worst mother~ME What am I doing wrong?

[Guest guest]

HI Darlene,

 

I understand  your pain. Does he have ABA or one to one aide at school?

 

lie

From: Darlene McBride <darlenemc326@...>

Subject: [ ] Re: worst mother~ME What am I doing wrong?

Date: Monday, September 22, 2008, 11:42 AM

Hi Darlene and cyber hugs to you from me, another Darlene :-)

Our children have ups and downs just like everyone else - if he has

been in a good place before, he will get there again.

He has to take his supplements - if you need to use a bulb syringe

and put in his mouth for a while, then you have to - no one wants to

do that, but just think of it as medicine your sick child needs. Or

try putting it in 1/2 juice 1/2 water in a few different settings -

not just all at once or twice a day. We break things down 4 times a

day between 2 watered down juice boxes (so as not to see

the " floaters " or oil slick) and two hemp milk/dari-free sippy cups.

I know there's a lot of information on the Kirkman site about how to

hide supplements as well - you might want to look there.

If this regression is since his stomach flu - did he have any

medications at that time, such as antibiotics? I know my son had a

bad regression following antibiotics for an ear infection - I fought

so long to not give them, but I ended up HAVING to. it took us a

good few months to get back to where he was. If that is the case,

try upping your probiotics and really do an active yeast protocol.

Take care of you too - your son needs you as his advocate and if you

get yourself sick or so stressed out, you cannot be his helper.

Taking care of you is taking care of him.

Love him and know he is going to get back.

Darlene

>

> I am at my lowest now, as I feel like the worst mother ever. I

> think my little guy is regressing & I don't know how to stop it!!!

> I thought we were doing so well, we do IV chelation, supps,

> magnapro, NFB, PK, ozone, some HBOT & we were doing B12 shots.

> So this is was has transpired in the past few months: Bad stomach

> flu, stopped taking supps, I have been able to get him to take some

> of them, but others he will just not take (I try to hide in juice)

> (IDEAS PLEASE)! School started, boy that has been an eye opener

for

> me, like I said I thought he was doing great, but he does not even

> participate in school in any way, this has me SOOOOO DEPRESSED!

> Sometimes I walk into the calssroom & he is off to the side by

> himself, I know they can't engage him the whole time he is in

class,

> but it has my heart so broken.

>

> We do see a DAN, but I am having trouble even getting them to read

> all the tests & tell me what we need to tweek or change...I CAN NOT

> WAIT! he is going to be 6 in six months, it has me so sick to my

> stomach. I wish I had someone near me or that will come to me &

> TELL ME what i am doing WRONG, translate these test, look at him,

> really someone to just HELP ME GET HIM BACK ON TRACK!!! Is their

> such a person, will someone come out & help me...? I just don't

know

> what I am soing it seems!

>

> I asked our DAN about other supps & these ideas are always shot

> down, I am desperate here! I want my little guy BETTER TODAY~NOW!

>

> Sorry for just going one like this, but I know someone out there

> will know what to do! I also, know that my thoughts are all over

> the place I hope this makes sense I probably even have some words

> mispelled.

>

> Blessings~

> Darlene

>

[Guest guest]

I have heard of some kids regressing after HBOT if they have virus

things going on like Lyme's virus or PANDAS virus or other viral things

going on. Sorry to hear you are having a hard time. This is so

complicating at times and each of our kids is so different. The

doctors themselves do not always know what is going on. Is is often

left to the parent or parents to research and decide what next. Very

frustrating and tiring but hang in there we are all here to help you,

listen to you and support you in anyway we can.

Kay

[Guest guest]

DArlene

 

You are not a bad mother!!

 

My daughter had a bad case of the stomach flu in July and has not been the same

since. She is very OCD now. She used to love to ride her bike. She would not

ride after the flu let alone get off our front porch. Very whiny, clingy.

