Arrrgghh, so many questions

[kailey47]

Hi All,

I stumbled upon this site whilst researching some of my concerns online. I am on a rollercoaster ride of something's not right to maybe I'm imagining it to she's fine and back again with my just 5yr old daughter (H). So I will give you the background, your advice, experience, idea's etc would be much appreciated. We have some diagnosis issues already, but for the last 3 years I have just felt that there is something not quite right, and though some things have improved dramatically overall I am more convinced something is not right. I think part of the problem is overlapping issues and my oldest daughter (K) 7yr old seemed perfectly typical until 3/4, she is now diagnosis as ADD, Anxiety Disorder & sensory processing disorder (SPD) (she also has a high IQ, adjusted score for her diagnosis has her as gifted) so maybe I am just expecting the wrong things from H. We use diet (additive free), Occupational Therapist (OT) & behaviourial therapy for K, so I do apply what I know from these things on H as well.

H is a very sweet, affectionate, curious & happy child, when she is getting what she wants and stimulated she is a dream. She was full term natural birth. Other than Hypertension (in me) & severe morning sickness there were no issues or complications for pregnancy or birth. We had major issues getting her to feed for the first month, at first we thought it was reflux (K had silent reflux) but soon worked out it was dairy intolerence (not lactose) after that she was an easy baby, slept well, ate well, developed well though at the later end of normal for most things. At around 11 months she started getting regularly ill, nothing overly serious just constant (more than the average) by 18 months she was hospitalised and diagnosis with C. Difficile (bateria inbalance) She also started putting things in her nose constantly and we made many a trip to the dr/hospital to get the latest thing out as they were usually shoved so far up it needed medical attention. She used to rip her hair out regularly, though this was sensory and has eased, but she still has a lot of sensory issues (as you'll probably notice below). She also has a mild speech delay, she can not make c/k or t sounds (at any point in the word)

At 2 she was diagnosis as severely longsighted, she has had glasses ever since. Each 6 months she is retested and scripts changed to adjust. Her vision has not improved at all, infact its gotten worse essentially. She now appears to have lazy eye and hence no depth perception. We are waiting to see the opthamologist to work out best next step.

Her dairy intolerence seemed to have gone away, but we are not so sure now. When she was 3 I was very concerned about her eating habits, they were excessive. She was eating more than most adults, had severe bloating but not gaining weight. We got an endoscopy and they found she had chronic giardia (basically what happens after an acute bout if some of the parasites are not expelled, they take all the nutrients but don't cause vomitting/diarrhea symptoms) The doctors put everything down to this and felt there was no need to explore intolerences. Her bloating has never gone away (we have trialled going off dairy and it helps but does not eliminate the problem) she still eats excessively (but has times of barely eating, really don't know if it is due to growth spurts or not) Her bloating is pretty extreme, and her tummy differs by 8cm morning to night (sometimes more). She gets a rash around her mouth regularly too.

She has always been a child that needed/wanted alot of attention otherwise she would be "into things" even if she knew it was wrong she would do it, but it always seemed like she couldn't help herself. I put it down to age. She is now five and if anything it has gotten worse some examples are she will always empty out shampoo/conditioner bottles if left in sight, she can not use soap with out squishing it into pieces, she will constantly unroll the toilet paper roll and leave it on the floor, we regularly find bite marks out of food in the fridge (like cheese, chocolate, fruit), She breaks things all the time (accidentally), she is always to rough with animals (more that she is too affectionate and just doesn't seem to understand she is hurting them), she rips crayon wrappers off crayons even when told not to over and over (she can't stop herself), talks for the sake of talking, doesn't seem to hear/understand alot of the time. And a million other things on a daily basis. Basically if you leave her alone you can guarantee she will get into something. We have tried reward charts, time outs, taking things away, talking, explaing etc etc. When we ask her why we are angry, upset etc she can most time tell us why and understands that what she has done is wrong. She will promise to never do it again or try harder etc but usually that same day or very soon after she is doing it again and will repeat the I'm sorry and I wont do it again. She avoids things likem cleaning her room (I know all kids do) but she will go to the extreme of putting herself to bed instead of cleaning (even if it is 1 hour after she got up) if you sit in her room and tell her step by step what to do, like pick that top up put it on the 2nd shelf. Pick the pony up put it in the toy box she will eventually do it, but with whinging etc. We have tried removing everything from her room, but although she gets upset she doesn't make any changes. Tried positive re-inforcement etc.

