Please help!!!

[sagesavannah]

I don't post much at all, but I really need some help and suggestions with my dd who is almost 11. I'm really not quite sure where to start, as I've never gotten a diagnosis, and now I don't really know where to turn to. We feel like we are at our wits end trying to function with her. I just so desperately need some help but don't know where to start!!

 

Just as a background, she's an only child, somewhat difficult baby, I couldn't out her down ever but had to hold her constantly, she had colic, etc. She didn't start talking till she was past 2 other than 2-3 words, but would point, and when she did it was in complete sentences. She had a super active imagination that I just chalked up to being extremely imaginitave, she had tons if imaginary friends with whole worlds that she would talk about constantly, and names of them all. She did have friends that she got along with and was able to play with, but very talkative and would chatter constantly. She always sounded young for her age, and would kind of talk past you, iykwim... Her gymnastics teacher told me she was in la la land, she had a hard time focusing I thought maye it was ADHD or something.

My dh and I felt that she was just unique and different but adults especially loved her, and she did function pretty normally except for being quirky like this. I wouldn't say its anything hat stood out though.

Fast forward to 8 she got super sick and spent 1 1/2 years in bed with chronic mono, just super sick. It seemed to trigger a whole host of issues that I'm lost to deal with. For about a year now it been living hell!

She started off just getting super ultra sensitive towards things, and very upset f things didn't go her way, and about a year ago she started having major tantrums, raging, things just got indescribably terrible. She would meltdown several times a day, and sometimes get physical, everything would set her over the edge, nothing would alm her down, they would last for hours and she seemed unable to stop or control herself. She just didn't seem like the same person. We did take her to the hospital twice wen these episodes started, we divided not to go te drug route until we figured out what we were dealing with and if things would calm down. They havnt.

 

I have her seeing a natural dr, who is helpin her. She does say her adrenals are shot, an I have her on the GAPS diet, off all grains and dairy.

But none of its really helping.

Te severity of the tantrums are not as bad, and only a couple ones a week, she is extremely obsessive about things, even she recognizes it. She will go from one obsession to the other where that's all she talks about and does. she recognizes it herself. She has a hard time focusing on you, if that makes sense, she's just in her own world it seems. I have to make her stop and repeat and listen. She is constantly moving, constantly, she can not still still, although there are times when she's ultra focused and can be absorbed in something if its her choosing, and its hard to pull her out. Trying to talk with her is difficult as she's dancing all the time...

Trying to get her to do anything is a major battle. She wants to sleep in, and get up when she wants, she argues about absolutely everything, everything bothers her, her clothes, noise. We have major battles over trying to et her out of pajamas. This is not a discipline issue, we've always been very firm with her , but we can not make her do something. No amount of taking away privileges, enforcing consequences works. Nothing works at all on her. Incentives do not work. She is truly miserable and makin a miserable. The kids do not like her as she is intense, and seems to talk about what she wants, but conversely adults love her, she has very good friendships with a lot if adults.

She is class about social cues. She sounds very young sometimes for her age, she is truly only happy being by herself in her own world, either playing outside or dancing. She still talks about her imaginary friends all the time.

 

We have her in ballet 3 times a week. I think he likes it because its repetitive. The girls do not like her and pick on her. She is clueless. She will change and leave her panties on a seat for everyone to see. All the time. She doesn't seem to care or get it. She will be talking to a girl at dance and will tell her about... My dada said... She just is very young. It's like she has age regressed since being sick For Almost 3 years now.

Any ideas?? She is very very bright for her age. She reads a lot. She has written several novels, and is an exceptional writer and artist.

But his other stuff I don't know how to help her.

We basically are getting no school done except for 2 days a week, because she's either sick or because she's ready to have a meltdown. I know sometimes she seems to manipulate the situation to get out of her work. Those days when this happens, nothing gets done. She fights and argues about everything. She doesn't want to dress, do her hair, go outside, go in a field trip, nothing.

She also seems to have a hard time getting things, or understanding something when she's upset. It's like she's a broken record and nothing's computing.

 

What should I do to help? Does she need a diagnosis, are there programs to help?

I'm thinking she has OCD, maybe spd. I have read a lot on Asbergers, and a lot if it fits, but not all, so I really dot know what to think! Any elp would be appreciated.

