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untreated PANDAS?


maliee
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Dear all,

 

I am new to this forum and learning so much from all of you!

 

We are rapidly loosing our 21 yo son to severe OCD. He had on and off OCD symptoms since the age of 5, but nothing too dramatic - cognitive rituals, contamination issues, anxiety, need for constant reassurance. It was blamed on divorce, moving, me working 80/h week. However with every exacerbation obsessions got worse. In mddle school he was debilitated by fear of developing a bold spot, which resolved eventually morphed into anorexia for 6 months, then, contamination blossomed.

 

He was always anxious, but managed to get into great college where he crushed. He was treated with Luvox, got severely manic - his psychiatrist was elated, that " we now have a real diagnosis of bipolar". He then was in one of the top residential OCD programs for 12 weeks and got much worse. With all the treatment, he only got worse. A year ago he was still deciding between economics and premed, today he would not shower, would not put his socks on, cannot read as it triggers his cognitive rituals.

 

I feel we are on the wrong track with CBT and all that. He got tested for PANDS by Dr.K - the only thing that came back mildly elevated is antiDnase. ASO, tigers all negative.

We started Augmentin 875 twice a day 11 days ago, but no significant improvement other than his mood is more stable, less rage. I am willing to pay for his IVIG as we are loosing ground very quickly.

Would really appreciate any thoughts, experiences or suggestions.

 

All the best to you!

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I feel we are on the wrong track with CBT and all that. He got tested for PANDS by Dr.K - the only thing that came back mildly elevated is antiDnase. ASO, tigers all negative.

We started Augmentin 875 twice a day 11 days ago, but no significant improvement other than his mood is more stable, less rage. I am willing to pay for his IVIG as we are loosing ground very quickly.

 

 

I'm so sorry to hear of all you and your son have been through -- not the least of the blaming on divorce and long work week! I certainly find it suspect that you have done many interventions that have not seemed to be helpful!

 

I'm not sure how much research, etc you have done, but please remember that it is not only strep that can cause this illness. The 'S' in PANDAS is strep, however, I don't know where the 'official' name change stands, but it is chaning to PANS and there are many papers, research,etc about the many other triggers -- so aside from the fact that titers are not too high and that is not really indicative, especially if he has been sick for a long time -- there could be other triggers which easily explain lack of strep markers and not stellar improvement from abx -- such as viruses, mycoplasm, lyme and other TBI.

 

 

is Dr. K suggesting IVIG? has he discussed all the other triggers with you or are you only discussing strep?

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Did he happen to get his shots for college? I teach with a girl who's 19 year old had a few little issue growing up until his meningitas shot for college made him dysfunctional with OCD and confessions. That big football player even drug his matress into his mom's room so he could sleep by her bed! Before we knew about PANDAS/PANS, our son had flares of dysfunction and we didn't make the vaccine connection until after the huge strep episode. Some here found that the trigger was the flu mist or shot. I think maybe Dr t has the most experience with older kids and complicated issues. I bet you are on the right track because he began his issues so young, did not respond to the normal treatments, and gets worse on psyc meds. Augmentin 875 was not enough for my 10 year old, (now 13) he improved when the dose was Augmentin XR 1000 like many others here. Or maybe augmentin is not the correct antibiotic for him. While you are looking into IVIG, also look into PEX . Those are other things people do for treatments

I am on my iPhone and in a hurry, so forgive spelling! Don't give up, I think you are onto something..... And wow what a long journey for you and your family. Sounds like he is blessed to have a mom that keeps searching!

Linda

Edited by 3boysmom
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Maliee - so sorry for the suffering your family is going through. It sounds somewhat similar to ours. We have a 20 year old who has also been suffering for years. She had overnight bladder frequency when young (seen by numerous specialists who could never figure it out...), then morphed into Anorexia Nervosa with compulsive exercise. It's unbelievable the number of "specialists" she has seen for this - no one addressed anything other than the eating disorder. No psych meds helped her - they've tried everything. She managed to get through high school (and like many of these kids - her grades were phenomenal - and headed for college with a great scholarship. Sadly, dropped too much weight and had to drop out. She's been home now for over 2 years, getting worse, unable to return to school. Last summer she developed extreme exhaustion, followed by a hopelessness where she just begged to die and have it over. She also developed more of your typical OCD symptoms that I didn't realize she had before, such as letter counting and some other new rituals. She was then able to tell me about some other OCD symptoms she had had when she was younger, that she knew were strange and hadn't told me about. (Keep in mind that Anorexia is ALL about obsessions with food and compulsions with exercise...)

 

I had been reading about PANDAS online, and begged her doctor to run some bloodwork for PANDAS. (She wouldn't...) So we finally talked her psychiatrist into ordering the bloodwork. Her titers were elevated. She was on 4 different antibiotics and still tested positive for strep! (I'm assuming she's a carrier, but doctors don't all agree on that...) Dr. K had her tested for EBV, and she has had that in the past (which may explain her exhaustion last summer - a definite turn for the worst - she has never really come out of that nightmare.)

