I just don't know what to do anymore

[KaraM]

After doing really well for six months or so, my dd8 started declining in Nov/Dec. We've tried changing abx, 22 days tapered steroid, motrin. Nothing is helping. We do ERP - but things get re-contaminated as soon as she over comes them. We saw Dr. B two weeks ago. He ordered other tests and told us to do Igenex Lyme. Everything is a waiting game. It took Igenex a couple days to send the kits. Then a couple days for Dr. B's office to fill out the forms (he was away). Of course we get the forms late Wed and Igenex says to do the draw and ship no later than Wed. So now we have to wait until Monday.

 

In the meantime everything in our home is contaminated to her. All the beds, the counters, the tables, the refrigerator, freezer, chairs. There's no place for her to sit or sleep. Last night she tried to fall asleep sitting in the corner of her room on the baseboard heater. She kept falling off, so she tried falling asleep standing. DH had to hold her in his arms standing until she fell asleep, then lie down with her on top of him. She was half aware and allowed this, but no covers all night. Needless to say, neither slept well. She will only sit in our laps (although she probably won't touch me today, since I sat on her bed last night trying to get her to come in to it.)

 

Even things at my sister's and parents' homes are contaminated - so she doesn't want to go to either of those places.

 

I don't know what to do anymore. Even after we get the blood drawn Monday, we'll have to wait for results.

 

DH and I both negative for strep. DS will be re-tested Monday as well. He's been on abx since December as well with strep/sinus infection. Dr. B. thinks DD's exacerbation is due to either infection in her or around her. If new testing doesn't show anything, we'll have to consider IVIG. I realize this.

 

But what do we do to help her while we wait for all of these results???? Rages are returning as well. We've been spared these for the most part, but they are starting to come again.

 

 

[lyme_mom]

After doing really well for six months or so, my dd8 started declining in Nov/Dec. We've tried changing abx, 22 days tapered steroid, motrin. Nothing is helping. We do ERP - but things get re-contaminated as soon as she over comes them. We saw Dr. B two weeks ago. He ordered other tests and told us to do Igenex Lyme. Everything is a waiting game. It took Igenex a couple days to send the kits. Then a couple days for Dr. B's office to fill out the forms (he was away). Of course we get the forms late Wed and Igenex says to do the draw and ship no later than Wed. So now we have to wait until Monday.

 

In the meantime everything in our home is contaminated to her. All the beds, the counters, the tables, the refrigerator, freezer, chairs. There's no place for her to sit or sleep. Last night she tried to fall asleep sitting in the corner of her room on the baseboard heater. She kept falling off, so she tried falling asleep standing. DH had to hold her in his arms standing until she fell asleep, then lie down with her on top of him. She was half aware and allowed this, but no covers all night. Needless to say, neither slept well. She will only sit in our laps (although she probably won't touch me today, since I sat on her bed last night trying to get her to come in to it.)

 

Even things at my sister's and parents' homes are contaminated - so she doesn't want to go to either of those places.

 

I don't know what to do anymore. Even after we get the blood drawn Monday, we'll have to wait for results.

 

DH and I both negative for strep. DS will be re-tested Monday as well. He's been on abx since December as well with strep/sinus infection. Dr. B. thinks DD's exacerbation is due to either infection in her or around her. If new testing doesn't show anything, we'll have to consider IVIG. I realize this.

 

But what do we do to help her while we wait for all of these results???? Rages are returning as well. We've been spared these for the most part, but they are starting to come again.

I would go see a llmd asap and not wait on igenex. Dr. B is not trained in treating lyme so if this is a tickborne disease you will need a llmd anyway. It would be good for a second opinion regardless of what the igenex results are and a llmd would start treating the symptoms and not wait for a test result. Keep in mind the tests are not reliable-its the clinical picture and it sounds very suspicious for a TBD. Even if your child is negative on igenex she may still have lyme or any of these coinfections and just not be making antibodies to it or she may have a strain of lyme or coinfections that is not tested for (there are way more than are tested for). I am so surprised that Dr. B does not test every child for lyme/bartonella/babesisa before he does a steroid burst given the high percentage of patients diagnosed with PANDAS who have these tick borne diseases. As you may know steroids can really make it easier for an infection to get worse because it suppresses the immune system. Sometimes it may look like the immune system is in overdrive but it may be because of an active infection. Often this goes away with the right TBD treatment. A good llmd can be a life saver. There are so many stories about this on the lyme forum that will give you hope.

