My 4 yo son, no definite diagnosis

[wendi_inbloom]

My 4 year old son, Scout, has many behavioral/emotional difficulties that have been excessive and extremely worrisome from the beginning. I don't really know where I am headed with this... just venting, I suppose... and hoping for some good advice:)

 

Currently, he sees an OT once a week for Sensory Processing Disorder-sensory seeking, a behavioral therapist once a week, a child psychiatrist once a month, and is taking 5 mg of Abilify. The Abilify decision was a very, very difficult one for me but I felt that the destruction the behavior was doing to his self-esteem (on top of everything else) was worth it to me to try... and I have been VERY happy with the results.

 

Preschool has been sooo hard. I am a single parent, and so I unfortunately require Scout to be in preschool/childcare... however, I work part-time at one job, and have a part-time business that I am able to do mostly at home. Scout is in preschool from 9-3 and I work during those hours. I started him in a morning preschool program 2 months before his 3rd birthday and 2 years later, he is in his 5th preschool. 3 preschools tried, but gave up on him... one babysitter kept him for several month but finally decided he was "too physically and emotionally exhausting." He is now in the preschool at our home public school, where he will attend Kindergarten next year. Dealing with the school and the IEP process was a nightmare, I am extremely dissappointed with our school districts special education program. HORRIBLE. After a ridiculous process that I won't even go into... Scout now has a full-time aid, all day, only for Scout. He attends preschool in the morning, then the developmental preschool in the afternoon. He supposedly gets OT consultation... which (in my school dist) means nothing.

 

Scout's symptoms are:

 

aggression/extreme impulsiveness... this has been a HUGE problem from the moment he could crawl. This is the reason for the full time aid (the safety of the other children). The abilify has helped this tremendously! His impulsiveness was so extreme I felt like I couldnt take my eyes off of him. I feel there is something in him driving him. In fact, you could see him clench his fist, grit his teeth... and I swear that you can sometime FEEL the tension in him. Even with the therapies and medication, the aggression is still a daily event... just not a constant struggle. But even at this time, when I am breathing a huge sigh of relief that he is doing sooo much better, I still have to pick him up for suspensions periodically and just got a 4 page letter from his teacher this week addressing her concerns.

 

negative attitude... Scout has a strange problem with never wanting to admit his likes, enjoys, is looking forward to something. It almost seems like he fears any type of attention, even if it is good. I have not had a birthday party for him the last 2 years, he says he doesn;t want one and will tell everyone to leave (and he would, he does this often if anyone visits us), took ornaments off the tree at christmas time and refused to every say even to ME what he wanted for xmas, etc. Little things too, for instance... tomorrow the kids are supposed to wear pajamas to school for fun and so Scout says he doesn't want to go and says he doesn't have any pajamas. I wonder if this might be anxiety that comes out as anger. I have panic attacks and have had since I was a child. He also has a very hard time communicating about anything about himself, even with me.

 

Social awkwardness... when attention is on him, he will either act very wild, or silly.

 

Short attention span... I hate this for him, he can't seem to even focus on something that he is enjoying.

 

The last 2 times he has seen the child psychiatrist she has said to me... "I really feel like I am looking at a Tourettes child, and I think we are just seeing it very early." I don't really see this... only because (from what I understand) Tourettes is characterized by tics. When he is in her office, the social awkwardness kicks in and he does start in with what I'm sure she is reading as vocal ticks. He will just make very silly noises, and repeat silly words. But I don't really think this is a tic.. I think it is just acting awkward. He does not have any physical tics. He does do, in my option, a little bit of stimulation type of stuff... shirt sucking, nail chewing... and he will (when in public or in wild mode) smack himself in the forehead. I don't know if this behavior is sensory seeking, anxiety, or what?

 

I have tried to tell myself that getting a diagnoses is not the important part, but treating the symptoms is. BUT... for some reason, I want solid answers. I take him to the behavioral therapy, he does play therapy alone with her and I don't get much feedback. Meeting with the psychiatrist is short, and it seems to just be a med check. I took him to Riley children's hosp for an evaluation almost a year ago and they too were reluctant to say much due to his age. Is there a magical age when I will start getting answers? Am I not dealing with the right people? Is there a neurological examination that can tell me anything?