She is a lot better at school, though has issues with personal space (invading others). I know school is better for her as it is constant stimulation, she is also in a class with some very disruptive/time-consuming students so I think she isn't as hard to deal with if that makes sense.

We have seen a child counsellor (was useless), speech pathologist (diagnosis the speech delay, doing exercises etc), Occupational Therapist (diagnosis sensory processing disorder, was through public system though and we are no longer able to access as she is not severe enough, on waiting list to see a private one), Pead's one that specialises in Behaviourial disorders, he said he is not sure yet but wouldn't be surprised by ADHD/ADD diagnosis but at same time wouldn't be surprised if she didn't get diagnosis either. Another pead that specialises in Gastrointestinal disorders, he diagnosis the Giardia, I am seeing GP next week to get a referal to go back about intolerence concerns.

Sorry it so long, but felt I had to explain all the issues so you got a full picture. Basically I just feel that something is not right, she is a bright young girl and it is obvious to me she is trying to be good but just can't seem to help herself, this opinion is shared by friends and family members (well the ones whose opinion I care about) I am constantly wondering if I am just expecting too much of her, or if it's just her personality but then something happens and I just know it's more than that.

 

[TeDo]

Given the impulsiveness, sensory issues, speech delays, social awkwardness, etc.... have you looked into possible Autism Spectrum Disorders? That would also explain the ADHD/ADD symptoms and her "knowing" what she did wrong but not being able to stop it. Just a thought.


Welcome to our little corner of the world. You have definitely come to the right place for support, advice, strategies, etc. There isn't anything that someone (or more than one) have not been through.

 

[keista]

Welcome and ditto TeDo. I was thinking along the same lines. And although you didn't go into K too much because you've got a "handle" on her issues, she may be in the same place. It's just a hunch, but ADD, Anxiety Disorder & sensory processing disorder (SPD) seem to be a very common symptom set for ASDs.

The "getting into stuff" brought back *fond* memories. DD1 LOVED powdery stuff. Corn starch, flour, her sister's formula (that made me nuts because it was so expensive!) I had always thought it impossible to make those toilet paper mazes through a house like they show on TV. Enter DD1. It was pretty cool! Of course the memory is nice than dealing with it in the moment.

 

[buddy]

Hi and welcome, you listed so many symptoms that are associated with autism spectrum disorders that I would agree....find a child development clinic or neuropsychologist who specializes in autism. People who only sometimes work with kids on the spectrum can really miss it and just diagnosis the symptoms and miss the big umbrella diagnosis that things like adhd plus ODD plus sensory issues plus repeated behaviors plus tummy and or sleep issues can add up to.

Have you ever looked at gluten as a possible cause of issues for her? Gluten-wheat) and dairy sensitivities are often associated with not only physical discomfort but behavioral issues. Certainly if she has always had problems it would be something to investigate I suppose.

You are checking into many things and even your older child I wonder (again the individual diagnosis when added up issue) about being on the autism spectrum....

Since it is now known to be genetically influenced, we now see that there is often more than one person in a family who is on the spectrum, though they can LOOK very, very different in terms of specific symptoms and how much the autism interferes with their lives.

Welcome to the group here, there are more who will come along with other perspectives too.... Let us know how things are going or just come and vent whenever you feel the need, OK??? Trust me, we do understand how hard the journey can be!!!

 

[kailey47]

Thanks everyone, I haven't considered Autism Spectrum Disorders (ASD) before, but not because I am not aware of it. Although the girls definitely have some Autism Spectrum Disorders (ASD) traits, I don't think they really fit the spectrum. K is socially very good, she picks up on social cues better than most kids (better than alot of adults honestly), easily makes friends and fits into many different social groups easily. It sometimes takes her a bit to come out of her shell, but she always does.