[KaraM]

Ok - what is the best way to find a good LLMD who is also familiar with PANDAS? ILIADS? or word of mouth on the Lyme board?

 

How long does it take for the IGENEX results to come back, anyway? We will be drawing the blood and sending it in on Monday.

 

I would go see a llmd asap and not wait on igenex.

[KaraM]

Scratch this question - just found the answer on the Lyme board.

Ok - what is the best way to find a good LLMD who is also familiar with PANDAS? ILIADS? or word of mouth on the Lyme board?

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[Guest pandas16]

Have you ever had IVIG before?

[KaraM]

Have you ever had IVIG before?

No - she responded so well to Zithromax last year. But with this exacerbation Dr. B said we may have to consider it but would wait until the latest test results come back before really discussing.

[adkmom]

Kara,

 

So sorry to hear how rough things are now. Igenex takes about 10 days for results. The LLMDs typically have a wait. Maybe Dr. B would add a 2nd antibiotic while your waiting for the results. It couldn't hurt to see if she responds. I believe that would be the LLMDs next step anyways if she tested positive. Once Colin came back with positive Lyme, he started zithro. that alone didn't seem to help and the LLMD added in Omnicef, which seems to be helping. He too was having rages and aggression along with other behavioral symptoms. It decreased substantially with the 2nd antibiotic. Just a thought. Hang in there.

 

darlene

[EmersonAilidh]

I wish I had some better advice to offer you, but just keep your head up! There's some little Chinese proverb that says "Fall down seven times, get up eight" that has always helped me. When I had bed problems, I slept on the floor. Of course that all depends on your girl's OCD, but my purpose in mentioning that is just to stress that if it's bad as it sounds, make sure you let her sleep wherever she lets herself. All through the summer of 2003 when I had just had my appendectomy & moved into a new house in a new town (AKA lots of stress!) I slept on the stairs. I'd be a liar if I told you I had found anything that got rid of or greatly helped the OCD, but when your mind is telling what you can & can't do, where you can & can't sleep, etc... having parents that understand (as I can tell you do ) is invaluable.

 

As far as the LLMD goes, while a lot of P.A.N.D.A.S. mamas don't like the Lyme suggestions (which admittedly do come up a bit more often than I think they should) it's still something definitely worth looking into. Since they're both treated with antibiotics it's not like there's any harm in looking. Well, besides the money but if you've already gone the IgeNeX way then you probably know that, haha. The only thing to keep in mind with all of that is that if Lyme or any other bacterial infections like Mycoplasma are at play here your girl more than likely would have had a hugely negative response to 22 days of steroids, which blunt the immune response & let bacteria wreak havoc.

 

I'll be saying a little prayer for y'all! I hope you see progress soon. <3

[NancyD]

Kara,

 

I can really sympathize with you. I have been dealing with this for so many years. Just when you think you have the PANDAS under control...WHAM!

 

I agree about waiting for the IGX test results before considering IVig and trying prednisone again and I agree wholeheartedly about finding a good LLMD ASAP. You may want to consider Richard Horowitz, MD in Hyde Park, NY or Dr. Jones in CT. Ann Corson, MD in PA is also fantastic although impossible to get an appointment with.

 

In the meantime, do lots of Epsom salt baths and consider giving bentonite clay. I think you're already giving ibuprofen. How about NAC? That can work wonders with OCD. Keep stress to a minimum. Minimal scheduling minimal demands, minimal everything. Lots of sleep, lots of patience, and lots of loving time. Also, good heathly food. Eliminate all dyes and additives.

 

Wishing you the best and answers soon!

Nancy

[kferricks]

Kara,

 

I can really sympathize with you. I have been dealing with this for so many years. Just when you think you have the PANDAS under control...WHAM!