 

It took me a while, but I am certain that there is SOMETHING wrong with my child, it's not just behavioral. Help:(

[Chemar]

Hi

I just wanted to welcome you and say how much I feel for what you are going thru

 

I have a son with Tourette Syndrome and he was around 4yo when his earliest symptoms started, but it wasnt till he was 10 that we got his dx and for me it really brought much relief as, altho it hurt to know my lil guy had stuff wrong, yet at least it gave opening for correct ways to help him so I sure understand your desire to find answers.

 

I hope others will be along soon to give you some specific pointers

[wendi_inbloom]

Thank you so much, Cheri:)

How old is your son now? I hope that the dx led to relief for him and your family. Would you mind if I asked... at 4, did your son have tics? I guess I am not sure why the child psychiatrist has said that. I don't know why I didn't ask that when she said it, but you know how it is when you are wrangling your child and trying to have a discussion about him, with little time.

[Chemar]

hi again

 

altho they werent diagnosed as tics till he was 10, yes, my son had tics from an early age, including eye blinking, eye rolling, squeaking, sniffing, tapping things, kicking repetitively against things and others that at the time we thought were habits.

 

however, when he was seen by a school psychologist at 4 going on 5, she did write in the report to "monitor for Tourette Syndrome and OCD" which at the time I found ridiculous as we had friends with a TS son. Even they told me just before we got the dx that they thought he had TS and I became a bit indignant

So yes, I do feel that TS can sometimes be spotted early on, but it is wise to keep watch a while, as so many other things can cause early childhood tics.

 

I have linked your thread here on the Tourette/tics forum too as I felt others may have some insights for you

 

Do also feel free to post there as it is a very active forum whereas this one is more quiet

 

here is the link

http://www.latitudes.org/forums/index.php?showforum=1

[Pamela Kay]

My son too, had some of the same issues. For him he was mostly very emotional and was very impulsive. I had a hard time teaching him things as well. It was like his brain was all fuzzy. The final straw for us, that made me seach for answers, is when he developed tics and his teacher suggested holding him back. Then one day my son said "What if I am just not made to learn". That broke my heart and I promised him that we would figure it out. At the time I though he was dyslexic.

 

When I first started looking for answers for him I came across a book by Doris Rapp called "Is this your Child". It talks about foods and environmental factors causing inappropriate behaviors in children. I am not sure how you guys eat, but before I read this book we had alot of processed foods honestly we just pretty much ate junk. I first started off eliminating high fructose corn syrup and artificial colors. His attitude changed greatly. His teacher was no longer concerned with holding him back either. Eventually I eliminated things down to corn in general. I finally had the courage to get him tested by a allergist and sure enough he really is allergic to corn. Well that explained alot! The book also explains food intolerances which would not show up on a typical allergy test. My son still has tics and issues from now and then but I know I am on the right track. I strongly encourage you to look into foods. My motto at first was it cant hurt to try. I will tell you it was hard but so worth the results.

[wendi_inbloom]

Hi, Pamela... thanks so much for the advice! I will definitely check that book out. I did have Scout tested for food allergies about a year ago, including corn. He had a mild allergy to milk, the Dr. said it was very mild and he didn't think it would be causing him any problems... but I removed it from his diet for a while and didn't see a change. I am considering taking him to another allergiest... the guy we saw was very old school and told me that he did not believe that allergies would cause behavioral problems. He did not test him for food dyes, which was one of the things I really wanted to check into.

[Pamela Kay]

Honestly I don't think there is a test for food dyes. In regards to his previous tests even if your son does not show "allergic" he could still be intolerant. I was lucky enough to have an allergist tell me before he tested my son "even if he does not show up allergic to corn still avoid it if you notice he is having problems". I really liked the allergist until he prescribed meds containing corn twice! Of course most medications have corn in it anyway.

 

How long did you eliminate milk?

[faith]

Hi Wendi,

I am from the tics/tourettes board, I'm not exactly sure if you are dealing with any tics, but I do believe some of the issues and symptoms you mention about your child could possibly be relieved somewhat with some of the natural treatments and dietary control that many of us are using for our tourettes children. Many of us have different issues with our children too, such as ocd behaviors, adhd, repetitive behaviors, etc.