H is less apt at social cues, you've made me consider Aspergers possibly but I still don't really see it. I wouldn't say she is socially awkward (she is actually incredibly social) but has no concept of personal space, I have wondered if this is related to her lack of depth perception. I have quite a few friends with kids on the spectrum and have worked with a few people on the spectrum. So I understand Autism Spectrum Disorders (ASD) presents differently in every person. My understanding is the one common factor is social difficulty and the girls don't seem to have any trouble there.

Having said all that I am open to getting it checked out, I would rather know the exact cause of the girls issues so I can deal with them more effectively.

I have definitely looked into Gluten/Wheat Intolerance and believe it is a strong possibility, as I know it's more than dairy. I questioned it when the Giarda was found, but was told it wasn't cealiacs. I know you can have wheat or gluten intolerence without having cealiacs, so want to get them to look further into it. The pead that specialises in behaviourial issues actually said that he feels her digestive issues could be heavily contributing to her behaviours. He said to get that sorted first and see if the behaviours improve. Just got to convince someone that her intolerences are real.

It's definitely given me something else to think about. Thankyou

 

[TeDo]

Kailey, you just described both of my difficult child's almost to a T. Definitely look into it. Both of mine are VERY social and do well, depending on who they are interacting with. The more they know the people, the less likely anyone would notice they have issues with social situations. That is why many professionals have difficulty diagnosing. Even they have pre-conceived ideas about every aspect of Autism Spectrum Disorders (ASD) that don't hold for ALL kids. When you've seen one kid on the spectrum, you've seen ONE kid on the spectrum. That's why it's a spectrum. My two boys couldn't be more dissimilar yet they are both on the spectrum. difficult child 1 doesn't like touch but difficult child 2 does not recognize or respect personal space. difficult child 1 is more shy in new situations but difficult child 2 is more outgoing. Do you Know what I mean??

 

[Ktllc]

I hear your frustration knowing something is wrong and not finding the right professional to validate it and put a plan together. My son has bit and pieces of diagnosis, but I also feel we are missing the bigger picture.
What can also be hard is the variability of our difficult children. They are always changing and their issues vary in intensity from time to time.
For the food intolerance, you really don't need to have a doctor on board in order to experiment new diets. Partner has (had, seems to do A LOT better these past 6 months) severe GERD and was hospitalized over it. He was not able to be medication free until I eliminate dairy from his diet (although GI specialist swore that dairy had nothing to do with it). For years, everything was cooked from scratch, all natural ingredients, water, almond milk or apple juice for drinks, etc...
Did the doctor recomment to be that drastic? No. But that's what allowed him to be medications free.
Is there any neuro psychiatric or complete psycho evaluation in your area?? That might give you some more answers.
Hang in there. Keep diging and ask the forum LOTS of questions.
Welcome!

 

[Giulia]

Hello,
Welcome in board and sorry you needed to find us.

My only answer to your question is that physical and neuropsychologist conditions can cohabit together on the same person (a short sign line you can see in the bottom of my message will tell you better than a long explanation).
So it's not contradictory to have giardia and ADHD diagnosis. As it's not contradictory to have ADHD and hearing/sight impairment....

If I were you, I would also see if there are sensory impairments, as it can fuel the sensory integration disorder.
Even if your child does not hear/see from one side, the more you get help from this problem, the more you'll be able to concentrate on the neuropsychologist aspect. It's not because it's "only one side" that it's nothing.

