Jump to content
ACN Latitudes Forums

Introducing myself :) - WARNING LONG


Recommended Posts

  • Replies 31
  • Created
  • Last Reply

Top Posters In This Topic

Welcome, fightingmom! And thanks for your reply to my post. It does sound like our paths are very, very similar. Hang in there, and keep fighting for your son. Along with you, I hope Dr. B is right and that we're finally starting down the path to getting our children well again. I hope your son continues to see improvement on the prednisone and Augmentin. One week after ending the prednisone taper we're still seeing some real improvement in my son, but he's also backslid a bit in terms of irritability, defiance, rage, and tics (but not nearly as bad as pre-Dr. B.)

 

I hope your surgery goes well on Thursday, too. I'll be thinking of you and pulling for you and your family!

 

DeterminedMomVA

Link to comment
Share on other sites

I am seeing a lot of waxing and waning. Last night we had a little fit about turning off his computer at MIDNIGHT...I mean come on, I'm not being unreasonable. (But, his friends apparently don't have limits on that, or so he says) However, this morning he got up on his own again, took the dog out, brushed his teeth, typical routine stuff that lately has become a battle or an argument -- not today though. Also, there have been a few things throughout the day that I have noticed him responding quite well to. Just little things, "have to pick up your room before you go meet your friends" type of stuff that has caused major battles in our house before, but he simply complied with. Though about an hour ago he called me just to sort of pick a fight about something small and that seems to be the only reason he called. So...I'm seeing some stuff, just not that miracle on Friday I had experienced. That was strange. He was wonderful and happy and completely like his old self. Not sure where that came from.

 

Thanks for the well wishes on my surgery, it's my 3rd pelvic/abdominal surgery in 15 months. Getting pretty old. And, I only have 4 days to recover as I have an exam on school Monday morning and my professor is less than sympathetic. Not sure how easy that will be, but oh well.

 

It's recently been suggested by my doc and allergist that we begin to travel the roads to explore autoimmune disorder for me as well. Have been having some very weird symptoms and crazy rashes, allergic reactions to nearly everything, even antibiotics and never had these issues before in my life. Dr. B. asking me about Lyme disease triggered me to dig into that a bit and I was very surprised to see how many of the symptoms I have. Will be interesting to see how the tests come back for both my son and myself.

Edited by fightingmom
Link to comment
Share on other sites

Oh, this is something I have been wondering about for a long time. About a year and a half ago, my son was talking with his older cousin and had disclosed that he takes a lot of advil for headaches. His cousin was smart enough and cared enough to pull me aside and tell me this. I had NO idea he was self medicating with advil. There were times he had headaches and I would give it to him but I did not realize he was taking it on his own. I HAD several bottles, one in each bathroom, one in a kitchen cabinet, etc. -- because I have so many problems with pain from endo, cysts, fibroids, etc. I have taken advil as needed for pain throughout the month and didn't realize it was disappearing any faster because I just grab whatever bottle and take 2 when I need it. WELL....now I am reading all this information on Advil helping with the symptoms and episodes and I wonder if he was subconciously on to something? Maybe it made him feel better in more ways than one. I can honestly say that since I put up all the advil -- and he's no longer giving it to himself, it has been around this time that symptoms exploded even more. The last year has been He##. Things that make you go "hmmm".

Edited by fightingmom
Link to comment
Share on other sites

Sometimes my husband says to me "not everything is PANDAS". Somethings are regular puberty issues . Remember, your son is 14. I think if there was a cure or pill or whatever for teenage attitudes, everyone would be in line to buy it. Don't forget to praise him when he is making good choices. You sure are a fighter for your son....perfect forum name!

Link to comment
Share on other sites

Sometimes my husband says to me "not everything is PANDAS". Somethings are regular puberty issues . Remember, your son is 14. I think if there was a cure or pill or whatever for teenage attitudes, everyone would be in line to buy it. Don't forget to praise him when he is making good choices. You sure are a fighter for your son....perfect forum name!

 

Oh, yes. Totally agree. I shrug off a million attitude like things a day with him because of his age and puberty. But, a lot of the times a simple request - where a certain degree of huffing and puffing or a little snotty comment would be expected at his age - turns into 2-3 hours of major and extreme, door slamming, screaming, temper tantrum fits and him chasing me around the house trying to get things to go his way. No matter how many times I remind him that his argument took far longer then the simple request such as asking him to go through his laundry and give me what needs to washed, etc.

