Jump to content
ACN Latitudes Forums

Another IVIG and still waiting


Recommended Posts

Figured I'd send an update DS15 is still stuck.

Pros:
He is much better cognitively. He has a reliably good mood and is generally a very considerate family member. He is willing to help his siblings with homework, join in conversations and hang with his friends who visit once a week at least. Has started adding different foods on different days. Started talking about his illness, emailing with school friends and more responsible when he upsets us. Reduction in ticks (towards end of week they are gone). He's drawing, singing, hugging, but....

Cons: Still doesn't want to shower, change clothing, leave the house. Still has a marathon session once a week when he goes to the bathroom (rituals galore). Still pulling hair, although that is better with reduction of pr0opranolol. Has a complete meltdown when we push any of the above.

Treatment:
Augmentin, Valtrex, Minocycline, Diflucan and tapering off steroids (did 15 days at 80mg), now down to 20mg. HD IVIG last Wednesday and Thursday (4th one, others: Feb,March,August).

We have added Hashimoto's Encephalopathy and Neutosarcoid to our list of ailments (along with Strep, Coxsackie, EBV & MycoP).

In august we did 5 PEX in late July that didn't realize a reset, but might be helping with improvements now?!?

Anyway, I just wanted to send out an update. We are still plodding along and if you didn't see what he looks like (handsome homeless boy), you would think he was fine. We had the school psychologist come visit last week to see if it's wise to start schooling (even a bit), but his opinion was that there was still too much anxiety and he's afraid of causing school phobias. He said he would come visit more often and the school has organized the kids to be in touch with emails, packages and hopefully visits when DS is more Ok with opening up to more friends (beyond the 3 who are always welcome).

This is just dragging on. The idea right now is to deal with the AE with regular IVIG and prob IV steroids. This afternoon I will be speaking with the integrative neurologist about supplements (I have what she sent: olive leaf, thyroid support and reservatrol, but need an idea of what to add first/when).

I guess this is sort of a vent...I'm thrilled we are still progressing, but also tired of the OCD. DS spends his time playing elaborate video games, building & designing Lego online, drawing and watching a few comedy shows (friends, Big Bang theory, Brooklyn 99).

Anyone else have a kid that is clueless that TV characters are riddled with similar OCD? My daughter (10 non pandas) said to me that DS is like Sheldon, especially that DS eats only certain things on certain days. She said the big difference is that DS is sick and will get better and Sheldon (big bang theory) is not. I pray she is right.

Sorry this was so rambling.

Thank you if you got this far : )

Suggestions, observations, input, etc are always welcome!

T.Anna
DS15 - started falling off cliff in the Fall '12.
January 24,2013- Last time he voluntarily left the house.

Edited by T.Anna
Link to post
Share on other sites

Oh, I am so thrilled for you and how far he has gone, but so sorry he is not all done yet. I know that you must be exhausted.

 

I was wondering if your son had a lumbar puncture to look for encephilitis and other things in his spinal fluid? I 'm wondering because my daughter is going to have one, and I don't dilly know what to expect. The doc didn't seem to suspect encephilitis, but I am desperate to find anything to pay for ivig.

 

My daughter is different than your son in that her obvious OCD is not what is taking such a toll right now---it has been a bigger issue in the past, but now it's clothing issues--she can hardly wear anything (I know that could be an OCD thing as well as clothing sensitivity) and she gets wildly angry and rages at the drop of a hat. She cannot function to so any schoolwork, has list a lot of math skills and is extremely immature.

 

So just wondering if your son had that procedure and what to look for

Link to post
Share on other sites

I know you are frustrated but LOOK AT THAT LIST OF PRO'S!!!!!

YAHOO!

I think you are getting there. Time and time and more time is needed to heal. My daughter's docs say 1-2 years once consistent, appropriate tx begins.

I, honestly, would start counting from pex for him.

This is very encouraging, t.anna.

Link to post
Share on other sites

tu4four, No we haven't done a spinal tap.

He has been diagnosed through the following blood tests:

Thyroid Antibodies (Hashimoto's Encephalopathy)

SED rate (Encephalitis)

ACE levels (Neurosarcoid)

I would definitely classify the clothing as OCD, I heard of two other severe PANS teens with this.

 

PowPow, DH thinks I painted too rosy a picture in my post and should've specified that DS spends 24-30 hours in the bathroom from Sunday night to Monday night.

And that the OCD also involves staying on the couch as much as possible until Saturday night.

 

Yes, I agree that we have come a long way and are not just splatter gunning it anymore, but it's still frustrating that he is not functioning even near normal teen ways.