 

[sagesavannah]

Sorry, I'm terrible at typing on my phone!

[Parrothead]

Yes, she needs a diagnosis. It sounds like she may have multiple issues and is possibly twice exceptional.

 

Sounds like she is very bright, maybe the clothing, noise, etc., is sensory processing disorder, and a few other things going on. I agree not starting meds until you have a firm diagnosis. Get her doctor to start the testing process.

[sagesavannah]

Who would I see to get a diagnosis, and is it even necessary at this age?

Therapist, psychiatrist, psychologist?

Is there therapy for someone her age other than meds? That would be a last resort.

Any ideas of what this could be? I'm very leery of psychiatry, I just want to be cautious.

 

 

[texasmama]

You can take her to a psychologist for a diagnosis. Do your research about one who is experienced with kids. Yes, a diagnosis is helpful because you can't address what you do not understand. I hear some autistic spectrum symptoms in description. These are often comorbid with anxiety and/or ADHD. With a complicated picture, you really do need a professional. You don't have to choose meds now or at all, but getting a diagnosis can inform treatment. The treatment will depend on the diagnosis.

[Lecka]

There is definitely behavioral therapy for her age. I don't know what she would need, but maybe your pediatrician could refer you?

[Tiramisu]

I would start looking around and trying to find the best pediatric psychiatrist or psychologist you can find. I wouldn't be opposed to medication in this case, and I am generally not pro-meds at all. I'm not saying that your dd needs them. I don't know. What you have shared tells me that your dd and your entire family have been SUFFERING for a.long.time. Too long. Sometimes you can't do anything about it (like the mono), and sometimes you can. The problem is, the longer it goes on, the more these negative feelings and dynamics will shape you, all of you as individuals and your relationships. That won't be good. It really won't. A solid diagnosis would be a good first step. That will help you understand her difficulties and it will also help her, because she might really want to know why she's feeling and acting this way. You'll then have a better idea of what your options are.

[herekittykitty]

I would look for a child psychologist and/or a developmental pediatrician to do an evaluation. If you have a children's hospital, that can be a starting place. Aspergers and gifted ness came to mind when reading your description. Aspergers looks different in every kid, and rarely does all of it fit.

[sagesavannah]

I appreciate the elp everyone, and I do agree she needs more help than we can give.

Tiramisu, I also appreciate the thought about working on this so it doesn't affect our relationship. This is just so out of my range, and I feel so helpless. Nothing seems to be working, but I'm honestly hesitant at seeing a professional because I hate to label people, but I think we've reached our limit.

I'm going to make an apt tomorrow, also are there any helpful book suggestions?

Thanks again!

[Tokyomarie]

I agree with Tiramisu about digging to get to the bottom of what's going on and addressing all issues- medical, emotional/behavioral, and learning- before much more time goes by because of how these things shape the whole family experience. When they get identified and addressed in the best way possible, the family begins to move from operating in constant crisis/firefighting mode to being able to handle difficulties from a position of knowledge and strength.

 

What I see in your description is a child who has struggled with certain issues from a young age who has had a dramatic medical illness superimposed upon those difficulties. It appears that there has been a serious worsening of neuro/sensory/behavioral symptoms since the onset of the "mono." One of the things I get suspicious about when I see a person who has been debilitated for so long physcially and is having nervous system symptoms is the possibility that the child has bee exposed to the bacteria that causes Lyme Disease. If you live in the mid-Atlantic or Northeast regions, consider your family at doubly high risk for exposure to Lyme Disease. Does your daughter have a history of known tick bites or of playing in areas where she could get exposed to ticks easily?

 

Because of your daughter's medical history, I would suggest starting with a developmental pediatrician and/or a neurologist to try to sort this out. Often, without such a medical history, I would recommend starting with a neuropsychologist, but I think you need someone who can put the medical pieces together with the learning and behavioral pieces.

 

I know the feeling of being overwhelmed when a child is not functioning well for whatever reason. I also know the immense relief when the puzzle begins to come together and treatments targeted towards the specific problems that have been identified- whether medical, behavioral, or learning- begin to make a difference in a child's life. For me, getting answers that made sense and having people who knew how to help come alongside were more important than any stigma attached to labels. Sometimes, when a situation is complex, it does take awhile to find the right professionals to be on your "team." Every professional's area of expertise is different so don't be surprised if you have to try more than one person before the puzzle starts coming together.