 

Now, that I say all this out loud, I guess we haven't had the real knock down drag on stuff in a few days....so that's probably what you are trying to remind me of. (lightbulb moment :D ) So, with that said, I guess we are seeing some real progress. Thanks!

 

Thanks for the kind words, too. Sometimes I feel like I failed him. I never have given up and I NEVER will, but it's been such a long road with so many doctors and such hard times, I feel horrible we didn't get to this place sooner!

 

How are things coming along at your house? Hope the trip home was uneventful!

Edited by fightingmom
Link to comment
Share on other sites

I'm not sure how things are yet. The 9 & 10 year olds were dx early and are doing well (I always hate to say that out loud) they are on antibiotics only. The 12 year old was on a great recovery until 2 montbs ago. Dr. B thinks it is still the coinfection of mycoplasma that seems to be stubbern and we are trying Cipro starting tonight. Many of us wish we would have figured this out years ago, & wish we "got to this place" sooner, but remember this place didn't exsist years ago. Even the PANDAS doctors are pretty new to all of this. So here we are, all figuring this out together. We will get there because we are not quitters. Sorry about spelling... I am aweful on this iPhone! :) Linda

Edited by 3boysmom
Link to comment
Share on other sites

Glad you found this forum, it is very helpful. I don't post much, but find the information here very helpful. It does sound like you're head down the right path. Some of the behaviors you mentioned so sound much like my child as well. Wishing you the best of luck for recovery.

Link to comment
Share on other sites

Linda, I hope things are looking up today and you are seeing some progress.

 

Jdude, thanks for the well wishes.

 

Today has been an awful day. He got up this morning and was freaking out - insisting that all of his clothes are stained and everything comes out of the washing machine dirty and he's "sick of it". Had a mini melt down before school, changed his clothes a few times and all of them (even though they were just washed) had something wrong with them. Then he refused to take the dog out when he came home from school telling me it is "too bad for me" -- then he decided to go work on a bike project he's had in the shed (that he wanted to order parts and piece together instead of getting a new one like I wanted to from the beginning). Well, apparently, something isn't working to well because he came in the house and came flying into the office to yell in my face that the bike is a piece of crap (I spent $200 on the parts because he wanted to put together his own bmx bike) and it's MY fault. I told him I was sorry he was having a hard time, but I don't know why he's upset with me. Then he told me I was the problem, screamed some more, stomped down the stairs, went back outside and slammed the door. No idea what's going on and feeling very deflated. I'm so tired of being screamed at for nothing.

Edited by fightingmom
Link to comment
Share on other sites

Right after I typed this he had a major melt down. He needs a hair cut, his hair is disgusting, his shoes are falling apart (his words, they seem fine to me)and are disgusting, he has cat fur on his shorts and it's disgusting. Everything is disgusting. This went on for a half hour, then he asked for money for ice cream - I didn't think I had cash and he flipped out saying his friends get money from their parents all the time and why can't he have money. Just give him something. Anything. "He just wants to be normal like everyone else." --- this seems to be the key to what's really bothering him, I'd suspect.

 

Is this OCD? Anxiety? This is more emotional of a meltdown than I am used to. Usually it's more rage, doors slamming, yelling, etc. this time he was crying tears and when I scraped up the money for ice cream from the bottom of my purse (I rarely have cash on hand) he started cried even more and kept apologizing all the way down the stairs. "I'm sorry, I'm sorry" as he walked out the door, he yelled up "I'm sorry" again. I don't know what to do for him??

Edited by fightingmom
Link to comment
Share on other sites

He's been in therapy for 2 years (once a week). Never expressed any of these feelings before. All of a sudden everything he has is crap. I wonder if it's a combo of his symptoms combined with being overwhelmed by the diagnosis. In any case, this is all new as of today...that's why it's weird.

Edited by fightingmom
Link to comment
Share on other sites

He's been in therapy for 2 years (once a week). Never expressed any of these feelings before. All of a sudden everything he has is crap. I wonder if it's a combo of his symptoms combined with being overwhelmed by the diagnosis. In any case, this is all new as of today...that's why it's weird.