 

Thanks for the words of encouragement. PEX was 8/3/13, so I guess that gives us a lot of time!

 

T.Anna

T.Anna

Link to post
Share on other sites

Hi T.Anna, The IVIG was more recent if I remember correctly? They say that it takes 4-12 weeks for the fullest effects of IVIG to "do their thing". I would say that while we saw some immediate improvements with my ds, it was about 4 weeks where we saw the most improvement. I remember reading that with older kids, it can take up until 8-12 weeks. I also ditto PowWow about the 1-2 year healing period. I actually got that from the Horse's mouth, Dr. Swedo. Although I suspect none of this is news to you.

 

In all of our parenting hearts, we just want to end their suffering. When they hurt, we hurt. It is easy to get discouraged, although in reality, none of us get discouraged easily, isn't that the truth. You just have to spend a couple of hours in this forum to experience the strength and resilliance.

 

I am glad to see the many positives....so surely that is a good sign! Your son is in good hands with you as his mom, that is clear.

 

You all will get through this....remember that.

Link to post
Share on other sites

you said you want any suggestion so I am going to shoot in the dark: let's assume that his OCD is caused by low serotonin. try increasing it with 5-htp. you can also try other things that are likely to help with serotonin levels like eating protein, fat, fish oil.

 

do you know his methylation mutations? they are useful as they can tell you what is likely to work with serotonin and dopamine.

did you do basic blood test for vitamins and minerals and amino acids? they can be telling if there is an insuficiency.

one thing that works with our kids is giving them a precise goal to work toward, like taking something away and saying that he'll have it if he takes a bath. I assume that he can understand why bath is a necessity. generally earning things seems to work for our kids because it focuses them away from how they feel and toward a specific end result.

i am sorry you are going through this.

Edited by pr40
Link to post
Share on other sites

Thanks Pr40. I finally have an integrative doctor on board who is a board certified neurologist as well. I have given her DSs 23andme and Courtagen and she is putting the various supplements together as well as titrating up etc. I'll Ask the doctor about the 5-http.

 

Incentives/earning: he's 15 so i think that makes it difficult, but I also think he genuinely WANTS to please us and just CAN'T. I think that's why he cries and breaks down...we'll keep trying though, eventually something will give (hopefully it will be the OCD).

 

We tested metals through blood and for now that's as far as we'll get with his OCD (no stool test, urine/drink test).

 

Thanks guys,

T.Anna

Link to post
Share on other sites

Thanks Pr40. I finally have an integrative doctor on board who is a board certified neurologist as well. I have given her DSs 23andme and Courtagen and she is putting the various supplements together as well as titrating up etc. I'll Ask the doctor about the 5-http.

 

Incentives/earning: he's 15 so i think that makes it difficult, but I also think he genuinely WANTS to please us and just CAN'T. I think that's why he cries and breaks down...we'll keep trying though, eventually something will give (hopefully it will be the OCD).

 

We tested metals through blood and for now that's as far as we'll get with his OCD (no stool test, urine/drink test).

 

Thanks guys,

T.Anna

Link to post
Share on other sites

We too had a cute little homeless boy. We have not done IVIG, I am not opposed to it but Dr doesn't use it. We are stable and flourishing in school. I had two thoughts that hopefully might help. How much Valcyclovir? We are 1 gram 3x/day. We had to work up slowly maybe because of die off. We also take sertraline after the infections are addressed. I am not thrilled but our Dr can show on the Neuro-spect scan dark areas in the frontal lobes. He says the SSRI brings blood flow back into the area. We had almost no OCD before he starts it. We also do diet. I don't see much talk on this forum about GMO. Our food supply has been altered with the DNA of pesticides. Most corn in the US is patented as a pesticide and GMO soy has DNA of viruses and bacteria so it can be sprayed heavily with Roundup pesticide which is patented as an antibiotic. Diet isn't easy but I feel like we keep exposing our kids to food that puts their immune system on a roller coaster. That is what worked for us. I know our kids all have their own tapestries. Having been there I sincerely hope the healing continues for you. Hugs 3bmom

Link to post
Share on other sites

Thanks 3bmom. He is currently on Valtrex XR since mid August. We see improvements just bit quick. Have an appointment tomorrow morning to see what we do next. Hoping it's IV steroids and LD IVIG. We haven't had a lot of success with diet, mostly because he can be so restrictive that I'm again of anorexia.

 

T.Anna

Link to post
Share on other sites

T.Anna Im so glad to hear the positive things that are happening. Im especially thrilled for you that your school system is so supportive and are actually thinking of your childs best interests. It gives me great hope to see! It's a beautiful thing that he is able to maintain his friendships through all of this. When he is finally free from this dreadful illness he will fit right back into his old life. You have come so far! As we always say in our house these days, "Celebrate to good days (or moments) and just get through the bad."