Stopped sleeping in her bed. She 

would move her pillow to the floor and sleep there. Had trouble falling asleep

even with melatonin. Extremely whiny and cried easily. She would say 'Mom don't

go' or 'Mom come back' and I am standing next to her. I suspected we were

fighting a PANDAS strep infection. I am treating her with OLE now for 2 weeks.

She is riding her bike again and sleeping better. She is still very whiny and

cries at the drop of a hat but she is getting better slowly.

here is some info so you can research for yourself.  Hope it helps.

 

April

 

PANDAS, is an abbreviation for Pediatric Autoimmune

> Neuropsychiatric Disorders Associated with Streptococcal

Infections.

> The term is used to describe a subset of children who have

Obsessive

> Compulsive Disorder (OCD) and/or tic disorders such as

Tourette's

> Syndrome, and in whom symptoms worsen following strep.

infections

> such as " Strep throat " and Scarlet Fever.

> >

> > The children usually have dramatic, " overnight " onset of

symptoms,

> including motor or vocal tics, obsessions, and/or compulsions.

In

> addition to these symptoms, children may also become moody,

> irritable or show concerns about separating from parents or

loved

> ones. This abrupt onset is generally preceeded by a Strep.

throat

> infection.

> >

> > PANDAS is similar to that of Rheumatic Fever, an autoimmune

> disorder triggered by strep. throat infections. In every

bacterial

> infection, the body produces antibodies against the invading

> bacteria, and the antibodies help eliminate the bacteria from

the

> body. However in Rheumatic Fever, the antibodies mistakenly

> recognize and " attack " the heart valves, joints, and/or certain

> parts of the brain. This phenomenon is called " molecular

mimicry " ,

> which means that proteins on the cell wall of the strep.

bacteria

> are similar in some way to the proteins of the heart valve,

joints,

> or brain

> >

> > One part of the brain that is affected in PANDAS is the Basal

> Ganglia, which is believed to be responsible for movement and

> behavior. Thus, the antibodies interact with the brain to cause

tics

> and/or OCD

> >

> > clinicians use 5 diagnostic criteria for the diagnosis of

PANDAS

> (see below). At the present time the clinical features of the

> illness are the only means of determining whether or not a child

> might have PANDAS.

> >

> > Q. What are the diagnostic criteria for PANDAS?

> >

> > A. They are:

> >

> > 1.. Presence of Obsessive-compulsive disorder and/or a tic

> disorder

> > 2.. Pediatric onset of symptoms (age 3 years to puberty)

> > 3.. Episodic course of symptom severity

> > 4.. Association with group A Beta-hemolytic streptococcal

> infection (a positive throat culture for strep. or history of

> Scarlet Fever.)

> > 5.. Association with neurological abnormalities (motoric

> hyperactivity, or adventitious movements, such as choreiform

> movements)

> > Q. What is an episodic course of symptoms?

> >

> > A. Children with PANDAS seem to have dramatic ups and downs in

> their OCD and/or tic severity. Tics or OCD which are almost

always

> present at a relatively consistent level do not represent an

> episodic course. Many kids with OCD or tics have good days and

bad

> days, or even good weeks and bad weeks. However, patients with

> PANDAS have a very sudden onset or worsening of their symptoms,

> followed by a slow, gradual improvement. If they get another

strep.

> infection, their symptoms suddenly worsen again. The increased

> symptom severity usually persists for at least several weeks,

but

> may last for several months or longer. The tics or OCD then seem

to

> gradually fade away, and the children often enjoy a few weeks or

> several months without problems. When they have another strep.

> throat infection the tics or OCD return just as suddenly and

> dramatically as they did previously.

> >

> > Q. Are there any other symptoms associated with PANDAS

episodes?

> >

> > A. Yes. Children with PANDAS often experience one or more of

the

> following symptoms in conjunction with their OCD and/or tics:

> > 1.. ADHD symptoms (hyperactivity, inattention, fidgety)

> > 2.. Separation anxiety (Child is " clingy " and has difficulty

> separating from his/her caregivers. For example, the child may

not

> want to be in a different room in the house from his/her

parents.)