Also, another point that I won't never ever stress enough, even if I need to exhaust myself LOL
Don't rely on how much medication your child needs to assess the condition's severity, because it can be very misleading (sorry Insane to insist on this point, but I see too many persons being trapped about it, even physicians. So reminding this aspect is, in my eyes, very important).
Your child can have very severe symptoms but well controlled with tiny dose of medication, whereas another person may need a huge amount of medicines to control mild symptoms.
In my case, my ADHD symptoms are very impairing but as weird as it seems, it is well controlled with only 18mg of Concerta a day. If I don't take my Concerta, anyone can see how severe are my symptoms. And even doctors are amazed how such a tiny dose can control (very) severe symptoms in my case.
It's not a matter of symptoms' severity, but it's a matter of individual sensitivity. Each individual has a different sensitivity to medicines, some will be very sensitive and some will be very resistant to medicines.
It depends not only on the person's height and weight, but you can be very sensitive to medicines while being overweight and you can be very resistant while you're very thin. Height and weight are only a parameter, but it doesn't make all of this.
This problem of sensitivity can also explain why a person does well with a fast acting release while she does very poorly on an extended release, with the same molecule.
Ok, I am not an expert in pharmacokynetics, but these hints are so important and not enough stressed to patients.
Sorry if it seems or it is Occupational Therapist (OT).



Take care

 

[InsaneCdn]

He said to get that sorted first and see if the behaviours improve. Just got to convince someone that her intolerences are real.

With intolerances? There isn't anybody to convince but yourself.
Do your own research.
Slowly try taking things out of her diet.
If her behavior or other indicators improve... keep that change in, then keep looking.
Once YOU know what her intolerances are, then you can (maybe) get some support.
Oh... and if you're trying this kind of stuff? Document, document, document. Keep track of what you try, for how long, and the results...

 

[kailey47]

Well I have been incredibly busy the last couple of days. K ended up having a gastro bug yesterday so I got to spend the day at home and spent it researching local services and phoning a million places talking to the staff trying to find the right fit. I live in a smaller city where services are limited, and I have found that a major hurdle and my only real success so far has been when I have managed to find visiting specialists.

I finally found an allied health centre that has psychiatric, Speech, Occupational Therapist (OT) all in the same place and they work on a holistic approach instead of treating their own little bit seperately. I feel this will be a huge benefit to H as she has so many overlapping issues. I have found a visiting allergy clinic that works with intolerences and helps you with diet etc. After talking to all of them I feel pretty confident we are on the same page and I am impressed at how in depth their initial forms are. Obviously until you sit down with them you can't know for sure, but so far I am happy it is the right path. They are all aware that I am over the run around and want to be taken seriously.

I have also spoken to Vision Australia (our support for low vision/blindness in Australia) and found out we may be entitled to help due to H's significant vision impairment. I am not sure why it never occured to me before to check this out, but it would be nice to get some help for once. Hopefully they will also be able to help us distinguish what is due to her vision and what is due to something else.

One major hurdle I have is that I have a few chronic health issues myself and a partner who is away alot for work. So everything tends to fall on my shoulders which at times I just can't handle. Also dealing with his families inability to accept there are problems and total lack of respect for our rules (additive free diet etc). I talked to me ex sister in law (partners side of the family) and it turns out she is currently in the process of getting both my niece & nephew assessed (started as sensory issues, but psychiatric believes they may be on the spectrum) So maybe there is more to it that has just not been picked up before.

Thanks again for all your replies, it has been a refereshing change to hear people understand where I am coming from instead of telling me they are fine and not to worry. I know people mean well but it so damn frustrating when your concerns are ignored or brushed aside.

Cheers

 

[Ktllc]

I am glad you have a plan and might be getting help soon. I myself can't hear "don't worry, he'll be fine" anymore either!
Keep us posted.

 

[kailey47]

ok now I am worried again, after seeing the GP today we realised she has only gained 1kg in a year. So last night I plotted her height, weight & head circumference on an online growth chart. I used all the measurements I have had since birth (missing quite a few between 1 & 4, but it still shows the curve well)

Before 1 she averaged the following
Height: 80% to 90%
Weight:60% to 70%
Head Circ: 99%

At 4 she averaged the following
Height:44%
Weight: 50%
Head Circ:97%

Now at 5 she averages the following
Height:32%
Weight: 35%
Head Circ: Off the charts (alot off the charts, following the 99% line it is the equivilent of what it should be at 8)

Am I right to be concerned???? I was so concentrated on her not gaining weight I never considered her height was not increasing proportionately. Her dad is 6"1 tall and I am 5"2 tall so could she just be short like me??? My understanding was that her curve should follow the same basic percentile. Also her head is huge, it is 54cm, mine is 56cm and her dads is 58cm.