 

Pamela Kay has given you a good start with her advice on trying to see if different food restrictions, especially artificial stuff like high fructose corn syrup and artificials dyes help any. I do believe that some of your child's behaviors will in time get better with maturity and age, but it would be wise for you to look into things that could help in the meantime. My son is almost 9 and has motor and vocal tics along with some ocd, however, I do believe since being on this path of watching what he eats and eliminating things he is sensitive to along with some supplements that address certain things, that he is much better than what he would be if I did not. He used to be very headstrong, and I do believe that at least behaviorly, we don't have that many issues. Now we are not 100% tic free, but there are so many variables here that it is hard to get to the bottom of their health problems with just one magic bullet. I think you should peruse some of the posts on the "tics" board, especially the topics that have the word "new" in them, for they are the first posts from parents who are new to the idea of natural treatments and are just starting out. There will be alot of advice from the members on there that you could follow. You will also have to do your research and experimentation on the things that you feel you could try. It sounds overwhelming at first, but just try a few things that you are comfortable with and think you could implement with your lifestyle. I understand you are a single parent, and so money may be tight to have any testing and alternative treatments, but there are lots of things you can start at home, especially with dietary restrictions and some supplements that are not that expensive. I would strongly urge you to look into giving him magnesium and you could read about this on the site "kids calm" or "natural calm". Many use this for their child and it seems to help. Also get rid of things that have the high fructose corn syrup, and junky drinks and juices, stick to natural juices and water. If you could observe this for at least two weeks, you may see a difference in some of his behaviors, and then you will have to take it from there, for as Pamela stated, you will know you are on the right track. The book she mentioned "Is this your Child" by Doris Rapp will be a real eye opener if you could get your hands on it. Try your local libraries.

 

Blessings

Faith

[CarolynN]

Hi Wendi,

 

I asked a wonderful friend of mine, whose son is autistic and has had TREMENDOUS success at treating him, if she would respond to your question. She is not a member of the forum but she e-mailed me. I have to say she has been such an inspiration to me with my son, who has tourettes. She has dedicated herself to finding answers for her son and she has not only helped her son but so many others. So I have attached what she e-mailed and here is her response ..............

 

Wendi,

 

First I want to tell you that I know exactly how you are feeling. It is scary and overwhelming to say the least. My heart breaks for you. There is nothing worse that knowing that your child needs help and not knowing how to go about getting help. Have you taken your child to a developmental pediatrician for a complete screening? Has anyone spoken to you about your son possibly being in the autistic spectrum? I know that autism is a scary "word" however, the spectrum is very broad. I have a son who is considered high functioning autism. I too, know what it is like to know in your gut that something is wrong, and to be looking for answers. Not knowing your son, I can only tell you what I have done for my own son who in the past 3 years has improved dramatically!

 

Have you ever heard of a DAN doctor? DAN Drs. treat children with neurological disorders biomedically. There are key things that seem to be common in children with neurological disorders such as:

Vit B deficiency

Zinc Deficiency

Enzyme Deficiency

GABA, TAURINE, other amino acid deficiencies

Gut problems--inability to absorb nutrients from foods

Allergies to gluten, corn, soy, dairy etc.

Yeast issues

 

These are just a few of what come to mind but there are definitely more. The DAN doctor will help you heal your child's gut, identify deficiencies and allergies, and provide supplementation. Naturopaths and Homeopaths can be very helpful as well.

 

I am happy to hear that you have found a medicine that is helpful. However, in the mean time, you may really want to get to the bottom of why he needs the medicine. The biomedical and natural approach will help you do that! So that you can help heal your child rather than just survive the symptoms.

 

Also, as far as the attention issues go. There are a few natural supplements that are incredible for attention issues. PS100 (phosphatidylserine) and GPC (GlyceroPhosphoCholine) In addition, finding a developmental eye doctor as well. These doctors not only do your typical eye sight screening. They also have found a connection between the way that the eyes work and how the brain works. My son wears glasses. Not for sight but for vision and focus. It sounds very confusing but he actually has prisms in his glasses that help him focus when his eyes want to wander. They have found that these prisms actually relax the brain and allow the children to focus.

