New to forum- DS 9 has Lyme, severe OCD question

[Lymefight]

New to this forum, which is wonderful, by the way! I am so excited. A little history, I have lyme, been treating one year, seeing much improvement. DS 9 years old also has lyme, just started treatment about a month ago. Always a worry wart type child, but before Christmas, he had a couple seizures and was on Neurontin and they increased his meds dramatically and he had a horrible reaction to it- couldn't walk, suicidal thoughts. Once we weaned him off, he seemed to do fine. Then, just the other day on Friday, he started having intrusive thoughts about being gay and it has gone on from there with horrible and I mean horrible, disgusting intrusive, disturbing sexual thoughts that bother him all day every day since Friday (4 days now). I am so bothered by where these ideas have come from. Yesterday was so bad, he was having suicidal thoughts again because he just can't bear these thoughts. This was a child who a month ago would hide his face under the covers if there was someone kissing on TV.

 

I spoke with his LLMD and she thinks we should stop his antibiotics for a few weeks until we can get him more stable mentally, increase the lamictal he is now on, to focus on detoxing, and to get him to a therapist. We went to our family therapist today and it was very helpful and he did have a much better day today, but he is still having these intrusive thoughts and he has such guilt around them.

 

Can anyone enlighten me why such a young child would have such thoughts? Although my husband and I have been very understanding and supportive, it does disturb us where this would come from.

 

Thx in advance for any ideas and/or support!

[Dedee]

There is no rhyme or reason as to what intrusive thoughts get stuck in the heads of these children. I will tell you that it is not unusual for children to have intrusive sexual thoughts. There isn't a lot of discussion about it because many people are embarressed about it. When we have had our kids in therapy or in CBT they always ask about this and tell us it is very common. I don't think I have any advice for you except to seek professional help from someone who is experienced in this type of thing with kids. I would continue Lyme treatment as I am sure this is the root cause and make sure to use detox. I'm so sorry you are experiencing this. It seems it's always the ones that are shy about those things that end up with this type of issue. Sort of like their worst nightmare playing over and over in their head. OCD is like that. Ugg......what a terrible thing for a child to have to live with. Very unfair.

 

Dedee

[MomWithOCDSon]

I had made a longer post in response to your query, but in trying to insert a link, I got locked up and lost it. Aarrgghh!

 

Anyway, in the meantime, Dedee pretty much said, and more succinctly, too, what I was attempting to say myself. Only to add that I've found a resource with some great, easy to understand, short papers on topics such as this and pretty much any and all "flavor" of OCD one might encounter along the road to healing. I've used these papers to help our family understand what's going on, as well as shared them with DS's teachers, even therapists. These are "Expert Perspectives" from the "Beyond OCD" site.

 

Some of these papers have also been sort of comforting, in an odd way, because the commonality among the shared thoughts, experiences, ideas, fears highlighted for us and for our DS that this is a part of the behavior set . . . that these sorts of disturbing thoughts are not inherently part of one's "psyche" or the result of some heretofore undiscovered traumatic event in one's life, etc. That they are irrational thoughts/fears manifested entirely by the OCD.

 

For whatever reason, the "Link" function doesn't seem to work for me here, so I'll just type the URL here:

 

http://beyondocd.org/expert-perspectives

 

Hang in there!

[qannie47]

Try and remember it is the disease, not the child!

[pr40]

like the other posts say, don't focus on the content but on the fact that your child has intrusive thoughts. i am surprised that LLMD is suggesting stopping abx. Personally, I would not do it. Instead, i would try anti-inflammatories like ibuprofen and steroid taper (if it is appropriate for lyme).

are there conifections? yeast?

[Lymefight]

Thank you all so much for the information and support. It means so much during this stressful time. He seems slightly better but how long does this last? I know probably different for everyone. I think the LLMD thought antibiotics were contributing to his symptoms particularly flagyl. I asked her about not stopping now. I guess we will see what happens and reasses depending on his response. What is this steroid burst I read about? All the lit I have read for Lyme is that steroids are really bad for you. Also, tell me more about how the ibuprofen helps please. Thx again all. This has been so hard for everyone.