> > 3.. Mood changes (irritability, sadness, emotional lability)

> > 4.. Sleep disturbance

> > 5.. Night- time bed wetting and/or day- time urinary frequency

> > 6.. Fine/gross motor changes (e.g. changes in handwriting)

> > 7.. Joint pains

> > here is another list from another site

> >

> > Red flags

> > The biggest difference between regular OCD and PANDAS OCD is

the

> sudden onset. OCD usually develops slowly over weeks, months or

even

> years; however, PANDAS OCD seems to come out of the blue with

> parents saying one day their child woke up a different kid.

There

> are also other symptoms that help differentiate the 2 types of

OCD.

> PANDAS OCD is also characterized by:

> >

> > a.. Choreiform movements: involuntary or irregular writhing

> movements of the legs, arm or face

> > b.. Presence of tics and/or hyperactivity

> > c.. Irritability, temper tantrums, or mood lability

> > d.. Nighttime difficulties

> > e.. Severe nightmares and new bedtime rituals or fears

> > f.. Separation anxiety

> > g.. Age regression: going back to younger developmental stage

> > h.. New handwriting problems, loss of math skills, sensory

> sensitivities

> >

> >

> > Q. My child has had strep. throat before, and he has tics

and/or

> OCD. Does that mean he has PANDAS?

> >

> > A. No. Many children have OCD and/or tics, and almost all

school

> aged children get strep. throat at some point in their lives. In

> fact, the average grade-school student will have 2 - 3 strep.

throat

> infections each year. PANDAS is considered when there is a very

> close relationship between the abrupt onset or worsening or OCD

> and/or tics, and a preceding strep. infection. If strep. is

found in

> conjunction with two or three episodes of OCD/tics, then it may

be

> that the child has PANDAS

> >

> > What to do if you suspect your child has PANDAS

> >

> > a.. Contact your pediatrician. Advocate for your child by

being

> clear about what you want your doctor to do. In some cases, you

may

> have to find a sympathetic doctor who is willing to learn about

> PANDAS. The PANDAS Clinic at NIMH may be willing to consult with

> doctors.

> > b.. Have your pediatrician do a throat culture of group A B-

> hemolytic strep. Ask that the specimen be cultured, not just the

> rapid test.

> > c.. Your doctor may also do a blood test to assess elevated

> streptococcal antibodies (Anti-DNAse B and Antistreptolysin

titers

> (ASO)).

> > d.. You and/or your doctor can get information and treatment

> guidelines from the National Institute of Mental Health

> (www.nih.gov); type in PANDAS to access the appropriate link.

> > e.. Contact the OC Foundation to help locate an expert in OCD

in

> your area.

> > f.. Have your child retested if there is a resurgence in OCD

> symptoms.

> > yes my son and best friend both have PANDAS< my son had

scarlet

> fever and strep throat and deteriorated what felt like over

night

> almost 2 years ago, which we have then seen a pattern with 3

other

> episodes, which gives him the dx of PANDAS, he gets very OCD

over

> letter and turns extreamly hyperlexic, his hand writting goes,

he

> has melt downs over nothings, lots of tantrums, gets mean and

will

> hurt his sisters for no reason ect. my aspie friend well get

really

> depressed, and emotional, have melt downs, becomes

unfunctionable,

> her immune system crashes and she will over night new allergies

to

> the place she can bearly eat. (she is an adult and it looks a

bit

> different) she was previously dxed with tourettes which I pushed

> her to get tested as I saw it come and go like my son with his

> PANDAS flares and sure enough she tested possitive, so now with

> treatment OLE (olive leaf extract) she is tic free as well. she

has

> the history of tons of strep infection as a child and being on

> spectrum as well but wasn't caught till this last year. so her

> peices are coming together now.

> >