So over not knowing whats going on....

 

[keista]

(((HUGS)))) Well, she's got all the dietary issues, right? Her failure to grow could be caused by that.

I can't believe the Dr didn't consider this an issue sooner. Well, actually I can. At 4 she was just below age averages, so she's "still OK" NOT. Yes, a child should reasonably follow their initial %ages. Most changes are usualyy gradual, but not that drastic.

by the way studies have shown that kids with Autism Spectrum Disorders (ASD) have larger heads than average.

 

[buddy]

She is not below average so that is good, my son was a chubby baby but spent from preschool on being under the growth curve for weight and height. He suddenly, since last summer has had huge growth spurts and is in the 80th percentile for body mass index. He is perfectly healthy but from going below the 5th to this in half a year is shocking!

BUT, last year when he was still so low at age 14 we did go to an endocrinologist to make sure he was ok. THey did a hand xray to see if he had overall delayed growth or if his bones were average and he was under the curve, turned out he was slow to grow overall so they just said wait till the growth spurt. And they were right.

As for the head thing, when he was a toddler, he did have a head that continued to increase and at age 2 he had the head size of an 8 year old (it is now perfectly fine).

So what I will say is scary but remember he had symptoms that made it clear there was something wrong.... he started having seizures at age 1.5 and they got worse and worse, his overall development slowed and he started having head banging and serious problems....

When he was 2.3 they finally got a neurologist to do a CAT scan and they found a huge mass and his internal pressures were super high. They feel they had been high for months. I know two other people that had similar issues so it is not unheard of but very RARE so dont freak out. Of course I would meet people like that because we go to therapy places where the odds are higher for me to meet such people.

If she is not having headaches, or seizures or any neuro signs I would not be worried. But it is pretty easy to check out if you are worried and not worth losing sleep over.... if you have any concerns about her growth or development physically of course, just like with the neuropsychologist evaluation, get a neuro and endocrine exam too.

 

[Ktllc]

I understand why you are concerned. I don't want to dramatize the situation but I would agree with you: she is not growing as you would expect. It might be just fine or their might be an underlying issue. At that point, you don't want to draw a disaster scenario, but maybe talk to the doctor and rule out possible medical issues (specially with the history of nutrient mal-absorbtion).
The head... she seems to be pretty constant. So, personally (just my humble opinion), keep an eye on it and have the doctor keep an eye on it.
Partner has a VERY big head, off the charts pretty early on (6months visit?). The doctor said they would monitor it. But since he is following the same curve, we just monitored. He is fine.
Bottom line: voice your concerns and be vigilant. Follow your gut!

 

[kailey47]

Thannks for your comments, I am still quite concerned about her height/weight mainly because I know how much she eats (more than most adults and constantly) and she has severe bloating, IBS symptoms etc. I strongly believe she is (and myself the more I look into it) is Dairy, Gluten/Wheat and possibly Yeast Sensitive. I am waiting til we have seen the immunoligist next month and then I will be doing the elimination diet. The more I read and research it is the only way I can know for sure what is causing her problems. I got copies of all her medication records sent up to me and looking through them today, her first bout of "gastro" was at 2 weeks and she has had it and other gastro issues regularly since then, even when no-one else in the family is ill. It is just so common now for her to have gastro issues that we see it as normal.

Between her vision problems & dietry issues I think we can account for the majority of the problems we are dealing with, so it will be interesting to see what if anything is left once we have them sorted. She does get headaches, blurred vision and a few other neuro symptoms but they can all also be linked back to her vision problems, and I do believe the bad vision is the cause of them.

I just wish time would hurry up now so I can see all these therapists and specialists and set an action plan in place so we can move forward. I hate this sitting in limbo part...