 

Question...How did he get the Hashimoto Encephalitis diagnosis? I have Hashimotos myslef but Im curious how the encephalitis was found. A high SED rate would prove inflammation in the system, but not specifically the brain. The anti thyroid antibodies would confirm the Hashimotos diagnosis. I ask for my own purposes because when I am in a flair its as if I have intermittent amnesia or as if Im a stroke victim. I know what Im thinking but either I cant communicate or the words come out wrong. I cant find my car in a parking lot or say my own childrens names. I would love to know if I have encephalitis as well. Please tell me what test confirmed that.

 

Lastly, I didnt see any Synthroid or thyroid replacement to treat the Hashimotos. What are you doing to treat the disorder?

 

You have come so far! He will get there, little by little.

Link to post
Share on other sites

The HE is dx, I believe, as a result of the thyroid antibodies or is it anti-thyroid antibodies (dot have labs in front of me). He has thyroid "issues" but not necessarily Hashimoto's Thyroiditis. Honestly, I'm not so sure that he has HE, since clinically he doesn't have many of the symptoms. His symptoms match Neurosacoidosis more and so do his elevated ACE numbers, but overall...I think I have a boy with a broken immune system and if we could think of more things to test for he quite possibly would be positive on those too?!

 

The hardest part is that time keeps moving so fast. Before we know it, it's another Sunday evening and he's running into the bathroom to spend another marathon 24+ hours with his rituals. I remember in June asking for success stories and one person wrote "we couldn't see the light at the end of the tunnel, until we were actually outside the tunnel." I guess that gives me hope, because it's hard to find glimmers sometimes.

 

Thanks, his friends and the school community have been great. Hopefully, he'll be able to join them one day, there just seem to be so many hurdles.

 

JoyBop there are some HE Facebook groups where you might find some more information. Most are treated with steroids. At the moment we are only treating his thyroid with Gaia Thyroid Support. We were trying propranolol (beta blockers sometimes help), but we thought it might have promoted his trichollitomania so we stopped and the trich did go down (not gone, but much, much less pulling).

 

Thanks again!

T.Anna

Link to post
Share on other sites

Oh my, 24 plus hours in the bathroom. That's more than any person should have to bare. Im so sorry. I would encourage you to see an endocrinologist or someone in the know about the Hashimotos. I myself developed it at age 16, which is rare as you know, and it can bring about horrible mental deficits and psychiatric changes. I also had chronic hives and angiodema and all over body swelling from it. I went undiagnosed for quite some time since no one knew to look for thyroid troubles in a teen. All the doctors thought I was severely allergic to something. IT was finally discovered when a doctor noticed I had a goiter and I complained of feeling chocked when anything even brushed up against my neck.

 

Hashimotos itself is defined by the anti-thyroid peroxidase and anti-thyroglobulan antibodies. These test will indicate if you have an antibody that attacks your own thyroid, which is what Hashimotos really is. Then there are measures of your thyroid hormones which are the Free T3 and Free t4. Its been a while since Ive delved into all of this, but basically your own body attacks the thyroid. When initially under attack the thyroid may appear to be hyper-thyroid for brief periods of time, but then the patient will become hypo-thyroid. (That is an underactive thyroid as opposed to Graves disease where you have an over-active thyroid.) How were his T3 and T4 results? Im assuming he had very high anti-thyroid antibodies and a high SE rate which would show overall inflammation.

 

HE is responsive to steroids, but what I would want to know is does he have Hashimotos or is HE a separate condition? If he truly has Hashimotos, he would need to be on Synthroid, a thyroid replacement to stop the bodies attack on the thyroid. Untreated Hashimotos can cause all kinds of psychiatric and cognitive problems, as I have experienced myself.

 

I'm sure your son is in great hands and getting the best treatment possible. I just couldn't help but wonder if there is underlying thyroid condition that requires treatment, or if HE can be a separate entity. While the Gaia Thyroid supplement is a great support, its not a replacement for the thyroid hormone the body is lacking in your garden variety Hashimotos disease.

 

Keep up the fight T. Anna. One day you will suddenly find yourself on the outside of that tunnel and we will all be be here to cheer!

Link to post
Share on other sites

<<How were his T3 and T4 results?>>

 

These are always within range, which is why endocrinologists say his thyroid is fine. His TSH is super low 0.01, but in the endocrinologist world that is from his encephalitis (not a reflection of thyroid function).

 

Talking to doctor today will ask to re-check on our next blood tests anyway.

 

T.Anna

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...