[itsheresomewhere]

Just a thought but PANDAS comes to mind since her illness (some research is saying it is not just caused by strep).

[sagesavannah]

Paradox5- Really?? That is unusual. Ive done some intensive reservh on an illness like mono and how it affects the brain. is there any way tou can find out what your friends son has or maybe see if shed be willing to be put in touch with me through email?

I really think there may have been issues prior but she is just not the same, I don't know if its from the illness or having underlining issues and the mono has brought those issues to the forefront. She's like a different person, but spending so much time sick does something to your psyche as well so I wonder how much has to do w illness and how much was going to come about anyways?

As for Lyme, we live in SC. I thought of that but my dr said its very unlikely as there's very few cases here. I know she's had tick bites though... Should I check for something?

 

[Tokyomarie]

Your doctor is right that the relative risk of being exposed to Lyme Disease in SC is quite low. But do consider your travel history. If you have ever traveled to an endemic location prior to your daughter's illness (especially within one year prior) during the spring, summer, or fall months, you can't rule out possible exposure. Blood tests to demonstrate exposure are not as accurate as many doctors want patients to believe. There are two types of antibody tests and the CDC recommends a 2-step approach, first the ELISA and if the ELISA is positive or equivocal, then a Western Blot. The trouble is, many patients who are ill will test negative on the ELISA, but when they are tested by a willing physician with a Western Blot anyway will either test positive or show some of the key bands that indicate exposure to Borrelia bacteria.

 

The poster who suggested PANDAS also has a point.

 

I am not as familiar with severe responses to mono, but infectious illnesses can and do drive immune system responses that include inflammatory responses affecting the brain.

[sagesavannah]

Oh my goodness, I have been reading up on Pandas like crazy and it completely describes what we've gone through with my daughter in the last year!!

She basically developed these extreme symptoms within a couple weeks. Does anyone have any experience dealing with this? I have a all to a specialist and am waiting to hear back from them.

Thanks for all the help!

[Tiramisu]

I thing there's a board member who can help with what tests to ask for. Take a look at the thread below and think about contacting sbgrace.

 

http://forums.welltrainedmind.com/topic/453003-7-yo-son-displaying-ocd/page__hl__+pandas?do=findComment&comment=4671236

[Tiramisu]

Your doctor is right that the relative risk of being exposed to Lyme Disease in SC is quite low. But do consider your travel history. If you have ever traveled to an endemic location prior to your daughter's illness (especially within one year prior) during the spring, summer, or fall months, you can't rule out possible exposure. Blood tests to demonstrate exposure are not as accurate as many doctors want patients to believe. There are two types of antibody tests and the CDC recommends a 2-step approach, first the ELISA and if the ELISA is positive or equivocal, then a Western Blot. The trouble is, many patients who are ill will test negative on the ELISA, but when they are tested by a willing physician with a Western Blot anyway will either test positive or show some of the key bands that indicate exposure to Borrelia bacteria.

 

The poster who suggested PANDAS also has a point.

 

I am not as familiar with severe responses to mono, but infectious illnesses can and do drive immune system responses that include inflammatory responses affecting the brain.

 

 

It makes total sense to me that other infections can do what PANDAS does. PANDAS, I think, is an autoimmune condition triggered by strep. If one bacteria could do it, why not others, and why not a virus?

[Scoobymummy]

Oh my goodness, I have been reading up on Pandas like crazy and it completely describes what we've gone through with my daughter in the last year!!

She basically developed these extreme symptoms within a couple weeks. Does anyone have any experience dealing with this? I have a all to a specialist and am waiting to hear back from them.

Thanks for all the help!

 

Our ped suspects my son has PANDAS - although we didn't experience sudden onset. Like your daughter, my son was always different - definite sensory issues, needing to be on me all the time, extreme tantrums, issues with perseveration. We've been searching for a LONG time for answers. PANDAS is not a perfect fit (for example, I have a lot of the same symptoms as my ds, but I obviously can't be said to have a pediatric illness lol), but my son and I both have tested positive for strep antibodies in our blood stream. What I think is that we both have some under-lying auto-immune problem, mixed in with genetic learning disabilities (or maybe the ld's are just part and parcle of the auto-immune) and when strep was added to the mix, it just made things worse. He's doing his second PANDAS treatment - a strong antibiotic for 7 days and then 3 times a week until we're well past the winter/strep season. We'll likely have to do this until he hits puberty. The antibiotic he's on is azithromycin.