 

I agree about waiting for the IGX test results before considering IVig and trying prednisone again and I agree wholeheartedly about finding a good LLMD ASAP. You may want to consider Richard Horowitz, MD in Hyde Park, NY or Dr. Jones in CT. Ann Corson, MD in PA is also fantastic although impossible to get an appointment with.

 

In the meantime, do lots of Epsom salt baths and consider giving bentonite clay. I think you're already giving ibuprofen. How about NAC? That can work wonders with OCD. Keep stress to a minimum. Minimal scheduling minimal demands, minimal everything. Lots of sleep, lots of patience, and lots of loving time. Also, good heathly food. Eliminate all dyes and additives.

 

Wishing you the best and answers soon!

Nancy

 

what is NAC? and what are the epsom salt baths suppose to do? I'm game for anything that can help with the ocd.

 

Kara, I so feel for you with the ocd and contamination. AT the begining of all this, we cloroxed our whole house literally and was washing everythng all day long. But, we also informed her that hospitals use clorox cause it kills all germs and you can walk on it a millions times and the clorox is still working untill you reclorox and that is why hospitals use it. Really did work for the most part. I also kept a spray bottle of bleach and would do a quick spray in the sinks so that the smell would remind her that it was clean... I hope your family can find some relief soon.

[MomWithOCDSon]

what is NAC? and what are the epsom salt baths suppose to do? I'm game for anything that can help with the ocd.

 

Kara, I so feel for you with the ocd and contamination. AT the begining of all this, we cloroxed our whole house literally and was washing everythng all day long. But, we also informed her that hospitals use clorox cause it kills all germs and you can walk on it a millions times and the clorox is still working untill you reclorox and that is why hospitals use it. Really did work for the most part. I also kept a spray bottle of bleach and would do a quick spray in the sinks so that the smell would remind her that it was clean... I hope your family can find some relief soon.

 

Hi Kara -- So sorry for what you're going through right now, but can totally relate. Maybe the hardest thing is feeling demoralized because you thought you had everything under control, and now your DD is spinning out again. But you'll get it figured out; hang in there!

 

NAC is n-acetylcystein, an amino acid that's been found in clinical trials to assist with some aspects of anxiety disorders, namely trichotillomania. It's also under investigation now for general OCD and depression. You can get it at the health food store, Whole Foods or the Vitamin Shoppe; we recently found a time-release version that we're trying. It works as a glutamate antagonist, and an excess of glutamate is now thought to be a significant factor in OCD. The advice is to start slowly and on a relatively low dose at first and build up from there. My DS14 is 150 lbs. and he's now taking 2,400 mg. daily, 1,200 mg. in each of the morning and night.

 

Also, you've probably seen it here before, but I would really encourage you to consider some ERP (exposure response prevention) therapy for your DD. Even though it is a medical illness that is driving her exacerbation and the OCD behaviors, having some therapy tools available for better managing the OCD when it kicks in can help you and your DD feel in better control of the situation and help prevent her from completely spiraling out. Contamination was a big thing for my DS at one point, also, but the ERP helped a LOT. There are many threads regarding ERP here on the forum, so you could take a look for some more details or even specific ideas about contending with contamination OCD at home.

 

I would caution you against "buying into" the OCD or contamination and trying to convince her, necessarily, that things are clean. The OCD is not rational, so rational arguments will only get you so far; if you give her the idea that her contamination concerns are in any way valid by washing more, cleaning more, etc., her concerns are likely only to grow, rather than subside. Rather, ERP would expose your DD to what she's fearful of until she comes to realize no harm follows in the exposure's wake; that touching a dirty sink will not make her sick or icky or any of the other stuff she fears. Once learned, these ERP skills are ones she can call upon whenever, if ever, an exacerbation brings those fears to the surface again.

 

Take care!

[T_Mom]

Kara, my heart sank in reading your post. I am so sorry. This is so, so hard.

 

Ruling out the various options as you are doing is the only way to proceed. I think having a counselor/therapist knowledgeable in OCD has helped us (perhaps as parents more then anything...) I don't believe, anymore, that therapy is the cure for these neuropsych kids, have not seen that to be true--but, it is a "shot in the arm" for the family and gives us encouragement from outside until the medical answer is evident. Supplements, epsom salt baths, etc...seem to have helped us some as well along the way.

