhelmed. That happens a lot lately. I haven't pursued the steroid route, because I had heard that could be bad, if he does in fact have Lyme. Does anyone have an opinion on that?

 

I will try the ibuprofen for the next three days, certainly couldn't hurt! I have an apt with Dr. Latimer for the middle of November. Seems so VERY far away, when your child isn't in school. I appreciate all of your suggestions in the mean time. I will look into all of them! I am very grateful for your time!

[msimon3]

We have Lyme, and did a taper back when we didn't know what was causing symptoms and wanted confirmation that they were immune related and not food/stress/allergy/etc. The taper needs to be done with antibiotic use, and preferably with antibiotics that are tailored for whatever you might be infected with, since the immune system will be suppressed during the taper. Conceptually, neuropsychiatric symptoms that are not immune related should be unaffected during the steroid taper, while those that are immune related should decrease. This was helpful for us to confirm an immune process, but frankly it does pose some risk and you need to weigh how valuable this confirmation will be worth amid the other clinical or diagnostic information you have. For example, you have two bands for Lyme WB testing plus these clinical symptoms. You might take additional tests from Igenex, then go to a new LLMD and get another opinion, and then reassess whether you need to do a steroid taper.

 

If you think your LLMD is not diagnosing or treating out of fear, which is a valid perspective given some of the disciplinary activity of insurance companies and state health boards, then you need to find an LLMD who is not fearful. Any fear is going to bias diagnosis and treatment, and really obfuscate the truth at hand. The schism and debate in the medical community over Lyme disease either encourages doctors to explore and engage, sit on the sidelines and follow 20 year old CDC guidelines, or stay away completely. If you suspect Lyme disease, you want a doctor who will explore and engage this disease with you.

Edited September 6, 2013 by msimon3

[JoyBop]

In not really sure that steroids are actually diagnostic but they do work to calm down an over active immune system and reduce inflammation in the body. Rowing mom makes an retesting point about shutting down the immune system if there is a bacterial infection at work. Just a thought, but im thinking a CBC would show elevated white blood cell counts if there were an infection. In any case, I think a round of steroids is not something to go into lightly.