 

I don't know if anyone has told you about how drastically changing your sons diet might change his life. For many children gluten and corn act like morphine in their bodies and therefore you find the erratic behaviors of a drug addict. Changing my sons diet was the first step in changing his life. Was it difficult? YES, I wont lie to you. Was it worth it? YES Would I do it again? YES You do not want to do the diet without being under a doctors care because other deficiencies can develop.

 

It is wonderful that he is receiving therapy for sensory issues. Sensory is often affected greatly with these children. So much of the biomedical therapies can help with the sensory issues as well as anxiety issues. GABA and Taurine made an incredible difference in the severity of my sons anxieties.

 

My son HAD severe obsessive compulsive, ADD, anxiety, explosiveness, sensory issues, and impulsiveness. After 3 years on a very strict diet, 2 years seeing a DAN Dr., two years seeing homeopaths and naturopaths, biomedical treatments, enzyme therapy, and allergy elimination. I now have a very different son. It has been very overwhelming and exhausting and expensive but so worth all of the sacrifices. I feel like I have recovered my son!

 

I know that your head must be spinning right now with all the information I have given you. Not being a doctor I cant tell you what your child needs. However, I can suggest where to begin to find it:

 

1. Find a DAN Dr.

2. Find a developmental pediatrician

3. Find a developmental eye doctor

4. Find a naturopath/homeopath

 

Unfortunately, the answer is not to just choose one. All four of these avenues working together should be able to help your son. I know how overwhelming it all is. Just take one step at a time. Ask a lot of questions. Take notes each time you talk to a doctor. Listen to your gut. You know your child better than anyone else. You are his advocate. You DO have the ability to help him. You just need to keep looking until you find the right people. I know how exhausted you must be emotionally especially being a single parent. But keep pushing for your son and it will be worth it! You can change his life. Early prevention has proven to be VERY beneficial in helping these children. The sooner their developing bodies receive the help they need the better chance they have of a full recovery.

 

Getting a diagnosis could also get you help from DDD which would provide you with services such as therapies as well as respite care which would give you a much needed break. I apologize for all of the typos. It is late and I don't have a lot of time and my mind was going much faster than my typing fingers.

 

I wish you the best. Hang in there. You and your son WILL get through this!

 

Eve

[wendi_inbloom]

THANK YOU SO MUCH FOR THESE RESPONSES:)

 

I guess my question about the DAN Dr would be... how do they determine if a child has deficiencies or intolerances? Can they do testing, or is it trial and error? I am not asking to sound skeptical! Just wondering what to expect. It was really hard for me to decide to go with the abilify. Scout had been prescribed a similar drug by our pediatrician more than a year earlier and I decided to try the allergy testing, OT, behavioral therapy, and got a second opinion from Riley Children's Hosp. Through the guidance of our wonderful OT, we had tried natural approaches with no benefit. Once the school situation became a state of emergency (was told he could no longer attend the public preschool, this after multiple IEPs were not carried through at all, I had to file Due Process)... my OT and I agreed to try the meds. I have a very close friend who is an MD, there were a couple of natural recommendations I was considering and he felt could be no less risky than trying abilify. I don't mean to sound like I would not be willing to try something new... I will try anything to help him. I am just frustrated because I feel like with the human body, if something is going wrong... why can't I know exactly what? KWIM? Like with the abilify, I do feel that the fact there was such a huge improvement right away is evidence it is working directly on the problem. But if his problem is a chemical imbalance, isn't there a test to show me that? Isn't there a blood test to show blood levels and if there is a problem there?

[CarolynN]

Hi Wendi,

 

Here is Eve's response to your questions. Again she e-mailed me these answers since she is not a member of the forum.........................

 

Wendi,

There are many different types of tests. My son has done blood, saliva, urine, and even stool (to look for parasites and yeast). Each type of screening shows provides different information. All of the tests that I have done have been covered by insurance. Your doctor would be able to guide you in the right direction based on your sons symptoms. Many of these tests are not done in your typical doctors office. They have been done by DAN Dr. and naturopaths. They look so much further into your system for the problem than the standard blood tests. Also, regarding allergies. I dont know if you have ever heard of the NEAT program or the NAET program. My son has gone through the NEAT program and I have found it to be very beneficial. It is a very non-evasive test that combines kinesiology and accupressure. It is a pretty amazing procedure. There are no needles involved. NOthing would hurt your son. There is also the SAGE allergy testing which is done through the blood. It shows not only allergies but sensitivities and not only immediate reactions but also delayed. Again, there is only the blood test and no poking on the back. Both of these methods provide far more possible allergens than your traditional needle poking method.