 

 

I think he's probably herxing...getting worse before getting better. Probably from the abx, but not necessarily a bad thing. The good thing is that he is crying real tears, and recognizes that he's a mess. I would just keep reassuring him. I know it has also helped my kids when I remind them that it's part of getting better, and that as awful as it feels at that moment, it will pass, and is part of getting better. I can't tell you have many times we have done huge hugs after meltdowns, and also had long laughs at some of the things my DS19 has said during a flair (there's still one that we just brought up again last night...it was absolutely hysterical...wasn't at the time, but afterwards, he said he had no idea why he said it...just blurted it out.)

 

Personally, I think you ought to test him for Lyme and co-infections, too. Herxing is common with lyme, and so many people (not all...I know, I know) on the forum have found that lyme is part of their whole illness. The immune system is really messed up with PANS, so the kids may very well have more than one infection. If it is Lyme, it is important to see a LLMD (Lyme-Literate MD.) You can get more information on the lyme forum, and you can also PM me if you want to.

 

And, many of us are also realizing that we have to treat the immune system as a whole. We, for instance, have been seeing a holistic chiropractor (who tests for and gives us nutritional supplements, and really focuses on the gut and the immune system.) It's important to support as much as you can (in addition to treating the infections.) And....don't forget to take plenty of probiotics to protect his stomach!!! We were told from day 1 to use saccromyces boullardi which can be taken with the abx, but another doc also told us to take an additional one separately from the abx.

Link to comment
Share on other sites

He's been in therapy for 2 years (once a week). Never expressed any of these feelings before. All of a sudden everything he has is crap. I wonder if it's a combo of his symptoms combined with being overwhelmed by the diagnosis. In any case, this is all new as of today...that's why it's weird.

 

 

I think he's probably herxing...getting worse before getting better. Probably from the abx, but not necessarily a bad thing. The good thing is that he is crying real tears, and recognizes that he's a mess. I would just keep reassuring him. I know it has also helped my kids when I remind them that it's part of getting better, and that as awful as it feels at that moment, it will pass, and is part of getting better. I can't tell you have many times we have done huge hugs after meltdowns, and also had long laughs at some of the things my DS19 has said during a flair (there's still one that we just brought up again last night...it was absolutely hysterical...wasn't at the time, but afterwards, he said he had no idea why he said it...just blurted it out.)

 

Personally, I think you ought to test him for Lyme and co-infections, too. Herxing is common with lyme, and so many people (not all...I know, I know) on the forum have found that lyme is part of their whole illness. The immune system is really messed up with PANS, so the kids may very well have more than one infection. If it is Lyme, it is important to see a LLMD (Lyme-Literate MD.) You can get more information on the lyme forum, and you can also PM me if you want to.

 

And, many of us are also realizing that we have to treat the immune system as a whole. We, for instance, have been seeing a holistic chiropractor (who tests for and gives us nutritional supplements, and really focuses on the gut and the immune system.) It's important to support as much as you can (in addition to treating the infections.) And....don't forget to take plenty of probiotics to protect his stomach!!! We were told from day 1 to use saccromyces boullardi which can be taken with the abx, but another doc also told us to take an additional one separately from the abx.

 

Thanks for the advice. I can really use it! I'm not sure what Dr. B. already submitted for testing, but I'm going to assume for now (will find out at our appt in 3 weeks) that he probably tested for Lyme, too. They did about 10+ vials of blood on just me, when they did my son's it was 15/16 I think. Not much left on the lab work form was left empty -- and since he specifically said I should be tested for Lyme based on my symptoms, it seems at least it was on his mind.

 

I have so much to learn, i never would have expected a chiropractor to give nutritional supplements or focus on the gut. Today I woke up with a wicked headache and my nose is a bit stuffy. Wondering if maybe I should run over to the walk in clinic for an xray of my sinuses.

 

Thanks for explaining the herxing thing. i have seen that stated before and had no idea what it meant. I sent a few texts to my son's aunt today, who also has PANDAS/PANS kids and she also said she remembers around the 4th day or so that it got worse and then got better again. Then said after steroids, got real bad again. Just wish there was a smidgen of promise that would give me some hope...these last two days are just sucking.

Edited by fightingmom
Link to comment
Share on other sites

Welcome home.

 

You are in the right place and make perfect sense. My DS 15 (as of 1 week ago) also had most flare ups with sinusitis. Dr. B found the sinus problem 2 years ago and has been our mainstay ever since. It has been a very long road for us, but DS is healthier than ever and I am hopeful he will continue to do well.

 

Keep us posted on your son's progress!

Link to comment
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...