 

My son's symptoms are: extreme sensitivity to weather changes (muscle knots - like fibromyalgia - up and down his back and shoulders, headaches, foggy brain, fatigue, inability to focus or manage, some ocd (can't get thoughts out of his head) and some stuttering. I can deal with most of it, but the feeling like junk every other day is wearing - really hard to address the learning issues when he can't think clearly 3 out of 5 days. I have the same symptoms, so I'm kind of hoping that my blood work shows elevated strep - might point to some answers. We're lucky that his symptoms are mild compared to other children I've read about who suffer from PANDAS or Lyme. We've done a lot with diet over the years and supplements and, although definitely far from a cure, I think it's helped some.

 

I would find a DAN (defeat autism now) doctor - a doctor who treats autism spectrum disorders with alternative methods. We chose to go this route, not because our son is autistic, but because he's somewhere on that spectrum and a lot of the issues that autistic kids struggle with are similar to kids who struggle with learning disabilities, autoimmune disorders, etc. Our DAN doctor is really open to naturopathy. She uses vitamins, alternative treatments (some of it I even find way out there), but also medication. Kind of the best of both worlds.

 

Sorry, no definitive answers for you, just commiseration. Hugs and all the best to you on this journey.

[lea1]

Oh my goodness, I have been reading up on Pandas like crazy and it completely describes what we've gone through with my daughter in the last year!!

She basically developed these extreme symptoms within a couple weeks. Does anyone have any experience dealing with this? I have a all to a specialist and am waiting to hear back from them.

Thanks for all the help!

 

 

That was me that started the other thread about my 7 YO son having OCD. I have been researching OCD and PANDAS a lot lately because of this. I was reading your thread and all of your daughter's symptoms and thinking it sounds very much like what I have been reading about.

 

Make sure you find someone who specializes in treating OCD in children. After waiting 2 weeks, we finally went in today to see a child psychologist only to find out that she had never treated this before and thought we needed to find someone who had (we agreed). Anyway, we wasted a couple of weeks waiting for this appointment and now the next appointment we can get with the only other available child psychologist is at the end of March. Very frustrating. Thankfully we also have an appointment with a child psychiatrist in a couple of weeks so maybe we will learn something from that.

 

I hope you find the help she needs. I'm sorry you are all going through this.

[Heathermomster]

Hugs to you and your family...

[CatholicMom]

I would definitely get a diagnosis, asap. I'm sure others can point you toward where to start. I would probably tell the whole story to your pediatrician and ask them to recommend a specialist in your area. Definitely mention the mono issue and all that you've said here. Another thing to think about is that being 11 yrs old, she is probably having a lot of hormones raging right now (might start menstruating soon, etc). I'm sure that can exacerbate her emotional issues. Anyway, I just wanted to confirm that all of this sounds serious and she could have a physical problem for all you know. Sounds like a lot of testing & talking to professionals is needed. Hope you make some headway! I definitely wouldn't wait as the way others see her, the way she sees herself, and your family's well-being are all at stake.

[nevergiveup]

If she has been on antibiotics, yeast may be an issue. It can cause all sorts of nasty side effects.

[hunterhomeschool]

To follow up on the comment of yeast issues above (that is an issue with my autistic son), one treatment that helps reduce the yeast population is pro-biotics which are available in grain-free dairy-free chewable tablets that most kids will accept willingly. As another mother said PANDAS came to mind, and to my mind also Autism Spectrum Disorder of some kind and both would be worth having checked out. Some kids with autism disorders are just late bloomers in speech and then remain "quirky" as you mention. Kids on the Autism Spectrum often get sick a lot, have weaker immunity than other children their age and have frequent behavioral meltdowns.

 

YES... explore some of these paths various moms have suggested toward reaching a a diagnosis for her. Knowing what your dealing with is often half of the battle, knowing what the problem is can lead you in the right direction to work through it and get to a better place. It is really difficult to find ways to help your child if you aren't sure where to look. Once you know where to look, you usually find several helpful items fairly quickly that gives you a good start while you are doing more research.