 

Hang in there,

Eve

[wendi_inbloom]

I am having my Dr friend call in a blood test to the hospital. He has a list of things he wants to check for. I am also considering an MRI. My son has a grant through our hospital that would take care of any bill through that hospital. It pays for his OT. I am just going to make sure about the MRI first.

[faith]

Hi Carolyn,

I am curious, could you ask your friend Eve if she did the NEAT/NAET on rec from the DAN doctor, or just did that on her own? I ask because when I inquired to our DAN a while back about NAET, he said he did not think much of it (although he also did not think much of the Igg type testing as he thought they were unreliable, but I went ahead with that anyway through a Naturopath).

 

 

BTW, I was just looking at these Barbara's crackers that I mentioned my son has been eating, and I see the last ingredient says "enzymes". That is another name for msg, right? I'm afraid it might also be a hidden name for corn. Now im pissed. He's been eating them all week. I don't know how I'm going to get a handle on all these hidden names, I think everything you buy has something in it I'm trying to avoid, even the stuff from the healthfood store.

 

 

Thanks

Faith

[CarolynN]

Hello Faith,

 

Eve went through these treatments based on my recommendation. She has been real impressed with the results. She ended up doing the treatments herself and having her other son do the treatments because of the results of her son who had very severe allergies.

 

I can tell you one of my other friends had a chronic cough for years. After the treatments the cough was gone. My daughter, as a baby, had to have her nose suctioned every day. After I had the treatments on her that all went away.

 

Another example, another friend of mine took her son who has cerebral palsy and has severe allergies. It was so bad he started severely scratching his eye area. After the treatment this went away.

 

Another friend of mines daughter had VERY severe dairy allergy. After the treatment she was able to tolerate milk in small amounts. Her son had VERY severe seasonal allergies and after the treatment it was the first time in his life he did not have to take allergy medicine in the spring time.

 

The only thing I cannot answer for you is I know that NAET is very similar but I do know there are some differences. For example, with NAET they test for just a very few allergies per treatment. I think it can take many, many visits to get through the treatments. My doctor does all the allergies in 3 visits and uses a computer with a "rod" that touches your hand and the computer tests for the allergies. She then from the information she gathers does the acupressure and desensitizes with homeopathic beads (I know it sounds so bizarre but it works. I didn't really believe it until I saw the results). Also know that the treatments my friends and my son went through are not necessarily permanent. It is sort of like a chiropractic situation where the body may try to start rebuilding the allergy after some time. Some people could go years with out needing to be retreated and other may have to a few times a year.

 

Regarding the MSG in the enzymes. What I have read is MSG can possibly be in the enzyme called protease. Protease, from what I gather, helps break down proteins. But with this said I e-mailed Dr. Houston who has devoted his career to developing enzymes said no this is not the case at least in his products. But I did read about the MSG link to protease to a book called "Excitations the Taste that Kills". It is all about how horrible MSG/Aspartame is for out bodies.

 

If this helps any, as you know, Daniel's greatest sensitivity is MSG. So you could say if anyone would be a good test person for MSG in a food it is him. He has never reacted to a food that had the word "enzyme" in it unless it happened to have other ingredients in it that would bother him like food dyes, high fructose corn syrup, or of course MSG in another part of the ingredients. He did react to the enzyme "No-Fenol",which I use as a supplement to help process artificial food colors, but this absolutely has no MSG in it. He reacted because it was killing off toxins in his body and his body was have to process these toxins. I just had to back down on the amount I was giving him and he is doing great.

 

Going back to the NAET treatments I think that most important thing is finding a doctor who is very experienced. From what I understand you can get a big difference in results if the doctor does not know how to position the body correctly. If you go on the website at www.naet.com, you can pull up the list of physicians that perform it around the country. You also can review how many "training sessions" they have had. Some of the doctors you will see have had many and some very few.

 

Have a blessed day,

 

 

Carolyn