[Lymefight]

Thank you all so much for the information and support. It means so much during this stressful time. He seems slightly better but how long does this last? I know probably different for everyone. I think the LLMD thought antibiotics were contributing to his symptoms particularly flagyl. I asked her about not stopping now. I guess we will see what happens and reasses depending on his response. What is this steroid burst I read about? All the lit I have read for Lyme is that steroids are really bad for you. Also, tell me more about how the ibuprofen helps please. Thx again all. This has been so hard for everyone.

[pr40]

normally, with all auto-immune conditions you want to lower infammation. ibuprofen is the most common anti-inflammatory medication. I don't know exactly how lyme differs from an auto-immune conditions and if PANDAS should be treated with a steroidtaper when lyme is the causing infection -- you may want to start a separate topic on that question, which anti-infammatories to use for lyme.

the gist of my post is that one thing that you can do right away is work on lowering infammation which can be done with Ibuprofen and also through diet, exercize, and so on.

[Lymefight]

Well the anti inflammatories make sense but there is no steroids with Lyme as far as I know. I am trying the ibuprofen. Does the course of this mean the thoughts are constant or do they wax/wane in intensity until they go away? Or do they seem to follow more of a trajectory? Like the last 2 days have been better but last night around 11:30 they got really bad/overwhelming for him and today he woke up and they immediately started and he is so upset and fragile. He just néeds a break and I don't know what to do for him. I feel so heartbroken and I feel like he just can't go on like this. It is s o intolerable. It just seems like there should be a med that would ease this a bit. He is also very irritable and tearful-understandably so! Great start to 2014. I am too feeling pretty depressed but I am Pms and out of my deplin. LLMD also rxd deplin for him. Thx so much for the support!

 

Christine

[rowingmom]

We had/have good luck using japanese knotweed as an anti-inflammatory. We used it during 2 years of abx treatment and are still using it with the herbal protocols DD is continuing on. It really does a good job of decreasing herx-produced brain inflammation. Are you familiar with the lyme herbalist Stephen Buhner? It's worth a look at his website.

 

If your LLMD is rxing deplin he probably feels that MTHFR deletions are part of your detox problems. Deplin is often rx'ed at higher doses than are needed throwing the remaining MTHFR cycle out of whack. This could be contributing to your depression. I know our LLMD wanted DD to take large doses of l-methylfolate, P-5-P and methylB12, but I don't think she understood that overmethylation can be as bad as undermethylation. DD does well on smaller doses every other day.

 

Lots of information to be found on MTHFR here on the forum. Try the search engine.

 

Also, is your LLMD treating for any coinfections? Just curious because lyme doesn't often travel alone. Bartonella can be a major cause of depression.

[Dedee]

Oh so you are on flagyl......well that is a bit of a different story. Flagyl does seem to stir up the worst of the worst so to speak. In that case, I actually might consider taking a break from the flagyl and keeping with the rest of the antibiotics. Flagyl is known to cause huge herx reactions. Is he on other antibiotics? If this is the case, I think I would most certainly think about just staying the course with antibiotics but maybe just not flagyl. That can always be added in later. Most LLMDs use that when the patient is toward the end of treatment or at least more emotionally stable anyway. Think about it......

 

Dedee

[T_Mom]

I am so sorry your son is going through this, and also sorry for you and your family.

 

What caused the seizures? Is there an explanation for that?

 

We have had PANS experience and lyme with two daughters over 5 years.

 

However, I am reading "Brain on Fire" (which is about a young woman, Susan Callahan, journalist with NYP, and her rare form of autoimmune encephalitis included seizures.)

 

She had a rare form of autoimmune encephalitis, which was very serious. Because seizures are not "typical" with lyme or PANDAS -- I thought I should mention that seizures can be associated with brain encephalitis and must be treated. Has he had an MRI and been seen by neurologist?

 

My best--