 

Bloodtests, treatments, (have you tried Augmentin XR Saving Sammy dose of 1000mg twice a day?) this helped for about a year w/ my younger d (73lbs.) You did steroids, (I trust strong enough to represent a true burst) ... You have been doing what we know to do -- and of course, next steps are bigger treatments, which will be next as you said. As an aside, lyme testing came back positive for our younger d, and we took her to one of the best lyme doctors, after his recommended treatment she is still suffering from incapacitating OCD and severe raging. I cannot help but wonder if the lyme results are triggered (at least in our case) by the inflammation issues. (Cart before the horse?)

 

One thing I have not seen clearly represented in the literature is that strong OCD is linked to lyme (neuro-psych issues are mentioned w/ lyme at times, but I have never seen sudden onset strong OCD in children to be linked w/ lyme--has anyone?)

 

Your dear child is so obviously suffering from OCD. Have you ever tried low dose SSRIs? For my older d I think it may have helped some (with steroids and antibiotics at the time). We used a very, very low dose, for a short amount of time it has been over 2 years ago now. What helped her in the long run were the steroids/antibiotics. For our younger d we have not tried SSRIs. I think you are doing all we know to do: the next thing. I am sorry and understand.

Edited March 5, 2011 by T.Mom

[NancyD]

Just to add what Nancy (MomWithOCDSon) said, Acetylcysteine is the N-acetyl derivative of the amino acid L-cysteine, and is a precursor in the formation of the antioxidant glutathione in the body. NAC helps to conserve the body’s store of glutathione and other anti-oxidants, neutralizes toxins, and helps to eliminate free radicals/heavy metals.

 

Consider checking your child's glutathione levels. Many of our children have very low levels. Glutathione is an essential component of your cells and without it your immune defenses become weakened. Glutathione helps to balance the red and white blood cells, boost the immune system, and rid the body of toxins.

 

Shadowtails, you also asked about epsom salt baths. Epsom salts are composed of magnesium and sulfate, both of which are easily absorbed through the skin during a bath. Magnesium is calming to the nervous system and acts as a natural tranquiliser. Sulfate is needed to detoxify a wide range of environmental toxins. Researchers have found that individuals with autism, Lyme, and other environmental illnesses have low levels of sulfate.

 

Nancy

[LNN]

Kara,

I'm so sorry things haven't turned around. I don't know how you guys do it- you and DH have amazing patience and understanding. I think you've been given a lot to consider. For me, it would help simplify things if I made two piles - stuff to do for short term relief while you wait on Igenex and stuff do get lined up for after you have results.

 

In the long term, I might make two appointments - one with an LLMD and one with someone who could prescribe an SSRI or offer something along those lines. Then after you have results, you can cancel one of the two. I believe Dr Horowitz only treats adults - not sure tho. Best to call a few LLMDs and ask a few screening questions. Maybe the lyme board could help with a few interview questions to help you decide on who to make an appt with. Maybe making dual battle plans will help you regain a small sense of control over this nightmare.

 

In the short term, you need to get the family through two weeks and sleep would seem to be a top priority. Not sure if you ever used melatonin, or if you might consider some sort of sleep medication. Did you ever try any sort of fast acting anxiety medication - something along the lines of valium that works on the first pill, not something that needs to build up? Again, I have no experience here, so I defer to others to offer suggestions for things that would be appropriate for a few weeks of anxiety reduction.

 

I know you have lots of ERP under your belt - maybe if you can get DD to relax enough, she might be better able to help fight back. She must be in so much pain right now.

 

You can also try to find some info on bartonella, tho there's not much out there that discusses the psychiatric symptoms. T.Mom - bartonella is what's been blamed for my kids' OCD, not lyme. An Igenex basic panel won't test for this, but since many people with bartonella also have lyme, being positive for lyme might make a doctor suspect bartonella in the mix as well. Just something else to consider.

 

You are in my prayers, as always.

Laura