 

She had IVIG done in December. Things really haven't been too much better until just recently - and she does seem to be a bit happier during parts of the day. Mealtimes are still extremely stressful for her. Dr. K keeps telling us to be patient - he hopes we'll see more improvement as time goes on.

 

It's just so unreal to see our kids suffer like this, and so hard to be patient during the rage times. Please hang in there. I truly believe these are brain inflammation issues. Nothing else can really explain it. Also sorry I don't have any helpful ideas at this time - when I read your post I just felt a connection in our kid's experiences. It's a lonely, scary thing to be going through - so glad for these forums! (BTW - this is my first post on here - hopefully I'm doing it right...)

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If you're seeing ANY positive impact at all via abx, I think I would continue down the PANDAS/PANs path.

 

My DS went untreated for more than 6 years (we think about 9 years, in truth), and though he responded well to abx, it has continued to be a long road. I don't know that anyone knows for sure, but it seems, experientially and anecdotally, that the longer the child suffers prior to finding treatment, the more protracted the healing trajectory may prove to be.

 

In short, it seems to me, that there is much to be potentially gained and little to be lost in pursuing this avenue. You and your DS have already lost so much . . . so any steps in the right direction would be a blessing, no? -_-

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Did he happen to get his shots for college? I teach with a girl who's 19 year old had a few little issue growing up until his meningitas shot for college made him dysfunctional with OCD and confessions. That big football player even drug his matress into his mom's room so he could sleep by her bed! Before we knew about PANDAS/PANS, our son had flares of dysfunction and we didn't make the vaccine connection until after the huge strep episode. Some here found that the trigger was the flu mist or shot. I think maybe Dr t has the most experience with older kids and complicated issues. I bet you are on the right track because he began his issues so young, did not respond to the normal treatments, and gets worse on psyc meds. Augmentin 875 was not enough for my 10 year old, (now 13) he improved when the dose was Augmentin XR 1000 like many others here. Or maybe augmentin is not the correct antibiotic for him. While you are looking into IVIG, also look into PEX . Those are other things people do for treatments

I am on my iPhone and in a hurry, so forgive spelling! Don't give up, I think you are onto something..... And wow what a long journey for you and your family. Sounds like he is blessed to have a mom that keeps searching!

Linda

 

Agreed about the other infections, genetic, environmental, metabolic issues and immunizations. I will respectfully disagree about Dr. T. having the most experience with teens (personal experience,) but that being said, I am going to PM you. I have 2 teen boys (one is now 20). Been treating quite a number of years.

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Yes!!! He did get his meningococcal vaccine in college and got rapidly worse after that!

 

He grew up in CT and NY, so tick - borne is a good possibility. I will get him tested. He also had an H.pylori at 5, right around when his symptoms started. He should probably be retested and retreated.

 

Dr.K said he wouldn't test for anything else, mildly elevated antiDnase was enough for him. Should I get ENT work up/ tonsillectomy before IVIG just in case?

What is the optimal preparation for IVIG so not to waste the opportunity?

 

Dr.Jenike said in the MGH forum, that there is next to nothing known about PANDAS in older kids and adults, that's it. Does anyone know of any older kids, young adults treated successfully for PANDAS? Seemed that there is a lot of hope and success for younger children, which is great! But what about kids who did not get diagnosed at the younger age?

 

Thanks for all your replies and thoughts!

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So sorry for what you are going through. Yes, there is hope for older kids! I would hope that no one on this forum would give up just because of their chid's age. My son is 18 and he wasn't diagnosed until 16. If I were you I would look into lyme, bartonella (big trigger for OCD), h. pylori, KPU, babesia, parasites (big trigger for OCD), viruses, yeast, stool analysis (Metametrix), strep (even if his titers aren't high) and the meningococcal vaccine. I would also run the TGF-B1 which, if high, is usually an indicator of chronic infection. And as great a doctor as Dr. K is, he may not be able to help you with all of these things. I would find a GOOD LLMD. I wouldn't rule out lyme just because you don't get a positive lyme test. Your son would certainly have a clinical diagnosis of lyme which would merit at least pursuing that. One thing that I have found is that any good LLMD can also treat PANDAS (my son had both), so hopefully with a good LLMD you can be covered for both. However, I don't think that a good PANDAS doctor can successfully treat lyme.

 

And if I were you, I wouldn't jump into IVIG. I was in the same situation as you a year ago--seeking any sort of help for my son, especially because of his age. But you may find that if you pursue other things, the IVIG may not be necessary. Or you may find that you need to treat other things before going to IVIG. In our case, it looks like we will be able to avoid the IVIG altogether.

 

Augumentin didn't help my son either. Biaxin was the only drug that pulled him out of the severest of his OCD. Interestingly, Biaxin is a big lyme drug, though at that time, I thought my son only had PANDAS, not lyme. I had never seen a tick on my son and he is not a super outdoors type of person. He always wears long pants. He is that last of my children I would have ever expected to have lyme.

 

My son's biggest problems are/were parasites, KPU, and bartonella. His ONLY symptom is severe OCD. In the beginning he was very much like your son. He had sudden-onset completely debilitating OCD. Hang in there. He can get better! Wishing you well.

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